Alice’s Story- A Down Syndrome Diagnosis Can Make a Family Stronger

It feels like such a weight on a family when the diagnosis is given…but then…then you start moving forward, one step at a time.  What first seemed so foreign and scary settles down a bit and you realize where your true strength comes from.  I have heard it from other moms too, Alice’s family is no different.  A Down syndrome diagnosis can make a family stronger.

When Alice was a few hours old, a doctor told us that Alice had a few markers consistent with Down syndrome.  A few days later, the DS diagnosis was confirmed with blood work.

The way it was presented to us was awful.  When Alice was a few hours old, a doctor came in to evaluate her and then turned to me and Tim and said, “Hi guys.  I just want to let you know that your baby has some markers that are consistent with Down syndrome.”  The doctor was extremely cold and not at all sympathetic.

When Alice was first born, we didn’t see DS at all.  She actually looked a lot like Lucy had looked at birth.  And then when the doctor told me she likely had Down syndrome, that’s ALL I could see!  That was so tough for me.  After a few weeks, though, I would look at her and not see her DS at all.  All I would see in her was her big sister!  Today, I actually forget she has Down syndrome.  Other people might look at her and know right away that she had DS.  Or maybe not.  I really don’t know.  But I don’t see it at all anymore.

Total and complete shock.  I thought this couldn’t be happening.  I didn’t know anything about Down syndrome.  I had never met anyone with Down syndrome ever.  I kept praying over and over and over that Alice didn’t have it.  Because I had no knowledge of DS at the time, I thought it was the worst thing in the world.  I kept crying and crying and saying, “This is the worst thing that could happen.”

My impression was that Alice would never walk, talk or function normally.  I thought she would basically be a vegetable.  I feared for her life that I thought would be awful.  I feared for my other daughter Lucy because I thought it would be horrible for her to have a little sister who couldn’t do anything.  I feared for my marriage because I thought we would struggle with having to take care of Alice our entire lives.  My fears went on and on and on.  I just cried and cried and cried and prayed it wasn’t really happening.

My husband and I talk about this all the time.  We chose not to do any testing when I was pregnant because nothing would have prevented us from having our baby.  We are pro-life and we would never abort, no matter what.  But when we had Alice and she was diagnosed with Down syndrome, we thought, “Should we have had the testing done just so we could have prepared ourselves?”  When we found out shortly after Alice’s birth, we had a few days and weeks of grieving and depression. But after that, we buckled up and moved forward because we had to.  Our baby was here and she was ours and she was perfectly made in God’s image.  If we would have found out prenatally, I know I would have been so stressed out the entire pregnancy.  I would have had months and months of grieving and depression, rather than just a few days or weeks.  I don’t think there is any “right” or “wrong” way to go about it.  Whether or not a couple chooses to do prenatal screening is a personal choice for each couple.  We want to have more kids, and we always talk about whether or not we will do the testing next time.  We still don’t know what we will choose.  There are pros and cons to each.

I didn’t know anyone with DS and I don’t even think I had ever seen anyone with DS!  That led to my belief when Alice was born that I was totally alone.  I thought I would be raising her with no guidebooks because, in my mind at the time, DS was so rare!  (I had NO idea how common it actually is.)

I felt shame at first.  I felt like I had produced an “imperfect” baby.  I worried about people’s reactions and I worried that they would feel bad for me.  I didn’t want anyone to feel bad for me or to give a response of “I’m sorry.”  I just wanted people to congratulate me because, at the end of the day, DS or not, I had just had a very much wanted baby.

I worried so much about everyone else.  I worried especially for my other daughter.  Once I stopped worrying about other people because I realized they were just fine, I began to accept her DS diagnosis.

We found out shortly after Alice’s birth that all of her health tests (hearing screen, heart scan, etc.) came back totally normal.  Today, at 7 months old, she still has zero health issues.

My pregnancy with Lucy was so rough!  I had nausea and vomiting almost the whole time.  Horrible migraines.  Backache like you would not believe.  Swollen legs and ankles.  I also felt Lucy move so much from 21 weeks on.  She would keep me up at night with all of her acrobatics.  My pregnancy with Alice, on the other hand, was pretty easy.  I had a little nausea at the beginning (I threw up a few times), but nothing too bad.  I also had heartburn, which I hadn’t experienced with Lucy.  I also noticed that when I was pregnant with Alice, I didn’t feel her move nearly as much as I had with Lucy.  I asked my doctor about that, and she said it was because the placenta was in the front (and it had been in the back with Lucy).  I now realize that this was actually because babies with DS typically don’t move as much in the womb because they have low muscle tone.

The birth experience was different this time around.  I had a vaginal birth with my first daughter, Lucy.  I had to be induced because she was so late (41 weeks) and the labor lasted 25 hours.  With Alice, my doctor discovered when I was 36 weeks pregnant that she was breech (feet first).  She told me that if Alice didn’t turn by my due date, I would have to have a C-section.  One week before my due date, I went into labor on my own and had to have a quick C-section because the doctors did not want her to get into the birth canal while she was breech.  The C-section itself was super quick and easy.

