MomOfThomas

Wait. I have a blog?

2011-02-09T12:43:00.000-08:00

A friend recently signed up for a blog of her own, which reminded me that whooooops, I do have a blog! Sorry for the year+ delay in updating this blog. I will come back soon to post an update.

It's me again...

2009-11-10T18:47:00.000-08:00

As always life is busy. But life is good.

Thomas is flourishing in kindergarten. He has an awesome teacher. They have loaned him a communication device called a "Dynavox". It is fairly easy to operate once it is programmed and he is a rockstar when he uses it. It has made life around here a lot easier and less frustrating for all of us.

Jacob is growing fast and doing things ahead of schedule. It's a relief to have him reach milestones early, but bittersweet because I see in him all the things Thomas could have been. Everyone knows I love Thomas as he is, but Jacob is the spitting image of his big brother and to see him doing things already that Thomas still cannot do (sitting on his bottom on the floor) is bittersweet. It's like seeing the baby Thomas *should* have been. That seems so horrible to me to say that, but it's true. That is what I dreamed of for Thomas.

Meanwhile Thomas has taken well to being a big brother. He loves Jacob and is so sweet with him. Jacob adores Thomas and loves any bit of attention Thomas will bestow upon him. Those are the moments that make it worth getting out of bed in the morning.

Bad Neglectful Blogger

2009-10-23T18:46:00.000-07:00

Life with a newborn and a special needs child is a challenge. But now that the baby is almost 6 months can I still call him a newborn? Sorry to whoever still reads along for the lack in posting. Life just gets away from me (if you could see my house right now you'd understand what I'm saying and know that it's true!).

I, once again, will promise to try to get back to blogging as regularly as I can manage. I am now working part time but it feels like full time after all is said and done. Thomas is in school full days five days a week! Jacob is growing like a weed and I can tell already that I will be in for it with him in ways I never experienced with Thomas. I'm excited about that, and to be truthful I'm also a little scared!

For now here is a little peek at my gorgeous boys. These pictures were taken about two weeks ago (by me! I'm a wannabe photographer).

Pictures!

2009-05-22T04:50:00.001-07:00

My Handsome First Son What's in here?

T and his silly self trying on his safety glasses:

Jacob, the little sweetheart!

Sleeping, it's what he does all day.

Brothers

The past 5 months in a nutshell...

2009-05-22T04:37:00.000-07:00

Well what's been going on in the past five months? LOTS!

1. Thomas turned SIX and had a fabulous birthday party with a bunch of our family friends. He got way too many presents and our house is overrun with all of his toys. Books were (and are) still his favorite items to receive, but he also really liked the "power tools" he got from Grandma Sue.

2. On Thomas' birthday I went to the doctor and was put on bedrest. Turns out my cervix was "funneling" and so I was ordered off my feet as much as possible. I was allowed to continue working, which helped to make the days more bearable.

3. Thomas now knows the entire alphabet. He can identify every letter upon request in any order. He is using his PECS (picture cards) to let us know what he wants (such as orange juice or chocolate milk) and can use them to make complete sentences (such as "I want to go outside please").

4. Thomas now can do the sign for YES. He does it in his own way, which is close to the correct way. He's been doing it for months but I only learned yesterday that he meant YES when he does it. Even so it has made life a lot easier in just the few hours I've known what it means. He picked out where we should go to lunch yesterday using yes and no, and when I asked if he loved me he said yes!

5. Toward the end of my pregnancy (the last three weeks) I was put on complete bed rest. That meant no more going to work, no lifting, no anything. It sucked! I spent a week in the hospital trying to stop labor, and it worked. I managed to keep the baby baking until 35 weeks and 6 days.

6. Jacob Gary was born on April 30, 2009 at 4:49 a.m. He was 6 lbs 0 oz and 19.5 inches. I had another quick labor. My water broke at 2:30 a.m. and contractions started immediately after (every 2 minutes). Jacob came out at the hospital, delivered by my own doctor, after just three pushes. He is now three weeks and 1 day old and doing great. He came home with a bit of jaundice one day after I was released. He had a billi-blanket for just one day and is doing great. Thomas loves him, and has pleasantly surprised us with how little jealousy he shows and how much he seems to like Jacob.

And that's all the major things. During my stint on bedrest Thomas and daddy did lots of bonding and now have a really close relationship. Thomas also became more social due to all the visitors we had here helping out, especially my sister and my mom who spent the most time here helping.

I'll attach some pictures in a seperate post.

Lost Password Recovered

2009-05-22T04:35:00.001-07:00

Hi all! I have to apologize for the huge amount of time that has passed since my last blog entry! I had forgotten my password and in the craziness that is life just had no time to spend worrying about it. But I've got it now and plan to try to post regularly once again.

Thanks for your patience. :o)

Speech & Other Updates

2008-12-30T02:39:00.000-08:00

Thomas had his last speech appointment yesterday. It was kind of sad but in a way I'm glad to have one less appointment each week. But I was able to show his therapist something cool he picked up over Christmas. His teacher sent home a bunch of sheets with pictures on them. The first row contains "I want" and two other things like that. Then there are three rows of activities and the bottom row says "please" "all done" and something else. I think it was on Christmas Eve that Thomas and I were hanging out waiting for others to wake up and I showed him "I want" "to read a book" "please" and he picked it up right away, all day he would pick up his sheet and point out "I want" "to read a book" "please". Between myself, Aunt Erin, and Grandma Mary we must've read at least 20 books a day. So anyway, yesterday at therapy I took that sheet and asked Thomas what he wanted to do, and of course he wouldn't do it. lol Well his therapist uses a laminated piece of posterboard with velcro on it and the same type of images cut out with velcro on the back for him to choose which activities he wants to do next. It so happened that there were three activities on the board that matched the sheet we brought with us. His first pick was "cards". Well she was supposed to be doing his end of therapy evaluation to show the insurance company how far he's come, so she wasn't really going to do the activities on the board (he got ticked when she didn't have it set up so she set it up just to appease him, Thomas apparently likes having a routine). Well he picked cards and she didn't do cards, so he grabbed his sheet and pointed out "I want" "cards" "please". LOL If he could've talked I can only imagine what he would've been saying "lady, I picked cards so lets do the darn cards!". LOL So she did work on some cards with him after he asked so nicely. After the evaluation he also chose book, which he then pointed out on his sheet ("I want" "to read a book" "please") and then a game ("I want" "game" "please").

It was pretty awesome. I need to decide what other card combinations I'd like made up and see if his teacher will do them up for him to use at home. I'd like to come up with a system using poster board or something to have all the words and commands with all the options and choices he could want permanently placed somewhere in the house. We could do food items using magnets placed on the fridge. I'll have to give it some more thought.
It may not be actual speech, but it's finally an effective way to communicate without the whining and frustration of not knowing exactly what he wants.

Since it has been a while since I've done a Thomas update I can also share that he has mastered the art of shaking his head "no". (Something I've been working with him for literally years) Now that he can do that and knows what it means he is constantly answering questions with an enthusiastic shake of his head. If only he'd get "yes" down too we'd be all set. Right now he is the king of NO. lol

For Christmas we got Thomas a "George" in the box (like a jack in the box, but with Curious George instead of Jack). It took him about ten minutes to master the art of turning the crank. That's a huge thing, at first he couldn't do it at all, now he's a pro, and it requires he use his right hand, which he rarely does, so it's a double bonus as far as fine motor therapy goes.

That's about it for Thomas updates this time around. He is doing so well and learning so much. It's still so exciting every time he learns something new and to see the excitement and pride on his face as he realizes just what he has learned.

If you made it this far thanks for reading and thanks for sharing in my excitement over Thomas' accomplishments.

The boys got skills...

2008-12-09T04:34:00.000-08:00

There's not a whole lot to complain about here in Thomas' world. He is doing great in school, and while he never wants to actually get dressed to go, once he's on his way he's happy as a clam. I'm still bribing him each morning with new books (thank goodness for Goodwill!), but hey, we do what we gotta do. Speech therapy is going well, and while he's not talking, his communication skills have improved so much that life around here has gotten a lot easier.

The other day I was sitting near Thomas and asking where certain body parts were, and he correctly pointed to my toes, feet, knees, tummy, hair, head, and when I asked where my mouth was he leaned in and gave me a kiss. I counted that as correct. ;o) He gets confused on eyes and nose however, so we're working on that.

On the baby front, after another couple ultrasounds I am pleased to announce that there is one healthy dancing baby in there. I was sad that the second baby pulled a vanishing act, but one will be easier on everyone, including Thomas. I know he'll have a hard time dealing with having to share the attention, the toys, and *gasp* his books! But we'll get through it. When I ask him where the baby is he will point to my belly, which is so so cute. If I'm too far away when I ask, he'll point to his own belly. LOL I'm getting ready to start weekly progesterone shots to help reduce the risk of another preterm delivery. I'm hoping to find out the gender at one of my weekly ultrasounds that are about to start soon too. Then I can start the serious shopping!

That's about it. We're getting ready for Christmas and I must say I am not prepared at all. I still have gifts to buy and nothing has been wrapped. We took a gift to Thomas' speech therapist yesterday and he got mad that he couldn't open. (really what would he have done with a Yankee Candle anyway?) So I think after I do get the gifts wrapped I won't be able to put them under the tree, because Thomas will open them all the first chance he gets. The tree has been up since the day after Thanksgiving, and he is finally leaving it alone - two broken and one missing ornament later! Don't even get me started trying to count the number of candy canes he has snuck off the tree!

Thomas' daddy and I both turned 30 in November. I don't know if it's the pregnancy or the number but I'm definately feeling OLD lately. I'm guessing it's a combination of both.

Proposition Two

2008-11-12T05:12:00.000-08:00

The people of Michigan have spoken. Majority rules and so, it is with great relief and pleasure that I can say Proposition Two has passed!

For those not living in Michigan, Proposition Two made it legal to use embryonic stem cells for research. There are strict regulations on this research, such as the embryo must be one which the people who "own" it have decide not to use it and it will otherwise be discarded. Also, it must be less than a certain number of days old before being frozen. Also the "owners" will have to sign a consent form for researchers to use their embryo's.

I realize this is a controversial issue. Pro-life people think it is as bad as abortion. I am not going to get into that. What I am going to get into is the potential this research has in curing disease's that as of now are incurable. Stem cells have the potential to treat and cure Multiple Sclerosis, Parkinson's Disease, Diabetes, Heart problems, CEREBRAL PALSY, and the list goes on and on.

My husband and I are actually going to bank the cord blood stem cells from our new baby and have them injected into Thomas. I have heard stories of children like Thomas, who could not walk or talk, receiving stem cell injections and actually growing brain tissue. The result: they can now walk and talk. Such a simple thing to do, a painless procedure, that can mean so much to a little boy who doesn't yet know that he is different, and a family who knows how hard life is going to be for him.

