Recently I had my big epiphany of WHAT AM I DOING?!!! Yes, my responsibility is to keep my son alive every day but shouldn't there be more? I was going through the motions of getting him out of the house and enjoying the world-the zoo, the park, Target, DISNEY WORLD!!! but what was I really doing? At home I would prop him on his boppy, throw on some Mickey Mouse and cuddle him the rest of the day. It's called comfort care. Something you learn to do very early on when you realize you might not have much time left with your child. You make their life comfortable and as easy as you possibly can. You don't want to do physical therapy right now Aiden? Ok, here's some Mickey Mouse instead. Oh, you don't like laying flat on your back-here's a boppy to prop your head up!
It's important to note that there were times in Aiden's life that these things were appropriate. He's been very, very sick and medically unstable for quite some time now and slept most of the day. But when he was awake I let Aiden have what Aiden wanted. This was all fine until after his open heart surgery in February. Aiden changed. He was more awake, more energetic, more full of LIFE. But I found myself still not wanting to push him too hard. We would try some propped tummy time, sitting in his chair, sidelying playing but the moment he started throwing a fit (desatting from crying too hard) I would put him on his boppy and turn on his beloved Mickey Mouse.
In the past two months I started thinking to myself Is this how I am going to always treat Aiden-live like he might be dying or are we going to LIVE?!! I am exhausted from spending the last 2 years planning for what could be for Aiden. Preparing my mommy heart, my kids hearts, and keeping Aiden comfortable. But recently he showed us HE wants more. He has started taking an interest in playing. Something as simple to most as playing with a rattle is a HUGE milestone for us. He likes to push toys to make them light up and make sound, he throws toys at his siblings, and his new favorite game...throw everything on the floor and see how many times Mommy will pick it up!!! I am so excited! He is really taking off and we can tell he is feeling better.
Our biggest new milestone (drumroll please....) Aiden has learned to roll over! Oh how it warms my mommy heart! He can roll from back to belly and belly to back. He LOVES it and it's been fun watching to see what things he's spent the past 2 years just itching to get into!!! The first thing he rolled for was his suction catheter box LOL So in the past two months of reassessing how our family was going to start LIVING again we've taken the boppy away from Aiden and he loves just being on the floor and rolling now (it was a rough transition but we let him cry it out and he hasn't thought twice about it since), he now only watches Mickey a few times a day when Mommy needs to shower or do stuff around the house, and we let him be more independent. I won't lie, it was so hard at first-watching him struggle to reach for his binky when I know he could roll over and get it or cry when brother takes a toy from him-but that's the part of LIVING! We've never pitied Aiden because we know he's well loved and his life is full of purpose but now we have expectations for Aiden. Not to just "make it one more day", nope, we now push Aiden and prepare him for the day he will become independently mobile, communicate, and breathe on his own.
There are of course days of grieving...there always will be. I would be lying if I said this journey was easy. It is extraordinarily difficult to watch your child being poked and prodded daily, spending 3-5 days a week at the hospital, watching them being kept alive with the help of machines, and splitting my time between three children who need me very much. But it's so much more rewarding and joyful than any amount of stress or sadness. Aiden isn't sad so why should I be? He doesn't know that he wasn't expected to live this long. All he knows is love and happiness. Aiden doesn't realize that at almost 2 years old he should be walking, talking, eating by mouth...he thinks all of the cool kids have a trach and feeding tubes!
It's nice to finally be able to say that we are living, laughing, and enjoying life without all of the "what ifs" constantly looming over. We know there will always be bumps in the road and setbacks but we are ready to forge ahead and start preparing for Aiden's future-how will he be mobile, what preschool should we send him to, what home modifications do we need to make? Living. It's a good feeling. I guess you could say it's taken us 2 years to get to the acceptance phase of the journey. Accepting the things we can not change and embracing this journey we are blessed to be on with Aiden. We are excited to celebrate his 2nd birthday in less than two weeks!!! Watch out for some super cute pictures!!!