I can honestly say I have been attempting to sit down and write this blog entry for a while now. Although I have a million thoughts and emotions constantly surging through my heart and mind right now, I have struggled with finding the words to accurately express my thoughts and feelings. Maybe, because I myself, don't really know what they are. These past few weeks I've felt incredibly raw and vulnerable. I bought into something last month that I kept warning myself not to do, I grabbed onto false hope. I knew if indeed it was proved wrong, I would be crushed. I knew in my heart that it probably was an inaccurate life line we were reaching out so desperately for, but as any Mother of any sick child would do, I chose to ignore the brutal reality and reach for hope. What was my hope? For something treatable, fixable, reversible... For this to be some horrible dream that we would just wake up from. For those days that I look over at Camden while just sitting around the house relaxing, without an obstacle for him to endure, seeing that he physically looks ok and I don't SEE his disease..for those moments to be the reality.
It has been a hard pill to swallow learning that at age 6, not only is Camden showing a large amount of muscle wasting at a rapid rate, but also signs of lung weakness and heart involvement. I think I was finally in an area of acceptance with the muscle weakness and deterioration. Being that Camden can still walk right now, we haven't hit the parts of this disease that always loom in the my back of my mind each night before I fall asleep and immediately each morning when I wake up. We have somewhat accepted the path he is now on with all the Dr appointments, labs, physical therapy...it becomes routine life.
For some reason, I found myself anxious about Camden's first appointment in Dallas but not worried. I've always knew it in my heart that Camden had muscular dystrophy when we started this journey on Jan 3, 2014. Although San Antonio failed us figuring out the genetic cause of it and denied him the help he needed then, using him as nothing more than an experimental pin cushion, I was comforted in knowing we were on the right path. After many days and hours spent on extensive research and networking, I was getting my baby to where he finally needed to be for REAL help. I was ready for him to be thoroughly examined and I was even more ready to find out a clearer picture of Camden's medical prognosis.
In that moment I felt the life slip out of me. I was not prepared for that. It was rare. He wasn't going to be one of those cases, remember? It was all I could do to keep a strong face and not literally vomit on the floor beneath me. I tried so hard focusing on the rest but all I wanted to do was take Camden in my arms and run from reality. I wanted far away from the hospital. I felt trapped in that tiny room, suffocating...
I walked out of that building, through all the elevators, walkways and parking garages in a daze. My body was doing what it needed to do but my mind and heart were a million miles away.
His heart and lungs were in danger? He was so progressive that it is puzzling to this world renowned neurologist that deals with neuromuscular diseases on a daily basis? What did this mean for Camden? What was in store for him? How long would we truly have him??? I was sick. Sick that this could be happening, that my baby could even be that rare case. WHY? His precious baby heart... How DARE those doctors in San Antonio! How dare they deny my pleas for a cardiologist! How dare they ignore him for months and let him get so much weaker without an after thought...
As much as that all pains me to think about, I've recently learned to let that battle go. Fighting the what ifs and the idiots back in SA do not help my son. Fighting for the right care and answers now are what he needs. So we will, we will fight. Just because we didn't get good news and things don't look great, does NOT mean my child is a lost cause and has lost this battle. It does not mean I will sit back and let some disease take him over of any of us for that matter. It hurts terribly and I have cried many a tear for Camden and will continue to along the way, but it is Camden's life at stake and his little body and heart that have to endure all of this. I've been fighting my way back to hope for him. Not false hope, not regular hope, but biblical hope. HE deserves that and so much more than this!
Webster's definition of hope is a feeling of expectation and a desire for a certain thing to happen. The biblical definition of hope is "confident expectation." Hope is a firm assurance regarding things that are unclear and unknown. Hope is a fundamental component of the life of the righteous. Without hope, life loses its meaning and in death there is no hope. The righteous who trust or put their hope in God will be helped, and they will not be confounded, put to shame, or disappointed. The righteous, who have this trustful hope in God, have a general confidence in God's protection and help and are free from fear and anxiety.
As we approach the upcoming cardiologist, pulmonary and biopsy dates in the next few weeks, I ask of you all to fight and pray with us. I've prepared myself for what could happen and what we could be facing, but I remain hopeful for the best possible news for his disease. Each day is a new day and each day is another day to pray for Camden, pray for a cure and fight like crazy to see the next day. It is another day to smile and be thankful that Camden was chosen to be MY son. God gave me the greatest blessing of all being his mother.
I will leave you with a video and blog from Mitchell's Journey, the incredibly inspiring journey of a 10 year old boy who lost his battle last year to DMD due to heart failure. This little boy and his family are an inspiration of love, courage and faith to me and many around the world. In this video they learn the truth of Mitchell's heart deterioration caused by his disease. This is one of the same things we will be facing June 26th. As terrified as I am, I needed to see this video. I needed to be prepared for the worse so I could hope for the best. #teamcamden #camdenthestrong #fightasafamily #prayforacure
Mitchell's Journey: Matters of the Heart - https://www.facebook.com/photo.php?v=10150936427455356