Tuesday Afternoon.. Reflections of A Mother With A Special Needs Child

Tuesday Afternoon.. Reflections of A Mother With A Special Needs Child

On Tuesday of this week, I got a frantic text from a friend who is currently about 17 weeks pregnant.   She tells me that she knows I am at work and probably busy but she needs to talk to me as soon as possible.  I call her back right away.  She’s crying.

Through her sobs I hear her saying that she had just gotten off the phone with her doctor and that she was told the baby “probably” had down syndrome.  The doctor was asking her to schedule an amniocentesis to find out.    I talked to her for a few minutes and attempted to calm her down..  There is no consoling. The best that you can do in that moment is try to convince them that it’s going to be okay.  Everything, is going to be ok.

The first thing that I asked her was “Does it matter?”  I went on to explain that according to the specialist that I worked with through out my own pregnancy, I was informed that the chance of miscarriage was actually higher than the statistics claimed.

She didn’t answer, so I asked her again.  Does it matter to you if the baby has down syndrome?  If it doesn’t, then don’t have the amnio.  I am pretty sure that thought had not been considered.  She was quiet for a few moments and she told me that she wanted to be prepared.  She just wanted to know.   I even threw the curve ball of, what if there’s nothing wrong and you miscarry a perfectly healthy fetus?  You just don’t know.

We spent quite awhile talking about my own experiences and going over all of  the information that I had gathered over the past six or so years since I became pregnant and gave birth to Dominic Adam.  I made it a point to touch on the fact that children with down syndrome today are much different than the kids that we knew growing up.  Thanks to a change in attitude, early intervention, other services that are available and laws,  our kids are able to do a lot of things they either couldn’t in the past or weren’t allowed to..

I couldn’t help but spend the next few hours and even days ( like right now ) going over in my head all of the things that my ex husband and I went through after finding out that our baby “possibly” might have down syndrome.  Due to being uninformed, the diagnoses and the weeks that followed were terrible.  I am also not too shy to mention that I had some horrible medical professionals who robbed me of my joy.

There’s a lot of ways that people can rob you of your joy.  For me it varied. Lack of information, bad information, ambivalence on the part of medical professionals, attitude and a host of other things.  I was in awe of how rude some of these people were.    I honestly believe that some of these people feed on your fears.  This was also when I realized that health care is a business.

Due to being uninformed and unsure of where to get accurate information that wasn’t in the form of a medical textbook with long names I can’t pronounce,  or full of outdated photo’s and drawings of people with down syndrome.  I wanted to find some of the artists and slap them for their idea of what a person with down syndrome looks like.  I was made to feel like I was carrying an alien fetus complete with tentacles, a fifth eye ball that was dirty and disgusting.

Still my baby. Mine.

There were times when I felt like I was the only one fighting and I was protecting him from something..

It’s one thing to give me medical advice but don’t follow it up with “you have options”  At 25 weeks, I could already feel Dominic moving, I knew he was a boy and I was already calling him by his name.  I couldn’t possibly imagine stabbing him in the head with a pair of scissors. Honestly, when the doctor spoke to me about “options” I didn’t even realize that he was referring to an abortion until later.  Seriously, it was so far from my own mind that when it dawned on me, I was like OH?

I really do wish I knew then, what I know now.  The most important lesson that I have learned is that even though we have our good and bad times ( depending on what’s happening in our lives ) Dominic’s  “condition” is not the end of the world. It just isn’t.  It isn’t even the worst thing that has ever happened in my life. Not even close.

I have so many opinions about the world’s view on my kid.  A lot of them aren’t very nice.  I am only a little ashamed to admit that when I heard the story about the couple from Italy who found that one of the twins they were expecting had down syndrome, they had the baby aborted..  Then they found out that the wrong baby had been aborted.

I laughed.

Then I reconsidered the thought that they gotten what they deserved.  They didn’t and I know that it’s not my place to even think something like that.   I can tell you what happened..  They probably were treated the same way that I was by the medical professionals they were working with.  They were probably so full of fear that they actually thought that they were doing the right thing by aborting the fetus with down syndrome.

Or there really is  the thought that I had initially.  They are selfish people who don’t want to deal with the “burden” of a handicapped child.  You can’t be certain of the future.  You can have a perfectly healthy and normal child.  That child has a chance of becoming not so healthy or perfect.  Then what?  It’s not my place to judge anyone for anything but, if you aren’t capable of loving your own child through a handicap, then you shouldn’t be a parent. Period.

There may come a day when perfect and healthy baby is playing football, breaks their neck and becomes paralyzed from the neck down.  Then what. The day may come when your perfectly healthy baby girl is in a serious horseback riding accident and suffers a brain injury that forever alters who she is as an individual.  Then what?

