God amazed me again today. Here we are having a lay around and get Steven well day and God sends and angel to cheer him up. Steven absolutely idolizes his big sis’s old boyfriend Garrett. He thinks he is so cool. So today Garrett was going to walmart and called to see if Steven would like to go with him, just to get out. What a blessing, for Steven to have a peer to go do something with, and for me to have some free time. It is so encouraging to see a youth reach out to a kid like Steven. What a small but meaningful gesture.

Sick!!! Happy Valentines Day

Steven has a terrible cold. I hate it when he is sick. It is so sad. Because of some anatomy issues that are normal in people with Down syndrome it makes having any kind of sinus problem worse. He just can’t breath through his nose at all. We work on him with sinus washes and nasal spray and cold medicine, but it is just a horrible week no matter what you do. So here we go again. But it is the first time he has been sick this year and that is such a blessing. Years ago when he was under 8 we spent most winters in and out of the hospital, on constant antibiotics and having ear and sinus surgeries. Those were tough years. I praise the Lord that I was younger and had more energy because we just operated on no sleep most of the time.
But even though he has had sinus surgery to open up his sinuses, and his tonsils and adenoids removed he still struggles with any kind of sinus illness. He is such a trooper. He takes his medicine and when it works tells me how he is not sick anymore, only to have the symptoms return a few short hours later. I will pray that this one will go away on its own (and soon) without antibiotics. And maybe next time his immune system will be that much stronger.

Steven has always loved guitars and has at least 3 toy sized ones. He jams out on them and sings love songs to his sister. So we decided to try Steven in guitar lessons. We were lucky enough to find a guitar teacher that has a brother with special needs. He was more that happy to give this a try. I am happy to report that it is going well. After 4 lessons, Steven is learning to play some simple chords. I have to admit I was a bit skeptical, but once again Steven has exceeded my expectations.

School Fund Raisers

O.K. Steven comes off the bus with a great big smile and a baggie full of something he is excitedly holding out and talking about as he comes up the front steps today. When he finally gets in and explains, I find that he has been given 9 candy bars to sell for his choir class. You’ve all been through this right? The choir, or band or whatever needs to raise money so they send your kid home with a box full of candy bars to sell to your friends, neighbors and relatives. You groan and ask how many are in the box and just right a check. After all it is better than walking around your neighborhood in the freezing cold or taking them to the office. Well not if your Steven’s mom. How could I. He was looking at me with those big blue eyes and telling me how he was going to sell them to people for $1. If you could only hear him. So I finally agree, but I explain that I need to shower first. As soon as I get out of the shower Steven says, your hair looks fine mom. He does not want to wait for me to dry it. Laughing I tell him he will just have to wait. He stands in the doorway to the bathroom the whole time saying, your hair looks fine, mom. When we are finally ready to go I have to stop off at the post office to get the mail. When I come out he has his window open and is waving to me. When I get in the car I find out he has sold a candy bar from the car window. How could anyone refuse his face? So we make the rounds and sell all 9 candy bars. I am thinking, that was a piece of cake, they should have given him more. Then he begins to tell me how we need to go home so he can put the money in his wallet. Uh, Oh. With all the excitement I didn’t even think about the fact that he thought he was selling this stuff to make money for himself. You should have seen his face. Of coarse that is what he thought. Why else would he go to all that trouble? Well he accepted it pretty well and after all we had so much fun. It is so funny that after 15 years I still have trouble seeing through Steven eyes. I learn something new everyday.

Dessert Friday!

Yesterday was dessert Friday! We had to stop having dessert so often (no easy task), because Steven is struggling with his weight. So we started having dessert Friday. So every Friday Steven wakes up in a good mood and announces “Happy Friday”. Unfortunately it doesn’t mean we only have dessert on Friday, because there is always some special occasion. So we usually have dessert weekend (I have got to stop this).

I decided to start writing about my experiences raising Steven as well as other crazy things about my life. I am terrible at journaling so I don’t know how this is going to go but I am going to give it a try. I am calling this “Blessing in Disguise” because that is exactly what it is like to have a special needs child. When your child with a disability is born you think; this is going to be terrible and life changing (and your right) and that God must have something to teach you (right again), but what you don’t expect are the ah ha moments that take your breath away. One example of these moments is when Steven at 15 finally learned to ride a bike. Everyone knows that it is a big deal to learn to ride a bike at any age. The parents are excitedly on the sidewalk with the video camera as the little tyke rides by, pedaling furiously with a big smile on their face, but when the little tyke is 15 and 130lbs the joy is inexplicable. We not only waited a long time for this we weren’t sure it would ever happen. Only after he learned did we find out that only 10% of children with Down syndrome ever learn to ride a bike. I couldn’t believe it, he was one of the 10%. Wow! Once again God has blessed me beyond belief. I hope this will be a source of encouragement to some, but there may be days that it is just a way to vent some frustration. In any case I will attempt to chronicle some of my life’s journey.