Thursday, June 20, 2013

Facing the Giant

We find ourselves, once again, facing changes. When I got the call I hung up the phone, filed away what I had just heard in the back of my mind and pretended that nothing new was happening. Denial isn't so bad; I was not ready to tackle this new Hill. Now, almost a week later, I realize it is time to face the giant. So I pull out the information from my mind and start plotting how we are going to get through this one. I have to tell Ryan, knowing how he is going to respond, wanting to soften the information and pretend it doesn't mean anything. Convincing him that it is all perfectly normal, pretending for his sake, that it is all okay. 

A few weeks ago Ryan had a sleep study done. We got the results back last week. The news was not what I wanted to hear but to be honest with you, I wasn't surprised. As much as I wish we would be unique in this disease, Ryan is following along the course, just as the textbooks predict.  Ryan’s results showed that he has what is called Hypoventilation. Hypoventilation is too shallow or too slow breathing, which does not meet the needs of the body. If a person hypoventilates, the body’s carbon dioxide levels rises. This causes a buildup of acid and is an inevitable consequence of Duchenne muscular dystrophy (DMD), usually preceding daytime respiratory failure. It also showed that Ryan was having intermittent sleep apnea. This is all due to the decrease of lung function.   

Once again, we have a mountain to climb.  This mountain goes beyond just the physical need for a bi-pap machine; it involves a hurdle of emotions attached to a deeper mean for Ryan. Facing the giant that has been in the back of our minds for years, knowing one day it would show. Let me start a few years ago.
Ryan first attended MDA summer camp when he was around 8 years old. He didn't like it and I had to pick him up early. The following year we talked him into trying it again, and like the previous year didn't make it more than a few days before wanting to come home. I didn’t understand why. It was an environment built around his needs and the needs of other with neuromuscular disease. It was supposed to be a place where he didn't feel out of place, where everything was inclusive. It took a long time before Ryan finally opened up to what was truly bothering him about camp. It was during bedtime that he noticed older boys having to be hooked up to a machine to sleep. He didn't understand it and was afraid. He said, mom they must not have the same disease that I have because I don't need that. Then he would go on to say that maybe his disease wasn't as bad as theirs, because he didn’t need a machine to help him breath.  We tried to explain to him the best we could, not wanting to go into too much detail of what his future would hold. Knowing there were details that his young mind didn't need to know.  So over the past few years we have slowly started to introduce the fact that the bi-pap machine is very helpful, and as gently as we could, let him know that there might come a time where he would in fact need to use one as well. He never wanted to talk about it; he didn't want to accept the fact. Whenever the doctors would bring it up, Ryan would shut down and ignore them. In his mind, as long as he didn't need the machine then he wasn't as bad off as other boys with Duchennes. So now we are forced to except that this is now going to be part of Ryan’s life. We have to help him not only get used to the physical discomfort of the bi-pap, air being forced in and then pulling his breath out, but that in deed we are to the point of needing this and all the meaning behind that. To Ryan it signifies another loss, facing reality that indeed this disease has changed his life again, facing the giant that he has tried for years to ignore.   For us it is once again grieving another loss. Helping Ryan to be okay with it, pretending we are okay, yet knowing in our hearts that we have to grieve yet another loss in Ryan’s life. We have to accept it, grieve it, so we can find our new normal again

Saturday, June 8, 2013

National Duchennes Awareness day. Please help to give our boys the gift of time.

Today, June 8th, is National Duchennes Muscular Dystrophy Awareness day.  

Duchennes, or DMD affects 1 in 3,500 boys. It can come into any family. It knows no boundaries and is non-discriminate. It does not care your race, where you live, or if you have a family history or not, it can happen to any family!  
It happened to us.  Duchennes entered into our family when Ryan was 5 yrs old.  We have no family history of it and we were taken completely by surprised.  Although the diagnosis its self is probably one of the hardest things you will ever  hear, when you are told  that there is nothing you can do to help your son makes it one of the worse things you will ever hear.  Currently there is no effective treatment and no cure. Duchennes is 100% fatal. Your son is given a death sentence with this diagnosis. That is why today is so important for those of us that have boys in our life that are dealing with this.  We need people to be aware of this disease, once awareness happens then the community can help us to push to find a safe, effective treatment or cure soon.  Soon is the big word here. We don’t have time on our side; you see DMD causes our boys to die at a young age. Young age meaning most don’t live to see their 20s. Ryan is almost 16 yrs. old. So thanks to DMD Ryan’s life is ¾ of the way done. Can you imagine that? That is the reality of what we are dealing with.  I won’t even get into the details of what he physically has and will go through in his short life thanks to DMD.  

Time, we don’t have the luxury of time.  So for this one day, would you please post this on your time line? As I said, DMD parents feel helpless, but one thing we can do is push that DMD awareness happen. As we all know in our world, those things that have the most press and exposure are the things that get the most attention. We are hoping that more exposure will mean more pushing for research, which will hopefully one day SOON bring hope to DMD families, to Ryan .