Sorry...just a few questions that came running through my already cluttered mind. Now, on to the most important question...what has our little Noah been up to lately? It seems as though there is no end to the torture devices that enter our house. Some are better than others, but they all still point to one evil.....SMA. I have watched as my precious son continues to struggle more and more. All I can do is to sit back and watch as this disease continues to take more and more of a toll on his already fragile little body everyday. As I watch thoughts creep in. God what did he do to deserve this? Why is he having to go through this? Will SMA take the one gift we prayed so hard to You for, away from us? What will happen next?
Within the last two weeks, it feels like we have been from one end of the spectrum to the other. Noah's new stander was delivered. The pulmonologist prescribed Noah a bi-pap machine that we picked up today, after a two hour wait. Wednesday he goes to get casted for his RGO brace. A new, additional PT and OT alternate every Monday to come and help strengthen his muscles. The previous question comes into play now "What's next?" It seems like more and more is put on Noah's shoulders everyday. How much can this child take? Apparently more than his parents. I know for us, it's not just that he has SMA; it's the fact that we feel like he is being robbed. Just watching him, you can see he is happy. It just breaks your heart to watch him struggle day in and day out. Anyone who has every been in the military or heard people talk about "boot camp", knows that new recruits are forced to crawl through tight spots and muddy trenches, all while being timed. I would give anything on this planet, even my own ability to walk, just to give my son the opportunities that (right now) he will never be able to experience. Snow boarding, hiking, rock climbing, football or just about anything outdoors. It was one of the reasons we wanted to move to Utah. We did it to give him a better outdoor experience and opportunities.
When Lauren found out she was pregnant, we were both terrified. Even more questions flooded our already overwhelmed minds. Will baby Eli have SMA? If so, what type? If Eli doesn't have it, will Noah resent him/us? What, when, where, who, why? So many questions and it seems like very few answers. That was until February 21, 2012. We finally received the news that we had been waiting for weeks to hear. Baby Eli does NOT have SMA. Now we just have to sit back for a few years and see how things go with Noah. Hopefully, one day soon, we will be able to put a post on here that says Noah has been cured of SMA. Until then...all we can do is hope, pray and educate.
New Stander
First time in Bi-pap mask
My heart goes out to you and your family. My son also has type II SMA. He is the fourth child in my family to be diagnosed with SMA (my only child). I hope for a treatment or a cure but until then we trench on with our everyday hurdles. It will get better. Prayers everyday...
ReplyDeleteI hear you loud and clear...
ReplyDeleteWe have an almost four-year-old son, Nicholas who has SMA type 1/2 so I completely understand what you are going through. At nearly three years after his diagnosis though, I look at his disability as a beautiful gift. I know, you are probably rolling your eyes and thinking I am crazy, but it took me a couple years to get to this point. To me he is a little part of Heaven here on Earth, sent to teach everyone he meets about love, patience, and kindness. I am hopeful for a cure, but know that even if we don't see one in Nicholas's lifetime, he brings nothing but joy to everyone who has the pleasure of meeting him and not many people can say that about their lives. One thing that helps me is this passage I stumbled across several months ago. I think it is beautiful and wanted to share it with you:
ReplyDeleteWhy Does God Create Disabled Children?
I read this passage this morning after hearing of another child who lost his life to SMA. The words written as an answer to this question make me cry every time I read them. They are exactly how I explain Nicholas's existence, written in a more eloquent way. Nicholas is a gift sent from above and a blessing to us all.
Question:
A friend gave birth to a baby with a rare condition that has rendered her severely handicapped. She is not expected to live much past her third birthday. I just can't understand why God does that. If life has a purpose, what is the purpose of such a short and sad life?
Answer:
Every birth is a gamble. A soul enters the world innocent and pure. But it may not stay that way. This world is a maze of diverging pathways, both good and evil, and the choice is ours which way we go. Once a soul enters a body, it is free and therefore vulnerable to corruption. While acts of good elevate the soul, every act of evil makes a blemish on the soul.
Some souls are so lofty, it simply isn't worth the gamble. These souls are too precious to risk being compromised by life in a body. They are too high to come down to this world. But the other option, not to be sent down at all, to never reach this world, would mean that we would miss out on meeting these holy and lofty souls and hearing their message.
So these souls do come down. But in order to be protected from the potential evils of an earthly existence, they are sent down into a body that will not compromise their holiness. They enter this world in a form that is above sin, above evil. From a purely physical perspective we call them "disabled" or "handicapped"; from the perspective of the soul they are protected. They will never sin. Their sojourn in this world is often brief, and in terms of this world may seem sad. But they have retained their purity. And they have fulfilled their mission.
These special souls remind us that true love doesn't need a reason. We often love others for what they give us -- we love our children because they are cute, smart, and high achievers; we love our spouse for the pleasure and contentment they give us; we love our parents because they care for us. This is love, but it is not pure.
When a child is born that will never achieve worldly success, cannot provide the usual source of pride for her parents, all extraneous reasons to love her fall away and what's left is the purest love that there can be. These children are lovable not because of what they do for you, and not because of what they will one day become, but simply because they are.
These pure souls remind us what love should be. Only such a pure and holy soul can elicit such a pure and holy emotion. We can only stand in awe of them, and the parents and friends who care for them. And we can only thank them all, for giving us a glimpse of what true love really means.
By Aron Moss
So I believe our little SMA kiddos are precious little gifts and are so joyful because they chose this journey. They are wiser than their years and we can learn so much from them. Wishing you all the best as you prepare for your second little soul!!