Holding Harper- A Down Syndrome Birth Diagnosis

I had many reservations about having a 4^th baby.  Three kids had completely overwhelmed me and given me a first class ticket on the crazy train!  I was working from home, my kids spanned quite a few age groups which meant we were in different phases of life all at once, and I. Was. Tired.  Plain and simple – I was feeling a little bit selfish and seriously doubting my ability to handle it.

But just like all the other times, I couldn’t contain my excitement after waiting the longest minute of my life for the line to turn pink (or to get a double line, or a plus sign, whatever it was!).  It was official, I was excited, and there was definitely no turning back!

My pregnancy felt very similar to my others – nauseating!  I think the only difference I really noticed was that I was maybe a little bit more hormonal. (My husband will tell you that is my norm!)  I worked hard to be healthy which was unusual for me during pregnancy (or ever if we are honest!). I had multiple ultrasounds because I have giants for babies so they’re always checking the size.  Nothing seemed off there, baby was growing just fine, everything looked great.  At our anatomy scan I distinctly remember them going over all the organs, especially the heart.  I love watching their little hearts beat on the screen and then when they let you listen and it just sounds like a washing machine to your untrained ears.  We were having a surprise so I was trying to remember if it was boys or girls who had a faster heartbeat for the old wives tales you hear.  The tech showed us all 4 chambers and said everything looks great!

The day of the induction arrived and I was pushed back, and pushed back, and pushed back the entire day.  I hadn’t been in any hurry until that day, but now that it was here I WAS SO DONE. They finally agreed that I could come in at 5:00 pm that evening.

Once I was there I was just happy to be there.  Everything was going smoothly, I had the most FANTASTIC nurse (months later I ran into her AT A DOWN SYNDROME EVENT.  She had a daughter with DS and our girls are just a year apart if you can believe it!), my doctor came back on a Friday night to deliver me instead of having the on call doctor – I was very well cared for.  Fourth kid – I’m a pro at giving birth at this point, I pushed for half a second and there she was.  My beautiful, 9 lb 14 oz, precious Harper Joy. Tears of absolute joy streamed my face at the huge surprise it was to have a girl after 3 boys.  I had a daughter.  She was beautiful.  They finally handed her to me, and here is where I get real.  Those of you reading this are about to become some of my closest friends because I’m going to say some things in here that I have rarely uttered to anyone – even to some of the closest people in my world.

She looked…different.  Swollen or something.  Especially her eyes.  Every time they have handed me one of my babies for the first time I have had different thoughts and impressions about them, and the moment they handed Harper to me I thought “Down syndrome”. I hope with all my heart that doesn’t sound dramatic, but I knew that very moment that she had Down syndrome.  I glanced at my husband and that is one of the moments that will stand out to me forever where I understood what it really means to be one with your spouse. Where you can say and understand so much without speaking a word. He knew.  We knew.  And yet – no one else in the room seemed to know.  It was business as usual, guessing the weight, excitement over a girl, then handing her to the nurse to get her cleaned up.  Looking back now, it’s almost as though I can feel myself in 2 different realms. The one where I knew and the one where I had hoped I wasn’t right.

When the cute nurse cleaning my Harper up made some comments to me about how far she could spread her big toe and that cute little toe gap, about her chubby extra skin on the back of her neck, she was confirming things I already knew about Down syndrome.  Was she trying to tell me something?  How would she know that I was familiar with those markers?  Yet I will always feel like she was whispering comfort to me, trying to confirm what I knew even though no one was saying anything.  I will forever wish that she could have been the one to tell me because I know she would have presented the diagnosis in such a beautiful way.

Harper was struggling a little bit with her oxygen but she seemed to work it all out and they left her in my room.  I was completely exhausted at that point, had talked myself out of my self-diagnosis since no one else had anything else to say about it, and I drifted off into a blissful night’s rest where I was now a mother to 4, we had a daughter, and all was right in the world.

In the middle of the night they came for vitals and woke me to say that they were going to take Harper for a bath. Just a short time later they came back into my room followed by an oxygen tank.  I was so sad.  My last baby was a NICU baby for a few days and I did not want to do that again.  They assured me that she was okay, they just wanted to monitor her oxygen levels and were taking her to the special care nursey. I felt at peace about it and drifted back to sleep.

