I asked my mama to do a guest blog. I know many of the people who do read this blog are mama’s to those who have AIH. At first, the goal was for those of yall to see what it what like from her perspective. But I got so much more than that from her. I asked her to write it around lunch time one day, and I received it that evening from her, with a text that said “I sat here writing the blog, and bawled for an hour. Something is wrong with me.” For me, it was crazy to read how SHE experienced it all, and the feelings she experienced. I remember telling her and Kevin what to do if I didn’t survive the surgery. At the time, we didn’t know if I would even get that liver, and I know I didn’t take that conversation as seriously as I needed to. I remember telling her not to get teary, that I was just saying just in case so they didn’t wonder. Isn’t it crazy when we realize the weight and the gravity of ours words? Thank you Mama for being so real and sharing your heart with me and my readers.
Ten years ago, Ali was diagnosed with AIH, it was discussed early on that at some point she would have to have a transplant. So I had ten years to wrap my mind around the reality that one day, this would happen. For the past several years it became even more clear that the transplant would be needed to keep Ali alive.
Ali and I both are the biggest planner (OCD to the extreme) we both share the traits of keeping calendars, being overly organized, and not thriving in chaos.
If we had been asked, the past six months, I am certain we would have both said, YES, WE ARE PREPARED!!!
Silly us~ We were however, NOT prepared at all!
When Ali called and said, "Mom, I got the call"
I literally said, "What call?" DUH~
The entire call is a blur in my mind. When I hung up, i was in a daze, mixed emotions flooded through me. I collapsed on the floor, sobbing. Excited~ YES!! Terrified~ A BIG YES!! This was the call that we had been hoping for. The call I knew Ali needed. The past few months I knew in my heart, if she didn't get the call for a new liver soon, there was no way she could keep going.In the past few months, she had many hospital visits, new symptoms and her health was declining every day.
So this was the best call ever.
Then the reality hit me, this is a major surgery, with all kinds of risks, and just the thought of her not making it, well in many years I had not even allowed myself to think about that. Possibly afraid it would put out negative energy, jinx us, or maybe as a mom I knew I could not process the idea of losing her. Even though it loomed over me like a cloud for years. It was the elephant in the room. Ali has always been so positive about it, no way was I about to be a downer with all the realities of things that could go wrong.
I could not even get my mind straight to pack a bag to head to UAMS in Little Rock. I was shaking. In hindsight I should have never got in the car and made that drive, but I did it by myself. ~~ And I will forever be thankful for my cousin and his wife, who stayed on the phone with me, distracted me, made me laugh and shared in the emotions of what was about to happen~~
I kept thinking, what are the odds, that Ali gets her first call for a liver transplant, and actually gets this liver. Well that would be crazy odds. We have talked with so many people who had three, four or five calls or more before actually getting their new organ. So, knowing that kept me calm because it would just be almost impossible odds for this to be the liver.
We learned once at UAMS, that when an organ comes available, they call up to three people on the transplant list. So while we sat and waited, so did other families. Ali, Kevin and I passed the time playing games, singing songs and as the clock ticked into the early morning hours, I was just overwhelmed with emotions for a family, we did not know, that was having the worst day, losing their loved one,but yet in their darkest time, were choosing to give life to others. This weighed heavy on me for weeks, and even now I catch myself just sending up love and comfort to a family I don't know, but hope to one day be able to say thank you.
My heart also went out to the other families who were waiting on this same liver. They got the call too, they flipped out, cried, celebrated, and were waiting just like we were.
There is something sobering about sitting in a room with your 24 year old daughter, and discussing everything from funeral plans, discussing organ donations and final wishes should the unimaginable happen. For those who know me, personally know, the thing I struggle with most is death and loss.......I am working on this, and will most likely have to, through my life time. In the wee hours of the morning, I listened to my daughter give me instructions for the good and bad, and knew that even in the worst case scenario, in true "Ali fashion" she had planned for everything.
For those families on a transplant list ( I promise no matter how prepared you are.....You really arent') Trust me on this. You are about to have your whole world turned upside down and learn a lesson in having zero control.
In that room I remember looking at Ali and Kevin, and thinking, I can not imagine being 24 and dealing with this, and here they were facing it head on. Being sick, having a major surgery, a death of a loved one, is a type of club you never want to be a part of. I promise you this, in the worst moments of your life, you are going to look at the people next to you, and realize that you are about to tackle a BIG unknown, ( a battle) and going through that will bond you, and change you in ways you can NOT even imagine, unless you have experienced it.
We wouldn't know anything until the organ arrived and the doctor had checked it, then they would determine if THIS was the liver for Ali. It is a whole lot of waiting, nerves, emotions.
When they moved her down to the PICU around 5 am, we still didn't know. I do not feel bad asking about the doctors to other staff members and talking to the doctors before hand, explaining as I am sure every family member does, that THIS ONE IS SPECIAL, this is my girl, and she has a big life to go live and for them to do their best and get her out of that operating room ALIVE, and with a new liver. I literally was asking if they had eaten a good breakfast and had a good nights sleep, so they were at tip top shape for this surgery. I was literally placing my child in their hands. We went from waiting hours, not knowing to hearing, this is HER LIVER, THIS IS THE ONE! I am not a religious person, and find comfort in learning facts, details, and reading about the science that makes transplant possible. I had read all of the risks, the stats, and was probably overly informed. There is something to be said for the saying "Ignorance is bliss" But in this moment I was placing my daughter, and my faith in the team of men and women, who had trained so many years, were experts in their fields, and skilled surgeons (who I had googled just to make sure) that would hopefully have a successful surgery and give Ali a new life.
We only had a few minutes to say our goodbyes, Ali was calm, cool and collected, talking about being hungry and planning her next meal. I kept a smile on, and said "Ali you come out of there ok. "
She smiled so big and said "Don't worry Mom, I'm not going to die, I have a bunch of babies to make" And with that they wheeled her back with a few I love you's.
When the door closed, I realized, I had zero control over what was about to happen. As a Mom there was nothing I could do to fix or help my child. It was completely out of my control. It was in those moments I had to find a quiet place alone, to let all of the emotions out, regain composure and head out to the waiting room. Knowing the next few hours would change my life and Ali's, and not knowing what that change might be. Hopeful for a smooth surgery, and fearful that I might never see her again.
So we waited.
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