I may not know you. But I think I may understand a bit of what you are feeling right now.
It’s never easy to discover that the little one growing within your womb may not be what the world considers ‘perfect.’
But what the world doesn’t understand, is that there areÂ many kinds of perfection.
The world focuses on skinny bodies, perfectly balanced faces, the latest styles, the shiniest of things.
I want to share with you another kind of perfect.
He came 6 weeks early.Â Orange as a pumpkin.Â Looking exactly like his brothers.
He came with two holes in his heart that shouldn’t have been there, and without the hole in his tush that should have been.
We discovered the Pulmonary Hypertension after the surgery to de-tether his spinal cord.
And, yet, he was totally perfect.
I’ll admit it.Â It’s been rough at times.
It’s also been worth it.Â AÂ thousand times over.
I started this blog because I wanted to show the world that even with all the other medical issues Parker came to us with (which btw, is the exception rather than the rule) that a life with Down syndrome is so very worth living.
A child with Down syndrome is a gift. Maybe not the gift you were expecting.Â I get that.Â I can tell you though, that Parker has made me a better person.Â I needed him so much more than he will ever need me.Â He’s filled a part of my heart that I didn’t realize was missing until this sixth child of mine made his way into our family.
I can imagine your worry right now.Â You’re wondering about this little one within you. Will this baby look like you or your husband or your other kids?Â He will.
Two Peas.Â One Pod.
You may be wondering how this could have happened. This isn’t how things were supposed to be.Â It may feel as though your Happily Ever After has been blown to smithereens.Â Babies with special needs are born to other people, not you.
Maybe you’ve hadÂ experience with the special needs community.Â Maybe your first thought was to thank God that this community wasn’t a part of your life.
When that child with special needs is yours, it’s a game changer though.Â Something in your heart changes. It’s a blessing that is hard to understand unless you are willing to take that leap of faith that is staring you in the face even as I type.
Guess what?Â All the feelings you are experiencing are pretty normal.Â It’s the unknown ganging up on you. It happens to all of us some time or another.Â If you’ve read any of my writings, you’ll see that it’s happened to me a time or two.
There’s something that you really can’t understand right now though.Â Because it’s in the future, and those of us without crystal balls have to wait for the future to become the present before they can understand this:
A child with Down syndrome is more like a typical child than the word realizes. Yeah.Â There are the hard days, I’ll give you that.Â But I’ve had hard days with my other kids too.Â Just different types of hard days.Â Parker is learning to read and write. He has his favorite stories.Â He loves to be outside, just like his big brothers always have.
Children with Down syndrome grow up to have dreams and goals and great potential.
Okay, maybe that potential may be different than what we typically perceive as being potential.Â But Parker’s life has both a purpose and a plan.Â I know this with every fiber of my being.
There are a few things I can promise you:
- You may go through a period of ‘what could have been.’Â It’s like planning a trip to Italy and then finding your plane landed in Holland.Â But soon you’ll find out just how amazing Holland can be.
- The period where you keep thinking about the child you thought you were having will fade over time, with flare ups here and there.
- You’ll discover the amazing that is found within ‘different.’Â I’m not kidding about this.Â One day you will stop in your tracks and feel a unique wonder and awe that this most amazing of kids was sent to you.Â You will feel a type of pride that only a Mama of a child with special needs can experience as they watch their child do exactly what everyone had said he wouldn’t.
- There will be people that (most often unintentionally) will say stupid things.Â You’ll learn to mentally roll your eyes and to forgive them.Â You’ll remember that once you used to think the exact same things.Â You’ll remember how you struggled with the diagnosis and not knowing what might (or might not) happen.Â You’ll be thankful that you are one of those that ‘get it.’Â You may even feel kind of sad that those people don’t have a kid with special needs in their lives.Â Reed and I talk about this all the time.
- There will even be times, lots of times,Â when you totally forget your child has Down syndrome. He’ll just be your kid.Â The one that just undid the whole roll of toilet paper.Â Again.
Please don’t let anyone tell you that a child with Down syndrome won’t walk, or talk, or potty train,Â or read, or go to school or hold a job, or that people with Down syndrome never marry.Â That isn’t true.
The odds are through the stratosphere that there will come a day, far sooner than you ever expected, when you areÂ thankfulÂ you didn’t let the fear of ‘different’Â cheat you out of the opportunity to discover the beauty of that extra chromosome.Â I truly believe that the world is a richer place because of my son’s presence in it.Â I receive emails telling me this very thing on a regular basis.
Ultimately the choice is yours.Â I just wanted to let you know that there are many who have been exactly where you are now, and are today thankful that they took their pregnancies to term, even if theÂ fear of the unknown was at times overwhelming. It’s a leap of faith that more times than not, turns out having an end that includes hard work……AND great joy.Â A joy that can’t be expressed with mere words.
I’ve tried to be very upfront and honest in writing to you.Â You deserve that.Â It’s hard, but it’s worth it, regardless of what any doctors or anyone else may have told you.
I don’t envy you your decision.Â You’ve loved this baby from the moment you learned you were pregnant. It wasn’t supposed to be like this.
Then again, maybe it was.
But only you can decide that.
I sincerely wish you peace and a clarity of heart.Â You have my love as you go through the process of making this decision……and after as well.