Fast forward to 6:30 that morning, a man I had never met before in green scrubs strode into my room, woke me from a dead sleep by flipping on the light and flinging open the curtain.  He barely introduced himself (I wasn’t even coherent enough to catch his name) while flashing his hospital badge and he loudly says “Are you the mom with the baby on oxygen?”  Yes, that’s me.  I think.  I’m still delirious, so I’m honestly even questioning myself.  He launches into some doctor speak about high flow oxygen, a possible infection and something about people called hospitalists which had something to do with why he needed to be the one talking to me.  My husband is snoring in the corner and I wonder if I should wake him up for all of this.

And then the moment that forever changed my life.  He flopped (it’s the best way I can describe how flippant he was) into the chair at the side of my bed and says “And now we need to talk about why I think your baby has Down syndrome.”

Friends, it doesn’t matter that I knew this the moment they handed her to me.  That did absolutely nothing to sway the complete and utter shock and devastation that I felt at that moment. I attribute much of this to the way it was presented to me.  I’d just had a baby, I had been woken up out of a dead sleep, it’s was early in the morning, and here was some person I didn’t know showing careless disregard for the fact that he was giving me life altering information as he coolly stared at me while he sat in his chair.  He kept talking, telling me about some of the markers Harper had and I mentioned to him no fewer than 3 times that I needed to wake up my husband.  Yet he still kept talking, right over me.  Right over anything I was saying.  He paused only when I mentioned that I had 2 cousins with Down syndrome and was familiar with many of the markers.  He seemed a little surprised/interested about that.  He finished with whatever he was saying and then said “Oh, I guess we should have woken your husband for this.”  You think? Never mind the fact I mentioned it 3 times.

He strode out of the room and through the closed door I heard him telling the nurses, “She has experience with Down syndrome, she’s doing just fine.”  Just fine.  Outwardly anyone who was blindsided (that feels silly to say because I know I told you I knew, but it really did feel like I was blindsided) and barely awake would probably seem “just fine.”  But as soon as he had closed that door, I lost whatever composure he thought I had.  I remember sobbing and trying to wake my husband up through my tears.  Then I proceeded to do to him exactly what that doctor did to me, drop a bombshell while he was half asleep and not entirely awake in a very nonprofessional way as I sobbed hysterically.  What a wonderful man I married.  He sat next to me quietly, rubbing my back and instead of me even acknowledging how he must be feeling too, I cried that I just wanted my mom there.

My sweet nurses entered my room quietly.  They picked up all the broken pieces that doctor had made of me and put me back together as best as they could. They knew the way to fix where I was, was to get me to my baby.  Up to the nursery, we went.  Me a sobbing mess being pushed down the hallway in a wheelchair.  I felt like everyone in that hallway was looking at me with pity in their eyes.  Did they all know? I think it was more pity that they didn’t have a clue why I was sobbing, yet understanding that something big must have caused me to act this way.

Holding Harper definitely calmed me.  For the next few hours I just sat and held her.  I looked her over, and I smelled that sweet baby smell, I kissed her beautiful face and told her I loved her no matter what.  All the cords and the oxygen were so frustrating to me.  It felt like she wasn’t really mine with all of those things hanging off of her.  Something would beep and people would be in to fix her or adjust something. All I wanted to do was care for her and I couldn’t even do that. Helpless was the best way to describe how I felt.  Suddenly I was hearing things about positional airways and heart defects and I kept wondering why they hadn’t seen anything wrong with her heart on the ultrasounds.

After a few hours, we went back down to my room.  My tears had subsided but as we walked down the hall and my husband faced the fact that his parents were in there waiting and had no idea what was going on, he could no longer hold back his own.  We stood together just outside the door while he sobbed into my shoulder, unsure if he could even do this.  I hope he looks back at that moment and feels the way I do about him in my tearful state after the doctor broke the news.  I hope he feels that I was there for him how I felt he was there for me.  It was strange as we continued through this journey how we were always on the opposite ends of our grief.  What a blessing that truly was that when I was weak, he was strong and vice versa.  I could not have gone through this journey without him.

There was a moment once where I was alone in the elevator between the nursery and my room and my heart hurts so much to admit this, but I had the thought that this would have been so much easier had I just had another miscarriage, or had never gotten pregnant.

That was the single darkest moment that I can remember.

So much sorrow fills my heart now to think back on that.  To think of the many, many women I know who would love the opportunity to be a mother, or those who have felt that great loss and know that in my darkest moment, they would have been stronger than I was to accept this great responsibility that I had been given.  I have rarely spoke of this moment for the pain that it brings me, but I share this in the hopes that other mom’s with a new diagnosis do not feel alone in their sorrow and grief.

