A Letter to My Unborn Child, About the Ache

July 23, 2014

My dear little one,

We are in the seventh month of growing you, and as the time gets closer to meet you, I find I have this aching in my heart and in my body.  I ache to hold you, to smell your fuzzy little head and sweet baby smell.  I ache to see your face and who you resemble.  I ache to have those quiet moments together, just me and you, nursing and cuddling.  When I see other babies and hear their cries, I ache to hear yours.  

Ten weeks ago yesterday, I felt an entirely different ache.  My heart and my body ached then, too, but they ached with desperation and sadness.  When I heard the words, “Your baby has Down Syndrome,” my body doubled over with this hurt.  Through the next two weeks, my heart and mind ached with grief.  I lost sight of you, my sweet baby.  I saw only your condition, not my sweet boy, and you became Down Syndrome.  It’s all I could see.  I couldn’t talk about you without crying.  I couldn’t think of your big brother, Nick, without aching for the brother he would never have, the one I had dreamed for him.  I couldn’t tell our family about your condition because I ached at the thought of upsetting them.  I couldn’t read Nick’s silly book “My New Baby” to him, because it made me cry and hurt and wish for different.  I was seeing what I had lost, and I could no longer see you.  I ached for this unknown. I ached so much because I wasn’t thinking about YOU, I was thinking about this one piece of you.  Part of you, but not all of you.  

I’m not sure, exactly, what brought me back to you.  What brought you back to me.  What dulled that sad, desperate ache.  The support of family and friends, – Oh, they love you so much already! – the welcome we received into this new community of friends with others just as wonderful as you.  These helped the sad ache, I’m sure.  But, I think it was you who brought me back, feeling you kick, reminding me that you’re there, my sweet baby.  That it’s you, my baby, not a condition.  Down Syndrome will be a part of you, and will no doubt influence the amazing person you will be, but it is not all of you.  You’re MY baby.  You chose me for your mom, and for that I ache with joy.

I stopped crying and haven’t cried since those first two weeks after your diagnosis.  You brought me back to the wonderful ache of anticipation and eagerness to meet you.  Don’t tell your brother, but part of me is even more excited than I was when pregnant with him.  I didn’t know what to expect with Nick, but I know how it will feel this time, to hold my sweet new baby, and smell his fuzzy little head and have those quiet moments of cuddling and nursing, just us - what no one else on this earth will have.  The feeling of loving someone so entirely, perfectly and completely.  I know that ache well.  

I love you forever and always, 

Mom

The Diagnosis

The Diagnosis                                                                            July 13, 2014

At a couple days short of starting my 7^th month of my second pregnancy, I hear a lot of “when are you due?” and “Do you know what you’re having?”  My answer, always, is “End of September or early October. And, yes, we are having a boy.”  In my head: “Insert asterisk: * and he has Down Syndrome.”  Whether I choose to share this information or not depends a lot upon who I am talking to, and whether it flows into the conversation.  Side note, it never really flows into the conversation, but I sometimes add it anyway.  Why?  Maybe I feel the need to say it out loud sometimes, or just to emphasize that it’s ok and I’m not embarrassed.  I don’t know.  I’m still sorting out feelings and testing these waters.  

We are calling him Sam, for now anyway.  I withhold my right to change my mind at any point!  We are starting week 28 in a couple days and Sam was diagnosed with Down Syndrome at week 19.  The week previous, I was called into my OB’s office to be told the baby screened positive for DS for the quad screen blood work.  I thought nothing of it.  My best friend had a false positive for the same screen.  This was just a false positive, and the baby will be fine.  Regardless, in lieu of an amnio, I agreed to take another blood test, called MaterniT21, that tests specifically for Trisomies 21, 13 and 18, just to be sure.  This test is 96-99% accurate.  The wait would be 8-10 days, so when I had my routine OB visit 7 days later, I didn’t think I would get the results, so I told Jeff to go to work rather than joining me for the appointment.  Long story short, the results were in, and they were positive for Down Syndrome.  The room closed in. There were tears and “You’re not supposed to say that.”   I called Jeff as soon as I left the doctor’s office, and he told me to come to his work.  We drove next door to the Lowe’s parking lot and talked about this news.  I went home, rather than to work, so I could calm myself down and research.  I didn’t research.  I cried.  I baked brownies and cookies.  I took the dogs for a walk.  I cried some more.  I ate most of the brownies. 

