Birth Story

Preface

Journal Entry for March 29, 2018

“I wonder if I opened up this journal and wrote ‘my heart hurts’ every day if it would eventually hurt any less?”

That is the first and only thing I have been able to write in my journal since Lydia’s birth, so far.  Because it’s hard. To relive the memories and the emotions and honestly write them down is hard. But now, now that she’s six weeks old, I’m caught between “I need to write it down… maybe I’m finally ready…” and “If I don’t write it down now, I’m going to forget.” So we are going to try.

But if it’s hard to write, I’m sure it will be hard to read, so if you’re feeling judgmental or weepy, maybe just don’t. Especially since it took an incredible amount of courage and vulnerability to write these things down. And for those who keep going, and maybe even Lydia herself who might read this one day, just know that this is a real life example of “opposition in all things,” “for if they never should have bitter they could not know the sweet.”

One week before delivery-day.

One week before delivery-day.

 

***

“Did you know? Did you have any idea?”

It’s the question that everyone asks. Friends, neighbors, nurses, technicians. Everyone wants to know: did we know? The short answer is, no. We did not. It wouldn’t have made much difference if we had—we would have still welcomed our girl with open arms—but maybe I would have been a little more prepared for our first meeting.

Of course, I was flagged at my 20 week ultrasound because her lungs “looked a little bright” and her femur was measuring small. The nurse told me not to google anything before going to Maternal Fetal Medicine for a more detailed ultrasound, but of course I did. Searches for bright lungs, the primary concern, revealed a lot of scary conditions that could require surgery after birth. And the short femur, well, that IS a marker for Down syndrome, which completely freaked me out. But her brother had measured exactly the same in utero (I actually looked up his ultrasound measurements and compared them) and he was completely fine. Still, I prayed (BEGGED), “Please, Heavenly Father, PLEASE let her body be fine. Please let there not be anything majorly wrong. And PLEASE bless her to not have Down syndrome.”

So we went to Maternal Fetal Medicine, where the specialist looked her over really well in the ultrasound. They examined everything---the brain, the fluid behind her neck, her heart, her femur. After a lengthy investigation, this is what they told us: “She’s fine. Her lungs look bright because of the settings on their machine and because you scan well. As for her size, I’m not even worried about it. COULD she have Down syndrome? Well, yes. But there is nothing here to indicate it. Everything looks fine. I would say you have the same odds as anyone in the population.”

Exact words.

We had a follow-up appointment with Maternal Fetal Medicine four weeks later, just to make sure things still looked good and to make sure the placenta looked ok (there had been some questions about how the umbilical cord was attached to it). A different specialist looked at the ultrasound. The placenta issue had resolved! Again, they looked at her heart, her fluid, her size, and everything else. This specialist also confidently said, “Looks good to me! She’s fine. Congratulations! You don’t need to come back.”

So at that point, I put my fears aside. I trusted that everything was ok with about 98% of my heart. The other 2% were reserved for her birth, when, I told myself, “I’ll finally FULLY relax when I can see in person that she’s perfect.”

 

I’m shaking. My whole body is shaking, especially my hands. That’s how hard it is to relive this. To get it out.

 

We went to the hospital about 9 pm on Friday night. Dan had spent a grueling day in job interviews up in Salt Lake, then had driven home in a snowstorm, picked up the kids from Grandma’s (she babysat them while I had a doctor’s appointment that afternoon), and we learned that one child was complaining horribly about an ear ache, so Dan ended up taking him to the instacare. Meanwhile, I was in labor, and trying to decide if my water had actually broken or not (it had).  So with kids home from the instacare, antibiotics administered, everyone finally put to bed, and Grandma called to come over, we headed to the hospital where they admitted me and labor began in earnest.

