How? What? What does this mean? Is she going to be ok? What do we do now? What the fuck is happening? I asked myself these questions over and over again, hoping that somehow the answers would just appear. They didn’t. I don’t remember how much I cried after that initial appointment with our pediatrician. I feel like it was a lot. It’s honestly hard to remember. All I know is that I never cried in front of my wife or in front of my kids. It was always when I was alone after everyone was in bed asleep, and in the moments when it was just me and my thoughts.
A few days after the appointment with our pediatrician, we had a follow up appointment with a team of doctors at the Children’s Hospital Hematology Blood Disorder and Cancer center. There we run additional blood tests to try and figure out what blood disorder our baby has so that we can develop a game plan for what comes next. From our initial conversations with the doctors, and before we get all the final results, I gain a little hope back. At this point we have an idea of what condition she has but there are also variations of this condition ranging from manageable to shit. I’m still mentally exhausted from everything and I am trying to hide my emotions from everyone, which only makes things more mentally exhausting, but I push on. Still trying to be proactive, I start to do my own research of her condition and possible outcomes of her blood tests… worst idea ever. This only adds to my anxiety and fear for what might come next because it seems like all my searches come back with the worst possible shit. I am reading about potential side effects like the removal of organs due to complications, potential blindness, total body inflammation, strokes, a need for regular blood transfusions, crippling pain all over her body, decreased life expectancy, and the potential of death. Death. That word just takes me to my lowest point and it’s hard to hold back the emotions. This little baby didn’t ask to come into this world, and I can’t help but hate myself as I think of all the horrors I just read through.
The time comes for us to have our follow up with the hematology blood disorder doctors for the final results of her additional blood screening. I had pretty much spent every night prior to this appointment standing by her crib, watching her, crying, praying, and hoping for some kind of positive news. As negative as I am about the majority of things in my life, I find myself holding out hope once again for some positive news. We make our way to the doctor’s office, and I am in the exam room pacing that small white space as I wait for the doctor to enter the room. Once again there is the dreaded knock at the door and the doctor finally enters the room. We both take a seat. He tells us that our results have come back, and we now know her full condition. He tells us that our daughter has something called Sickle Beta Thalassemia and it is a blood disorder in the sickle cell family. I’m able to follow his words since I have already read up on this condition and know that there are different forms. My eyes start to water so much that my vision is blurry, and one blink would send those tears rolling down my face. I don’t blink, I take a breath, gather up the courage, and ask him straight up ‘did she get the shitty one or the milder one.’ He does not respond in the same manner as I had asked the question. He only reaches out and puts his hand on mine and says, ‘she tested positive for Zero, which is the more complicated one.’ All my fears are realized at that moment, and I can’t help but break down sitting hunched over in that chair breathless while tears fall on the white tile floor below me. Forever seems to pass but I’m sure it’s only a few seconds. I then get angry because I’m crying. I get angry because I’m crying in front of this doctor. I get angry because I am crying in front of my wife, I get angry because I don’t know what else to feel in that damn room and I am hoping that anger will just carry me through. It does not.
After that conversation he affords me some space and then we spend another few hours at this doctor’s office talking to a host of different people who discuss various aspects of her care and what our role will be in all this over the next few months. They are incredibly supportive, but it is heavy, it is a lot to take in. We learn about her future medications and daily antibiotics. We learn about the warning signs to look out for in regard to pain, blockages, changing of color in the white of her eyes, and swelling. We learn that we are not allowed to treat any fevers at home that are 101 or higher, those will require automatic trips to the emergency room. We learn what to expect during those emergency room visits. Like I said, it’s a lot to take in. It’s a lot to take in even more when you are just angry at the world, but I take it all in and we are able to leave. Looking back, I don’t think I cried anymore after that visit. I locked it all up, and just hardened up. Tears won’t help my daughter so no use in having them. I made the choice to be the rock, the center stone of all this for the family and to me that meant I could no longer have ‘soft’ emotions. Whatever needed to be done, I was going to do. No matter how hard, how emotionally draining, or how exhausting. I was going to do it.
There is so much more to this journey from over the past five years that I feel like if I tried to go through it all, I would never finish this post (but more to come later). I can say that there were many long hard days, late nights, and long hours in emergency rooms. Too many to count. There were countless blood draws, examinations, and x-rays. I have heard the most heartbreaking screams and cries during these times. I have had to help physically restrain my daughter more times than I can remember so her blood could be collected, or her medicine could be administered. Many long days and late nights. With all that being said, I can honestly say that my daughter is by far the toughest kid I know. She is now at a point where she understands that she is different but does not fully understand what her difference is.
So why did I never say anything about this before, why didn’t I let people know when she was born? It’s a simple answer for me. It was never really anyone’s business. Also, I didn’t want to talk about it and a large part of me still doesn’t. I didn’t want to answer dumb questions about it. I didn’t want people to pity me, my family, or my daughter. I had the support of my wife on that, but I do acknowledge that she would have liked to share sooner or with more people. It was my call and regardless of it all, I still stand by it. I just wanted people to see the beautiful girl that my daughter was and just enjoy her for being her. Is that selfish? Yes, yes it is. I can acknowledge that. My sole focus was always to make sure my daughter and family were good, which means I couldn’t worry too much about the feelings of others. Still don’t. Unfortunately, I do feel that my pullback from others to focus on what I felt was important cost me a few ‘friends’, but that’s just the price you pay sometimes. We did share her condition with a few people, a very small group. To the very few people who were ‘in the know,’ I can’t express how much your support has meant to me and mine. When you are fighting something that is so emotionally draining, it was and is helpful to be able to share that with you and have you just listen. I’m grateful.
So why am I sharing now? Well I don’t have a great answer for that one. I think it’s just time that we take the next step and start to be advocates for our daughter and others with her condition. I think there are others out there that might be suffering in silence and could use some support while going through whatever they are going through. Most importantly, it’s not always about how the journey started but where the journey takes you. Our journey happened to present us with a new opportunity in a new location that brought us new hope and a new baby. And our journey is far from over.
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