So thank you to all in Michigan who voted yes. Controversy aside, this research could save and improve millions of lives. Including that of my little boy.

A lot of NEWS!

2008-11-12T04:41:00.000-08:00

I have woefully been neglecting my blog. I admit it. However there has been a lot going on around here to keep me busy.

Thomas has completed 8 weeks of pt/ot and is working through his second 12 week session of speech therapy! After all these years of fighting with insurance companies we finally have one that was willing to give speech a chance. They approved 12 visits, and his progress was so good they approved an additional 12. Now, he's still not speaking, not even a single word, but he is comprehending, understanding, following directions, pointing, and making his wants and needs known. It is a huge accomplishment and I am so proud of him!!

We also just received a new set of AFO's, nighttime splints, and a pair of Hatchback shoes for my growing boy. The splints were covered 100% between our two insurances, the Hatchbacks were out of pocket. $65 well spent I would have to say. If you haven't heard of Hatchbacks, they are a pretty neat shoe that actually can be semi-bent to fold open at the sole so they are easier to put on. They are a little wider than regular shoes as well to fit over afo's.

On the momofthomas front, I started a new job. It is a wonderful position in which I help mentally and physically handicapped people to be able to use their computer for fun, work, school, etc. I go to their homes, install hardware and software which makes it easier for them to use their computers. I also teach them different software programs to help with everyday skills they need to get through the day (reading, math, etc). It is a very rewarding job, and the pay is great, but the best part is I can make my own schedule. I work only while Thomas is in school and am home to get him off the bus. I love it! That is the main reason my time here has been limited and some online friends are feeling neglected.

And possibly the biggest news of all: We are expecting a sibling (or maybe two!) for Thomas! Soon I will be momofthomas&____________! I am almost 12 weeks along, my due date is May 30, 2009. At my early ultrasound (I had spotting so they did an ultrasound) they discovered TWO fetal poles! The doctor says there is a chance one of the twins will be what is known as a "vanishing twin". However, at not quite 12 weeks I have already outgrown my regular jeans, even though I have lost 2 pounds. Either it's twins in there, or Godzilla. LOL

I'll post more about my pregnancy later. The doc thinks I have what is known as either a uterine septate or a bicornuate uterus. I have an appointment with a specialist next Thursday to find out more. I'll try my hardest to get back here and update y'all on my progress.

Back to School

2008-09-06T05:17:00.000-07:00

It's back to school time. Thomas was taken by surprise and was not happy about this change to his daily routine, which consisted of waking up when he wanted and relaxing in bed until he felt like getting out of it. It was a shock on the first morning when I had to wake him and instead of lounging in his pj's he had to get dressed and head out the door.

He broke my heart with his tears, which lasted until he saw the bus. Thankfully he loves school busses and was almost excited to see it. Once he and his stroller were on the lift heading up to the bus, he had stopped crying. When I got to the school with his personal supplies he'd need he had already arrived. His teacher said he wasn't neccesarily happy to be there, but he wasn't crying either.

Day two went a little better. I was better prepared for this morning, with a brand new book he could take with him on the bus. He cried when I got him dressed, cried when I rolled him outside, but slowly became all smiles when I pulled out that book.

When he got home I had to put him right in the car and take him to a pt/ot evaluation, but before we got there I took him to Goodwill and we bought probably 25 new-to-us books to help make the next month or two of mornings go as smoothly as day two.

Wiggling through the years...

2008-09-06T04:24:00.000-07:00

Thomas discovered the Wiggles when he was two years old. We were visiting someone who happened to have The Wiggles playing on her tv. After that he just couldn't get enough of the fab four from down under. They have done so much to help his development and it doesn't hurt that they are fun to watch. Thomas first learned to clap by watching and imitating them as they sang "Everybody Clap". We had been working on clapping for over a year in physical therapy, and it only took the Wiggles a few weeks to get him doing it.

Now that Thomas can point, he can correctly identify each Wiggle by name and by color, as well as Wags, Dorothy, Henry, and Captain Feathersword. He loves when I help him follow along with the dance moves, and when I need a smile for a portrait I can almost guarantee one by doing a Wiggly dance.

I took Thomas to his first Wiggles concert in 2005. I learned that the Wiggles host Meet & Greets for special needs children before each show, and was lucky enough to get one for Thomas. Thomas was not in a good mood when we arrived at the venue. He was in an even worse mood as we stood in line waiting to meet the Wiggles. At that point he didn't understand where he was or what was going on. He was screaming and crying and just an overall mess. We were at the end of the line so he couldn't see the Wiggles until the very last minute.

We finally got our turn and I said to the guys "I'm so sorry, he is not in a good mood today" and of course the Wiggles were great about it. They all spoke at once to tell us it was okay. As soon as they spoke Thomas turned his head from my shoulder and stopped crying mid-scream. He was in total and complete awe. He couldn't stop staring at them long enough to even look at the camera. It was such a great moment, and one of those forever memories you know will always be cherished. Thomas was so happy that day, the entire concert was spent with a constant smile stretched across his face.

We went to a second concert that year, but didn't request a meet & greet. Thomas still had the best time.

We have since been to 3 more concerts, one per year. By the third year Thomas was so familiar with the venue that he automatically knows what we are doing when we get there. He gets so happy and wiggly in his stroller. Each year I have applied, and been approved for, a meet & greet with the Wiggles. Sometimes I feel bad about being a meet & greet hog, but when I see the joy on Thomas' face, it doesn't matter. I will do anything to put that smile on his face and that memory in his heart. As long as he loves the Wiggles, we will go to their concerts and if possible meet them before the show.

First Concert and meet & greet in 2005.
Also in the picture are my aunt and cousin.

Third Concert - 2006
with our friend "Wiggly" Jo, who makes all our concert attire.

Fourth Concert - 2007

Fifth Concert - 2008

Summer Vacation

2008-08-04T20:31:00.001-07:00

I must say, I am enjoying my summer "vactation". Although it was kind of forced upon me with the absence of our babysitter, I have embraced the time off and been pretty productive with my time.

Thomas is enjoying have his mom home every day. Sometimes he will even work with me on learning to identify shapes. Mostly we just hang out. He loves to come back to my home office and play around while I work on web sites. Occasionally he crawls on my lap and types emails to his grandmas. I'm not sure which language he is using, but they seem to be able to interpret them pretty easily.

Meanwhile I am quite busy with my web design business. I was hired to do another site that could lead to many more, I completed a site I had in progress, and did updates to another. Now I am just waiting on my clients to send me my money. My business is in the black which is great! I won't be able to support my family with it anytime soon but it's a good start. Now that I'm home I have more time to learn some new programs that will eventually make my job easier.

So all in all losing our sitter turned out not to be so bad. I've even managed to squirrel away some money into our savings account! Go figure! I manage to save more money when I'm not working than I did when I was.

It might not be so bad...

2008-08-04T20:26:00.001-07:00

Saturday Thomas goes for another round of botox injections. Do you know what that means? it means I managed to win against an insurance company for a change! He gets to go to the same botox doctor that he has been going to for almost two years now.

YAY!

Turns out that the insurance company is letting us go to him under the "continuity of care" clause. However I found out they actually don't have a pediatric physiatrist signed up with them, so they really had no choice. Now they are trying to recruit our guy to be one of their members. Whatever the reason, we'll take it. Such a weight has been lifted off my shoulders with this decision.

Thanks for all the prayers and positive thoughts you all have sent out for us over this situation. They are much appreciated.

By the way...

2008-07-25T19:47:00.000-07:00

If you've read my post "Anyone know a good babysitter" then you'll understand why I am posting this link:

http://www.littleladydesign.com

It is for my web site design company that I recently started up. Granted I don't know everything there is to know about web site design, but so far all of my clients have been happy with the job I've done. If there's something I don't know how to do I research it and learn how to do it. My prices are reasonable and generally cheaper than pretty much anyone else out there.

So, this is my shameless self-promotion. If you know anyone wanting a web site of their very own, send them my way!

Anyone know a good babysitter?

2008-07-25T19:21:00.000-07:00

Well, it seems I am on vacation for the rest of the summer. My babysitter, who was on unemployment after being laid off from her full-time job, got called back to work. She got the call yesterday that she was needed today, Friday. I too was needed at work today. Unfortunately I don't have anyone else nearby who can watch my little rugrat.

For five years I have been a stay at home mom. Mostly by choice. Before Thomas was born my hubby and I decided I would take a year off to be home with our son. When Thomas came out 8 weeks early and ended up having problems, we knew we had made the right decision. 18 months, and hundreds of appointments later, I was still a stay at home mom, only now I was the stay at home mom of a special needs child. I couldn't go back to work. For one, Thomas sometimes had appointments five days a week for months at a time. Occasionally those appointments would slow down to just one or two a week, and rarely we'd have a week with no appointments. Who wants to hire a person who needs to leave early every day or who needs every day off? No one, that's who.

Finally, five years into life with Thomas and I think I am ready to rejoin the work force. I find a job that is just a temporary position, which is a great way to test the waters and see if this will work. It's got to work. Ater five years on a single income things are getting tight. Luckily my immediate supervisor is great at being flexible with my schedule and the job works out. Even more lucky is that I found a sitter who would come to my home and watch Thomas for very little money. Before that job ended I was looking for another job. This was working out okay, right? Why not shoot for a permanent position?

I found another job working for an insurance company for which I had previously designed a web site. The owner knew about Thomas and our special circumstances and promised flexibility with my schedule. Boy, if only she had known what type of flexibility I was going to need! Less than a month later I was giving her a zero day notice. "Sorry boss, I can't come in tomorrow, or Monday, or any day actually, until after Labor Day. Sorry."

Am I the world's suckiest employee or what?

Fortunately for me, my boss is pretty awesome. She didn't bat an eye and told me my job will be waiting for me, whether I can find a sitter again for the summer, or if I have to wait until school begins in the fall. If I were her I would have told me to hit the road and not look back. I think, in part, she feels for me because of Thomas and his special needs, and because she has a son with a different set of special needs.

So now I am wondering how on earth are we parents of special needs kids supposed to make it in today's world? A boss like mine is a rare find. There are few jobs that are willing to be so flexible. Besides that, I am once again without an income. It is now the burden on my hubby's shoulders to carry this family all on his own. We just can't do it. For five years he has been carrying us as slowly our saving's has dwindled to scary little numbers, and just when I think we are finally going to be okay, life happens.

