This blog post is part of a series that I began for telling our story. You can read the first post here.
From this point forward, I’m going to be sharing the text of posts as they were written at the time. Some will come from this blog; others, from our CaringBridge site. I may from time to time write my own reflections after re-reading, but mostly I will just be sharing words as they were written. So much of this journey for me is revisiting what happened, and realizing just how difficult the journey was for us. And now, seeing how far we’ve come since that time.
The following is a post I wrote on May 7, 2011 (original post can be found here). Given that we just passed Mother’s Day again, and it’s been 8 years… these words are profound to me now. I stayed seated when the moms stood on Mother’s Day this year, too. But since I work in the AV booth, I usually don’t stand up anyway when everyone else does.
Internet connection issues make blogging very frustrating – we’re limited by the hospital’s guest network that is spotty at best. Depending on the day or time, different places in her room will have a signal (or perhaps there is none at all in the room) so I’m writing in Word to copy & paste to the blog when I can finally connect. Frustrating!
Tomorrow is Mother’s Day. You might think that I would be miserable about this knowledge, frustrated that I have to spend it in the hospital with my daughter. But for me, knowing that I get to spend Mother’s Day feeling like I actually am a mom is something new and wonderful and a total gift. For the past 8 years, Mother’s Day has been a reminder of loss for me. My husband always does a wonderful job of acknowledging the mothers in the congregation and having them stand to be recognized. I never knew if I should stand or not, so I opted to stay seated. I’ve had people tell me I should stand, but I never felt right about it. For one, there was always the possibility of someone in the congregation not knowing about Jonah, and I didn’t want to deal with the questions. For another, it made me feel lousy the first year when I did choose to stand. The day was just heavy. This year, despite the fact that we are here, I love the fact that I’m spending the day with my daughter. What a gift this little peanut is to us. Part of what inspired these thoughts is this blog post I read today.
I still worry constantly – who wouldn’t in our situation? Little things keep popping up for the doctors to look at and I can’t help but wonder if they are signs of other problems. She’s got an eye infection that may be a tear duct issue – it’s the third time she’s had this in her lifetime in the same eye. She hasn’t pooped today (I think only parents of babies and people dealing with medical issues focus this much on poop). Her platelet counts are very high – which we’re told is a good sign of her immune system kicking in but they are too high. So now they are checking for clotting issues, something I happen to have. Bring on the hematologists! How many specialists is that now?
We think she had one or two active seizures yesterday, which was scary. So off we went for an emergency EEG only to have nothing seem to show up on it. I told her when we went down that while I didn’t want her to experience another seizure, that if she was having them now was the time to have it! Didn’t work though. Huh, you mean babies and seizures don’t listen and obey?
I’m baffled by the length of time we’ve been here. The days run into each other and I can’t keep track of what has happened each day or the fact that it’s been more than two weeks since I’ve been home. Time doesn’t stop, but priorities sure change when health is at risk. The past year has certainly taught our family that.
Acceptance of all of this is a fluid thing for me – right now I can say I’m honestly ok with wherever God takes us on this journey. If He calls her home then her suffering is done and she has the ultimate healing. If we get to continue following this miracle for an unknown duration, that is wonderful too. Now, whenever we hit a turn on the path we’re on, I’m not always so ok with it. I’ve shed more tears in the past two weeks than I believe I have in my entire life before. I’ve gotten so angry with God about this entire situation. My cry continues to be that this is so unfair, why her, why not me. Those emotions do not change. And I think that’s why accepting what we have before us is an ever-changing thing. I want her to be whole. I want her to be healthy. But in my mind I keep remembering the words someone spoke to me at Jonah’s funeral – “he took the shortcut.” Jonah never had to experience the pains of this life, just got to head straight to heaven. For Samantha the journey is much different. I know God has given us every moment with her as a gift, but I still pray that she will not have to experience much pain or suffering. If I could shelter her from all pain and suffering I would.
One of the child life specialists here yesterday told me that the feelings I have show her that I’m a mommy, not just a mom. They distinguish based on the love and care they see some parents have for their kids and how some just can’t handle it so they don’t come around. When we went to the baby music class they have here on Wednesdays, more than half the babies didn’t have parents with them. That’s why they have these child life specialists here, to interact with the babies and kids whose parents are absent. And to help us parents cope with the situation we’re in. Granted, some of the parents I know don’t have a choice. Not everyone is blessed with the circumstances we have that allow us to be present for our daughter right now. Some people have jobs that don’t include sick leave or vacation time, where taking even one day off for a sick kid is risking getting fired. But apparently some parents just can’t cope and stay away.
While I find it absolutely horrible, I understand the emotions that lead to those choices. I’ve had many moments while I’ve been here where I just can’t handle the situation – when she’s crying, when she’s in pain or tests are being run, when there is nothing I can do to help her calm down. I’ve had to leave the room on numerous occasions. The specialists here reminded me yesterday that it’s ok for me to take time to breathe in those moments. Yesterday was particularly hard for me with that, when we thought she was having seizures. I went out to this “park” they built in the middle of the floor and just cried. Leeann (I think that’s her name), the specialist who called me a Mommy, came and sat with me, let me rage against all of this stuff and pour out my fears and the trauma I’m recovering from. Then she helped me get some perspective, talk to a doctor about my fears, and then finally said, “ok, you need to go back and hold her.” I told Travis that I find myself avoiding holding her, not because I don’t love every minute of it but because I’m so scared it will be the last time. Once I make myself do it, though, it’s the most amazing thing in the world and I don’t want to put her down.
About that trauma thing – yesterday it finally hit me just why I can’t handle a lot of the emergency stuff. When all of this began, we took her to the emergency room at another hospital (the hospital she was born at, actually). They finally wanted to transfer her here, downtown Houston. I had to go home to pump and take my blood pressure medicine since it was almost morning at that point. So I went home and Travis came here with her. It was while I was away from her that she stopped breathing. Travis called me and told me to come, that she was very sick, much more sick than anyone thought before. He mercifully didn’t tell me she had stopped breathing until I was almost to the hospital. And before the whole emergency room business, I spent an entire day alone with her where she was screaming and crying in pain, uncontrollably, where she refused to eat and I could do nothing to make her feel better. I didn’t realize until yesterday how much those events scarred me. Everything about this has shown me just how small and out of control and helpless I am. And being this brand-new mom who just wants to protect my daughter, it’s terrifying.
But I can hold her and show her I love her. So I’m going to figure out if I can get online to post this and then go hold her for a while. Right now it’s all I can do for her, but it’s enough.
Updated to add: she pooped! And we celebrate this small disgusting victory!
Next post coming tomorrow.