My daughter Addilyn Joelle “Addi Jo” passed away March 7th of this year. She was 19 months old. This will be my first Father’s Day as a father of two, but I am only able to be with one.
I have an extremely happy and healthy baby boy, Connor, who is 7 months old; Addi Jo was born 15 months before.
Addi Jo was an itty-bitty thing weighing in at a whopping 13.5 lbs when she was 18 months old. Everything on her was dainty and tiny, except for her hair. She had the most magnificent wavy, dark, curly hair. She had beautiful crystal blue eyes and skin like a porcelain doll. Whenever someone laid eyes on her they would ask if she was wearing a wig and state that she looked like a doll. We always took it as a compliment. She was absolutely perfect to us.
We had tried to get pregnant for Addi Jo for over two years before we were blessed with her. From the second Addi Jo was born she had my heart completely. Addi was filled with love. In fact, she loved us so much, and was so excited to see us, that she came 6 weeks early. So we spent our first 31 days as a family together in the NICU.
It was clear to the doctors from the start that Addi was special. They told us on her second day of life that Addi had a rare condition called Cornelia de Lange Syndrome (CDLS). Kelly and I were initially devastated.
You always have this perfect picture painted in your mind of the life you want your child to live. A life where your child experiences everything life has to offer…love, friendship, proms, graduations, weddings, heart break, rejection, success, failure, ups, downs…everything that makes up a complete life.
Those dreams get shattered when you have a special needs child, and it’s very easy to think of all the negatives and spiral into a phase of darkness. We briefly went through that phase. Then we took a good look at Addi Jo and saw nothing but light. We looked at her and saw a life filled with love.
From those first days in the NICU, Addi Jo and I shared a very special bond. The nurses and therapists were having a hard time getting her to take a pacifier. I gave it one try and she took it without a problem. Her and I just always had this way comforting each other.
If Addi Jo ever struggled throughout the day, I was able to comfort her. If my day wasn’t going as well as planned, I was always able to find comfort in Addi Jo.
They say little girls have this way of wrapping their dads around their little fingers. I too fell victim to the rapture of having a little girl. You see, Addi Jo consumed my life. She had many medical problems that left me at home to take care of her. Her mother’s job had better benefits, and I worked from home, so I was the one tasked with caring for her on a daily basis. There is no daycare for special needs children where we live so this was the only option for us.
Addi Jo’s syndrome didn’t give her the ability to eat well by mouth. Eventually, she had to have a G-Tube, which meant all feedings would go directly into her stomach through a button. I calculated calories and nutritional facts for each meal, blended them up, and fed them to her through a syringe at a calculated rate that wouldn’t provoke any vomiting. This process consumed my life and when Addi Jo passed, I lost that routine and my identity as Addi Jo’s caretaker.
When you lose a child, a piece of you is lost, forever. There is no “getting over it” or “moving on.” The pain, although still fresh for us, will never go away. The only thing that changes is how you manage and cope with the pain.
The nights are torture. During the days there are distractions – work, errands, events, and caring for Connor. At night, there is no escape. When the evening routine is completed, and Connor is bathed and asleep, silence kicks in and reality sets in. When it’s time to lay my head on my pillow the pain gets real…you just can’t escape the night.
There is a constant anxiety that comes with losing a child. You never think of how many times strangers ask you about your kids until you lose one. All too often people will ask if we have any children or how many children we have. At this point you have several options and need to choose wisely.
Option one, you say you have just one child and be done. Usually the conversation ends there. Option two, you can say you have one child and one in Heaven. Now the conversation gets awkward, apologies start flying, people feel bad, tears start welling up with everyone involved, and the conversation is usually over. Option three, you just say you have two kids and then risk more follow-up questions.
Then there’s the feeling of extreme guilt. As a special needs parent the guilt starts the moment you bring your child into this world. Addi Jo had many health issues and suffered a lot during her short time with us. As the parent, you blame yourself for her condition and the pain she endured while she was here. Once you lose a special needs child the guilt is only amplified. You blame yourself for not doing more to protect her. You ask yourself ‘what more could we have done to save her?’
The added twist of a special needs parent is the guilt of feeling some sense of relief for your child passing. With all the suffering Addi Jo endured, I can’t help but wonder if she’s in a better, more comfortable place. She no longer has to suffer but the guilt of these feelings is unbearable.
They say that the worst pain anyone could endure is having to bury your child. There is a natural order to life and burying your child falls out of that order. Losing a grandparent is part of the natural order. So is losing your mom, dad, older brother/sister, spouse, and pets. It’s still not easy losing these people but it’s supposed to happen. Losing your child is not natural; it’s the wrong order of things. It’s simply not supposed to happen.
Shortly after Addi Jo passed we had a friend visit us with her little girl. I couldn’t bare to look at this child as she was so similar in size to our daughter. To this day when I hold a little girl, my lip trembles and my body shakes. The pain is all encompassing.
When Addi was alive, we created a Facebook page for her so people could follow her progress. Since her passing, my wife and I still post pictures and videos of our daughter. One of the scariest things for a parent who has lost their child is people forgetting them. We still post because we struggle with this dilemma. Unfortunately, the number of videos and pictures we have are finite and will run out eventually. Not sure what we’ll do then. Go back to the beginning and repeat?
The fact is society will not accept your public grief forever. We’ve already seen people unfollow and unlike Add Jo’s Facebook page. I’m assuming they are over seeing the pictures and feeling the sadness. Well that’s our reality.
There’s a wonderful essay written by Emily Perl Kingsley entitled Welcome to Holland which illustrates the perfect analogy of what it’s like to be a parent of a special needs child.
The essay describes how excited you feel when you learn you’re having a baby and compares it to planning a trip to Italy. You plan to see all these amazing sites, buy travel books to plan your trip, even learn some of the language. You’re so excited!
You hop on the plane and several hours later the flight attendant announces “Welcome to Holland.” But you didn’t plan for Holland, you planned for the beautiful and fast-paced country of Italy.
There’s no getting out of Holland so you start to make new plans for your life there. Meanwhile all your friends are coming and going to and from Italy and bragging about how exciting and amazing it is.
But Holland is beautiful if you let it be. It’s slower paced and different but extremely beautiful. It’s filled with windmills, tulips, and Rembrandts if you’re willing to go find them.
I’ve been to Holland and it was absolutely beautiful. I don’t want to leave Holland but I have no choice. Holland was our home, and there’s no place like home.