I applied for social security for Thomas. I was denied because as a family of three we have an income greater than $1300 a month. Yes people $1300 a month for a family of three, and that is pre-tax income. That is what the government thinks a family of three can survive on. I can't possibly see how a family of three can survive on that income, especially a family of three in which one is disabled which means only one of us can work. I contacted a lawyer, surely that is just a ploy by the government to try to get out of paying. Nope, the lawyer said them's the rules so tough luck sweetheart.

Am I wrong to think something is not right with that picture? I guess I should be thankful we don't meet the income requirements to qualify, instead of whining about not qualififying. But the way things are going, we'll qualify before too long. Thanks Uncle Sam.

On a completely unrelated subject, did you know the President makes $400,000 a year? I'm sure he gets free healthcare in there too, as well as his own limo, airplane, house and all the other extras at no additional cost to him. Granted, the President's job is hard, and important. But ya know what? So is mine.

I Hate Insurance Companies

2008-07-17T18:25:00.000-07:00

I.

Hate.

Insurance.

Companies.

There, I said it. Now tell me any of you out there disagree with that comment, I would find it hard to believe. Recently my husband's employer decided to switch insurance companies. This meant I had to find a new pediatrician for Thomas and had to wait and worry if all of his specialists would be covered. Luckily they almost all are. All but one to be exact.

Unfortunately that one is the one I most wanted to keep. He is Thomas' physiatrist, in charge of managing his cerebral palsy. He is the second one we have gone to see and the only one we ever want to see again. This guy can deliver a dozen injections of botox in Thomas' legs without Thomas even shedding a single tear! He agrees with me, so far, on everything. We have the same views on treatment and on how I should let Thomas live his life.

I cannot give him up. I won't. I'll take out a loan, remortgage my house if I have to. In a world of so-so doctors who may or may not actually know what they are doing, this one is genuinely knowledgeable and up-to-date on all the latest treatment options. He travels across the globe to gain this knowledge. And now my insurance company won't cover him.

I. Hate. Insurance. Companies.

There is hope. I can possibly keep him under a "continuity of care" clause in which the insurance company will allow Thomas to continue seeing this doctor based on their history together. I'm nervous because it has been only 13 months since we found him, I don't know if that is long enough. Another loophole could be if there are no other physiatrists near enough who will accept pediatric cases. If I remember correctly there aren't any others around, except our old one who, when giving Thomas his botox injections upon which Thomas would cry his little heart out, would say "stop being a baby!" Ummm, hello?!? HE IS A BABY!

So, those of you who pray, those of you who meditate, those of you who sacrifice chickens or other livestock, please do what you must so we can keep our beloved Dr. Dabrowski!

:o(

2008-07-13T09:25:00.000-07:00

Short bus jokes aren't so funny when someone you love rides one.

Smarty Pants

2008-06-25T18:29:00.000-07:00

I have always known Thomas was smarter than anyone gave him credit for, but his recent accomplishments have surprised even me. Mr. Man has discovered the joy of pointing. He gets that little finger out and just starts pointing away. He loves to point to objects, colors, characters, etc. and have whoever is nearby tell him what they are. Now comes the smarty pants part. Thanks to his newly found skill, Thomas is able to demonstrate just how smart he is. If I ask him "where's red?" he will find something red in his book or on his sheet of colors and point to it. He can do this for red, blue, black, yellow, green, pink, brown, gray, orange, and purple. He can correctly identify about a dozen different animals. He knows all his Disney characters, and of course all the Wiggles and their Wiggly Friends.

Is this kid a genius or what? ;o)

Seriously, I did not know just how smart he was. I'm in shock and awe of his brain power. I have always known he had it in him and have also known he just needed a way to get it out. Now that he's found that way I am over the moon, and so is he! He is so proud to point and show everyone everything he knows.

The smile that lights his face could light the world.

Common Bond

2008-06-01T14:16:00.001-07:00

Finally I have discovered something my husband and my son both enjoy and can do together. Up until now they have had no common interests. Thomas enjoys Clifford, Curious George, the Wiggles, and picking his nose. Daddy enjoys none of these things, although he may pick his nose in private, I don't know...

So Saturday night we decided to give the local race track a chance to receive some of our hard earned money. The cost wasn't high and Thomas got in free, so if he didn't like it we didn't have to regret spending the money to get him in.

When we first arrived Thomas was in good spirits. He didn't know what was going on, but with a belly full of McDonald's french fries and sprite, he was ready to party. Upon walking in he spotted one of his new favorite things (as long as he isn't on it) - a bright yellow school bus. The bus was offering free rides around the track and into the pits for anyone interested. Thomas was content, more like downright giddy, just to watch the bus circle the track. When it was time for the race I got a little anxious. Would they cars be too loud? Would he get bored? Would we end up having to leave before the first race even ended?

Turns out I needn't have worried. Thomas was in complete euphoria, sitting there watching the races. The louder the cars the more excited he became, bouncing on first my knee and then his dad's. Wriggling, squirming, kicking his legs, he had to be passed back and forth between his daddy and mommy so they could each have a chance to relax before trying to keep that crazy happy boy from bouncing right off our laps.

It was truly a perfect moment. There aren't many things my boys can do together that they both enjoy. It's hard to find an activity that Thomas can participate in with at least a basic understanding of what is happening. It was thrilling to watch him as he watched the cars circle the track. My heart was full to bursting as I watched father and son sitting together, eyes following the cars around the track, both with huge smiles on thier faces.

And even though I am not a big race fan, I can't wait for the next one!

Those things he does...

2008-05-18T10:20:00.001-07:00

As I sit here, purposely ignoring my child, he is doing something amazing.

He is feeding himself. Yogurt. With a spoon.

Yup, he is feeding himself yogurt, with a spoon no less. If you don't think that is amazing then you are among those without a special needs child of your own, especially one with physical disabilities. This is truly amazing. He has done it before, but never for as long as he is now and not usually with such little assistance (interference?) from me. Yes, I am helping. I put the spoon in the cup and get the yogurt on it. He takes it out, makes it to his mouth without dumping it on the table or himself, sucks that spoon dry, then gently sets the spoon on top of the yogurt cup.

This is actually quite huge.

Less than a month ago he had an appointment at the brain function assessment clinic. The doctor tried to get him to do all sorts of things. He was shockingly cooperative and surprised me many times with things he was able to do. But one thing he wasn't yet doing was feeding himself. Whether this is because he just couldn't, wouldn't, or because he knew mom would, I don't know. But it is just something he wasn't doing.

However, as I sit here, he is doing it. I know I said that already but I am excited and can't stop saying it!

And while I'm on the subject of that brain function assessment (to which I have yet to receive the results) I have to say that this kid really did well. There were some things he couldn't do (or wouldn't). But I had to laugh when, upon being handed a small plastic bottle which held inside a small little sugar pill, and then being asked to remove the pill, Thomas tried and tried to get that pill out with his little fingers. When that didn't work he put the bottle into his mouth and tipped his head back, getting the pill out just as he was asked. That counts right? In fact I think that was the smartest way of doing it really, I wouldn't have though of doing it that way.

Other things he did were unscrewing a lid off a bottle, matching one image to it's duplicate which was included in a group of other images, removing his socks, and pointing. These are all things he doesn't usually do, not that I've witnessed anyway.

And while I'm on this hodge podge of a blog entry I must add that Thusday we got a note home from the teacher stating that Thomas was able to take a picture of a classmate and then identify which classmate it was by immediately seeking that classmate out with his eyes. She said he did it for each of his 8 classmates and it was obvious he knew who was who. Again, HUGE!

I am so proud of my little man. Proud actually seems like an inadequate word to describe how I feel about him. He amazes me daily and I am so lucky and so blessed to be his mom.

New Friends

2008-05-18T10:06:00.000-07:00

We went to a party at our friend's new house yesterday. Some of the wife's relatives that we haven't met showed up and I gotta say I LOVED their little girls. The littlest one thought Thomas was just the greatest thing and everywhere he would crawl she would get down on all fours and follow, then try to do everything he did. It was adorable. She was smitten. Then the older girl (4) had brought a bunch of books with her. well Thomas loves books so he was drawn to her. At first she hurried up and put them all away and hid them. Later in the house she asked me to read one to her so I was, then Thomas came up wanting to look at her books (they were Clifford, one of his new favorites after Curious George) so she shared with him. She'd allow him one at a time, and he figured out right away that he had to give the last one back before he could get another one. It was cute.

Most kids will try to engage Thomas at first, but will soon realize he can't play with them in the usual ways (or won't, whatever) and they will give up. The fact that these girls adapted their play to fit him just warmed my heart. it is honsetly hard to find kids like that. and honestly Thomas usually just ignores other kids anyway. but there was another little boy there who we see occasionally who had a ball and whenever it would go by Thomas, he (thomas) would try to get it to throw to the boy. well this boy wanted nothing to do with that, he'd run over and snatch the ball back. That is the behaviour I am used to. It breaks my heart when kids act like that. I know they are just little and most haven't been taught any better, but it still hurts. Luckily Thomas is a happy-go-lucky kid and it didn't bother him that the boy did that. But someday it will, and that is a day I dread. how am I supposed to explain that to him?

*sigh*

To the clinic we go...

2008-05-16T05:12:00.000-07:00

We are off yet again to the burn clinic. I cancelled last week's appointment and rescheduled for today. Unfortunately I did so while on my way to work and can't remember the exact time of the appointment. I'm sure they'll see us whenever we show up. I think it was around 10 or 10:30.

This will probably be the last visit. Thomas' foot has healed so nicely, it still has a ways to go but I think we are out of the scary part of worrying about infection and onto the part where it is more nuisance than anything else. Right now it looks like a big bruise. I find this odd, but have no experience with second degree burns and their healing process. I hope this is a normal stage as the blood begins working it's way through the new skin growth. We shall see.

Still Thomas acts like the burn never happened. He tolerates the twice a day bandage changes and doesn't even flinch when I have to wipe at the wound to get all the "gunk" (that's the technical term) off of it.

He's so strong.

I will take a picture of the burn at the clinic and post it in all it's ugly bruised-ness (That is too a word, at least in the momofthomas dictionary) and post it later.

Working Mom

2008-05-15T14:06:00.000-07:00

I had to think about my title. Working Mom. Aren't we all working mom's? I mean, being a mom is a job in and of itself dontcha think?

Regardless, I am now a "working mom." I took on a temporary job that is set to last 8 weeks. I have just completed my second week. It's been nice getting out of the house after 5 years of definining myself only as "Mom of Thomas." Having an income is nice too.

