A Down Syndrome Pregnancy- thoughts from one mom

I routinely get messages either on my instagram, sometimes facebook, even email.  Messages that make my heart soar.  Messages from other moms who share that they stumbled across this site and it has been a help to them.  They see they are not alone, they see there is hope.  That was my goal from the inception of this site, to offer that to other new moms.  I so wish I had found a compilation site like this when I learned of Cedar’s Down Syndrome diagnosis just months ago.

My heart is even more full when those messages are from a mom still pregnant and waiting for her new blessing.  These moms are the most tender because they are just peeking through the window, they are not yet on the other side where we all are awaiting them with open arms.  Here is just one such mom.  Bonnie reached out to me after finding @cedars_story on  Instagram, we have chatted and she is such a strong woman with a sweet heart for her new babe.  She allowed herself to be vulnerable and share what this time in her life feels like some days.

 

“No nose bone and a heart defect.”

I knew what that combination meant.

The plan was to wait until birth for the gender reveal,  so I was really just there to see the baby’s sweet profile. The halfway milestone of knowing it was ultrasound day brought excitement. After we were informed of the suspicion of Down Syndrome, everyone’s voices became that of “Peanuts” parents. Stuck in a cartoon and I was Charlie Brown with the things didn’t workout as planned, music playing in the back ground.

On my birthday, shockingly a Saturday, we got a call from my OB while we were out enjoying the sunshine, it was confirmed, our sweet baby would have Down Syndrome. I felt relief to hear someone say what I already knew. I had 10 days to think about it and decided this would be nothing less than a blessing. My husband said we had been chosen. God knows we are perfect for this child. I know, we are practically saints.

I felt good, I felt positive, I felt ready to take this on this chapter in life!

Then there was a heart specialist appointment where we found there was another possible heart defect. Don’t ask for the name, I still hear the “Peanut’s” parents talking.

Mommy DS fog is real!

This heart defect is more serious than the first found. Baby’s position could have just made things look narrow, but we will have another look next ultrasound. So many of those now. They use to bring joy. Now they bring pleading prayers.

For the most part, I have stayed positive, but then all of a sudden I fall apart.

What if my own baby’s face bothers me? What if I’m not good enough for such a sweet soul? What if my baby dies?!? How unfair this child’s life outside the womb has yet to begin and I’m wishing time away to the point of it having a healthy heart.

I broke down laying in bed thinking of my older boys nearing 16 and 17. I had them just out of high school. They have been my rock and partners in crime all their lives long before I met my husband, their adoptive father.

I have to mom, but I see them as my best friends too. I sobbed at the thought they’ll go to college soon. and I’ll experience so much of this without them.

I can’t even write that without crying.

I fear the baby will still be so young when they leave when they come home to visit, this person will be awkward and weird to them. And they won’t know how to socialize with the youngest sibling.

It pains me to picture them feeling uncomfortable near their own sibling.

I think of my now 9-month-old son, and I cry at what a messed up year his second year of life will be. I fear I will resent my baby because I will be missing his toddler sibling so much while in and out of the hospital.

I feel guilt for almost every thought.

I then have my adopted daughter, my husband’s birth child, now in college. I worried if I finally had a birth daughter, would that make her feel lesser than and pushed out? To that ongoing question over two pregnancies has been answered. I do not think Josephine will envy a sister with Down Syndrome and she will clearly see a mother’s love is different for each her children.

I suppose I spend an odd amount of time looking at pictures of babies and children with Down Syndrome. I feel like when I was a kid flipping through a JCPenny catalog. I want those appliances, these clothes, that baby crib, that couch…… Picking out what I find to be the most beautiful little ones with Down Syndrome, and could be similar to my families features.

Then I grow sad knowing I have no control over that. With that thought I have to remind myself, it’s the cute baby obsession. If one of my older kids grew up to be flat out ugly, how much would I really care? But I didn’t want them to be ugly babies or kids. As they grow that vanity fades and we focus on them surviving in this world. That will be no different with this child. I think I’m old enough to let baby vanity go.

OLD! Geeze! I’m newly 36 and everyone likes to tell me they read age is the reason, then look at me as if I should be saying, “oh yes, we found out my old rotten eggs messed this baby up!” You have your medical degree from Google so obviously you don’t need my confirmation it’s my rotten eggs. I suppose no one stops to think that might make a mother feel you’re saying it’s her fault and she caused her child harm. That comment will make you cry. But I see that comment as preparing for lots of rude comments ahead and learning to respond with grace and humility.

I did watch “Born This Way” for first the time on A&E. Cute for the most part but at times each person annoyed me for a different reason. I laid in bed trying to sleep thinking how much it bothered me some DS people annoyed me. Then I think, I don’t really like most people and it doesn’t take much to annoy me. I think that makes them more human in my mind and less a disability. Also, I know I’m a different parent than any other parent. We all have our own style and raise a rainbow of people in this world from it. My child will have similar features of myself and/or my husband, they too will have similar personalities too. This is our child and our blessing. With sometimes joyful, sometimes heavy hearts, we desire them and no other child to be in this wonderful family.

So here I am now, waiting with love for our new little one to arrive.

 

Bonnie is originally a Tennessee girl (she says the hair and makeup give her away). Bonnie and her husband Mark have created their own little Brady bunch with their combined 5 children. The couple decided to start their family new and fresh, having a son together in Aug of 2016. The couple loves all types of travel and the feeling of seeing it through their children’s eyes. They are now awaiting their newest addition, a sweet baby set to arrive in early Sept with a gender surprise and an extra chromosome.