by Barbara Murphy
I am a mom to a wonderful little man named John, who was born with a rare birth defect called Congenital Diaphragmatic Hernia (CDH). We had no clue there was anything wrong until the day he was born. He also came along with several other issues that landed him in the hospital for 13 months after birth. He was born March 29, 2005 and came home to us on May 3, 2006. We call May 3 his second birthday! John was ventilator dependent, oxygen dependent and tube fed when he came home. Today, at the age of six years old, he is only on the ventilator at night and no longer has tube feedings and is starting first grade with his trusty nurse. His medical history is complicated and I am willing to bet his records are about three to four inches thick, maybe more.
A few years ago if someone asked me to list the positive aspects about having a child like John, I would have grunted and given my infamous eye roll. I personally went through a grieving process for what was considered a normal life. I needed to redefine my definition of normal. I was missing out on all the wonderful things John was doing because I was looking for normal things he should be doing. I had to grieve the loss of a child I envisioned while I was pregnant. One of the poems that helped me through this process was “Welcome to Holland,” by Emily Perl Kingsley.
People think because you are a parent of a child with special needs that you are an amazing parent. I am no different than any other parent, other than the crash lesson in medical jargon. I still go through parenting like the next parent trying to figure it out each day, reading books on the subject and wondering if I am getting it all right. I still second guess myself and wish I had all the answers.
I deal with the same issues most parents deal with. The reason other people think we are amazing is because many of our decisions are based on life and death. Other parents may feel they wouldn’t be capable of handling these decisions. I guarantee they would be capable. If I can do it, anyone can! It’s all about the love you have for your child that is powerful. Having a child with special needs just makes it more powerful!
There are positive aspects to parenting a child with special needs, other than having a second birthday to celebrate. John was given a 10% chance to live. So in my eyes everything he does is a miracle. When a typical child sits up, signs, says his first words or does anything typical it’s great in the moment. When my child does anything typical it’s grand, it’s a miracle and I do not take it for granted. That is the single most important positive about having a child with special needs.
My son was not supposed to be able to do a lot of the typical things kids do. He wasn’t supposed to live past a day. So, when my son signs, “Mommy,” I get butterflies every time, not just the first time. When my son is screaming for me I love it and I do not complain. When my son is having a tantrum, I thank God he can.
You will never hear me complain about a child who talks too much, eats too fast, cries, has tantrums or hits and bites. Because my son has taught me patience and tolerance for others. I don’t know if I had that before he was around.
On a lighter note, we get to go to the head of the line at parks or events. People open up the walkways for us when they see all that ventilator tubing and equipment. I get a chuckle out of the expressions on other people’s faces when my son coughs up a ball of phlegm from his trach, almost the same way moms with typical children laugh when they see their kids pick their nose.
When my son talks not many people understand him like I do. Because of his trach, he has severe speech delay. So when my son started saying, “duck,” that’s what I told people it was. Even though I knew different. I can get away with that by telling the teacher we are reading a book on ducks.
Through our journey I have met an amazing network of friends who have supported me emotionally. Not many moms can say that. I have people I can email, call or text when I want to bounce ideas off of them or to just vent about something. They are also moms and dads of kids with special needs. They get it. They can tell me to suck it up and I won’t be offended, or they can let me cry. I often wonder if I would have had such a great support network if my son were just an average little boy.
Oh, that’s another positive. My son isn’t average. He is extraordinary.