The first week was hard. The work was hard. Being on my feet all day was hard. Being away from Thomas was hard. But hardest of all was when I got home and Thomas wanted nothing to do with me. Hard was watching my baby boy look at me with tears in his accusing eyes. I can only wonder what he was thinking. I tried to prepare him for this, but really how do you prepare a child for something like this when explanations cannot be comprehended? At first I thought taking the job was a mistake. How could I do this to my poor sweet boy, how can I leave him in the care of someone I've only met twice? How can I entrust his care to someone else when I am the one who knows what each sound he makes means, I am the one who knows what he wants, I am the one he looks forward to seeing as he gets off the bus?

I went in on my second day because I had made a commitment and I needed to honor that commitment. But I wondered the entire day how Thomas would look at me when I got home. Tuesday he was being watched by a good friend who he was already familiar with. Would that make a difference? I walked in the door wondering what type of reception I would receive. Once again he didn't really want anything to do with me. His indifference to me tore at my heart. I told my husband I didn't know if I could continue with this job if it meant hurting Thomas like this, hurting me like this. I was granted some cuddles at bedtime, but then he began to cry as he was drifting off to sleep.

I have made a horrible mistake taking this job. I will have to quit. It's not worth it in my eyes, commitment or not I have to quit.

I decide to finish out the week and see what happens. We have agreed to work ten hour days so that our week is just four days instead of five. Wednesday I come home and am greeted with a smile. It seems Thomas might be getting used to this new setup. He is still not coming to me voluntarily, but will come when I ask him for a hug or a kiss. Progress.

Thursday is much the same as Wednesday.

Friday is my day off and Thomas and I get to spend the whole day together. Just me and Thomas. We go to the grocery store and McDonald's, then come home and watch the game show network. He cuddles with me, kisses me, crawls up to me and wants to be held. My heart no longer hurts. I think to myself "we can do this, this will work."

So now it is the end of another week of being a working mom. Thomas has adjusted so well. He is beginning to trust his Monday/Wednesday babysitter and has grown to adore his Tuesday/Thursday babysitter. My days are shorter because my team now knows what we are doing and can get things done faster. I get to come home earlier to my sweet boy and am greeted each day with smiles, hugs and kisses.

This job has taught me a lot about what it takes to be a working mom. To go to a job outside of the home all day and work until I am bone tired. Then to come home and take care of a child and a house. I have also learned that a full-time day job is not something I can do on a regular basis. I have managed to arrange all of Thomas' upcoming appointments for Fridays or Saturdays, but that isn't always possible. I will have to miss his end-of-year field trip. I may have to miss his end of year preschool olympics.

I am lucky to have a husband who is being very helpful with the housework. I am also lucky to have a husband who is able to support our family without needing additional income from me in order to survive. So while I am enjoying being a working mom, I am looking forward to returning to my stay at home mom status.

Botox

2008-04-26T12:04:00.000-07:00

My strong boy never ceases to amaze me.

Today Thomas had a botox injection appointment. He received six injections in each leg. I laid him across my lap on his belly to get the injections. It was over within thirty seconds from when it began. He never cried, never whined, squirmed a little, but was otherwise such a big strong boy. When it was over I sat him up on my lap and he looked at the doctor, clapped, and when the doctor clapped back he gave him a big ol' grin.

He really is an amazing little boy.

Burn

2008-04-26T11:42:00.000-07:00

The time had to eventually come when Thomas would get his first real big bad injury. Of course it also had to be a time when it was due to something as stupid as mom not putting shoes on him and dad letting him sit alone on the four-wheeler.

Usually when I take Thomas outside I don't bother with shoes. He can't walk so what's the point? We went outside and daddy decided to take Thomas around the yard a few times on the four-wheeler. As he always does, he tucked Thomas' feet under his (daddy's) legs so they wouldn't come close to the hot motor. They started their drive and did a lap or two before running out of gas. Daddy got off waiting for mom to make her way over and let Thomas stay sitting on the quad. Then I came and took Thomas while daddy pushed the quad back to the garage. Thomas and I played outside a bit longer, riding in the wagon and sitting on the lawn mower (even though it wasn't on Thomas thought he was so cool sitting on it playing with the steering wheel). After twenty minutes or so I brought him in for his bath and bedtime.

As I was undressing him I noticed he had something on his toe and reached down to yank it off. Before doing so I took a closer look and realized it was his skin! He had two medium sized burns on the top of his foot near his big toe. He hadn't cried out while on the four wheeler, nor acted in pain at any other time we were outside.

I ran a cool bath for him and put him in. I cleaned him up and allowed the burn to soak in the cool water. I got him out and put some aloe gel on the burn, lightly wrapped it in gauze, put a sock over it and he promptly fell asleep. Of course I debated whether I should take him to the ER or not, but since he acted like it didn't hurt and it looked bad but not horrible I decided to leave it be for the night.

The next morning I unwrapped the gauze and put more aloe and fresh gauze on the wound. We went on some errands and then came home. All the while he acted as though he hadn't a care in the world. When I removed the gauze that afternoon it stuck to the wound and I noticed some discoloration on the gauze. I decided to go to my "in-home medical professional" aka GOOGLE. When I read some of the results about burn care and burn severity I decided it would be best for Thomas to be seen by a doctor. I called his pediatricians office and was told to take him to the ER near them which included a burn unit.

We spent over four hours at the ER. Which is crazy since it was only serving children and it was busy but not crazy busy. By the end of the visit Thomas was diagnosed with a second degree burn but what they did and told me to do was the same as what I had been doing. They gave me a medicated ointment to use and sent us home with an appointment set up for the next day at the burn clinic. Of course I was given major guilt trips about Thomas being on the quad without shoes. It really didn't matter, I couldn't have possibly felt worse than I already did, regardless of what they had to say to me.

The next day we went to the burn clinic and again the doctor tried the guilt trip on me for no shoes/quad. Okay, I get it, world's worst mother here, I know. I felt like asking the doc if he had kids, and if so had they never in their lives suffered a preventable injury while under his supervision. But I bit my tongue.

The doc said that while the burn was bad, and would require five or six weeks to fully heal, that it was small enough not to require any type of graft or other major procedure. I was told to put the cream on it and change the bandages twice a day, put him in the tub as usual and wash the wound while trying to slough off the dead skin.

So, basically to do what I had been doing.

I beat myself up over not taking him in the same night it happened. I surrounded myself in guilt over not putting shoes on him, not reminding his dad to watch his feet on the four-wheeler, and for not noticing the burn right away. But I have decided to forgive myself, relieve myself of the guilt, and realize I am human and things like this will happen. I will never again allow him to ride the quad without shoes or jeans, but I won't stop him from riding. He's going to get hurt and I won't always be able to prevent it. Life happens and while I will be more careful, I will also be careful not to smother him so that he cannot explore and enjoy life and what it has to offer.

Sick & Tired

2008-04-07T08:20:00.001-07:00

UGH! Thomas is still sick. He was puking all afternoon after school on Wednesday. Thursday he was listless and laid around most of the day, not eating but drinking some. Friday he was back to his old self, or so it seemed until he started puking again. Saturday was another no-puke day. We went outside to enjoy the (finally)nice weather and he had fun riding the four-wheeler with mom. When we came inside he laid on the couch and began throwing up again. Sunday was another great day. We went outside and he rode in his power wheel and sat on the swing for most of the day. We came in and he ate real well, played for a bit then fell asleep at 5:30 (YUCK!). Around 12:45 he woke up and needed to vomit but managed to keep it in. I came to the computer to shut it down and he laid on his back on the floor. Next thing I know, puke city all over again. In his nose, ears, hair, all over. So at 1 o'clock in the morning I was up giving him a bath. After the bath he was fine again, happy and laughing, playing and reading his books. So far today he is acting fine again.

I placed a call in to his pediatricians office and am waiting on a call back. I hope this is just a bug going around. I don't want him to have to go through any testing of any sort. I want him to be well. It is his spring break and it's not fair to him to have to spend it being sick!

*sigh*

You know those commercials for the office supplies where they have their "Easy Button"? Well, I want an easy button. I'd press it right now and Thomas would be well, my house would be clean, my laundry would be caught up and dinner would be cooked.

When did it get so hard? It seems I am forever standing atop a mountain of laundry (especially with the half dozen loads of pukey clothes and towels from the past five days). My house is overtaken by dust and dog hair. My kitchen table is the catch-all for everything - mail, books, food packages, telephone, camera, and crumbs from Thomas' breakfast.

I know, I know, get my butt off the computer and get to cleaning, maybe that would help. But it doesn't. I NEED the computer. I NEED the Internet. I NEED my friends who help talk me down when I'm freaking out. I NEED my blog to get my thoughts out of my head to make room for other things in there. I NEED the Internet to look up signs and symptoms, for freebies, for the best deals, for anything to take my mind off the zillion things I should be doing but will never find the time to do in a single day. The computer and the Internet are my link to sanity. Without them I would be sitting here pulling my hair out making strange noises as I rocked back and forth hugging myself.

Okay, maybe it wouldn't be that bad, but it would be bad.

I guess right now what I really need is to get off my butt and get to the housework. And now that I've unloaded my frustrations and anxieties I think I can do that.

Sick

2008-04-02T20:58:00.001-07:00

Being that I am a first time mom, and the mom of a special needs kid, I have no experience with having a "normal" child getting sick. I wonder if regular moms worry and freak out as much as us special needs moms. Every time Thomas gets sick I wonder if there is more at play than just a virus or a bug. Is it something deeper and more sinister? Is that cough and fever just a precursor to something scarier?

I am always worried that some day he will eventually end up having seizures. Many CP kids end up having seizures but we have been lucky with that so far. But the thought is always there, in the back of my mind, lurking in the darkness with all those other scary thoughts that come with being the mom of a special needs child.

Tonight Thomas is sick. He has been vomiting throughout the day since coming home from school. He hasn't eaten anything but has drank two cups of juice. He fell asleep around 5 only to wake up three times to vomit. He is miserable. He looks so sad, pale, and small. I don't like it. It scares me. He had this same thing happen a few weekends ago, it lasted for just two evenings (he was fine during the day) and then went away. I'm hoping that is the case this time. But now I wonder what is behind this? Why is he throwing up? He has a low-grade fever, nothing serious. No coughing, no runny nose, no other symptoms.

So why am I so worried? Why does this little nugget of fear embed itself in my brain? Do regular moms go through this? Or for them is a cold just a cold, throwing up just a stomach bug, a fever just a fever?

The Easter Thing...

2008-03-21T19:50:00.001-07:00

Easter is coming, and I must say it is turning out to be my favorite holiday. This is the one holiday that has a tradition Thomas really enjoys participating in. Of course he likes the present aspect of Christmas, but he won't help decorate the tree or bake cookies. Halloween I can put him in a costume and roll him around town, but he doesn't really care for the candy that much and doesn't understand what is going on. With Easter I have discovered for the second year in a row that Thomas loves to color eggs. Finally a traditional holiday activity that he actively participates in and thoroughly enjoys!

