This post originally appeared on my blog, Joseph at Home.
Denial. Denial is a powerful. Denial is part of human nature. Everyone experiences denial in their life.
I remember the first time the thought entered my mind in the wee hours of the morning I went into premature labor with Joseph and Campbell that I might be in labor - denial immediately set in. There was no way this could be happening. Bad things don't happen to me. They happen to other people. They will be fine. I will be fine.
At the hospital, when the first NICU nurse explained to us what could happen if the boys survived the delivery, which may not happen, even more denial set it. They could be severely disabled, they could ultimately be blind or deaf, they may never walk or talk - the list went on and on. This was the first time I cried. Denial. This couldn't be happening. This wouldn't happen. There was absolutely no way I would have a child with special needs. It just couldn't be.
I was supposed to have two perfectly healthy, blonde haired, blue eyed boys that were going to be the best at everything they did.
Even as I laid on the operating table with a room full of three OB/GYNs, two teams of NICU doctors and nurses for the boys, nurses for me, anesthesiologists - I was in denial. We had plans to go to a Halloween party that night. I was supposed to be at home making food for the party and coming up with some sort of costume for my 'I'm 24 weeks pregnant with twins and I've gained 40 pounds' self - not laying in an operating room at 7:00 on a Saturday morning about to give birth to 24 week twin boys. Surely I would wake up and it would all be a dream.
I never woke up from that dream.
Denial can take us out of a situation and put us into a false sense of security. A false reality. A feeling that all will be fine if I just keep pushing real life and what is happening in front of me to the side. Denial is powerful. It allows us to believe what we want to believe. It can hurt us personally and those around us.
Denial quickly left and reality set in the second someone in the delivery room said the first boy had been born - yet there wasn't a sound. Reality set in the first time I saw Joseph and Campbell. I briefly saw Joseph as he was being taken to the NICU from the operating room. I didn't see Campbell until the next day. There they were - 2 pounds 1 oz and 1 pound 15 ounces. There was no more denial. It was a reality. The tubes, the wires, the constant beeping of machines, the doctors, the nurses, the therapists, the ventilator, the tests, the blood draws, the tears, the worry, the anxiety - it was present. I couldn't be in denial anymore.
We had to begin the fight for our children child. The fight continues today. The boys started life behind and we knew there was a lot of catching up to do - and a worry that they may never catch up. That worry is slowly going away but it still exists. The catching up is just taking a lot longer than we thought - and that's okay. I became obsessed with research. I researched anything and everything a doctor mentioned. I wanted to know everything. I wanted to know how to help Joseph. I wanted to know what questions to ask. I wanted to be present at every appointment. I didn't want to miss an opportunity for him. I felt that I owed that to him.
If a resource was mentioned to us, we took advantage of it. If a doctor or therapist suggested we pursue seeing a doctor or a form of therapy, we did it. If something seemed "off" with Joseph, we kept taking him to doctors until we got answers. Yes, that is why we are traveling out of state to see another GI doctor. Joseph needs help. We need answers. And we aren't stopping until there are answers.
When Joseph began to crawl, we knew something was wrong. He pulled himself with his left arm and did nothing with the right side of his body. Sure. It was cute but is wasn't right. There was a problem.
We had him see the pediatrician immediately and she referred Joseph straight to a Neurologist. I was on the phone as soon as we left the pediatrician making an appointment. He was assessed by the Neurologist several weeks later who immediately ordered an MRI and EEG.
Was it tough to get the results back? Yes. Was it tough to hear the diagnoses? Was it tough to hear that the brain bleed Joseph had at birth left him with a decreased left cerebellum and abnormal white matter in his brain? Yes. Was it tough hearing he has hypotonic cerebral palsy? Yes. Was it tough to hear that Joseph has a right sided hemiparesis (weakness)? Is it tough to know that the abnormal white matter probably manifested itself in Joseph's speech apraxia which causes him great frustration at times? Yes. But if we didn't have the answers and diagnoses, as tough as they were to hear, we wouldn't know how to help him.
Because we finally had answers, we knew how to help him. We knew what therapies he needed. We knew he needed help and we wanted to help him. We had his conference at school a few weeks ago. Here he is at four and a half years of age and he is within one point of testing within normal limits in fine and gross motor skills (not being able to stand on one foot kept him from testing within normal limits - yep, we are practicing at home!). This for a kid who we were told may never walk, talk, or even live. And guess which hand is dominant - his right. Take that right sided hemiparesis. At the beginning of the year, he couldn't articulate any of the words on his 100 words list. Now, he can identify 95 of them. Take that apraxia.
I've met so many parents as we travel this journey through special needs parenting. Nothing infuriates me more and makes me more sad than seeing parents in such denial that their child ultimately suffers. Parents who refuse to get help for their child. Parents who don't take their children to doctors when it is suggested to them. Parents who are in such denial that anything is wrong with their child that they live in a false sense of security that everything is fine. It makes me sad, angry, mad - infuriated for the child.
I once had a parent ask me for the name of Joseph's opthamologist (it was evident her child could not see - she was the only person who didn't realize this). Several months passed and I saw this mom again. I asked her if she was able to get an appointment with the opthamologist. Her response to me was that they were going to deal with his vision later. They wanted to "fix" some other things first and then deal with his vision. It was all I could do to not look at her and say, "Everyone but you knows your child can't see!!" Denial. It's powerful. This mom was in her own false reality. All it was doing was hurting the child. I've often wondered if the parents ever took the child to the opthamologist. The poor kid couldn't see and he couldn't tell his parents that.
I often have to make myself block these situations out of my mind or I will drive myself crazy. I don't get it. I can't imagine doing anything and everything for my child. I can't imagine not pushing and researching and seeing doctors until I have the help my child needs.
Am I saying we have done everything perfectly? Absolutely not. I will tell you a million times over we aren't perfect and have made lots and lots and lots of mistakes. We have so many regrets of things we wished we had done differently. I should have never gone back to work when Joseph came home from the hospital. Although they were wonderful, we should have never put him in a medically fragile daycare which resulted in five hospitalizations because of exposure to germs. We should have implanted Joseph with his cochlear implant a year earlier than we did. Who knows where his speech might be. Maybe if I had gone to the hospital an hour earlier that labor could have been stopped or I could have gotten a full dose of steroid shots. There are so many things we should have done but all we can do is learn from our mistakes and move forward.
I am thankful for people along the way who have helped us see the reality of raising a 24 week survivor twin - for people who have helped us not live in denial and helped assure that Joseph received all the services, therapies, and appointments he needs. I cringe to think where Joseph would be if we had lived in denial the last four and a half years.
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