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.

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!

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.