By Matt Westerheide | Published on February 2, 2021 | 12 Minute Read
I never in a million years thought I would have a child with special needs, let alone two. No one does, no one is prepared. I didn't even know what the term "special needs" was really. I knew of kids that had disabilities, mostly those with down syndrome or autism, but never on a personal level.
Then one day, the words "maternal fetal medicine" and later "skeletal dysplasia" were introduced to me and would forever change my life. Our lives. We were pregnant with our first child and were about to reveal the gender of our baby! You know, the fun 20-week ultrasound that everyone shares black and white photos of their little bean with friends and family. The required task that precedes the gender-reveal party. Well, that's not all the ultrasound is for.
The ultrasound technician was going about her business, when she started mentioning things about the bones' measurements. She said it might not be anything, but the long bones in the arms and legs were measuring a few weeks behind normal gestation at 20 weeks. The radiologist referred us to a maternal fetal medicine doctor and set up another ultrasound.
The thoughts started. "What if my child isn't normal? My child can't be different. God wouldn't let that happen. I'm sure it's nothing. What if it isn't nothing?" They weren't sure exactly what it was, but were certain it wasn't normal. At first they thought it might be a form of dwarfism. Later, the doctor would use the word "skeletal dysplasia", suggesting that our son would be born with some form of it but unsure exactly to what extent. They offered a procedure called amniocentesis to predict exactly what was "different" on a genetic level. We had talked it over and didn't want to abort the baby no matter what the findings were, so we decided it wasn't worth the slight risk of losing the baby.
Of course we googled the words "skeletal dysplasia" to find out what we were dealing with. Bad idea. Don't Google that phrase unless you are okay with looking at pictures of severely disfigured pictures of babies, children, and adults. The rest of the pregnancy was very trying for both of us.
Denial set in. For both of us at first, then primarily me. "We'll just pray, and have all our friends and family pray for our baby. Our prayers will be answered and he'll overcome whatever it is. He'll just be a little shorter than everyone else."
Micah Joseph was born on October 23, 2012. We were officially a family of three and I was officially a dad! He was a cute baby, as cute as a kid can look coming into this world I suppose. He even got cuter as time would go on. So in that respect, I suppose things weren't as tough as they could've been. We were immediately linked with lots of baby specialists. One such specialist was a genetic counselor. We both had our DNA tested and cross matched with the DNA of Micah.
Turns out I was the genetic reason for Micah's abnormality. There's no technical diagnosis or name for what he has. I guess the "name" would be the DNA mutation terminology: "46,XY,der(3)t(3;17)(p26;q24q25)".
There has always been a sense of unknown with the abnormality. No one else has the exact genetic abnormality anywhere in the world that we are aware of, according to several geneticists that tried to help us find someone else like Micah. So in that sense it's even harder. We had no idea what to expect and how to deal with whatever was "different" about him. The doctors didn't know if he would ever walk, if he'd ever talk. Lots of unknowns.
From the very beginning we were linked with numerous different physician specialists and therapists. For every appointment it seemed like there was a follow-up and a referral to another department. We wanted to do anything and everything for Micah to prove everyone wrong. Still do.
We had no idea what to expect and how to deal with whatever was "different" about him. The doctors didn't know if he would ever walk, if he'd ever talk. Lots of unknowns.
Micah has had a few surgeries that have gone fine. He hasn't had too many serious health problems. Mostly just "developmental delay" and a size and appearance that makes him look younger than he actually is. He and his brother have always been with their own age group in school though, despite their special needs.
Micah's brother, Maximus Parker, was born on November 14, 2015. We didn't know the odds of having another child with the same chromosomal abnormality going into it, but he was born with it as well. At least we were better prepared for what to expect this time. Max was in the NICU at Nationwide Children's Hospital in Columbus Ohio for quite a while. We took turns between giving Max the early attention he needed while spending time with Micah in the Ronald McDonald house. It was quite the battle to get Max out of the hospital as they wanted him to meet nutritional thresholds of typical newborns instead of comparing him to his older brother.
Eventually they were both home, and the daily routines were doubled. Double the feeding, double the diaper-changing, double the doctor appointments and therapy sessions. Neither child was able to latch during breast feeding, so Mallory was left with the task of pumping in order to feed them breast milk for the first year of their lives. I would help with cleaning bottles and pump equipment. Lots of waking up through the night, uninterrupted sleep was hard to find.
With so many special needs of two special young boys, it just made sense that I should work extra overtime shifts at the hospital while Mallory stayed home to tend to the boys. Besides the various specialty doctor's appointments, they needed to be transported to physical therapy, occupational therapy, and speech therapy. We also exposed them to equestrian therapy, aquatic therapy and swim lessons, and music therapy. Anything and everything we thought might enrich their lives, we exposed them to.
They both needed diapers changed. Both needed to be fed. Both needed to be bathed. Both needed their clothes picked out and put on. Both had similar orthotic shoe inserts to put on and take off everyday. Both were dependent on a lot of things that most children their same age might not be.
This inevitably played a toll on our marriage. I was getting burnt out with long weeks in the hospital, and she was getting burnt out with the burden of taking care of two mostly-dependant children. This left little time to attend to each other's physical and emotional needs and contributed to our marriage eventually failing.
Luckily, we still get along, which is good for the boys. I’ve decided that travel nursing is much better for me. I’ve been able to work less and provide for the boys financially. She’s also been able to get respite help now, which we didn’t qualify for in the past. The drawback is that I’m not able to see them in person for long periods of time sometimes. Video calling helps, but when one child is mostly nonverbal and the other hits the red button after a couple words, it’s not the most fulfilling virtual encounter.
Things are different for our boys than their same-aged peers. They are dependent on others for nearly all of their ADLs. They can’t voice their needs well due to their speech delays, often making them frustrated. Micah struggles with behavioral issues, sometimes hitting or biting or screaming in order to show his affection or frustration. The boys need one-on-one aids at school to help them stay on task and give them appropriate assignments for their ability levels.
Lots of people look at us differently in public as well. My boys don't necessarily look "different" so many strangers might attribute their behaviors to improper parenting, which can really play an emotional toll. The boys can't be left alone for one second. They'll be pulling some stranger's hair, or pushing their younger brother down the stairs, or running into a busy street full of cars. There is no "break" with these boys, aside from respite care. And even then, it's hard to trust people we don't know personally these days.
For all their “shortcomings”, the boys make up for them exponentially in love and joy. They’re almost always happy and will brighten anyone’s day if given the opportunity. Sometimes just the expressions on their faces will light up a room. They don’t know they’re any different, and that’s all that matters. I do hope that their peers treat them like normal human beings with dignity and respect though, and it’s troubling to see them laughed at or picked on. But for the most part, kids around them are understanding nowadays, and they are making friends that love them just the way they are.
Life isn’t always fair. I never thought I would be a father to a child with special needs, let alone two children. Heck, I didn’t really understand what “special needs” were. I might never get to share custody like normal out-of-state parents (summers and holidays).
I probably won’t get to coach my boys in sports and cheer them on for academic achievements. They might not ever have girlfriends or wives. I might not ever get grandchildren. They may always be dependent on their mom and dad.
I do cherish every moment I’m able to be with the boys these days, and I’m still trying to figure out a good balance in life that includes them. I’m definitely not a perfect father, but I’m able to provide for them well. I definitely value my time with them much more now, when I’m able to see them, since I’m not burnt out from working way too much. They have a wonderful mother and great support system around them. They love their routines and continue to prove all their doubters wrong everyday. They are one-of-a-kind. But that’s okay. They’re beautiful inside and out and continue to touch everyone they come across. They’re my boys and I love them dearly.