Do you see my face? That is what heartbreak, confusion, fear and utter devastation looks like. When I think about all the thoughts in my head at that moment, I don't know how I survived. How did I put one foot in front of the other? Day after day? Month after month? Year after year?!
Combine congenital heart defects, lung defects and the inability to breathe through your mouth and nose and you get a blue baby.
Beautiful, wasn't she? Go on ahead and admit it. She would've scared you, too. And, for the record, I don't mean scary in looks, although that might be somewhat true, too (in this picture!). I mean scary as in how scary it is to be responsible for a medically complex and fragile infant.
They took her away just seconds later and I couldn't hold her again until she was three weeks old. She looked better a few days later...you know after heart surgery.
|At four days old (right after her first heart surgery).|
|This is why we couldn't hold her. The ET tube is what|
was keeping her breathing.
|At six months old, after her second heart surgery.|
|Ahhh, that's better. At one year old.|
I just keep thinking of what it was like exactly seven years ago at this moment. It's 5:30 pm as I'm writing this.
We had checked into the hospital after the 1 o'clock Steelers football game versus the Cincinnati Bengals. The Steelers lost. Typical. We went to a bar in DC to watch it to try to give our minds a bit of break from the chaos that was about to begin. I couldn't eat. I wasn't hungry.
They started all the stuff to induce labor. It was a long night. I didn't want to have her. I wanted her to stay where she was - safe and sound. I knew her life would be hard, however long it lasted.
What a horrible thought the eve before giving birth! I knew her life would be hard, however long it lasted.
I think that's why I'm grumpy. So many wonderful experiences were taken away from us. From her. Replaced with a life full of hospitals, ambulances, medical supplies, doctors, nurses, surgeries, doctor's appointments, time spent in waiting rooms, traveling all over for medical care, medical supplies, suctioning, oxygen tanks, breathing treatments, infections, antibiotics, tube feedings, home health nursing, physical therapy, speech therapy, feeding therapy, stitches, bruises, recoveries, medical supplies, communication devices, trach changes, suctioning, years with no vacations, no beaches, no pools, no sleep, no sound, no voice, no words. And did I mention medical supplies? Or suctioning?
Thirty freaking nine surgeries and seven years later, she's writing her name on her homework.
|Today - September 24, 2013|
She is amazing.
I honestly don't know how we have made it. That first year was a doozy. But we have. We have survived. All of us. And we continue to, every single day. How have I not lost it? How do I not have an ulcer? How have Tom and I survived? How did we have another child after her? I don't know. It's really crazy to think back on the last seven years and know that we are "fine" most of the time. Heck, I'd even say happy. Okay, maybe I have lost it.
The love I have for this child is unmatchable.
The love for her is different. To watch your child go through as much as she has gone through changes you. It changes your relationship. To love - through the fear of losing her - is indescribable. To love her is to feel pain. And you have to be accepting of that. There are no barriers in the way of my love for Murphy and Cooper. I can love them openly and securely. I can dream about their future and know that the odds are in their favor. It is different.
I wish I could be one of those parents who says "I wouldn't have it any other way." But, that is simply not true. And, personally, I think those parents are crazy. I would wave a magic wand without hesitation if I could. There are no doubts about that.
There is a lot going on in our lives right now. After a lot of thought, we decided to make some changes in our home nursing. Terri is no longer with us. And Brandy is coming "back." She never left, but now she will go with Harlie to school a couple/few days a week. And we have a new nurse starting next week who will work part-time to share the school days with Brandy. Home nursing is a difficult thing. It is not something you want to need. And need it, we do. There is little privacy, a lot of trust, and I'm betting there's a lot of judgment going on. So, making a change is never easy. No matter the circumstances. Terri was with us for two years. I would give anything to have a conversation with Harlie about it. To see how she feels and what questions she must have. But, at least I know that she loves Brandy and what a great day for her to take her to school for the first time in two years - her birthday!
Huh, I feel less grumpy now. Sometimes I guess you need to embrace the bitterness, the anger and the grief. And then go tell a bunch of people, whom you may or may not know, all your inner most thoughts.
Happy Birthday, Harlie. I am grateful for every day I get to see you smile.
Thank you for the love, the support and the friendship.