The 5 Hardest Things So Far Following an At Birth Diagnosis

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Over the last four months I have been jotting down things that feel “hard”. I wanted to one day look back on them and remember how far I have come on this journey. I want to express these “hard” things as raw and honest as possible, in hopes another mama who is going through an at birth diagnosis reads this and does not feel alone. Because….truth is- beyond all the support and connection I have found in places such as facebook and instagram- I have felt very alone at times in my thoughts and feelings.

So with that said, here goes nothing. It is time to type all the discombobulated thoughts out of my brain and onto a keyboard. Thoughts that have built up for over 130 days (holy cow, it has been that long?!)…. Stick with me here, I am about to type out the 5 hardest things I have dealt with thus far:

  1. Number one. Ugh, this one feels the most fresh. This one has stung the worst. This “hard” consists of feeling a lack of connection with those outside the “DS group”. Yup. You heard it. I often feel like I can’t relate to others’ lives. Especially during my maternity leave when I was going to appointments after appointments, it was hard to relate or connect to friendships I hold near and dear to my heart. It was hard to feel like I understood their worlds when my world felt upside down with fear and never ending medical appointments. This has been tough. It has put a mental block in my way. I get in my head with certain friendships thinking to myself that it will be painful to talk to them since they just don’t understand. Or I get nervous they will ask questions that are painful to talk about. I get nervous they will talk about their kids and I will feel a certain way. It has just been all around a difficult aspect to navigate. I know everyone means well. It is more a “me” problem to work through. But I just wanted to type that out. Because it is real in my heart.
  2. Seeing month updates on other babies in my social media platforms. This one stings a bit too. No one means any harm by them- of course they are excited their baby is rolling over, sitting up, etc. It just hurts my heart a bit to see Henrik get frustrated with things he physically “should” be doing by now, while scrolling instagram and seeing a baby a month younger doing those exact things he is frustrated about. I just want to shout to the skies: don’t take your babies typical development for granted. But then I bring myself back to reality and REMIND myself I am the LUCKY one that gets to savor these milestones a bit longer. The milestones that race by some parents before they even blink. I get to savor them and enjoy them longer. And guess what. I can’t wait to celebrate these milestones when they do actually happen. because…… Any triumph that comes after great obstacle…. is a really really big triumph to be celebrated and remembered.
  3. Hearing (or I guess not hearing) radio silence from those who are close to you. I get it. I do. We are all so busy and have so many relationships to maintain. It is exhausting to have that one friend who needs so much from you. I see that. I get it I do. I really really do. I am just telling you regardless of how busy people are. It has felt lonely at times. & there have been times I wondered where people in my life were. You see, I felt this and experienced this when my mom passed away. People are there RIGHT AWAY. They are there when you get the news, they are there for the funeral (in my mom’s case), they bring you treats and flowers for a week after and then BOOM…. radio silence. Where did they go? Do they remember? Do they care? They continue to go on with their happy lives, while you feel stuck going through the motions, trying to find your “new normal”. You see this happens in many chapters of life I have come to realize. But I guess, I DID NOT expect it to happen after having a baby. A time where I needed people. I time where I did not have my mom, and just needed those random check-ins. Motherhood is isolating in general. Throw in an at birth diagnosis and holy moly that is a concoction of lonely with a capital “L” and an explanation point at the end! NOW, do NOT get me wrong here. People have been SO so so so supportive of us. The cards, the gifts, the messages, the sweet phone calls, etc. There has been SO much support. But I guess where I fall into this “hard” is, the same as when I fell into the “hard” my mom’s passing brought. Check in 4 months, 6 months, a year after. We are still in the depths of this new normal and sometimes it is nice to have those you care about just check in for no reason other than to just see how you are doing. I have heard from others that the radio silence is because some “don’t know what to say” or “do not want to say the wrong thing”. I get that, I truly do. But sometimes you do not even need to say anything for someone to feel your presence. Sometimes you can say simple things such as “how are you doing?” “how is your day going?” “how is Henrik doing?” and leave it to us to answer and open the doors to those things you were scared to possibly bring up.
  4. Pregnant women who have been deemed to have no complications- using you as a book of pregnancy symptoms to gain more information on what “went on in your pregnancy” to “ease” their mind that their baby “won’t have Down Syndrome”. Yes this happened. Many times actually. I guess I do not have much to say on this- other than that it has been hard to get these messages. I get that pregnant women are curious and nervous (hello motherhood!). However, I just wish people would be mindful of how these types of comments and questions could come off to someone in the depths of a new diagnosis.
  5. Dealing with a worldwide pandemic while in the midst of trying to support and give your child the best life possible. Hello therapy zoom calls. Nothing against the therapists- they are great, however, zoom physical therapy calls are not ideal., They physically cannot hold him, assess him, feel his strength, etc. It feels more like a weekly consultation. The awareness of his abilities and actual therapist work is left solely up to me. WHICH FEELS HEAVY. In addition to the heavy weight of therapies, important appointments have been cancelled. These cancelled appointments leave you wondering and wondering what news that appointment would have brought (good or bad). When you are dealing with big-type appointments related to your child’s health, vision, hearing, etc. it feels like your world is on pause- waiting for that next “bad news” to come. So imagine an entire pandemic (however long this lasts) waiting for some unforeseen news to drop at an appointment you waited eternity for. It is the essence of walking on egg shells wondering if your child is okay day after day without actually knowing. Lastly, the lack of socialization and human faces (other than ours) concerns me for his future development and social skills. BUT- This too shall pass, and all will be okay in the end. It always is. Everything is figureoutable. At least that is what I tell myself.