Last Easter I vividly remember Thomas putting the eggs into the coloring cups, using his hands to add them to the cups and take them out. I remember the single egg, left uncolored, because Thomas wouldn't let anyone dip it into the coloring. I remember the green hands that lasted for days and days. But mostly I remember the giggles, the laughter, the look of pure joy on his face as he dropped those eggs into the cups and gleefully pulled them back out.

This year I anticipated major disapointment on my part. Dare I hope that Thomas would want to participate in the egg coloring two years in a row? It was a slow start. Thomas was unhappy that I cleared away his mealtime items, his sippy cup and books. He wasn't sure what to do with the newspaper I placed in front of him. When I placed an egg in his hand he tried to give it back. I began to feel that bitter edge of disapointment I had hoped wouldn't come. And then, suddenly he decided to participate. He stuck those little hands in the cups, placing one egg after another into the same cup, stacking them until he couldn't stack them any higher. It was so cute, and such a wonderful surprise!

Sometimes Thomas just seems to know when mommy needs a reminder of what a miracle he is. I admit I need a gentle nudge now and again to look at the bright side of life and stop feeling sorry for myself, and to think about what all this boy of mine CAN do, instead of feeling sad about what he can't.

I helped take down the cupboards...

2008-02-16T10:26:00.000-08:00

With the return of our income taxes my hubby and I decided to replace our old worn down cabinets. We ordered them and ended up getting one back that was not quite right. We decided to get the project underway with the cabinets we did have.

I emptied the two cabinets we would need to take down. Hubby removed one cabinet and then went out to the garage to get a 2X4. While he was gone I thought "why don't I take down the other cabinet for him and it'll be a nice surprise?" So I get two screws out and then the head breaks off the third one. No problem, that happened to hubby too and he just yanked on it a bit to get it off.

I start to yank. The cupboard next to the one I was working on began moving too. As I continued, a little more cautiously, I decided to just wiggle it back and forth instead of yanking on it. Well, I forgot that two years ago when we were putting up a new ceiling hubby just tacked the cabinets up onto a single 2X4, because when he did that it was a "temporary-fix". So, unbeknownst to me, as I am jiggling and wiggling and pulling on this single cabinet, all the rest are getting it too.

Did I mention I hadn't cleared out the cabinets that were supposed to stay up?

Anyway, next thing I know ALL the cabinets are crashing down. I'm on a step stool trying to hold up the end I have been working on, the middle is caught on a little shelf on the wall, the others are just pouring out their contents. All I hear is shattering glass. Hubby is still out in the garage. So I stand there, because if I move the cabinets will definately fall completely down, and the door that is being held shut by my body will also lose it's contents. I stand there waiting for hubby to come back, and yet I'm hoping he never does. LOL

He comes back and I start yelling for him to come into the kitchen. tick tock tick tock tick tock... "Ummmm honey, could you hurry?"

"I am"

"Yeah, I need you to hurry a little faster!"

The look on his face when he walked into the kitchen was priceless. But to his credit he didn't yell or give me a hard time. I think he was in too much shock. He came over and helped me get the cabinets down (losing more glasses and other stuff in the process). Then he sat down and just stared at the floor. Meanwhile I am stuck on this stool in my stocking feet unable to move for the shards of shattered glass all around me. So after a gentle prompting, he got me some slippers. He even helped with clean up.

The floor, which was also replaced just over three years ago with a wood laminate, is scarred and gauged beyond repair. I'm thinking a nice area rug for the kitchen has now become a necessity.

So yeah, lesson learned here: ME + power tools + construction projects = DISASTER!

**note: Thomas was in his chair at the Kitchen table out of harms way when this happened!**

Amazing Thomas

2008-02-12T10:08:00.000-08:00

I talked to Thomas' teacher today and she told me something that happened during his OT session this morning:

During OT (occupational therapy) his therapist had him in the swing. When it was time for him to stop swinging, she tried to take him off the swing. Well, he wasn't ready to get off the swing, and pushed her hands away and SAID "NO!"

Of course, he hasn't repeated it since then, and I'm sure he probably won't until he's good and ready, but WAHOO!!! Progress is Progress! So now his vocabulary (when he chooses to use it) consists of "Mama" & "No".

I have such an amazing little boy!

Happy Birthday to my Baby Boy!

2008-02-11T08:31:00.000-08:00

Five years old. I can't believe it. It has been five years since I was blessed with my amazing and sweet little boy. He is not so little anymore, growing faster than I care to admit. This last year has been such a big year for him. He's come so far in social, physical, and even mental development.

Can this little boy, now five years old and becoming so independant, be the tiny baby who came rushing into this world 8 weeks too early? He was eager to come out and greet the world, and has been doing things at his own pace ever since. Some things take him longer, and some things seem to come much too fast.

Saturday we had a nice party with many of our friends and family helping to celebrate. He received so many nice gifts and still, two days later, has yet to explore them all. Last year he was still a bit anxious in a crowd and cried when we sang "happy birthday." This year he was a little social butterfly and was all smiles during the singing. He even ate some of his cake!

This has been one of the best years I have had the pleasure of sharing with Thomas. I can only hope the coming year has as many accomplishments and joys as the past one did.

Whoohooo! He did it again... ;o)

2008-01-21T01:59:00.000-08:00

This morning Thomas woke up at the crazy hour of 2 a.m. Around 2:45 he wanted up at the table for some food, so I put him up in his chair and laid myself back down on the couch. A short while later he was whining to get down, so I asked "Thomas, do you want down?" And he reached over and pushed "yes" on his GoTalk. So I got up and let him down.

At around 4:15 he wanted back up at the table to eat breakfast. So I put him up and got him some more food, then I went and laid back down on the couch again. I snoozed, and a few minutes later woke to a lot of whining. So I asked "do you want to get down?" Nothing but more whining. So again I asked "Thomas, do you want to get down, press the button and tell me." So he looks at the GoTalk board, reaches over and presses "potty".

Okay, I was a little skeptical about this, but since he actually did check out the GoTalk board first and pushed that button after some deep thought, I got up and took him into the bathroom. I sat him on the potty, read his book a few times, and he actually went poop on the potty again!!

So it wasn't just a fluke!! How exciting is this? I envision no more poopy diapers, and after almost five years of them, that is a wonderful vision!!

Go Talk Communication Device

2008-01-20T13:06:00.000-08:00

Recently Thomas received an early birthday present. It is a communication device called a "Go Talk". Basically there are pictures placed in front of buttons. I can record a word so that when he pushes the corresponding picture, the word will play. I have programmed it with the words "Yes" "No" "More" and "Potty". The idea is to teach him to use the buttons to communicate, which will cut back on the frustration of figuring out what he wants, or doesn't want, and it will actually help with his speech in the long run.

Anyway, Thomas was sitting up at the table eating a snack this morning. I was working on my laptop sitting next to him. The "Go Talk" was near him and he pushed the "potty" button. So I said, "Do you have to go potty? if you push that button that means I have to take you to the potty." He pushed it again. So I took him into the bathroom. He sat on the potty and we read his book 3 or 4 times. I asked him twice if he was ready to get down and he pushed the "no" button. I left the bathroom to get a different book and when I came back I smelled something not-so-rosey. So I asked him if he made a stinky. I scootched him forward so I could see and sure enough, he'd made a poop on the potty!!!

This child amazes me every single day. I almost can't wait to wake up to see what else he is going to do!

He said it...

2008-01-14T03:02:00.000-08:00

He said it...

The word I've been waiting for was finally, FINALLY, uttered from the sweet lips of my baby boy.

"Mama"

One word. One sweet word from my amazing guy.

A day I prayed for. A day I hoped for. A day I wished for with all my heart but was never sure it would really come.

But it did, and I realize that I need to keep on praying. Keep on hoping. Keep on wishing with all my heart and believing that the days will come when he will do the things I long for him to do.

It happened Thursday afternoon. I was working on a website for a new client but Thomas wanted to look at the Nissan website on my laptop. So I pulled it up for him and we looked through all the available models. While we were looking I received an email so I quickly clicked over to see what it was. This did not sit well with Thomas, who was not quite finished looking at the cars. So he began to get an attitude, as most soon-to-be five-year-olds will do. I turned to him and said, say "mama" and we can look at the cars again. Some more whining ensued, but a moment later he looked straight into my eyes and said "Mama."

Of course then I was too excited to switch screens, hugging and kissing him, cheering and applauding his accomplishment. All the while encouraging him to say it again. No such luck. Each request for the word mama was returned by Thomas with a kiss. Kisses are nice too, but I was on a "mama" high and wanted to hear it again. However I do know when to stop pressing my luck, so I returned to the Nissan website and we continued browsing for Thomas' dream car.

A few hours later he was at the dinner table, and he ran out of juice. Next thing you know I hear "mamamamamamama." So this time I was low-key about it and just refilled his juice. Okay, I did ask him to say "mama" before I refilled it. And he did answer me with "umma." Close enough kiddo, close enough.

After that requests for "mama" to be said were met with "babababa" or just plain old fashioned gobbledegook. Although I did get one more mama at random from across the room.

The next morning Thomas woke up way too early for any civilized human being to wake up. As I groggily got him some breakfast and strapped him into his booster seat, I kept asking him to say mama. Hey, it was 4 a.m. If he could wake me at that ungodly hour I had the right to make my request! Nothing doing though, so I came back to my couch and laid down where I could still watch him, and promptly dozed off. A short while later I awoke to "Mamamamamamama!" So I hopped up, did a happy dance, and went and got my big, sweet, wonderful, amazing boy down from his chair and smothered him with kisses and hugs before I let him down to play.

What an amazing little boy I have, don't you agree?

R.I.P. Pat

2007-12-26T06:19:00.001-08:00

Over the weekend a friend of ours took his own life. It came as such a shock and hung over our holiday celebrations like a dark cloud. He was too young to die, and it's so hard to accept that he is actually gone. He and his wife are a part of our circle of friends who all live within an hour of each other but grew up in the same rinky dink town up state years ago. He leaves behind a wife and two young children.

It is such a tragedy to have a friend die, let alone in the way he did. It is even harder to have it happen at the holiday. His little girl will have her fifth birthday in a week, but she will have to have it without her daddy. How is a child who is about to turn five supposed to understand that daddy is gone and never coming back? Will they ever find the magic of Christmas again, or will the memory of his death haunt every Christmas yet to come? How do you begin, as his widow, to pick up the pieces and hold it together when your world is falling apart around you? I can't imagine the pain of her loss, nor what she is going through to try to keep it together for her kids.