When Alice was first born, we were both so happy that we had another beautiful little girl!  When the doctors told us that they thought she had Down syndrome, my husband Tim was just as shocked as I was.  This wasn’t even a thought in our heads.  But after a few days, he came around to the idea… much quicker than I did, that’s for sure.  He started reading all about Down syndrome and discovered that it wasn’t as scary as we thought.  His courage and strength in those first few days and weeks will always stay with me.  I struggled with it much longer than he did.  I remember one day very early on I was having such a hard day.  I was still in shock and I was crying and felt miserable.  He looked at me and said, “I’ll be here with you every step of the way.”  My husband is not a mushy-gushy romantic person like that, but he surely came through when I needed him the most.  I’ll never ever forget that.  I really don’t know how I would have gotten through the diagnosis without him.  I had been so so so worried that the diagnosis would negatively affect our marriage.  But it didn’t.  It actually made us stronger because we had to lean on each other.  Today, I know that we are stronger than we were before Alice.  We have seen sides of each other that we didn’t know existed before.

My first few days after Alice’s diagnosis were filled with some of the darkest thoughts and feelings I have ever had.  I was in a state of shock and denial.  I did not feel connected to my new baby.  It was almost like I didn’t even want to feel connected to her because “this was not the child I was supposed to have.”  I felt like I was cheated out of the experience I expected.  I didn’t feel like this was my child.  We weren’t the people who were supposed to have a child with special needs.  You always hear about special ed teachers having kids with special needs, and that seems to make sense.  But I used to work in journalism and Tim works in IT!  We weren’t qualified for this!  That’s what I thought.  We had no knowledge of Down syndrome, and I thought God had simply chosen the wrong family for this job.  I desperately prayed for a way out.

A few weeks after Alice was born is when I truly began to embrace her diagnosis.  This was because I began talking to other moms who had children with Down syndrome.  They told me about how normal their lives are and how normal their kids with DS are.  This gave me such an enormous sense of relief.  They said their kids went to typical school, and I just had no idea that was even a possibility.  My husband and I had both gone to private schools our whole lives, and we did not have anyone at school who was in any way “different.”  So, to hear that kids with DS went to typical schools gave me such peace and comfort.  I also remember talking to a friend of a friend named Nicole who has a daughter with DS.  She told me that she too went through the stages of grief when her daughter was born.  However, after talking to a minister, she realized that God would not give her this child if He didn’t think she would raise her in the best possible way.  That really changed things for me.  I had always been close with God, but I realized I had almost forgotten about Him since Alice was born.  I figured He had forgotten about me too.  But after hearing Nicole’s take on the situation, I realized that God had been there all along and that He had given me Alice because He knew I would give her the best life possible.  It was then that I realized it was actually a tremendous blessing to have a child with DS… not a burden or a curse… but a unique blessing that I was so very privileged to receive.

Our family and friends were so amazing.  I honestly didn’t know how people would react.  We don’t have anyone in our families with Down syndrome, so they weren’t used to getting this news.  But our parents came to us with immediate acceptance and pure love for Alice.  I will never ever ever forget that.

I sometimes think about what my life would be like now if Alice had been born without Down syndrome.  And I’m just so happy she was born with Down syndrome.  I realize I sound crazy, but it’s true.  And I know that all DS mamas would agree with me.  The way you look at life changes when you have a child with Down syndrome.  You begin to notice things you didn’t before.  Your priorities shift.  You begin to notice all kinds of disabilities and really want to know those people with the disabilities.  Your relationships deepen.  Your love for your spouse grows a ton.  Your love for your kids makes your heart explode.  And you thank God every single day for handpicking you for this wonderful, beautiful, unique journey.  I would have never nominated myself for this life, but I’m so very grateful that God had the infinite wisdom to do so. Alice is now 7 months old.

Ann is a 33-year-old girl who lives  in Ohio with her husband Tim and their two daughters: Lucy (3) and Alice (7 months with Down syndrome).  Ann was a journalist until she had her kids, and now she’s a stay-at-home mom.  She still does a lot of writing as a freelancer, and she also babysits a 3-year-old boy a few days a week.  Her number one passion is being a mom!  You can follow her on Instagram @wonderlandmommyblog and check out her blog here.

Trevor’s Story- A Birth Story of Down Syndrome and Love

There are so many stories of moms who first laid eyes on their newborns and saw nothing short of angelic perfection.  Later, when they learned of their child’s diagnosis of Down Syndrome they often say they are surprised they didn’t see it right away. Love can blind us to the nuances and physical traits indicative of Down Syndrome.  That is exactly the case with Trevor and a birth story of Down Syndrome and Love.

Trevor was born on December 14, 2016 at 5:51 a.m. after only four pushes, and we held our breaths, waiting for his first cry. Our little boy was perfect; he breastfed immediately, and since his vitals were fine, he was able to spend an hour doing skin-to-skin before going back to the nursery. I remember looking at him and knowing immediately whose mouth and nose he had. Down syndrome was never on our radar, so when I saw his eyes, it didn’t hit me right away. I just kept thinking to myself whose eyes does he have? I think back now and can’t believe I didn’t see it, but he was our baby boy, and love can make such nuances irrelevant. (Honestly, I still don’t see Down syndrome when I look at Trevor. I see my sweet handsome boy.)

