My Unexpected Little Blessing

The surprise of a baby with Down syndrome – the story begins at the bottom of this page.

All Life is Precious

This is my little beauty at 4 months old. Such a pretty little thing – not that I am partial or anything! I have very exciting news to share this month. Our little champ has full head control! And I have to say it is way easier carrying her around now. Also, she has started rolling from her tummy to her back. Not on a consistent basis yet, but when she feels like it I guess!  So proud of her – she is one tough little cookie. She is still smiling and laughing like crazy. It is the cutest thing to see as her whole face lights up, and she squeaks! It is surely the best part of mine and Todd’s day.

Regan is in the early stages of teething as well. The first clue to that was the enormous amounts of drool that has been coming out of this kids mouth! I mean…..crazy amounts of drool! And she wasn’t much of a drooler before – so that was the first sign. Then came the out of nowhere screams. She overall is a very good, quiet, happy baby. Then there is the zero to scream side of her that we had not seen before. So after taking a peak inside her mouth to see if our hunch about the teething was right, it was confirmed – white gums. So our little one is on her way to her first tooth!

About a week ago our early interventionist, hereafter referred to as Kelly, came for her second appointment with Regan. And in similar fashion to the first appointment, Miss Regan blew her away! (Let me just throw in here how awesome that has been to hear, and see. Especially when your child has DS and there are so many things that you can be told that your child may not do well, if at all.) But Regan is still doing great, and surpassing expectations. We couldn’t be happier for Regan and the accomplishments she has already made. We often say she is kicking that Down syndrome right in the butt!

On a different note, we had somewhat of an unsettling experience at the hospital a few weeks ago. (Regan is fine – but was having an adverse reaction to a change in formula, and wasn’t keeping it down. We changed the formula back – and now she is doing great! ) While at the hospital, something was said to us by one of the doctors that has had my mind pacing, if you will, for the last few weeks. It really didn’t hit me at the time we heard it, (obviously as we had a sick baby we were worried about), but it resurfaced about a week later. In recalling the conversation we had with this doctor, we had begun telling him about the circumstances of bringing her in. In doing so, we mentioned that she had DS, as we tell that to all medical staff that she sees, as it is always best to be upfront about it. We continued on and he began asking if she had any medical issues prior to this. We told him that she has been just fine since we brought her home from the hospital, but that she had some issues right after she was born, and therefor had lots of tests run. He asked if the tests showed any complications, and we told him everything was good, but that we learned that she had DS. (And this is where this story gets a bit shaky.) At that point, he looks at me, and with somewhat of a bold tone says, “oh, you mean you didn’t know?”. I proceeded to tell him that I did not have the prenatal testing done. Then he asks, again with a bold tone, “well didn’t they offer it?”.

Like I stated earlier this didn’t really affect me too much then as we were busy making sure Regan was ok, but when I look back on this now, I am a little annoyed, to say the least. Unfortunately this is the mentality of some medical staff. Instead of saying, “oh you guys seem to be doing great with this”, or “she is one lucky little girl to have supportive parents”, or even to simply say nothing at all. But apparently the big deal here is to make sure that all OB doctors are offering prenatal testing to their patients. That was his concern. So I told him that yes they had offered it, and that I didn’t take it. He looked perplexed and moved on. I feel sad that prenatal testing isn’t looked at as just an option, but almost a mandate. (As I have stated in the past I am not against the testing – just against aborting. I just knew that I would be a wreck during pregnancy if I learned that way. And no matter what I was keeping her!)

This type of situation is what I would like to see changed. Yes, by all means, allow someone to be prepared for the challenges that may lie ahead, if they wish to know.  But I would like the medical world to stop treating the testing as if it were a solution to this so-called “problem”. Even while getting the diagnosis at birth – it took time to get to where I am today. You go through an array of emotions (these will be covered in a future post). I could not have imagined going through those emotions while pregnant. And then to have someone tell you that you have only so many days to abort. Why not give those parents contacts of other parents in the community that have been in their shoes. (I have offered to do this at my OB office). Tell them about how much people with DS are accomplishing today. Let them know that the life expectancy is 60+ compared to only 25 from 30 years ago, and that their quality of life has drastically improved. (Worst case scenario – tell them that there is a long list of people wanting to adopt babies with DS.)  I hope that myself and others in the DS community can make a difference regarding this process. It breaks my heart to think that a child may not be born because the parents were given an out of date, biased opinion on what their child can and can’t do. If you are a parent that has received this diagnosis, or if you know someone that has received, or at some point does receive this diagnosis – please be as informed as you possibly can. You will be so incredibly surprised at what that child can do! I am – every day!

  “What a privilege to be here on the planet to contribute your unique donation to humankind. Each face in the rainbow of colors that populate our world is precious and special.”   

— Morris Dees

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