I was as prepared as I could be for labor, and it went smoothly. We walked around the hospital halls, looking at the beautiful pictures of newborns that lined the walls, wondering what our sweet baby girl would look like and what she would be like. In the room I bounced on a birthing ball and Dan applied counter pressure during my contractions. It wasn’t until I hit about an 8 that I said, “You know, this day has been long enough, let’s get the epidural.” It was my first successful epidural! The anesthesiologist was great, our nurse was sweet, and we laughed and talked our way through labor, anxiously and excitedly waiting for baby girl.

Before long, I was pushing and then she was here! The cord was wrapped tightly around her neck, and she was “stunned.” They took her over to the bassinet and worked on getting her to cry. None of my kids have been criers at first, so I wasn’t worried about it. Sure enough, before too long they were handing her to me.

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The first thing I saw was a bright red face and a lot of blonde hair sticking straight up. Classic newborn attractiveness. I later realized that there is a picture of me as a newborn that looks exactly the same: swollen red face, blonde hair. Totally not my favorite picture, but also completely endearing now since my little girl looked exactly the same! But I didn’t think about that at the time, because I was busy looking closer. And that’s when I saw.

While the picture above doesn't fully portray what I saw, her face had all the markers of a child with Down syndrome—the shape of her eyes, especially. But wait! MFM had told me she was fine! And all of a sudden that 2% of doubt that I had filed away until I could see her in person came roaring back to the forefront and became my whole reality. I knew.  She did have Down syndrome. I was completely shocked and devastated.

But no one around me was saying anything. The nurses were all busy doing their thing, and nobody acted like anything completely earth-shattering and life-changing was going on. In a brief moment of privacy I turned to Dan. “She looks like she has Down syndrome to me,” I gasped. “That’s what I thought, too!” He said, equally surprised. More frantic glances at the nurses, the doctor--anybody. No response. Finally I turned to my labor nurse, who was a sweetheart, and feeling awkward and almost ashamed in that traumatic moment, tentatively asked, “So… she looks a little… different to me…” “Yes,” the nurse replied, “Someone from nursery will come up to look at her.”

And that was all.

But we knew.

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***

The nurse did come up. By a tender mercy from heaven, she “happened” to be someone who knew Dan growing up. I took so many human and child development classes in college that I lost count of them all, and as the nurse pointed out the markers to me (she couldn’t offer an official diagnosis), I knew what they meant. Poor muscle tone, low-set ears, almond shaped eyes, extra skin at the back of the neck, flat bridge on the nose, single deep crease in the hand: She has Down syndrome.

I made a decision in that moment: I was not going to deny this. I was not going to hold out false hope for the results of the genetic test to come back. This was it. This was the proof. As unbelievable and shocking and hurtful as it was, this was real.

My daughter had Down syndrome.

To be honest, I don’t remember much after that. I remember Lydia nursing well, and how happy and relieved that made me (nursing is always my biggest stress). I don’t really remember leaving the delivery room or arriving in our recovery room. I don’t remember when they took her away to the NICU or why. I do remember them telling me the pediatrician would be by in the morning and that he would be able to “tell us more,” (did that mean give us some official diagnosis?). And I remember being left alone in my room with Dan. I’d never been left without my baby after giving birth, before. It felt so wrong. Everything was wrong. But it was real. And it was night, and we were supposed to be “getting some sleep.”

Thus began the longest night of my life.

I didn’t sleep. They turned off the lights, I laid down on the bed and closed my eyes, but I didn’t sleep. I prayed. All night long.

I don’t even remember what I prayed for. Strength, probably. Perspective? Hope? That, since she was in the NICU, she’d be ok? I think I just reached out to Heaven because more than any other time in my life, I needed Heaven to reach down to me. To be with me. To help me through this. Because if I knew anything I knew this: I couldn’t do this. This was for someone stronger. Someone without my weaknesses. This was not for me. My heart was broken, and I was terrified.

Hours and hours went by. I must have at least drifted into some kind of sleep because I had the sensation of waking up and realizing that it wasn’t just a dream. The nightmare was real. My heart was sick and bleeding. My baby was still gone and Dan and I were alone in the hospital room where a picture of a “normal” newborn hung on the wall looking down at me.

