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.

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!