The candid life of a PAH Mom

With today being World Pulmonary Hypertension Awareness Day I thought I would take a moment to reflect and let you in on our world.  Adam was diagnosed almost 2 years ago and the progression is starting to be noticeable.  Shortness of breath (SOB) are more prevalent, heart/chest pains 3 times in 2 weeks, the need to rest more often and less desire to play outside with friends because he can't seem to keep up.  I get asked the same question all the time, "Shannon how do you do it?" and my answer is always the same "I don't have a choice I just do".  The fact is I do just do everything I possibly can for Adam, remain solid for him and don't let him see how much I hurt watching him.  Every day I fear him dropping from playing too hard, his heart starting to fail and there is nothing left, transplants and then the day that my son breathes easy when he gets his wings.  Every day I wish he could play sports, run around and be a kid and literally grow up to be anything he wants to be.  Every day after he goes to sleep I hold myself and cry as I am living every parents nightmare and I know the only way the fear will go away is if there is a cure found or one of us passes.  I am not the solid rock so many think I am, inside I am a very broken woman who truly wishes the best for her only child.  I am strong for those around me who can't handle the hurt and I am strong for the one who matters the most, the one fighting the battle and the one that one day I know I will have to let go because his pain and suffering will out way my selfishness and hurt and that is Adam.  With every breath he takes he is my hero, with every day he wakes and smiles my heart melts and every day with him is truly a blessing.  He has taught me to live life each day, don't take anything for granted and love like today will be the last we will ever have.  When you have children you think of their futures, holding grandchildren and one day them having to have the pain of saying good bye to you and the world seems so bright and endless.  When I held Adam when he was 2 weeks old and make a pact with him that it was ok for him to grow up because I will do it again as a Grandma little did I know that I will probably never be blessed with that kind of future.  It breaks my entire heart and rips my soul apart to know that one day I will bury my baby long before his time should end.  Scarily today could be our last together, or tomorrow as things can change that quickly.  I know I know people are hit by cars every day, accidents take many too soon and we never know if tomorrow will come, stop and think of how it would feel to truly know that tomorrow could be your child's last as their heart could literally stop as they play outside with their kids, that pneumonia could lead to an episode that is irreversible and they never come out of ICU, that in order for them to live another child must die to give them lungs and hearts and if one doesn't come soon enough an infection from being hooked up to heart machine pumping blood through their body from the outside takes their last breath or that you run out of options all together and you have to watch them slowly dwindle away until there is nothing.  This is the reality that we live in, those are the fears in my heart and mind and that is what divides my soul into a million pieces.  Our children shouldn't know what a lab looks like for blood work, or have appointments every 3 months to make sure that they aren't getting worse, going under in cath labs, take multiple medications a day, oxygen tanks, central lines to the heart or sub q IV's under their skin just so that they can keep breathing and fighting.  I am one of the lucky one's as Adam does very well and was diagnosed so early but because of that the smallest changes in him seem so drastic.  He is now stage 2 out of 4 stages and if he makes it to 3 we will have a hell of a battle on our hands where even eating will wind him.  This means that on my plate IV meds are in our very very near future and it literally crushes me.  I personally know 2 little girls coping very well and doing great on it so they are my inspiration and teach me a lot when it will come time.  Take the time today to learn more about PAH, talk to Dr's, donate to local organizations and research, have an echo done as the earlier you find out the better your chances of survival are.  I know that when Adam takes his last breath it will not be in vain, his was found so early and so much research and notes are being taken while watching him.  I will never stop fighting until the day I die as it is the least I can do for my boy, my one and only and for all those other parents out there living in fear that each precious moment is their last.