PSA: The following is simply my opinion and I do not suggest that those who think and act differently are wrong or should be condemned. I’m merely sharing my perspective and describing how I came to respond to a specific situation. I still offer the utmost respect to those who, using their own experiences to react to situations, respond differently.
With that being said…
When you find yourself anticipating the birth of a special needs baby in the 21st century, your first “go to” is support groups found online. This is especially helpful when you are faced with such a rare syndrome as TAR that seeking knowledge and first-hand experience in real life is impossible. So, naturally, I’m a member of several online support groups for TAR and other circumstances in my life to which I seek friendly shoulders to cry on.
It was in this group that an important question was asked: “What do you say to people when they ask why my child has short arms?”
As a mother to Drew, I’ve encountered this question a LOT. And, it’s not offensive so if you are squirming in your seat wondering if you’ve asked it or your child, don’t worry! And, I think most special needs parents would encourage your child to ask questions instead of stare and wonder. Take the opportunity to use that moment to teach your child about differences, manners and just plain ol’ satisfy their curiosity. But, anyway, I digress…
Drew is an interesting looking fella’. He indeed has very short arms. His long leg UK-inspired braces are hard to ignore. So, it’s no wonder that Drew is frequently the subject of such wonderment. When we’re around new kids, I can count on being asked at least twice, “Why are his arms like that?”
The common “go to” answer is, “He’s just special! He was born special.” And, it’s said because “special” has such an uplifting meaning so it’s used in hopes of not making the recipient feel bad for being so unique. It has an underlying, “You are loved and wonderful, but he is EXTRA loved and EXTRA wonderful so you should be very impressed!”
This even used to be my response for Drew: “He’s just special that way.” But, that changed one day. Let me explain. This may get long so please bear with me.
I was born with a “less-than-ideal” circumstance. I have what’s called a balanced translocation on two of my chromosomes. What this means, is that a small piece of two of my chromosomes broke off and then switched places. Each chromosome is numbered 1-23. So a piece of my 10 is on my 17 and a piece of my 17 is on my 10. I have all of my information so there’s nothing wrong with me (that’s debatable). But, it’s in the wrong order. The only way this balanced translocation affects me is in the arena of conceiving a child. I run a high risk of passing too much or too little information onto the baby at conception. You may understand that one chromosome, one from mom and one from dad for each of the 23 pairs, is used to form the baby. Because a piece of my 10 is waaaaaaaay over there, I might pass on too little of 10 or I could pass too much and the same thing could happen to 17 – too little or too much. Or just right. It’s a gamble. Any one of these combinations can result in an abnormal – or unbalanced – baby.
I learned about my own balanced translocation during my first pregnancy. A routine blood test resulted in a risk for genetic defects so I was immediately referred for my own chromosomal analysis as well as had to undergo an amniocentisis to determine the status of the baby. It was found pretty early in pregnancy to have an unbalanced translocation. He had monosomy 10 (too little 10) and trisomy 17 (too much 17). The results were devastating. Severe retardation. Won’t survive. Complex heart defects. “You should terminate this pregnancy.”
I didn’t terminate (not because of any religious reasonings). He was born. His name was Brennan. He weighed only 3 lbs 12 ounces despite only being born a couple of weeks early. He had half of a heart. He lived in the hospital for 38 days – having never come home. He died in my arms.
To say that this is the most gut-wrenching, heart-breaking and pivotal moment in my life is putting it mildly. To this day, even 13 years later, my life is segmented into, “Before my baby died” and “After my baby died.” I am a completely different person.
After Brennan, I found myself pregnant a year later. Around 11 weeks, I sought early testing knowing my circumstances for having high risk for genetic defects. It was determined as they prepped for the test, that the baby’s heart had already stopped beating. I had miscarried. But, my body has this funny thing where it doesn’t deal with miscarriage so I had to have a surgery to deal with it.
My third pregnancy: a blighted ovum – an empty, fertilized egg. Surgery.
Three pregnancies and no living babies.
My fourth pregnancy: Despite the past, we were hopeful and optimistic. But, we were devastated to learn that our baby had TAR Syndrome. Now, I love Drew, you know this. I’m so lucky to be his mom and I’m so glad he is who he is and his life is a celebration, but regardless of how awesome he is today, eight years ago learning for the first time that he was deformed is devastating. When you learn that your baby has a defect of some kind, you grieve. You grieve the loss of that exciting healthy baby you were expecting. You grieve the loss of a routine and happy pregnancy. You grieve the loss of a “by the book” child. Learning about Drew’s circumstances was hard on our emotional states, hard on our supporting family members, hard on our marriage. What can we expect with a child with such intense medical needs? How do we handle this? Can we do it?
