My boy

Ryan with cousin, Darren

Just a post asking for your prayers this season. Every year as we get ready to celebrate all of the holidays; along with the stresses and busy-ness of the season, I always feel an extra burden. Wanting so badly for Ryan to stay healthy. I woke up this morning not feeling so well myself and of course that is not a good thing when you are caring for a medically fragile child.

I also wanted to ask that you keep Ryan in your prayers for another concern. His right hip has been bothering him now for quite some time. Due to his disease there isn't any muscle holding his hip into its socket. So, it has actually been dislocated since he was only about 3 years old. At that time, the doctors told us not to worry about it as he would never walk. However, now it's causing him so much pain that it's affecting his sleep among other things. This morning, I was putting his shoes on him and he cried out in pain that his hip hurt. I hate this disease so much. But, even more when it causes my child pain and feeling helpless to do anything about it.

He's 15 and driving!

For the past couple of years, Steve has been taking Ryan to one of his customer's homes. Really, this customer has become more of a friend as he and Steve share many of the same interests! One of them is VERY fast cars! They also share an interest for chess; as does Ryan. Ryan is an excellent player and has been playing since the age of 6! So for the past couple of years, Ryan and Steve have been going to this friend's home to look at his amazing car collection as well as play a few games of chess. Last weekend, he actually visited us at our home and brought his car with him. Ryan got to sit in it (actually the 4th Ferrari he has sat or riden in!) and Steve got to drive it. :) In the picture below, you can see the smile on Ryan's face as he sits in the car. But, he didn't have the strength to turn his head for the camera. He was a happy boy though! It's not every day that you get to sit inside such a beautiful car. Ryan may never be able to drive a car; although he is now 15 and many of his peers are learning to drive. But, he can always say he has sat in some pretty amazing cars. This one costing more than our home!

My boy

Please keep Ryan in your prayers. He has been battling a cold for over 3 weeks now and I know it is really beginning to get to him. He just can't seem to get over it! It's not so bad. He has been able to attend school this week. Both Monday and Tuesday; only going in the afternoons though. In addition to the cold, he just seems down lately. I know that SMA kids can sometimes experience depression in their teen years and I think that is the case with Ryan. He just seems extra irritable lately. Just makes dealing with this disease that much harder. :(

My baby is growing up!

(Ryan-age 3)

My firstborn will be 15 years old in a little over 2 weeks! FIFTEEN!!! He will be considered an adult in a little over 3 years from now! This has been an interesting time for us all. We are learning continually. Not only is this our first child to reach adulthood. But, we are also faced with challenges of his disease. Letting him go and become independant has been extremely challenging. How do we let him go when he's still so incredibly dependant on us? Ryan lacks ability to do most any daily task...dress/toilet himself, brush his teeth, prepare himself a meal, get into bed, turn in bed. Even lifting a cup to take a drink of juice is difficult for him. So, you can imagine how we are torn of just how much we can let him go?? We can't leave him home alone (which he hates) as he could drop something (including his cell phone) and be unable to pick it back up or even more worrisome, he could choke and noone would be there to help him cough or suction secretions from his airway. We have always had the mindset of taking this disease one day at a time and enjoying each day we are given with Ryan. But, now that his future (adulthood) is SO close, we are having to mentally prepare ourselves for it more than ever!! Please remember Ryan and US in your prayers as we face these challenges together. I believe the Lord has wonderful things ahead for Ryan!

Good things are happening!

I decided it was about time I posted a positive update on Ryan. There are always plenty of discouraging things to write about it seems. But, there are also some very good things happening too! For the second time in the past few weeks, Ryan has scored the highest on his test out of every freshman math class! He was very proud of his acomplishments; as we all were. Math was not my best subject in school. So, I'm hoping he continues to do well in this subject! He seems to be enjoying highschool. Getting A's or B's in all of his classes. Having a child who is so limited is very difficult at times. But, it does have its positive sides too. I really never have to worry about him staying out late with a friend, skipping class or even smoking! It would be pretty hard to skip class having a nurse with you at all times. LOL However, it also has its downsides too as you can imagine. Peers are less likely to approach him at school. Partly due to the 300 pound electric wheelchair they see. But, also because Ryan never goes anywhere without his nurse by his side. When he was younger, it wasn't a big deal. But, now that he's older and his peers are older, they are wanting more and more privacy and independance from adults. Speaking of Ryan's nurse. We just love her. She is amazing!! We hope to keep her throughout the remainder of Ryan's school years!

Pray for Ryan

Please keep my boy in your prayers. Some days with this disease are harder than others. Today is one of those days and it's not even 9:00 am yet! He woke up this morning around 7:00 and wanted his shower, as usual. Its been a few years since I was able to shower him as he's gotten so big. Steve is pretty strong and he has felt confident that we didn't need to modify our bathroom for Ryan as he could still shower him very easily. To shower Ryan, we lower him into the bathtub onto a chair that sits inside the tub and then he is able to spray himself with a detachable shower nozzle. It's not the best setup. But, it has worked since we moved here when Ryan was 5 years old. Maybe the time has finally come where we need to do something different. Today when Steve was lifting Ryan up out of the tub, he somehow hurt Ryan's back. Keep in mind, that sometimes just grazing a foot the wrong way can cause extreme pain for Ryan. Even the act of putting on his socks or shoes can cause him extreme pain. It has just become our "new normal". He experiences pain on a daily basis. Some days it's worse than others. It's never easy to see your child hurt and feel so incredibly helpless in easing his pain. Showering and getting dressed aren't things he can do without, obviously!! So, often times, causing him some pain is something we can't really avoid. The bigger he is getting, the more pain he seems to experience. I can't say it enough times at how much I'm looking forward to heaven. My boy will be whole and free of pain and disease.

Loss

Last night when I was tucking Ryan into bed; he shocked me with a strange question. I was doing all of our normal adjustments; being extremely careful not to nudge his right leg (the one he broke back in July) while tending to his needs. Then he asked, "Mom, why don't we just have my legs amputated?" "All they do is cause me pain." It took me by surprise and I was a bit speechless for a few minutes. Over the years, I have learned that in order to get through each day with this disease, SMA. Sometimes, you have to put on a smile for your child even when you feel like running into your room and pulling the covers over your head and sobbing uncontrollably. Sometimes, there really is no good thing to respond with other than an "I love you". I believe his dad was in the room with us at the time and the two of them began joking around that Ryan could certainly do fine without his legs. My hubby always has a way of lightening the mood. I then began my positioning of Ryan's headgear that goes to his bipap. Ryan asked if I could lift his right hand to his left ear. Puzzled, I moved his hand. I realized just how weak his left hand has gotten. He then said, "Mom, my left hand is basically useless to me now." So, not only can my child NOT lift his hand to scratch an itch without my assistance. But, now he can't even lift his left hand to scratch his left ear?!? I held his small, 14 year old hand in mine and just told him that I loved him and I was so sorry. He was basically the one comforting ME! He knows that one day his body will be whole and that he will have no more pain or suffering. He is truely an amazing boy. That night, in bed, I was finally able to release my emotions. There are days where his disease, SMA, just gets the better of me. And after I have a good cry, I am okay again. Please always be thankful for every ability your child has. Even if that means, the ability just to reach up to scratch an itch. Or to position themselves in bed. My child can't do either. I often wonder how many times a night he lays there with an uncomfortable itch that he can't scratch. I can't wait for the day where I will see my child standing and walking, healthy and free of this awful disease that is destroying his body little by little.