There are people who are of the opinion that it is wrong to have these children.  They really do believe that people with down syndrome have no real quality of life.   Really?  I have some things that I would love to share and to show those people.

Dominic loves to go to the park.  He loves the swings and the slide.

He wakes up in the morning and sometimes he has oatmeal for breakfast but sometimes he likes pancakes. This kid cannot get enough orange juice, milk and Teddy Grahams.  He also really likes bananas and cream cheese bagels.

He hates salsa.

He doesn’t like popcorn ( yet )

He loooooooves ice cream and it doesn’t even matter what kind

He loves elephants, dogs, cats, horses, goats……   He loves animals. He and his dog, Lulu, are inseperable.

He likes to sing, dance and draw on his easel.

His favorite toy right now is a fire truck.

He likes to jump on his bed.

Dominic likes to watch movies and his favorite one right now is a toss up between Shrek and The Smurfs.  Sometimes, he would rather read books either by himself or with me and his dad, than watch television.

Dominic also is very ticklish and will sometimes ask you to tickle him.  He laughs.   I love to hear him laugh. Big belly laughs and giggles to the point where he can’t breathe.   If you stop he’ll get mad and want more tickles.  He has the greatest laugh I have ever heard.

Dominic is also very sensitive to other people.  His third grade teacher will tell you that he senses when other children might need extra space, more attention, consoling etc.  Dominic has a lot of friends in school.  He’s even friends with the school custodian.  He will even get upset and worried if someone else is upset or crying.

There’s a common thought that people with down syndrome are always happy.  Not true. I can prove it.  I have photographic evidence of a tantrum so severe that I had to photograph it and send it to one of my girlfriends who was always saying “He’s always soooooo happy, “

No. .. He’s not.

He’s a typical kid.  At the moment, one of  his biggest struggles is a speech delay. He’s coming along nicely however and his vocabulary is growing all of the time.   He does a lot of other things that 8 year old kids can’t do. He runs, plays, reads books and appears to enjoy being 8  ( 9 in June )

He’s got challenges but they aren’t so challenging that a woman being given the diagnoses is forced to lay in the fetal position and cry until she can’t do it anymore..   I vowed back then to make sure that I was available to women who are faced with the same thing that I was.  I do this mostly by being involved with different online support groups. I’ve been farmed out to friends and associates of friends and associates.  I have no problem with that.  I invite it!!!!!

jennkoczan@gmail.com

It’s my goal that people get correct information so they can make educated decisions based on facts and not fear.  It’s been a long and sometimes exhausting journey, but I don’t ever regret for a second making a decision to continue my pregnancy ( never in danger of an abortion anyhow ) or keeping my son ( no danger there either )

The only regrets I have is allowing people ( mostly  medical professionals ) to make me feel as bad as they did.  Also, not learning sooner to be assertive and more demanding. Self advocacy and being the advocate for your child can be exhausting.    I was surprised to witness the lack of professionalism and attitude of people I thought were there to help me and be supportive. I would like to think that my situation was isolated, but based on the stories of other parents I’ve met, it’s not.

I am either lucky or unlucky enough to have an uncle that raised two girls with cystic fibrosis ( Heather and Holly ).  My uncle Mark spent almost 30 years dealing with doctors and staff and was able to share his horror stories and some methods of dealing with situations and how to be heard, get your point across etc. I’ve passed them on many times.

One thing that stuck with me was the story I call “Called a doctor”  It was when I told him a story about something someone had said to me and the way something had been handled.   My uncle Mark said to me,  It doesn’t matter which medical school a person attends to become a doctor. It doesn’t matter if they graduated at the head of the class or the very last in the class. They are still called doctor. He is not God, he is not special, they are not better than you.  He is just a doctor.

I admit that this isn’t the case and won’t be the case for everyone who have been in my position.  There are a lot of wonderful doctors and providers out there who are amazing and will do just about anything for their patients and family.    I found my dream team at the Children’s Hospital of St. Vincent in Indianapolis, Indiana.  also known as Peyton Manning Children’s Hospital.  I can’t say enough good things about that hospital.

I wouldn’t recommend Riley Children’s Hospital to my own worst enemy.   Feel free to e-mail me for my very long list of reasons as to why I won’t set foot in that hospital ever again. Leaving Riley was the best decision I have made so far in Dominic’s health care.

Moving on..

I really don’t have an ending for this..   It’s just a few thoughts swimming through my mind right now..   I’m gonna go and re tuck Dominic into bed and make sure he’s got his blankets around him. It’s chilly in the house tonight.. I’ll probably give him another kiss on the forehead and whisper that I love him and I’ll see him in the morning.

*sniff*

Seriously, I love that kid.  Just the way he is.

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