After spending an hour with Trevor, he was taken to the nursery for observation. Jeffrey went home to get some rest and drop Howard off with a friend. I was settled in the room and went to visit our sweet boy. The nurses never said anything about the possibility of Trevor having Ds, for which I will always be thankful, for it is best for the diagnosis to be delivered by your OB or pediatrician, so questions and concerns can be properly addressed. Later, I was in my room waiting for breakfast when Trevor’s pediatrician walked in. It was a few hours after giving birth, and I didn’t think twice about him walking in with a couple nurses. He asked if Jeffrey was around, and I explained he was home. He said he would come back later, but I told him I could tell something was wrong and wanted to know right then. I now know that, ideally, a mother should not be alone when she receives the diagnosis. This was not the doctor’s fault, of course, since he didn’t know before that I was alone, but I wasn’t letting him leave. He asked if there were any concerns during my prenatal checkups and explained Trevor had markers for Ds.

I immediately felt the world crashing down on top of me. I started rambling off comments like “we can’t have any more kids; we will never be able to leave him alone and take vacations; he will always live with us.” I’m so thankful for a pediatrician who is positive. He explained to not worry about having more kids until we talk to a geneticist (who could tell us our odds of having another child with Ds) and that Trevor would be able to achieve everything a typical child could achieve. He will be able to get a job, go to school, and even live on his own. After he left, I spent the next couple hours praying and crying. My biggest worry in that moment was how Jeffrey would feel.

After the pediatrician left I went to the nursery to see my Trevor. I was now able to see all the markers the doctor mentioned. I held my precious boy and cried for his future, his brother, and our family. I prayed Jeffrey would not be angry. I worried he would blame me and not love us. I have the most loving and caring husband, but I worried he wouldn’t want a child with Ds. We never opted for genetic testing because we knew it would not make a difference. We also never thought this would happen to us. One of the nurses told me to call Jeffrey. She knew it would all be okay once I told him. I now believe God was encouraging her to nudge me. I was a mess and was praying constantly for peace. I ended up calling Jeffrey and told him to come back early. I knew he was tired, but I needed him there.

As soon as he walked in my room, I started crying again and told him Trevor most likely had Ds. He looked me straight in my eyes and said, “Okay. Everything will be all right.” Once he said that I felt a wave of peace come over me that could only come from above. I thank God daily for answering that prayer and giving me a husband who would be strong when I was weak. We went together to the nursery and spent the next few hours with Trevor discussing how we would tell our family and friends. Our nurse came over and asked how I was feeling. I told her much better, and she just smiled and said she knew having Jeffrey there would make everything better and was what I needed.

The next few days were filled with prayer and waiting. We waited to finally bring Trevor home and start our life as a family of four. He was thankfully only in the nursery for three days, but it felt like eternity. I pray for other families who still have babies in the NICU waiting for them to be healthy enough to go home. We spent the first couple days calling all our family to tell them about Trevor. We never wanted his diagnosis to define him, but we knew we wanted to address it first instead of having people discuss it without our involvement. We stayed as positive as possible in hopes to not hear “I’m sorry” during every phone call. Everyone had a positive outlook and were very supportive. We are so blessed with an amazing extended family.

Looking back I’m so thankful I was alone when I received Trevor’s diagnosis. I don’t like to appear weak to others and this gave me the opportunity to grieve the child I thought I was supposed to have. It is very common to go through the five stages of grief after you receive a Ds (or any disability) diagnosis. I was first in denial hoping the blood test would come back negative. I thought maybe our doctor was wrong. Once I visited Trevor, I knew he wasn’t wrong, and I became angry. I was angry with God and questioned why he would do this to our family. I then became sad and didn’t know what this meant for Trevor or our family. That is when Jeffrey arrived, and I quickly moved on to acceptance. If I was surrounded by family and friends I would not have been able to process these feelings the way I needed.

Just because I have accepted Trevor’s diagnosis doesn’t mean there aren’t days when the diagnosis is hard. I mainly struggle with Trevor’s future and what will happen when he is in school. Unfortunately, kids are mean, and I pray he will be surrounded by inclusive children. I hear too many stories of our kids being bullied and that’s what keeps me up at night.

You might wonder if I would change Trevor if I could. I hate the health problems that come along with Ds, but I would never change him. I believe there are amazing traits within that 3rd copy of the 21st chromosome, and I would not want to live our life without them. I thank God daily for answering my prayer for a healthy pregnancy even if it’s not exactly what I thought a healthy pregnancy meant at that time. I would not change a thing except for the feelings I had in the beginning.

Kristin is a 35 yr old SAHM to two boys, Howard and Trevor. She has been married to her husband, Jeffrey, for 5 years and they currently reside in Wichita Falls, TX. Kristin always wanted to be a mom and has become passionate about advocating for her son, Trevor, who has Down syndrome follow their story on Instagram @kristincrumb