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.

How could it be???

In a few short days, Ryan will be finished with junior high and will be off to highschool this September! How can this be possible? It seems like only yesterday that I was attending his very first day of kindergarten with him. A VERY nervous mommy leaving him in the care of someone else, other than grammy, for the very first time! We have had some VERY rough times and have been through so much together. But, I am so proud of the young man he is becoming!! We love you so much Ryan!!!

Been busy!

I've been a little behind on updating both blogs lately. Been on TWO trips over the past 2 months and been SUPER busy! We took our family on a trip last week to Disneyland. We knew ahead of time that it wouldn't be easy. We have 3 kids spaced pretty far apart in age with different interests AND abilities! Needless to say, Disneyland wasn't exactly the best place for my boys. But, it was perfect for Jorie. We also visited the beach while we were there. Jorie and Joshua LOVED it. But, Ryan didn't like it so much. Even with his new all terrain wheelchair. So, it was a little disapointing. We had hoped that Ryan would enjoy being able to get out onto the sand for the first time in years. But, instead the chair was a bit uncomfortable and not so easy to push through the sand without bumping his head around. So, we hope to adjust it and take him out again when we get all the kinks worked out. I hope to update our other blog shortly all about our trip to Disneyland!

:(

Ryan has done so well over the past few months! In fact, we all have. We had a horrific fall with Swine Flu sweeping through our entire family one by one. I thought it would never end! Ryan is sick once again. And it started out with a pretty decent fever this morning of 101.3. I'm not happy about this at all. His 14th birthday is coming up in less than a week and it will break my heart if he has to be sick on his birthday! Hopefully, this ends up being nothing more than a mild cold and he is well in less than a week. We will see what the next few days bring. Ryan may end up getting 2 weeks of spring break! Please keep my boy in your prayers. I never know which direction an illness will go for Ryan. He could be in the hospital fighting for each breath in a matter of days, or he could fight this illness at home with us stepping up his treatments!

Ryan's friend, James

Ryan had his friend, James, over on Saturday. The two enjoyed video games and chatting about school for most of the afternoon and into the evening. And as is tradition, whenever James comes over, we always have pizza for dinner! It has been quite a while since I have seen James and I was shocked when he walked in the front door. He is nearly 6 feet tall now and just towers over all of our family! I know I have said it alot recently about how shocked I am that I have an almost 14 yr old boy! But, I think it's more "real" to me when I see his peers. They are growing so tall and I can really see through them just how old my boy is getting. It's much harder to see how much Ryan is growing as he's sitting all the time and with his spinal fusion, his torso will never grow anymore. And, although, Ryan is definitely growing...he is still somewhat small for his age. And I had to snap a picture of my foot next to James' shoes. Although, I do have small feet; the comparison was pretty funny.

PS....

This is NOT typical behavior for Joshua. He really is a nice child and caring towards his brother. But, he was throwing a tantrum and Ryan happened to be in his path!

Helpless

Being completely helpless ,or in this case defenseless, is NOT a good thing when your 2 yr old brother throws a temper tantrum while mom is in another room and decides to take it out on his 13 year old big brother just because he knows he can!!! Joshua decided to take out his frustration on big brother's face. This is one of many things that are TERRIBLE about SMA. Ryan was completely helpless in not only could he not push his brother OFF of him... But, he also couldn't yell loud enough for me to run in and rescue him. Joshua had a LONG talking to and was punished for his actions! But, poor Ryan still has these scratches on his tender face. :( It reminds me of a time when Ryan was only about 3 yrs old. Our van was parked in my parent's driveway and I left him for a couple of minutes in the van while I ran into my parent's house to grab some of his things. When I returned he was crying hysterically because a bee had landed in the car near him and he was completely helpless to do anything about it. He couldn't even swat it away! I felt so terrible. I had to hold him and comfort him for several minutes afterward. Oh the joys of SMA.