My heart is heavy with this loss. As my husband said, "We aren't supposed to be going to our friends funeral's for at least another 40 years." This is the second unexpected loss of a life much to young to have ended in the past 13 months.

I know that life will go on. Time will make it hurt less and we will all move on. However, in the here and now it hurts, and most of all I hurt for those he left behind and pray they can find their way to peace and happiness without their beloved father and husband.

Thomas at Christmas

2007-12-26T06:11:00.000-08:00

Thomas was so much fun for Christmas this year. In years past he has helped open his gifts, not really interested in the act of opening nor in what he found inside. This year he couldn't get enough of opening. Occasionally he'd stop to check out what was in the package, but mostly it was on to the next package, ripping the paper a little at a time, tiny bits of paper being thrown here and there. At the start he needed help getting started, but at the end he was a pro. He also quickly figured out that soft packages most likely meant clothing, and he'd toss those aside without bothering to open them. Stinker.

Thomas received way too many gifts, but he really loved most of them, and as the days go by I'm sure he'll love the rest. There was so much excitement involved as we went from my mother's house to my mother-in-laws house, but he was so very very good. He had a great time and it was such a lovely Christmas with him. It's so nice to see how much he has grown and how he is beginning to enjoy those things other parents take for granted that thier kids will do and enjoy. I can't wait for next year!

Merry Christmas!

2007-12-11T19:55:00.000-08:00

For the past two years, just before Christmas, Thomas has done something amazing which always manages to lift my mood and restore my holiday spirit.

Two years ago he began using the walker.

Last year he figured out how to crawl. (yes, he's backwards lol)

This year I fully expected him to start talking. Nothing big, just a single word would do. It is now December 11 and still no words. However, he has once again done something truly amazing. This year for Christmas Thomas has decided he would start to "get it". He is suddenly understanding everything being said around him. He is listening, understanding, and complying (when he feels like it!).

There are three other things he has started doing in the past week. The first is that he has become a puzzle master. I took a puzzle to therapy with him last Friday. It is one of those wooden ones with the big chunky pieces with the wooden knobs on them. It has three large shapes, a circle, square, and triangle. In the past he has shown a mastery of the circle, a pretty good grasp of the square, and troubles with the triangle. He hasn't touched the puzzle in months. Well, I pulled it out at therapy on Friday and set it in front of him while his therapist twisted and manipulated his body into the proper kneeling position. Like an expert he grabbed all three pieces and put them in their proper spot. After proving to us a few more times that this was not a fluke we challenged him with another puzzle. This one had smaller wooden shape pieces with smaller knob handles. It also had more shapes. Again he shocked us and put all the pieces in the puzzle with no trouble at all! It was truly amazing to watch him work those puzzles.

The second thing is last night (Monday) he took a hot wheel car, held it wheels down on the table, and began scooting it back and forth in front of him! He PLAYED with a car just like those boring "normal" kids do.

Finally, the third thing is he has a leap frog book that is in the shape of a barn. It reads the story about farm animals, counting them as it goes. Along with this book is a block, which has an animal pictured on each side. For each page of the book "Tad" the frog is looking for one of his missing animals. The object is to find the animal on the block and put it in place with the correct animal facing up. Then when you push the block down it congratulates you on finding the animal. Thomas has had the book for almost a year, and has never used the block with it. The other morning I got the block out and showed him what to do with it AND HE DID IT! He has trouble getting the block in the hole, but he can find the correct animal each time. He will hand it to me to put in the hole after he has tried to do it himself.

I can't say enough how amazing this kid is. I am so in awe of him and all he has accomplished and I wait with baited breath for his next great accomplishment.

One in every family

2007-11-12T16:33:00.000-08:00

There seems to be at least one person in every family who is either unable, or unwilling, to comprehend the nature of a special needs child. This person usually speaks without thinking, often causing us parents to cringe, or worse, to cry. We are used to strangers coming up and saying things that astound us by their complete ignorance. These people don't know us or our children, and often don't realize their comments hurt. However, when it is a family member who says, or does, something completely ignorant, it is hard to let it go.

In my family I have one major offender of the above crime. This person is constantly saying things that make me slap my own forehead, when really I want to slap hers. The last time we were at a family gathering she introduced Thomas as her "special grandson." UGH! The time before that she asked me "do you think Thomas can understand what we are saying?" To which I replied, "Yes, of course he can." Her next question, "Do you think he wonders why he is different than everybody else?" Oh my God woman! Did you not hear my previous answer that he DOES indeed understand what you are saying? Then why on Earth would you ask such an asinine question as a follow up? The last time I saw her was at a smaller gathering which included a friend of my uncle. This friend, who I did not know, asked my cousin if Thomas was the "special one" she had heard about. UGH UGH UGH!

What in the world are we supposed to do with family like this? Strangers are easy, we don't have to like them, we don't have to explain anything to them, and we likely will never see them again. But with family we do have to see them again, we do have to like them, and we do have to explain. Or do we? It has become my new policy that I will only surround Thomas with those who are supportive and who lift him up instead of those who seem to thrill when he falls. I have received a lot of flak for this policy. Other family members think that because She is my family I should forgive and forget. They don't understand what it's like to fight tooth and nail for every small achievement in a special needs child's life. To fight the insurance company, the schools, the doctors, and whoever else out there wants to stand in the way of our child and what we believe is best for them. It is my opinion that family should be the one group I shouldn't have to fight. They should be supportive and helpful. They should be next to me, cheering Thomas on to his next goal, that next great achievement. By allowing those who do not do those things to be in his life I am doing a disservice to him. Thomas has enough hurdles to face in this world, I won't knowingly give him another by allowing anyone, family or not, to stand in his way.

Happy Birthday To Me

2007-11-04T16:52:00.000-08:00

I'm almost officially old. Today I turned 29. As I sat here reflecting on my life up to this point I realized that I am almost exactly where I always planned to be. All my life I wanted one thing, to be a stay at home mom. Well, there was that other thing about marrying a rich man, but we can't have it all now can we? And here I am, at 29, living my dream. Except nowhere in my dreams did I ever imagine how difficult it would be. I never entertained the notion that my child would be anything less than amazing. My child would be the next Einstein. He would be the first amongst his peers to roll, to crawl, to talk and to walk. He'd be famous by age two because he was so incredibly gifted the world would stand up and take notice.

However, in many ways my life as Thomas' mom has exceeded the dream. He is amazing. He is beautiful. He has the ability to touch the hearts of all those around him, and even those who only know him through my writing. He is more than any child I could have imagined having. Sure we have our troubles and there are things I wish with all my heart he could do, but I wouldn't trade him for anything or anyone. He is so much better than that dream child I had. That dream child was what I thought I wanted. Thomas is everything I know I NEED. Without him life was boring and predictable. With him I never know what to expect, good or bad, he keeps me on my toes. His laughter keeps me smiling, and his kisses fill my heart to bursting.

So today, on my birthday, even though he is not able to buy me a gift or wish me a happy birthday, he has given me the best gift of all. A gift that needs no ribbons, no pretty paper, and no card. The gift of being a mother, his mother.

In need of a personal assistant...

2007-10-27T05:00:00.000-07:00

Okay, so I guess I really am a frazzled mom. Yesterday I got a letter from our state saying that I had not paid a single premium payment for Thomas' insurance last year! What?!? This must be a mistake, because how could I miss an entire YEAR of payments?!? So I went back to the old file cabinet, found all the old check books and looked through three of them that covered the time period for which I supposedly missed the payments. Sure enough, not a single payment was in there.

How did this happen? And how on Earth did we slip by with them still providing coverage? I mean, they actually paid out thousands of dollars toward his stroller co-pay ($2,000) and at least thirty days of therapy which wasn't covered by our primary insurance. I feel like such a heel. This insurance has saved us, without it we'd have to decide between orthotics, equipment, and thearpy for Thomas or our house payments. It has literally been our lifeline. We only pay $50 a month for this insurance.

So here's what happened. In 2005 the state decided they would raise the premiums by more than twice what they had been. Our premium went from $20 a month (a technical error on our local agents part, it should have been $50 apparently) to $120! But it was still well worth it for us. Sure the extra $100 hurt, but we could cover it. Then after a few months the state took pity on all of us special needs parents and lowered the rates back down to what they had been. This put us down to $50 a month, and since I had paid the $600 I owed for the year already, they told me not to make any more payments. So I didn't. Apparently I didn't make any more payments for the following year either!

How embarrassing.

Luckily I got a quick call back from the woman who sent me the letter and we have arranged for me to pay it over the next few months instead of a bulk payment of $600, which would really have put a damper on the holidays. We were both in disbelief that they had renewed my contract in spite of my lack of payment, but she said I was not the only one to have this issue with them.

So I told my husband he needs to get a raise so I can hire a secretary or a personal assistant, because obviously I am too frazzled to keep track of all this stuff on my own.

We read a book together

2007-10-22T14:29:00.001-07:00

Long ago Thomas developed a love for books. As soon as he learned to turn the pages himself he no longer had the patience to sit and allow me to read the story to him. It has been well over a year since I have been able to sit with him and read him a book. Well, today he actually let me read him TWO books! He sat next to me for the first one, giggling and bouncing as I read and turning the pages for me when it was appropriate to do so. Toward the end he got a little antsy and wanted to turn the pages faster than I could read them, but I made him stick it out and we finished the book the right way.

Later he was upset over something so I pulled out another book and began to read. He quieted down and I pulled him onto my lap and continued reading. He turned the pages for me at all the right spots and listened quietly as the tears dried on his face. When we were done I told him what a big boy he was and how much I enjoyed reading to him.

At the beginning of October his teacher sent home with him a blank form. The form was intended to have listed all the books parent and child read together for the month of October. I knew this was one homework assignment I would fail to accomplish unless I fudged the results. I couldn't bring myself to do that though, so the list has sat on the counter, mocking me for the past 22 days. Today I get to write TWO titles on that list. Two! If I'm lucky I'll get to write even more on it tomorrow.

Persistance Pays Off

2007-10-22T09:52:00.000-07:00

YES! YES! YES! YES!

Thomas was evaluated for speech therapy today at school and the note from the teacher says that the therapist will be working with him in the classroom. So I am assuming that means he is getting speech therapy!! FINALLY!!!!!!!!!!!!!

A little background:
Thomas has been going to Early On since he was one year old. This was at the same school where he attended his first, and now his second, year of preschool. Since he turned two I have been asking, and then begging, for him to receive speech therapy. The reply I always got was that his speech level was on par with the rest of his development so he didn't qualify. HUH? That didn't make sense to me. His physical development should have nothing to do with his speech development. His motor delays were caused by his CP and poor muscle control and spasticity in his legs. Why would they even associate his speech with his ability to control his larger muscles. In my opinion because he WAS receiving occupational and physical therapy, it only made sense he should get speech too. UGH! So frustrating. But all that doesn't matter because he is getting it now! Finally!

