When you realize that your child will not outlive you, there comes many moments that leave you…well, there just are no real words to describe it. When you realize that no amount of pleading, begging, or deal making will spare your child the weight of their condition, a small part of you aches in the most primal of ways. You cannot protect your child, and is there any more important job for a parent? It leaves a part of you hollow where devastation, frustration, and anger are allowed to echo endlessly. You have moments where you can do naught but fall to your knees and cry tears of complete anguish. You held that perfect baby in your arms too many nights, rocking them slowly to sleep, all the while envisioning all your hopes and dreams for them. Then it all comes crashing down on you as you quietly kiss their forehead realizing they will never do the same for their own child. Then there are moments where the anger, anxiety, and resentment seem to chase you until you feel cornered and have nowhere to go. It makes you want to throw a grown up sized temper tantrum at the great injustice of it all. There are then moments where the world seems to hit pause and you sit very quietly doing all you can to not think about anything at all. You push all of those emotions down really deep. Those are the moments where you unconsciously grieve.
Never did you see any of this when you watched those precious first steps that they took. Surrounded by friends and family you cheered every new accomplishment. Some of those friends still remain, some leave for their own reasons, and some new even appear. Those friends and family, near and far, are the ones who pull you through those moments where you wonder not if you are going to be able to come out the other side of the storm tattered in small pieces, but whether you will ever be able to put them all back together again. With each new battle, new struggle, new loss, obstacle, or hurdle we learn to navigate, it matters that we have you by our side. This journey is not easy, but it helps to know that there are hands to hold, shoulders to cry on, and people who care. Even if we choose to simply sit quietly and cry alone, it helps to know we don’t have to. You make us stronger. A genuine thank you to my amazing family, my generous friends, my new A-T family, and to those of you whom I may have not even met but who have helped me in so many ways. A heart felt thanks.