That they might know that “Weeping may endure for a night, but joy comes in the morning.” Psalm 30:5

At the time I thought I knew everything about Down syndrome. I learned I didn’t, life likes to keep you humble sometimes!  I had grown up very closely with 2 of my cousins who have Down syndrome.  They were amazing and such a bright spot in my life.  In my grief I felt so much guilt.  I was devastated that Harper had Down syndrome.  Did this mean that I didn’t love my cousins as much as I had thought I did?  Was I saying that I thought their lives were less than what I would want for my daughter?  I felt so much shame for feeling this way.  What I have learned about these experiences are that they are natural.  That it’s okay to grieve for the life you were planning on and the fact that your path changed from what you had imagined.  I spoke to my aunt about this months later and admitted my guilt and shame and she spoke such peace to my heart.  She had felt all of these things with her daughter’s diagnosis, and 8 years later when it happened again with her son, she felt it all again despite knowing how truly wonderful life with her daughter had been.

My aunt also gave me the single greatest advice.  She told me that I just needed to remember that she was a baby first.  Don’t miss out on all of that excitement because you’re so worried about “Down syndrome”.  Enjoy her.  Love her.  Let her be a baby.  While I won’t say I was perfect at that and her diagnosis clouded a lot of her first few months, I know that made a difference in my processing our new reality.  I often wonder what this would have been like to go through it completely in the dark about all things Down syndrome without my aunt’s help and advice.  Someone that I loved so dearly and had looked up to all my life was guiding me along this path.  I feel very thankful for that tender mercy in my life.

There were nights (a lot of them) that I sobbed myself to sleep.  I cried so many times when I was alone with Harper wondering if I would always look at her and think “Down syndrome”.  It was about 4 months later I started to notice that dissipate.  Looking back on it now makes me chuckle.  Those were the months where the fact that she had “Down syndrome” wasn’t really even noticeable.  In fact most people would be surprised when you would tell them and say things like “She doesn’t look like she has Down syndrome.”  (I’m kind of snarky and always wanted to respond with “Oh yeah, I was just making that up….” but something told me that wasn’t the right response!)  Now that it’s more apparent and people will actually stop us to talk about it, I think about it less.  Now that I’ve had 16 amazing months to get to know her, she’s just Harper.  How the fact that she can do the splits to sit herself up, or falls asleep folded in half is just our normal when other people around us are perplexed by those “skills”!

Now when I cry about anything “Down syndrome” it’s because I see the joy.  I weep at the accomplishments Harper makes, the new skills she learns.  I distinctly remember crying tears of joy the first time she was able to self-feed those stupid baby puffs.  I can experience that joy because I also remember a time I was sobbing while holding a baby the same age as Harper who was already self-feeding those puffs and she wasn’t.  I firmly believe I am now blessed to see joy where I didn’t even know it was because of Harper.  I’ve learned so many things about development and how exciting even simple skills are.  I completely took those things for granted with my 3 other kids.  I didn’t even know that banging toys in midline was a skill, and now those kinds of things are beautiful to me.

I see the joy that Harper brings to so many people.  Aside from that horrible doctor who told me of her diagnosis (Side note – I still don’t like him, but I’ve forgiven him), we have had only positive experiences with friends, family, and people we don’t even know.  Harper is such a light in our lives.  Not one person told us they were sorry.  We were met with an outpouring of love, excitement, and congratulations for our sweet girl.  And that love and excitement that has surrounded us just grows each day.

Read Harper’s Open Heart Surgery Story

While we might have had to do open heart surgery at 6 months, or lived with oxygen 24/7 for 3 months, or have a few more doctor appointments or therapy appointments than we were planning, her life has been more than just adding another child.  She’s brought so much happiness to our family.  Her brothers adore and dote over her even 16 months later.  Our trials have made our marriage stronger as we learned to face the hard things together.  While her middle name, Joy, is a family name, there is no doubt in my mind that name was planned for her long before we gave it to her.  This path I hadn’t planned on walking down was never really mine to decide, and how blessed we have been to be the recipients of such a gift.

 

 

Bio:  Janelle is mom to 3 handsome boys and a beautiful little girl rockin’ an extra 21^st chromosome. She’s been married for close to 15 years to the love of her life.  She loves reading, binging crime dramas on Netflix, drinking copious amounts of Diet Coke, and the occasional hike, because Utah is amazing!  She is a firm believer that joy can be found at all times, but that it’s okay to be real while you’re waiting to find it. Follow along with Janelle on Instagram: @a.little.extra.joy