Over the last several weeks, I have been blessed to get to know several parents of children in the PICU. All of us who have a child with a serious health problem feel similar things: depression, isolation, guilt, resentment, and anger, to name a few. I wanted to write about this because many of the people I have met don’t have the support system I have. I realized that so many others are suffering in silence because they don’t feel able to understand and voice these feelings. Part of the reason I write this blog is to give voice to many of the things people like me are experiencing. Much of this post is written to give you–readers who don’t have any experience with having a child with major health concerns–insight in order to equip you to support those who do.
Many of us are recovering from child birth, having to watch our babies endure unimaginable suffering, in the midst of a hormonal hurricane. Just dealing with your child having major surgery is difficult. Trying to cope while recovering from child birth is a thousand times worse. When Daniel was first born, I had an emotional and physical need to hold him. Everything inside of me was reeling at our forced separation. I was extremely blessed that I got to hold him after birth, and I frequently held him skin to skin before his pulmonary bands surgery. After his pulmonary bands surgery, I held him once or twice per day for three weeks. Now that Daniel is stable and not hooked up to much, I am holding him for HOURS everyday. It is so easy to see now the contrast; holding him for only an hour a day for a whole month was absolutely torture. Many women have to have c-sections, and they are unable to hold their children for hours, days and even weeks. I can imagine what that is like, and it is heartbreaking.
There is nothing that can alleviate this pain, but you can do things like invite them over or out for dinner. Many times parents forget to eat, and we can go days without leaving the hospital. Just getting outside to walk to the car, going somewhere other than the hospital, and being around other people is enough to give us a mood boost. If you have a snuggly dog or cat, even better. After Daniel’s Norwood, I literally jumped out of my car at the RV park when I saw a couple walking their standard poodle. I miss my dogs so much, and I just needed that connection at that moment. If you are a hugger, giving hugs is awesome. I am not a hugger, but I loved getting hugs while Daniel was intubated. Parents can go days without feeling human touch, and this lack of connection can feel especially strong because we have such a need to hold our babies.
We feel isolated because it is exhausting trying to process and understand what we are feeling. Many try to cut their brains off, refusing to allow their minds to reflect on just how horrible reality is at the moment. Refusing to feel makes it difficult to communicate to others, so many of us end up unintentionally isolating ourselves. It feels like too much weight to tell people what is happening. Explaining over and over again is like torture.
Sometimes people don’t want to tell others because they have to deal with the same reactions over and over again. People don’t want to really listen and hear, so they repeat things like, “God will heal him! It will be okay!” I sometimes think people don’t want to hear because they feel like it is too painful, and they don’t want to think about it because it is just too much to imagine their own children going through it. I did the same thing when Daniel first got to the PICU. On the wall in the hallway, there is a “Tree of Life.” On each branch is a picture of a child. Each of these children died and donated their organs. Looking at it, at first, made me cry, and I started actively avoiding it. It was almost like looking made it all-too-real that Daniel could die. Now I realize how incredible their gift was. I think they are all heroes, and I want their legacies and their memories to live on. I walk by the tree and make sure to look at a different child each time. Another mom told me that she can’t make herself go through keeping people updated because everyone just wants to know when her baby will be better, and when she tries to explain that he won’t be better, they repeat, “God will heal him” over and over. It isn’t the message that God will heal him that is bothersome; it is the impression that people don’t really want to hear us, so they try to just fill in the blanks with something that seems comforting so they can change the subject.
While it is true that God heals and that it will ultimately “be okay,” many of us have accepted that God’s plan is greater and wiser than ours, and we have accepted that God, in His divine grace and mercy, has allowed this to happen to our children. God may not heal him physically according to my plan, and that is still okay. Our lives will not “be okay,” according to my limited human view, for a long time. What we need is for you to listen, to be present with us, to feel with us, to not run away from the pain we are experiencing.
It is okay that you do not know what to say. The simple fact is you don’t have to say anything. Most of us just want to feel seen and heard. Even if someone doesn’t feel like talking, just having another person physically present with us at the bedside is amazing. Not only has my family provided unwavering support in this way, but I have had several friends come visit at the hospital. It is impossible to overstate how much their visits have meant to me. If you can’t visit in person, call, message, or text. Even if we don’t reply, it is wonderful to know we have support. A friend from church recently called me and said, “I just wanted to let you know we are thinking about you and praying for you. I wanted to call instead of text because I thought it might be nice to hear a voice from home. Don’t feel like you have to update me or say anything. Just letting you know we are here.” It was incredible, and it was just what I needed.
So many of us are feeling incredible guilt. I have wondered over and over again if something I did caused Daniel’s heart defect. Was it something I ate? Was it the stress I was under? Was it the omeprazole I had to take for my heartburn? Why can’t my body carry my babies until term? Why am I failing at the one thing my body was designed to do? Why can’t I stay up at the hospital with Daniel 24/7? Does leaving the hospital to sleep and eat make me a bad mother? Is this experience ruining David and Hannah? Why can’t I be strong enough to do this by myself? There are so many feelings and thoughts like this running over and over in my head. I know these thoughts are irrational, but it feels so much better to hear someone else say it. Another mom recently said she was scared she had caused her baby’s heart defect. I instantly reassured her that there is no way. The heart forms early in the pregnancy, around 6-8 weeks gestation, and doctors have no idea why this happens. There is nothing she did to cause it. I hope I gave her some relief from the guilt, however temporary.
The depression, isolation, and guilt oftentimes create in us the perfect storm of emotions combined with stress, and that storm sometimes erupts in anger at the smallest things and to the least deserving people. Two days ago I almost had a complete meltdown. The respiratory therapist came in the room to do Daniel’s breathing treatment. He had been doing “CPT,” which is pounding with a balloon-like instrument, on Daniel’s sore chest. He told me, “Just to give you a heads up, he will cry because he doesn’t like me pounding on his chest.” All the other respiratory therapists had been doing CPT on Daniel’s back, and I told him so. Then he asked me, “Has he had any surgeries?” I was livid. Any surgeries? Try two, one of which is open heart surgery two weeks ago. I was enraged that this person didn’t know Daniel or seemingly have a clue why he is in PICU. We have been here SIX WEEKS. How does this person not know? Isn’t it his job to know? There was actually a moment where I realized I was dangerously close to exploding and taking everyone down with me.
The feeling of out-of-control anger can rear its ugly head seemingly out of nowhere. It must be a subconscious way the brain deals with the feelings of helplessness. When our babies are intubated, in pain, split open, and sedated, there is nothing we can do to help them. Exploding is a way we can feel like we are doing SOMETHING, and it can feel great to just give in to the anger during the fit of rage. Afterwards, when we have said ugly things and acted wrongly, it just makes everything worse. It is important to remember to have patience with us. If we erupt in anger, please don’t respond in the same way. Try to have self-control when ours runs thin. I don’t mean be a doormat or to just allow someone to abuse you, but the best thing you can do for someone who is angry is to just walk away and forgive.
I realized the other day that so much of growing through this journey involves letting go of these feelings. It is essential for us– not just parents of children with health problems, but all people– to learn to accept where we are today and live thankful for each moment. During this “Letting Go” blog series, I will be exploring these feelings in depth and giving practical tips for letting go and supporting those going through the process. I would love to hear from you if you have experienced something similar.
I saw this on Facebook recently. Another heart mom posted it. Knowing all of you were and still are praying for Daniel gives me great comfort. This is how I thought of Daniel during his Norwood.