Of course, one of the nagging thoughts that first day was, “Why us?”  But, being a Social Worker and having heard some horrific first account stories, as well as having some very lovely people in my life go through traumatic events and losses, I quickly realized, “Why not us?”  No one is immune to this.  I’ve never been much of a “poor me” type person and I don’t plan on starting to be one.  Going on nine weeks post-diagnosis, I must say I’m almost embarrassed by my initial grief.  And it is grief.  Grieving the life I pictured, grieving for the sibling my first born, Nicholas, won’t have.  But, I know what I went through is normal because I have heard from so many others who gave almost mirror accounts of my feelings and reaction.  Much of the grief comes from not knowing what the diagnosis means, and what to expect. Now that I have absorbed the diagnosis and have done some research, I’ve moved past sadness and I’m now more concerned with the unknown medical, cognitive and developmental issues that we may face.  I know I will have some more grieving moments throughout our lives, but for now I’m ok.  I just can’t look too far into the future, because then I worry, “Will he have friends? Will he ever have a wife? Will he go to school and work? Will he have serious medical issues?  Will I have to bury my child some day?”  But, for now, I’m trying to live in the moment.  Sam is growing strong in my belly.  He does have a muscular VSD (a small gap between ventricles of his heart), which has a promising prognosis, and hopefully will heal itself.  If not, he may need surgery.  Bringing Nicholas for shots hurts my heart so much, I just can’t think of possible surgery.  So, again, I’m trying to live in the moment and not worry about what I don’t know.  That’s not easy for me.

Yes, I’m past sadness.  I want to meet this little guy, after he is fully cooked, of course!  I’m so eager to see his little face, to learn his quirks and personality.  I’m so excited to see how Nicholas is with his little brother.  I like to think that God must think we are doing something right to bless us with this little guy.  Or, He thinks Nick will make a wonderful older brother, because he is already so loving and compassionate – the kid tries to kiss ants, for goodness sake!!  Or, maybe he was picked for us because he needs to teach us something.  I mean, look at me, Type A Planner, having to take a step back and NOT PLAN everything!!  I appreciate life and all the big and little things, but I most certainly appreciate those little things even more.  I am sure this appreciation will amplify as we get to know the newest member of our family. 

As I wrote above, I have this nagging feeling that I’m supposed to make some sort of announcement to people when talking about my pregnant belly.  But, believe it or not, Sam’s diagnosis is not constantly on my mind.  HE is constantly on my mind.  What will he be like? What will he look like?  But when pregnancy inquiries come up, I somehow feel obligated to tell people of his diagnosis.  Most of those I have told have had positive and supportive reactions.  A response I don’t appreciate, though I know is coming from a good place, is “He is still a blessing.”  Yes, of course he is.  I am the last person who needs convincing of this.  He is my baby.  I know he is a blessing more than anyone on this planet.  Not one part of me thought any differently before or after his diagnosis.  Yes, I have grieved what “could have been,” but I never once grieved having my baby. 

Jeff, Nick and I have met with a couple families who have kids with DS, and we have talked to a few others.  I know the value of not feeling alone in a situation, and so talking with other parents has been truly uplifting and extremely positive.  This has helped me immensely on this journey.  I have told a few people that the outpouring of support from the DS community makes me feel as if I belong to some sort of special, exclusive club.  And it’s pretty awesome to go from this negative, sad place to this place of love and inclusion and support.  I suppose that is what is prompting this blog.  To share our story, in case it helps someone else.  Life gets busy, but I am hoping to continue this and share more stories as our family grows and we find out more about our little guy, Sam. 

Thanks for reading :)

Lauren