Yes

I said yes.

 

When we got the Down Syndrome diagnosis, I said yes.  Yes, I’ll keep this baby. Yes, I’ll love this baby.  Yes, I’m ready for a special needs child (or at least I will be eventually).  Yes, I’m ready for medical complications.

 

Chris and I once even talked about fostering or adopting a special needs child.  It was theoretical at the time and doing that would be more of an active choice rather than a passive gift.  It’s a little different when you prepare for and actively seek a child with a diagnosis than when you are unexpectedly handed one.  But clearly, somewhere deep in our minds we were prepared.  This doesn’t mean it hasn’t been an adjustment.  I’ve grieved for the baby I thought I would have.  I’ve been paralyzed rummaging through all the future therapists, doctors, websites, IEPs, and recommendations from other parents.  I’ve worried about what my baby will look like, how s/he will be treated, whether s/he will even leave home.  Facing the diagnosis of Down Syndrome has been a journey.  But I look forward to the day when I can post my baby’s photo onto my facebook Down Syndrome group and get the oohs and ahhs.  I was excited for the announcement I would make to the world, stating how we knew for months this baby had an extra chromosome but we welcomed him/her with open arms.

 

Now I long for those days when it was only Down Syndrome.

 

Maybe I worried I wouldn’t love the baby?  But these new complications have really put the diagnosis of Down Syndrome in perspective.  I almost forget that my baby has Down Syndrome- it’s a minor hurdle compared to what s/he faces.

 

A key distinction I’ve learned from those already raising a child with Down Syndrome is that my baby will be a child with Down’s Syndrome, not a Down’s Syndrome child.  It means that s/he is a child first.  A baby doing baby things- learning to breathe, eat, communicate, explore, as any baby would.  The Down Syndrome is secondary.  With the new diagnoses, I’ve been thinking of this baby as kidneys and lungs.  Kidneys and lungs. Will they work? Kidneys and lungs. What’s going to happen?  I need to take those wise words from parents past and remember: my sick little baby is still a baby first.

 

I’ve thought about the hard things. What it would be like to have a stillbirth.  Holding the baby if it’s dying.  But I haven’t allowed myself to think about the good things.  This baby could live and thrive.

 

I’ve been up and down so much on this rollercoaster, it sometimes feels a little easier to stay in one place, even if it’s a low place.  If I let myself hope, than I’ll fall harder if something bad happens.  But that doctor tried to give us some hope last ultrasound- the lungs look fine.  Those on my Down Syndrome facebook group shared their experiences about preterm babies who thrived.  In a few days it’ll have been 4 full weeks since we were diagnosed with low fluid. And the baby has hung in there.  I’m still pregnant!  I’ve been feeling lots of movement the past few days.  I feel like maybe this baby is trying to tell me something.

 

Am I having little optimism?  Maybe.

 

Life. Health.  This is what I want for my baby.

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7 thoughts on “Yes

  1. Roo sent me to this wonderful blog. I have read every post. You write beautifully and I can’t help but feel connected in some small way. I hopeful for you. I am hopeful for your sweet baby. I am sad there’s not more to read but look forward to your next post.

  2. Goodness gracious. I can’t imagine the things that you are going through right now. I just want you to know that I am thinking of you, and wishing all of the best for you, your husband, and baby. Reading your words makes me put my very own life in perspective. I don’t have any children yet, but seeing how you handle this with such grace is so inspiring to me.

  3. Hi Meghan, My name is Kathy and a friend/fellow blogger sent me the link to your blog today. She said that I might be able to offer you some support. I have read a bunch of your recent posts and think I have a sense of your story. Congratulations on your pregnancy and I am so sorry it isn’t going how you hoped and dreamed it might. It sounds like you are handling this journey well, in spite of your baby’s unique diagnosis and prognosis.

    Six years ago I was pregnant with our second child who was diagnosed with rare and severe congenital heart defects. We were told she had a 80% chance of being born alive and a 10% chance of surviving after her birth. It was a difficult pregnancy and I appreciate the mixed feelings and emotions you have shared here. There is a lot more to our story, but mostly I want you to know I am here if you want to connect. I also wrote extensively on my blog at the time and have since, which you can take a look at, if you want. Our daughter Molly was born alive and lived about 15 minutes, in April 2008. I do have two living children now (a 10 year old son and a 4 year old daughter).

    As you may already know, from being a midwife, there is a growing perinatal hospice movement, which was not as developed in 2008, and this website: http://perinatalhospice.org is a great resource. I contributed part of our story to a book, which was published in 2011, called A Gift of Time, which I wish existed when I was carrying Molly. Also, a very good friend of my family’s is the former/retired Executive Director of NADS if you want, I could also connect you with her, as she loves to meet families with children with Downs (whether in utero or after birth). I grew up with her son, who has Down Syndrome and is like a cousin to me and now in his early 40’s. Anyway, I am so sorry you are going through this. Hang in there and I will be following your blog in the days to come. Sending thoughts and prayers your way.

  4. I’m not going to pretend that my pregnancy was any where near as intense as yours is but there are so many similarities in thought processes and experiences that it’s uncanny! The feeling that the baby was telling me something was really strong. It was an undeniable feeling for and a really comforting one. Go with it. Don’t question it.
    I wrote about that feeling here….Part 3. 20 week scan | Embracing Wade
    http://embracingwade.wordpress.com/2013/03/29/part-3-20-week-scan/

  5. I’m pulling for you and your Tiny. Please know that even though we don’t know each other, I am sending love your way. (Motherhood has a way of bringing together strangers, doesn’t it?)

  6. You’ve got one little trooper inside of there! Please know you, your husband, and your little one have been in my thoughts and prayers daily, Meghan. xo.

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