I had asked to have him evaluated by a different speech therapist than the one who had done it previously since obviously I didn't agree with her assessment. So they had the one I had requested, plus the one who had done it prior, evaluate him together. The one I didn't want is the one who will be giving him therapy. But at least he is getting it. They are both supposed to give me suggestions on things to work on at home with him.

I am just over the moon right now!

'Tis the Season

2007-10-21T18:51:00.000-07:00

I know, I know, I've already whined about how hard holidays are for us special needs moms. But it is that time of year when it all gets shoved in our faces and it's sink or swim for our emotional well being. Right now there are moms on my message boards wondering what supercool new toys to get their kiddos for Christmas. As I read these posts I get to see just what Thomas is missing out on because of that evil monster that is CP. The board I visit is for children born the same month and year that Thomas was due. The toys they discuss are all the fun ones I would LOVE to get for Thomas and have him actually care, to play with them the "right" way and enjoy them. But that's not going to happen. Not this year anyway.

And the commercials, oh those damn commercials. Moms playing board games with their tykes, Hi Ho Cherry-O and Candyland, among others. Last year I bought Thomas Memory. He loves it. He takes all the cards out, stacks them, scatters them around his room, and puts them back in the box (if I'm lucky). Not exactly what I had in mind. Is it ever really what I had in mind? Not usually.

So it is without fail that, at this time of year, I sit down and count my blessings. I try to list the million and one ways Thomas is so much more fun to be a mommy to than those other kids. Yeah, he has CP, and that majorly sucks, but it is what it is. Because of the CP I am more appreciative of all the little things that, to us, are not such little things. Right now I marvel at the look of pure joy on his face as he races his walker out of therapy and to the parking lot. The smiles in the pictures the school just sent home from the first few weeks there. The way he licks his fingers to turn pages in books and magazines. The joy he gets when we receive a new magazine in the mail. The way he is suddenly interacting with people, really looking at them and being social with them. How last night he flirted with a friend of mine and giggled at the silly faces she was making. And today when he lightly touched his hand to my belly and I pretended he had pushed me across the room. He giggled so hard and kept wanting to do it again and again, just like a "normal" kid.

So yes, I count my blessings and realize how good we have it. He is healthy, he is beautiful, and he is mine.

Besides, who wants to play Hi Ho Cherry-O anyway?

My Greatest Wish

2007-10-21T18:07:00.001-07:00

I hate to put the cart before the horse, as the saying goes, but I am pretty sure that someday soon Thomas is going to clearly and meaningfully say the one word I have been waiting to hear. He is soooo close to saying it. He starts off with the "M" sound and gets the "ah" going after it, but just won't repeat it to form the word I have been dying to hear uttered from those precious lips.

Honestly I'd love to hear him say anything at all, but for his first word to be "mama" would be the absolute most wonderful thing. I have waited and waited and waited for that day, the day he speaks. I am still waiting. But I think it is coming. He is soooo close. Today he really teased me with it. Several times he would say "Ma" only to end it there. I'm fairly certain he means to say "mama" and that he knows that is me, but until I know without a doubt that is what he means I am not going to count it.

I am hoping for a true "mama" for Christmas. Thomas seems to do something spectacular just before Christmas every year. Two years ago he started to use his walker. Last year he learned to crawl. (Yeah, I know, wrong order of doing things, but we do things on 'Thomas Time' not everyday boring average people time)

So this year for Christmas I am wishing for speech. One word would be fine. Any word. I'm not picky. Just a single word so I can be reassured that he will someday be able to speak. Above all else that is the most important thing to me. A person can go through life without the ability to walk and do just fine for his or her self. But not being able to communicate in some form or another is debilitating to a person. If he can just do that, I know he will be okay.

Handicap Accessible

2007-10-08T20:48:00.000-07:00

If you have never had an occasion arise where you were in need of a handicap accessible entrance, then you probably won't care what I have to say in this post. One of the things that has bothered me since even before Thomas was diagnosed, but even more so since he has become too heavy to carry around all the time and spends much more time in public in his stroller, is the lack of handicap accessible entrances. Sure, all the public buildings have those nifty blue stickers affixed to their doors to let us know this is where we should enter. And lucky for us I have gotten good at pulling Thomas in backwards through these doors with one hand on the stroller and one hand holding the door open. Or by using my rear end to push open the door while pulling Thomas through backwards hoping the door doesn't slam shut on him before I can yank the stroller through.

I guess I don't understand exactly how these entrances qualify as handicap accessible. Is it because there is a sticker on them? Or because there is a ramp cut into the sidewalk leading up to the door? Because for sure, the door is in no way handicap friendly. I cannot imagine Thomas, years from now sitting in a wheelchair on his own, trying to pull open one of those doors, then being able to back up enough to keep the door open while he rolls on through. Nor can I imagine him in his walker trying to accomplish the same thing without losing his balance and falling flat on his face.

What really gets me the most is when we go to his specialists offices, and they have no automatic doors. Come on now, 98% of your patients are handicapped in one way or another and yet you don't have a way for them to safely enter your office without a two man crew accompanying them.

And while I'm on my rant, which is probably making no sense at all as I ramble on and on, why can't people hold open doors for us? Is it so difficult to take five extra seconds to hold that door open for that frazzled mom who is huffing and puffing behind you trying to push her child in his stroller and scramble for the door before it slams shut either in her kid's face or on his legs? What ever happened to chivalry, or basic human kindness? I am always shocked when someone actually does hold open a door, and I'm sure I embarrass them with the mountains of gratitude and praise I heap upon them as I marvel at their kindness. But it is such a rare occurrence that I find myself wanting them to know that they have just made my day a little easier and reminded me that there are in fact a few decent human beings out there, willing to take five seconds from their lives to help out a mom like me. And to those big corporations, those doctor offices, shopping centers and anyone else, it takes more than a little blue sticker on your door to make it handicap accessible.

Normal

2007-10-07T17:46:00.000-07:00

Sometimes being the mom of a special needs kid can really bring a person down. Not because we don't love our kids with all of our hearts. And not because we aren't so very proud of who they are. We don't judge them by their accomplishments, by the can do's and can't do's. We just love them because they are ours and they captured our hearts from the very moment we first laid eyes on them, and most likely even before then.

However there are times when it is especially hard to be the mom of a special needs kid. Times when we have typically developing children shoved in our faces, forced into our lives, and we practically choke on their normalcy and their ability to do things our children can't.

Holidays are quite possibly the hardest times for me. And playgrounds. And birthday parties. The list goes on and on. But holidays, a time when any parent looks forward to seeing the joy on their child's face as they unwrap, dress up, sing carol's, collect candy, pull the wishbone, etc. etc. etc. What I wouldn't give to just once have my sweet Thomas pick out a valentine card to give to the little girl he thinks he is in love with. Or for him to see a commercial on TV and say "mommy, I want Santa to bring me that toy!" and then wait in anticipation, hardly able to sleep because Santa is coming and tomorrow he will find out if he did get that toy. I'd love to have him pick out a costume to wear for Halloween, hold his treat bag, shout "trick or treat" at the top of his lungs, then run off before remembering to say "thank you."

It is now October. A great time to be a kid. You get to dress up, you get to play tricks on people, you get free candy, and if you're lucky you get to eat as much of that candy as you can. Yet here we are, Thomas and I, just after our first Halloween outing of 2007. I picked out his costume. I painstakingly created a costume for his stroller too. "This year," I thought,"Will be the year we have a normal Halloween." Nobody will think Thomas is different, because the stroller will not look like a handicapped person's stroller. It'll be an accessory, not a necessity. And so I got out my needle and thread and painstakingly stitched up a cover for his stroller. We had our first outing scheduled. Everything is perfect right?

Wrong. No matter how much I strive for normalcy, I have to accept that I will never achieve it. What is normal for others may never be normal for us. When will I accept our normal? When will I lower my expectations so as to avoid disappointment? Should I? I don' think I should. Should I let go of hope, let go of the idea that at some point Thomas will enjoy these moments as much as any other child, as much as I want him too? NO! I won't accept it. We may not have those same moments as other kids and their families have. But we do have OUR special moments, OUR special memories, OUR own normal and OUR own traditions. And while I may want to celebrate things a certain way, and just when I start to feel the disappointment sink in because Thomas is not reacting or interacting the way I want him to, I am awakened to reality. The reality that Thomas may not do things the way others do, but that doesn't make it any less meaningful.

This weekend we went on our scheduled outing. Grandma and Grandpa came along. We hit the "village" and we trick-or-treated our butt's off. Mom and Grandma looking forward to all the candy they were about to acquire. Daddy and Grandpa trailing behind too embarrassed by our costumes to walk too close. And Thomas, sweet Thomas, sitting in his stroller, oblivious to the concept of trick-or-treating, yet having the best time of us all. The giggles and smiles he sends echoing through the streets make others around us stop and smile. Apparently he likes the bumpy gravel of the road, and the vibrations of the wooden sidewalks. Who cares about candy, this is a fun ride! But the best part was the carousel. Thomas loves the carousel! Around and around, faster and faster, up, down, up, down. Smiles, giggles, then full out belly laughs ringing through the building. Let's go again, and again, and again. At that moment, it is hard to look at him and remember he has CP. It is hard to remember he is not "normal." It is hard to remember that he didn't hold his bag out for the candy-givers, or shout "trick or treat", or forget to say "thank you." At this moment he is Thomas, a little boy having the time of his life on the carousel. He is Thomas, my son, reminding me to stop and enjoy the little things in life instead of worrying about the big picture. And I think to myself, "Don't worry about the can do's and can't do's. Let's just enjoy the now, this moment, this smile, this laugh, this boy on this wooden horse."

And I did.

He Walked

2007-10-03T05:07:00.000-07:00

At therapy yesterday I decided to haul in Thomas' reverse Kaye walker. He hasn't used it in months due to the increased tightness in his legs. When I would have him use it he would toe walk, even in his braces, and I was so worried about his posture, not wanting him to learn to walk with bent knees on tiptoe.

But now things are different. The botox and serial casting have worked a miracle and he no longer is so tight. Now he can stand flat-footed and straighten out his legs. It truly is amazing to see the difference. Diaper changes are so easy now that his legs are easily manipulated and loosey-goosey. It's wonderful.

Which leads to yesterday and the walker. I carried it in since he had not gotten his shoes yet. Once the shoes were on it was time to cruise. At least, both therapists and mom were hoping for some cruising. Thomas was ticked because we had to take his books so he could hold on to the handles. He walked a few steps and then tried to get down and steal his books back, the little stinker. So he spent the rest of the therapy appointment crying for his books and begrudgingly working on his therapy activities.