So those 5 things have been the hardest obstacles for me since I received an at birth diagnosis. Thank you for always supporting me the best you can. I appreciate you all.

The at birth story.

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My husband and I met when we were 16. A story for the books. Two young teenagers that were just trying to find their place in this world.  Two people that had no idea of the road life would take them on. Throughout the years we have seasoned many happy times and many sad times. Times of joy and times of loss. After we both lost a parent, you could say we had been through what felt like…. Plenty of hardships. 

Having a family was always on the radar. Coming from two small families, we knew we wanted to start one of our own. We were excited to experience that new life. We had experienced so much loss, that thinking of bringing new life into this world was beyond exciting. 

Ten months ago, on a day I vividly will never forget. I found myself staring at a positive pregnancy test. Staring at two pink lines for what seemed like hours before my husband came home from work…. Having no idea the amount of life change that stood behind those two little lines. So there I was, waiting for my husband to tell him the news… staring at those two little pink lines. Picturing our life with a baby. Picturing our families finally meeting a new bundle of life. Thinking to myself… “finally, a light at the end of this tough road we have been on”. 

Fast forward through 9 very emotionally difficult months. Months that involved never ending morning sickness, a baby shower without a mom, working full time while trying to balance many doctors appointments and ultrasounds due to some pregnancy complications. Nine months that seemed hard. Often thinking to myself “I just want a pregnancy that is calm and not so stressful…. So many appointments… So many concerns at the appointments… I just want to enjoy this time… and I feel like I can’t”. 

The pregnancy eventually got to the finish line in December of 2019. The pitocin dripped into my body hour by hour as I imagined this new life we were about to embark on. At this point we had kept the sex of our baby a surprise. I figured it would be the icing on the cake, the last hoorah during a tough labor…. Giving me that little extra piece of motivation to meet my baby and find out a boy or girl surprise. So hour by hour I watched the clock in the hospital room tick. I envisioned life with a baby girl and life with a baby boy, both equally as exciting. Tossing the names we had picked out for each gender back and forth wondering what name it would be. 

Fifteen minutes before midnight, our little baby boy, Henrik, came into this world. My husband announced the baby as a boy and cut the cord as I imagined. We did skin on skin for a few minutes and then he was taken to get an APGAR score. During this time (although I don’t remember due to blacking out from pain), I asked my sister if he looked “healthy” and asked specifically if she thought he looked like he had down syndrome. She of course said, “No! What are you talking about, he is healthy!”. My husband, five feet away with the baby had no idea my maternal instincts were clicking into gear, questioning the health of the baby I had just birthed. 

“9.9!” the nurse shouted. I asked what that meant. The nurse indicated 9.9 was Henrik’s APGAR score. A very high score at that, that was considered rare. So against my initial instinct and questioning of his health, I reassured myself… this was good. He is healthy. Finally…. The light after 9 hard months of pregnancy.  

After about an hour or two post birth, they wheeled us down to the post partum wing of labor and delivery. We went to bed, feeling a little delirious after a long day. Henrik was next to our bed in a bassinet. We slept for a few hours and I remember thinking to myself, is this normal? Shouldn’t we be doing skin on skin or attempting to feed? I had never had a baby before… so I kind of had to be told what to do… because I felt like I did not even know how to hold him. 

By morning, I started questioning again if it was okay our baby was still sleeping…. Not very alert… and no one was helping me attempt to hold him or feed him. Shift change came around and I heard whisperings at my bedside. I asked my husband if he had heard what I heard and he indicated he did not. I told him, “I think something is wrong”. My husband reassured me everything was fine and that he was okay. We talked about how excited we were for our future as a family of three. We envisioned this new life together staring at him in awe of the last 12 hours. 

Fast forward to an hour or so later to pediatric rounds… and all of a sudden there was a prominent level of concern mentioned to us. “He has hypotonia… and he isn’t showing signs he wants to feed”…. “We are sending genetics up to take a look at him”. 

There I was. Crying in the corner of the room. Knowing the severity of the situation if genetics needed to be involved. Mind you, we had just spent the last 12 hours of our life under the assumption that Henrik was healthy and okay. Envisioning an entire lifetime with this new boy. And boom, out of nowhere… left field to be exact… my world felt like it was crashing down on me. I have felt that shocking feeling before in life. A feeling I never wanted to feel again. But there I was… feeling it again. 

