R.I.P. Pat

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

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!

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

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

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...

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

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.