“That’s not my baby,” was all I could think.

***

That was probably the low point. In the morning, the pediatrician did come in. He confirmed that she “did have several markers of Down syndrome” (I guess no one wants to give the official diagnosis in a case like that without the genetic test results to back it up). I had already accepted this, but then that sweet man took me by surprise. Tears filled his eyes as he told us, shocked and grieving parents that we were, how special children with Down syndrome are. What a blessing they are to their families and to others. He cried with us and comforted us. In our moment of tragedy and trauma he offered both empathy and hope.

It melted me.

I will love that man forever.

The NICU nurse from the night before was back, as well. When the pediatrician was finished speaking, she added something through her own tears. “You need to grieve,” she said. “It may seem strange, because you just had a baby, but this is not the child you thought you were going to have, and you need to acknowledge those feelings and let yourselves grieve.” The permission to feel the hurt was a gift. Because you feel guilty crying over a precious new baby you’re supposed to be excited about. She was beautiful and strong, true, but completely different than what we were expecting. We were traumatized. We were scared. We were in shock. It was all so much to feel. And allowing ourselves to feel the hurt was the first step toward healing.

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Thoughts on World Down Syndrome Day

I’ve always been awkward around people with special needs. Never knowing what to say or how to act. How to relate and not offend. Feeling like it was easier to just avoid interaction and keep us all comfortable. To love and respect at a distance. That was me.

And then I had a daughter with Down Syndrome and my world changed. Drastically. Pushing me way, way out of my norm and my comfort zone.

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Over the last three and a half weeks I’ve had the opportunity to care intimately for someone with special needs. To make major decisions regarding her care. To be the resident expert on her. And yes, even to be her advocate. And you know what it’s like? Basically just being a mom to my new daughter.

Not to minimize her diagnosis. It’s also been a three week crash course in Down Syndrome; reading books, meeting with doctors and social workers, arranging tests, and planning for the future. It’s been emotional and eye-opening and life-changing. But one of those life-changing elements has been learning to see with new eyes. To look at my Down Syndrome baby and see… Lydia. Lydia the person, instead of her diagnosis. Lydia with her own personality as a unique member of our family and someone new to love. Just, Lydia.

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I’m not an expert on this yet, but I hope that with practice I’ll become one. That some day *Lydia* is all I’ll see. Of course, she’s a newborn, so there is a lot that you just can’t tell, yet. But, while it does profoundly affect our lives, there’s more to her than Down Syndrome.

Who is Lydia?

First, she’s curious. While she still sleeps much of the day, when she is awake she is actively looking around, EVERYWHERE. That little head and those little eyes are going, going, going. Trying to take in the whole world around her. I love that.

Second, you should see this girl do tummy time. I remember subjecting my boys to this most miserable of newborn exercises, and they always gave it a few tries before collapsing in a face plant of infant tears. Yesterday I tentatively put Lydia on her stomach, expecting that with her low muscle tone she wouldn’t be able to do much and would quickly get frustrated. And it’s true, she struggled, but she didn’t give up. She didn’t collapse into tears. She fought. It was pretty remarkable to watch that little girl strain to lift her head, rest, then try again. She didn’t cry. She is fierce and persistent and determined. It amazed me and gave me a lot of hope. We’ll need exactly those attributes.

Finally, there’s a quiet, optimistic peace about this girl that I appreciate. She is gentle and positive by nature, and that is a gift. And she likes to cuddle, which this mama loves.

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I’m so new at this. And awkward. And incredibly imperfect and humbled. But if there’s one hope that I have for my daughter and her future, it’s that people will make the effort to get to know her and love her and respect her for who she is: Lydia. And that they’ll allow and encourage her to be her fullest self.

Today I’m grateful for all those who have gone before. For researchers and doctors and interventionists. For parents and teachers and members of society and friends who have realized that people with disabilities are people, first.

And I’m grateful for Lydia. Who came to earth as her own person, and who already is a gift and a blessing and an expert at opening her mother’s eyes.