The nurse walks in and asks my husband why I am crying. He mentions to her that I am feeling overwhelmed. The nurse states something along the lines of “well… everyone wants a perfect baby, but not everyone gets a perfect baby”. I remember asking my husband “what does that mean?”. His shocked face could not even come up with words to respond to me. Okay, this is very very serious. But also, what the heck. Who says that to new parents, regardless of what condition their baby is born in…. Ugh. 

After what seemed like hours and hours, but was probably only ten minutes (I honestly do not recall, because time blended together by this point)… genetics arrived.

Looking little Henrik up and down, lifting him, and setting him back down into the bassinet… the genetic doctor states “I suspect down syndrome”. I stared blankly at her in disbelief. Then I looked over to my husband who had his face covered. “What? No. It can’t be” I stated. The genetic doctor then went on to explain how Henrik needed to complete a few blood draws to send labs out to confirm the suspected diagnosis. My husband still was speechless. 

The hours following the visit with genetics blended together. We didn’t eat. We didn’t really talk. We just stared at Henrik, wondering if it was true. We wondered, if it was true, what exactly it meant for him and our future. We cried together. We held each other. We called family to town to be with us. We were scared. We were confused. We were worried. We were grieving the life we had just envisioned for 12 hours. We were resentful. We were angry. But bottom line, we were scared. Scared because of how society had portrayed down syndrome to us throughout our lifetime. Scared because it is what seems like, the one thing they focus on testing during pregnancy to “prevent”. Scared because of the papers they give you stating all the “deficits”, all the “differences”, all the “limitations”, and all the “characteristics”. Even the word “down” syndrome has a gosh darn negative connotation. So how could someone hearing that term, not be scared?! 

By the time we were discharged from the hospital, we still did not know if Henrik for sure had down syndrome. We were awaiting a phone call from genetics for what seemed like another lifetime. Every hour of every day we were home….. For three more days….. We waited. Constantly checking our phones to make sure we did not miss the phone call that would inevitably change our world. In the meantime, we continued to go to many doctor appointments for Henrik. To all of which many doctors expressed varying opinions on if they thought Henrik had down syndrome. Some indicated they did not think he had down syndrome, others indicated they did think he had down syndrome. So we continued to ride an emotional rollercoaster of ups and “downs” for three whole days. Not knowing, just waiting. Holding our breath, while trying to take care of a newborn with some specific needs. 

Sure enough, by Tuesday afternoon… the call came. He had down syndrome. An episode of planet earth on National Geographic was on the television at the time of the phone call. As those words left the doctors mouth, a huge iceberg crashed into the ocean on the television. Metaphoric to how my brain and heart felt instantly. Like my world was crashing down around me. 

After hours and days and days of processing this news. We slowly started to feel okay. We slowly started to focus on the positives and on the things NOT listed on the papers and informative handouts they send home with you. Rather than focusing on the differences, we focused on the similarities. Rather than talking about what he might not do, we talked about what he will do. Rather than focusing on his ears, eyes, toes, and hands that are a little different, we just focused on the beauty that he was. 

You see, the dialogue that was presented to us with Henrik’s diagnosis…. was not the greatest. The information the doctors give you and the way your baby is talked about makes it much scarier. The “floppy” nature of his muscle tone, the weak neck that might not pass a car seat test, the risk of heart complications, the risk of feeding difficulties, the talk of a suppressed immune system, etc. All really scary things. Really really scary things for brand new parents. It felt like all the negatives and scary things were the only focus when we were in the depths of this brand new world….. When in reality, there are so many positives that could also be talked about. Such as how joyful and happy kids with down syndrome usually are, how flexible they can be, how they can live very purposeful and functional lives, and how even though milestones may take longer- you get the privilege of savoring each moment even longer than other parents. Many positives and stories of hope that could have been told to make the beginning of this journey less scary. 

At the end of the day, I just wanted to be told it would be okay. I just wanted to be told my baby is beautiful, rather than different. I genuinely just wanted someone to come and hold me and tell me it would be alright. The initial dialogues related to down syndrome could have definitely been better. I have hope that one day, at birth diagnoses and prenatal diagnoses can be presented in a not so scary way. I have hope that one day down syndrome will be presented with celebration and community from the second that extra chromosome is discovered. 

With that said, Henrik was put on this earth for a reason. We were also made to be his parents for a reason. I truly believe that reason is to advocate for others with down syndrome, educate society, and make the world a better place for people with down syndrome and families involved. If you are a parent who just received a prenatal or at birth diagnosis of down syndrome, I want to be the person who grabs you, hugs you, and tells you it will be okay. I want to be the person who swipes the papers out of your hands and tells you all the things you get to look forward to. I don’t want you to feel like your new world will be “worse off”. I don’t want society to make you feel like you are alone. You are joining the luckiest club there is. You will experience more joy, hugs, kisses, smiles, and laughter than you ever knew was possible. Your world did not change for the “worse”… it just changed to be a little different. Not bad. But different… and you will find that the “different” word you just entered, is just as beautiful as the world you envisioned. I promise. 

-Krista Lynn