At the end of the visit his mean ol' mama decided to make him walk out to the van. His therapists thought I was nuts, as Thomas screamed and stumbled out to the waiting room, eventually offering to carry the walker so I could carry Thomas. But apparently those ladies didn't realize that Thomas gets his stubbornness from his mama. I let them carry the walker to the door, and then I put my foot down. Slowly, screaming and crying the entire 20 feet to the van, Thomas walked, all on his own, with near perfect posture, flat feet, knees in proper position. He walked, mad at the world (but mostly at mama), each step marking an accomplishment he was oblivious to but which filled his mama's heart with pride. He walked.

Shoes!!

2007-10-03T04:50:00.000-07:00

Yesterday Thomas got new shoes. It doesn't sound very exciting to say it like that, but I was thrilled to go to the therapy appointment where we met up with his orthotics provider. Waiting there for Thomas were a pair of very special shoes, made specifically to fit over his AFO's (leg braces). For once we didn't have to buy shoes three sizes too big just to fit them over his braces. For once the velcro straps were extra long so that when the shoes were over his braces the velcro could actually be closed up. For once he won't be hindered in his walking endeavors by a shoe that is two inches too long and the constant fear of tripping over his own extended toes.

So yes, new shoes ARE exciting! It was like, for one perfect moment, all was right with the world. There was one less battle to fight, one less war to wage, one less weight added to this mom's shoulders. All because of a thing as simple as a pair of special shoes.

Skunked

2007-09-23T19:08:00.001-07:00

I finally get a night out with the girls and come home to a dog that has been sprayed by a skunk! The one night my husband is in charge and this is what happens. Now I know why I never go anywhere. lol

Since it happened on his watch I made hubby give the dog a bath. I found a recipe for de-skunkifying a dog online so he gave it a try. Afterward I went out to sniff the poor guy to see if he was allowed back in the house. Nope, still stinky. So mama had to step in and take matters into her own hands. Armed with a bottle of vinegar and some mandarin orange body wash, I set out to prove to my husband why, after seven years of marriage, he should still appreciate his wife. Now our dog smells like a pickle! But hey, a pickle smells better than a skunk, right? I think so too.

Casts, casts, casts and more casts

2007-09-14T03:37:00.000-07:00

Yesterday I took Thomas in to the physical therapist who has been doing his serial casting. I was so sure he wouldn't need another set. In fact I was hoping like heck he wouldn't. I am so tired of the casts. They make every little thing just a little harder, and in our world we don't need things a little harder. Why can't something out there make our life just a little easier? Anyway, I'm getting off track. So she did decide to put on a new set of casts. She said even though both feet are at +2, she wants to try doing it one or two more weeks. I don't understand why. His new braces are in, I'm dedicated to making him wear them as long as I can each day. I'm ready to move on to the braces and practicing with his walker. Why is she holding us back?

I'm sure she is thinking in terms of what is in the best interest of Thomas. I respect that. But it's been nine weeks now. Nine long weeks of not being able to put him in the bathtub, having to buy new clothes that will fit over the casts, blisters, legs rubbed raw, and the added weight for me to carry around. Also, I don't know if any of you have ever tried to change a diaper on a child who has two very heavy casts on his legs, it is not easy.

Yeah, I know, poor me right? What really matters is that Thomas couldn't care less about the casts. He acts as if they aren't even there. I wish I could have his attitude. And more than just in this instance. If I had his disposition and outlook on life I would be a much happier person. This child is usually smiling, laughing, and finding joy in the most basic and strangest places. He doesn't sweat the small stuff. I really need to take a page from his book.

Just Our Luck

2007-09-11T14:12:00.000-07:00

A few months ago I tried to get Thomas into an intensive therapy program called Europeds. There are only 2 or 3 centers in the entire United States and we just happen to live less than two hours from one of them. At the time the waiting list was extremely long, but we were put on it and patiently waited to get the call.

Meanwhile our new physiatrist got on the ball. He gave Thomas botox injections in his legs, has him being casted and going through physical and occupational therapy, and wrote a prescription for a new set of AFO's (leg braces).

Our insurance company will only cover 60 consecutive days of therapy per YEAR. So however many visits we can fit in a year is all we get. They consider the casting as therapy so that takes away from his 60 consecutive days.

Well, today I got the call from Europeds, they have reached our name on the waiting list. We have just one more full week of therapy available through our insurance though. I am beyond bummed about this. I have heard such great things about Europeds and seen some amazing videos on their website. It makes me so mad that they finally have room for us and we don't have the means to cover the expense.

They have put us back on the list for the first of the year, when our insurance replenishes the 60 days. I am going to make sure I have all my ducks in a row for when the time comes so I don't have to fight with my pediatrician over the referral for this therapy. So I'm keeping my fingers crossed that he can get in in January 2008.

The First Day of School

2007-09-10T17:28:00.001-07:00

Tuesday, September 4th was the first day of school. What a change from last year for mom. I was actually looking forward to it this year. It went surprisingly smooth. Thomas, as usual, cried when I got him dressed. He always does that because he hates to leave the house. I can't say as I blame him since he normally is off to a doctor or therapist where he is poked, prodded, man-handled, and whatever else they do to torture the poor kid. Once he was dressed I wheeled in the stroller and he stopped crying. I don't normally wheel in the stroller unless it is a school day, and I think he knew that even though he had a three month break to try to forget. He happily sat in the stroller for a few minutes before we headed outside. Once outside he patiently waited with his headphones blasting the Wiggles, a book in his lap, and a sucker in his mouth.With the bus I expected tears, but I was pleasantly surprised. Not a single tear. No whining, no crying, no frowny-face, nothing. No smile either, but hey, anything is better than tears.

Thomas is going to the same school as last year, same bus driver, same teacher, same classroom, different classmates.

Therapy makes him sad.

2007-09-10T17:10:00.001-07:00

Poor Thomas. Poor Mom. This is the face I have to look at while we are on our way to therapy. As soon as Thomas sees a certain landmark on the drive to therapy he pulls this face. It is the saddest face I have ever seen in my life and it breaks my heart that I am partially at fault for causing it. It's not that he doesn't like therapy. Once we get there and the therapist comes out for him, he is generally happy. He has fun back there, really he does. So why the sad face? I wish I knew, I wish he could tell me, I wish he didn't need therapy, I wish I wish I wish... But it is what it is and he has to go. So four days a week I try not to look in the rearview mirror. And four days a week I fail, I look, and my heart breaks a little each time.

It's not polite to stare...

2007-08-27T21:30:00.000-07:00

Thomas is in his fifth week of serial casting. Serial casting is a process in which a child who has tight legs gets to endure a series of weeklong casts on his legs. Each week the cast sets the foot at a varying angle to his leg. The result is that, for a few months, the child's legs will be less tight.
Thomas has cerebral palsy, which in his case means his legs are severely spastic, or tight. When he attempts to use his walker he spends his time on his toes. He has been so tight lately that he refuses to use the walker, preferring instead to crawl his way around wherever we are.

So after about a dozen injections of botox in each leg, which will help loosen his muscles, the casting began. Oh what fun it is! To add an additional 8 pounds to my already almost too heavy for me to carry child. "Now don't forget, Mom, do not get these casts wet." Oh Joy! No baths for a week at a time. This should prove interesting.

Now to explain a little further, these casts are not permanent. At the end of each week I get the pleasure of unravelling the material used for the cast. This usually happens an hour or so before bedtime so we can throw in the weekly bath. After four weeks of this Thomas no longer puts up a fight at having to sit still long enough for me to remove them. And after four weeks I have become an expert at finding where one peice of material ends and the next begins. In the end we have a large pile of this mesh-like material, some form of stocking, and usually some very unnatractive brown tape that had been used to keep it all together. I assure you, it isn't the trendiest look of the year, but it sure is functional.

So Thursday is casting day, and since having the casts on makes any activity a lot more difficult, we choose to go about all of our business and errands on casting day. The first day of casting came as a bit of a shock to both of us. Thomas was indignant at having to lay on his belly for two hours while the therapists fought him, kicking and screaming, to put on the casts.

Afterward we headed to the grocery store. That was mom's surprise. No cart for us, thank you very much, it seems they don't make carts for almost-five-year-olds with both legs in casts. So I decide to use his stroller and just grab the bare essentials we can't live without. By now, four and a half years into this game, you wouldn't think that would suprise me, but it did. Maybe just because I wasn't thinking about the small inconveniences so much as the big ones, like no baths, no jeans, and an added 8 pounds to deal with.

Surprise number two came once we walked in the doors. Every person, yes EVERY person we passed couldn't help but gape at Thomas. I admit, it might seem a bit odd for a four year old to be wearing two casts. But couple that with his special needs stroller, which looks like a wheelchair without the big rear wheels, and you'd think people would be able to put two and two together. Not in hickville USA, and probably not anywhere else for that matter. The stares I got, or should I say glares, the whispers, the not-so-subtle glances at Thomas and then at me, were more than I could bare. I grabbed my last needed item and hightailed it to the checkout, out the door, and to my van, where I promptly fell to pieces.

What was I thinking? That I could possibly go to the store for once, just once, without one rude comment or one pointed stare? I can't get that on a normal day, what made me think I could get that on the day Thomas had two casts placed on his legs?

What was I thinking? I don't know. But I'll tell you what I thought when I got home. It's time to order some custom t-shirts. I want one to say "Yes, my mom broke them. Keep staring, you're next!" And maybe "I know I'm cute, but you don't have to stare." Or should I go right to the point "It's not polite to stare"? To be honest I didn't order any of them, but wouldn't it be great if I did?

Almost Four

2007-08-27T21:14:00.000-07:00

I wrote this back in January of '07 and for some reason have saved it all this time:

I'm feeling a bit nostalgic today, as I put my guy on the bus to go to school this morning realizing that in just four weeks my sweet little baby boy will be four! I cannot believe it. After his rough start I was convinced my little man wouldn't make it past his first birthday. Obviously he did, and has continued to grow and surprise me every chance he gets.

Can this big boy, this 35 pound kid who is already more than half my height, be the same boy who came into this world just over eight weeks early, weighing only 4 pounds 1 ounce and just 17.5 inches long? It can and it is and I am so happy and proud to be able to call him mine!

Someone once said to me in a fit of rage that I "deserved what I got" as far as Thomas was concerned. I couldn't agree more. In fact I am not sure I am even worthy or deserving of this sweet boy who has taught me so many lessons in his short life. He is truly my miracle boy, and I would be lost without him in my life. I can't even remember life before him, and look forward to what he's got to show me next.