As a parent, one thing you never want to think about is your child’s death. When you have a child with complex medical issues and severe involvement, I think you would think about it as much as I do. I’m sure parents with children without special needs do think about it at some point, but I am reminded of the possibility that Joseph could die every single day.
Seeing a child die is one of the most horrific memories I will ever have. When my ex-husband Todd and I were dating, his older brother and sister in law had their first baby, Rayleen. Rayleen was born with a heart defect, an ASD, an atrial septal defect. Surgery was required to fix the ASD, so after she grew a few months (she was a few months premature), she underwent surgery at WVU Hospital in Morgantown, WV. The surgery went well, but while she was in the Intensive Care Unit recovering, Rayleen caught a staph infection. Rayleen fought for her life but lost her battle in the hospital. Her little body was broken and couldn’t take it anymore--system after system gave up. Her kidneys failed, her liver was failing, her heart. Todd and I were in the hospital with her parents when they had to make the difficult decision to take precious Rayleen off of life support. We were able to hold her and kiss and hug her good bye. The nurses and doctors came in and started taking out her breathing tubes. I’ll never forget that moment. For whatever reason, blood started spurting out of her nose and mouth and her parents and everyone in the room started sobbing. Todd and I left the room so her parents could say good bye to their baby in private.
When Joseph was in the Neonatal Intensive Care Unit at Fairfax Hospital, we came to know the other families in Room 3. We didn’t know names, but we knew their faces. We were always checking every morning when we went to visit Joseph to see which baby went home, which baby didn’t make it. Across from Joseph’s isolette was a little pre-mature baby who kept having little TIA’s (mini strokes). The family told us the doctors said their son was in pain every time he had a TIA…and he was having hundreds of them at a time. That family had to make the decision to take their son off of life support. We were there when they had to sign the papers, we hugged them, said goodbye to their baby through his isolette, and they wheeled them all to a private room to say their good byes and take their son off of life support. He died less than an hour later.
Within the first few days of Joseph being transferred to the NICU at Fairfax Hospital, one of his regular nurses, Mary, who we came to love, asked if we had considered signing DNR papers for Joseph. Joseph actually had a PDA when he was born, and I was having flashbacks to Rayleen dying. I was actually pissed off she asked me in the first place, but I understand why she did. At the time, no one knew any certainty about Joseph’s prognosis. To most everyone it was terrible and no one expected him to live. He had liver failure, kidney failure, along with his severe brain damage. Eventually Joseph’s liver and kidneys healed and his PDA eventually closed when he was about a year and a half old.
As a side note, one thing Todd and I noticed when Joseph was born was we were never congratulated by any of the doctors or nurses at Fair Oaks Hospital or Fairfax Hospital on the birth of our son, with one exception. Robin Baker, MD was the only doctor, specialist, nurse, etc. who shook Todd’s hand and said “Congratulations” to both of us. He asked me after Day 7, “Have you held your son yet?” I said choking back tears, “No.” “We need to fix that don’t we?” Dr. Baker said. The next thing I knew, he had three nurses come over to the isolette, pick Joseph up with all his wires and probes, and I was finally able to hold my baby.
From seeing Rayleen pass away, to the little baby across the NICU room 3, I knew that the reality that my son could die was not some far off impossibility. What is going to kill Joseph is pneumonia, most likely aspiration pneumonia. He’s already had it once when he was about 5 years old. Since Joseph has such severe Cerebral Palsy, he cannot handle his own secretions very well. To add to his poor swallow ability, he has a hiatal hernia which allows stomach to push up into his esophagus, and stomach contents are at risk of entering his trachea and lungs. He did undergo two painful surgeries to fix the hiatal hernia, but Joseph managed to retch both of them apart…and I won’t put his little body through another one to attempt to fix it a third time.
So I’ve come full circle with this, sorry it took me so long to get here. I kiss Joseph good night and tell him I love him every night he’s with me (as I do with his sister Sarah), knowing that he could possibly die if he aspirates his saliva or chokes at night in the case I can’t hear him. When I’m out for a run the thoughts go through my head of having to plan a funeral for my son. Where would we have it? What songs would we sing? What would we do to honor his memory? I’ve thought about the specific songs, his favorite being “You are My Sunshine”, and doing a balloon release in his honor. I’ll hear a song on my iTunes list and think, “Yep, that’s another one for J.” It might seem morbid, but it’s my reality. I try not to live in too much of a bubble when it comes to Joseph and his life and death, and I’m not afraid to talk to anyone about it anymore. 7 years ago I probably would have shied away from the topic, but now I know better.
I always give my kids a hug and a kiss and tell them I love them before any of us leaves the house or parts each others' company. In fact, my favorite thing to do before I go to bed is sneak quietly in their room, kiss them on the cheek and whisper in their ears, "Mommy loves you." And with that, I have a few sweethearts to go visit.
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