Obviously, we had Drew and it’s been wonderful, though there are hard days. I’ll just have to make a separate post about how extensive the affects of having a special needs child are to our lives.
A couple of years after Drew, we had a “whoops” pregnancy. Again, early testing and we were devastated to learn that SHE had the same thing Brennan had (too little 10, too much 17) PLUS a little too much 18. Mercifully, I miscarried at 14 weeks before having to commit to terminating. A third surgery.
It was around this time, that in discussing the results of the failed pregnancy, the genetic counselor tried to reassure me by saying, “Janel, you’re just special. You have special chromosomes.” I knew she was being friendly and loving, but inside, I squirmed.
I want nothing more than to be pregnant and announce it to the world with a picture of my first pregnancy test. I don’t want to have to hide being pregnant lest I have to awkwardly announce in tears to loved ones that either the baby died inside of me or I chose to terminate it. I want nothing more than to proudly and delightfully talk about my pregnancy and baby to anybody and everybody. I don’t want to sit quietly and isolated when around other pregnant girls gushing about how they can’t wait to hold their healthy baby in their arms. I don’t want to have to excuse myself because seeing their endless delight and stress-free pregnancy makes me infuriatingly jealous and endlessly resentful. I want to be happy and excited to be pregnant. I don’t want to spend every minute analyzing every feeling within my body wondering if I just lost the baby. I don’t want to have to avoid any and ALL sudden or strenuous movements in fear of causing a miscarriage. I don’t want to have to distance myself from the baby and I don’t want to pretend I’m not pregnant in attempt to lessen the grief when I see a still video of the baby’s heart. I don’t want to silently wish the baby would stop kicking and squirming as it makes it extremely hard to not fall in love and look forward to having him/her in my arms. Simultaneously, I want the baby to never stop squirming and wiggling around because as soon as he/she does, then I spend every moment thinking it’s because they died. I don’t want to avoid buying baby clothes and toys and furniture because, let me tell you, it is TORTURE returning home to a house full of baby stuff and having to return those items. I want to go into the OB/GYN office and have that lovely ultrasound to see the baby wiggle around. I don’t want to get a painful shot in my belly. I don’t want to wait two weeks of inhumane torture waiting to learn the fate of the baby. I don’t want to hear the hammer drop with every defect the technician lists during the anatomy scan. I don’t want to look at the technician’s somber face when she sees no heartbeat and I don’t want to be so familiar with what to look for that I can see that there’s no heartbeat before she has a chance to say it. I don’t want to have to consider terminating the much-loved and much wanted baby in an act of mercy. I want to be able to read “What to Expect When You’re Expecting” and relate to it. I want nothing more than the normal, happy and wonderful pregnancies all of my friends and family have. I don’t want to be alone in grief because nobody else knows what to say or understands what I’m going through.
There is nothing uplifting about this. There is nothing special, let me tell you: IT SUCKS. It f**king sucks…big time. Pregnancy for me is a nightmare. I also did not want to have to choose to tie my tubes before I was truly ready to stop having babies. I may have made strong attempts to convince myself that my 6th pregnancy (an also “whoops” pregnancy and successful, finally) was enough and I felt I was done, but honestly, I’m so sad that I’m done. Not because I have satisfied my child-bearing needs. Not because I’m too old. Not because I was ready to stop. My hand was forced by my “special chromosomes.” If I could change anything in my life, it would be to have normal chromosomes.
So, I never say that Drew “is just special” anymore. I understand as someone who faces hardship and less-than-ideal circumstances that “just special” is a kick in the gut. I don’t want to minimize how TAR has affected him. He’s had 16-17 surgeries because of TAR. He’s endured endless pain because of TAR. He’s left out of some activities because of TAR. He’s constantly seeing doctors and specialists and stress because of TAR. Now, he’s overcame these things and he’s a fighter, a confident, strong-willed, smart and determined overcomer because of TAR, but I don’t want to imply with “just special” that he should feel good about being unique.
So, instead, when asked, “Why are his arms short like that?” I say, “He was just born that way.” “That’s just the way he was made.” Sometimes I’ll remind them that some kids are born with straight hair, some with curly, some with freckles, some with one short leg, some with a crossed eye…that we’re all were just born that way and that’s how it was meant to be.