My first boy

Looks like maybe Ryan had us all fooled. He seems fine today. So, I am going to relax a little!

I have been thinking alot lately about how having my first child with such a handicap has affected my way of parenting. My first experiences as a mother were filled with hospitalizations,fear, sadness, stress, heartache and disappointment. I often wonder how different my perspective would be if Ryan had come 2nd or 3rd in our family. Would I have had a more balanced view? Would I not be SO extremely careful with my other two kids, worrying about every little germ or every little milestone they reached or didn't reach quite on time?? On the other hand, maybe I wouldn't have appreciated all the things they are able to do quite as much if I hadn't had Ryan first. I find myself thanking God for even the smallest of accomplishments. Whether it is the ability to dress themselves, brush their own teeth, get in and out of the bathtub on their own, or even the ability to help me out with laundry or cleaning! Steve and I sometimes joke that we currently have 2 boys that wear diapers and won't it be nice when we only have 1 that still requires a diaper at night? Of course, Ryan is potty trained. But, since he is unable to get up at night, he still requires the use of a diaper. In addition, he is fed through his Gtube at night making his tummy and bladder that much more full! I often wonder why God allowed this special child into our lives and I still struggle with this disease; SMA. It's painful to see your child miss out on so much, to see his peers shy away from him at school unsure of how to relate to him, or just how much physical pain he has had to endure. I sometimes want to pinch myself and wake up from the nightmare that is SMA. But, I know that God works ALL things together for good. And I know He has a purpose for Ryan's life. Meanwhile, I will cherish everyday we have with our special boy and being that much more thankful for every little thing my other two kids are able to do!

Might be sick again?!?

Well, here we are again. I am not sure what is going on with Ryan. But, I sure hope it's not a respiratory bug. It sure seems that way to me. His o2 sats are low tonight and his heart rate is a bit elevated. He also has increased secretions which is usually a sign that he is getting sick. Please keep my boy in your prayers.

Outdoor fun

In between games of Monopoly and Sorry, this is what Ryan spent alot of his time doing yesterday. Burning sticks and dried up leaves with a magnifying glass. I am thrilled that this is an activity that he CAN do as so much of our outdoor activities, he is unable to participate in with us. In addition, the weather has been a little too cold for him to be outside for very long. However, yesterday we had a few sunny spells where Ryan was able to be outside for a little while. I find myself thankful for even the smallest things after having a child with such a handicap. There is so much Ryan cannot do. Last week, I think Ryan did have a small bug of some sort. Some sort of tummy bug that made him just feel "off" and not much of an appetite. Thankfully, it never amounted to much of anything other than 2 days of missed school. But, he did lose some strength in his arms during this time. This is not at all uncommon with SMA kiddos and especially during an illness. They can lose strength in a matter of days due to illness and sometimes, it never returns. When Ryan woke up the 3rd morning and still said he could barely move his arms at all, it began to worry me a little. However, by the 4th and 5th day, he had gained the strength back in his arms. I am so thankful for each and every movement that Ryan has and each and every activity that he can do independantly!

Don't think he's sick

Well, it's Ryan's second day home from school today and we still don't think he has any type of illness. I really just think he's over-tired. Don't think he has been getting enough sleep for the past several days. Hoping to fix that with earlier bed times to help him catch up a little! It doesn't take much for these kids to lose strength or just feel "off" when just one little thing is off with their schedules! He has been enjoying some time today with Joshua though. The weather here is so beautiful today that they have been outside together. Ryan has been trying to burn things with his magnifying glass and Joshua if fascinated by it!

Worried

I'm not sure if Ryan is just "off" today or over-tired or what. But, please keep my boy in your prayers. I worry about him so much this time of year. Spring seems to be really bad for Ryan as he has a history of pneumonias and oddly enough, they usually happen in the spring time! I am praying that what he has going on this morning is nothing more than being up late the past two nights in a row!

New watch

I took Ryan shopping on Thursday for a new watch. His birthday is coming up next month and he really wanted a watch! So, he picked this one out. It's pretty fancy. I wasn't sure if they would be able to make it small enough for his wrist. But, they were able to! The face is HUGE though. But, Ryan likes it! ;)

Becoming a young man

It's hard to believe that my firstborn is going to be in highschool this fall! It is amazing to me since it really does not seem like that long ago since I was in highschool myself. The years seem to fly by faster and faster all the time.

I rearranged Ryan's room the other day. Went through all of the things stored under his bed. I found all sorts of old school projects, poems and art work that he has done over the years. It made me tear up a little to think of how fast his gradeschool years flew by and now I'm sure his highschool years will fly by just as fast. But, I am so proud of the young man he is becoming. One of his favorite things to do is listen to preaching on the internet. There are not many teens that you can say that about! He has outlived his prognosis by nearly 11 years now! God has big plans in store for him. I just know it!

A rough week

This has been a particularly difficult week for those of us in the "SMA community". Two precious children have died this week. Over the years we have become somewhat accustomed to seeing these precious children die too soon. Many that have type 1 (the most severe form of the disease) don't make it to their first birthday. As parents are learning more about this diease and how to care for these children, they are living longer. But, most will not live into adulthood. Ryan has SMA type 2. And although he is quite a bit stronger than the type 1 children, he too has been on death's doorstep more times than I can even count. There have been many, many times over the years where I thought we had lost him; only to have him come back to us. So many hospitalizations that I have literally lost count. Mostly due to pneumonia or lung collapse brought on from something even as minor as a common cold. I imagine that he looks somewhat "normal" to most people who see him sitting in his wheelchair. But, they have no idea the damage this disease has done to his body and how weak he actually is. His body is already so deformed from this dreadful disease. His little feet are turned in, his legs are severley contracted and his back has been fused with a titanium rod from the base of his neck all the way to the top of his bottom. He doesn't have the strength to lift his hands to his head to scratch an itch, he cannot blow his nose, he cannot brush his teeth and if he's lying in bed; he is able to move little more than moving his hands and feet or wiggling his toes. He is essentially paralyzed while still having the ability to feel. We have found that as Ryan has gotten older, although we are beyond blessed to have him still here with us, in some ways his disease has gotten more difficult. The hospitalizations are less frequent for sure. But, his body is bigger and more awkward to carry around. He is much more limited in what activites he is able to do. In the past, if Ryan wanted to play in a park or go down a slide or even go innertubing in the snow, we would simply pick him up and do these activites with him on our laps. Now that he's older and bigger, these are things that Ryan is only able to watch his siblings do or he is left at home unable to participate at all. We are also now dealing with the teenage years. For MOST teens, this is a difficult stage in life. But, for a child so dependant on others for simple daily tasks, this makes it even tougher. We have noticed that Ryan has pulled away from his peers over the past couple of years. I know it is because he feels different from them and doesn't quite know how to relate to them. Although we are completely understanding of this fact, it hurts us to see him not have a group of close friends that he can hang out with. But, on the positive side, he has an incredible attitude and it really doesn't seem to bother him. I think it bothers us as his parents more than it bothers him. I think the other thing that makes this time of life so difficult is that while his peers are getting more and more independant of their parents, Ryan is actually becoming more and more dependant on his. While other kids are walking to school or dropped off at a movie theater or the mall, Ryan really cannot go to any of these places without an adult with him that knows how to care for him. A cure for this terrible disease cannot come soon enough. We need that cure so that no more children will have to suffer the effects from this dreadful disease.