Where to begin? I have quite a story and will hold nothing back. This is a bit of a warning because the first part of my story is not very happy, but I think each of us has our own experiences that shape our future and we have to be honest about our feelings.
I can begin with how we found out that Julian has Down syndrome– it wasn’t until Julian was born on June 5, 2010 at 8:03 pm and I held him in my arms the first time right after birth. I looked into his eyes and I just knew – I said to Tom right away, “Oh my god, baby, I think our baby has special needs.” I was so shocked and sad. I started crying intensely right there about 10 seconds after Julian was born. I felt so disconnected from him. I said to Tom, “I know this is supposed to be the happiest moment of my life but I am so sad!” I just kept thinking, “I did not sign up for this” and was so worried about Julian’s future and how this would change our lives forever. I had a very tough time with the news and considered adoption for those first few weeks after Julian was born. I was so fearful. I could not see past the Down syndrome. I struggled to breast feed Julian for those first couple of days because I did not feel a sense of bonding with him. Looking back at those days, it was, and still is – a sense of intense grieving for me. I had hoped my birthing experience would be filled with joy and happy tears, I had imagined a baby without Down syndrome, I had pictured looking into his eyes and holding him and feeling a proud sense of motherhood. I was not feeling those things and was slipping into a deep depression.
I struggled with not only the diagnosis but also had post-partum depression. I had to be hospitalized in a mental hospital a few days after Julian’s birth because of my mental condition. I had two psychotic breaks characterized by delusions and a complete disconnection from reality. My mind disassociated from my body to escape the emotional pain. I was treated in the mental hospital right after birth and then released in mid June. I ended up having to go back to the mental hospital in September 2010 so it has been a long road to recovery.
After I was discharged from the mental hospital the first time, I was still thinking that adoption was the answer. Here I was with a two week old baby and I was so thrown for a loop by what this life circumstance had given me and did not feel at all prepared to care for my baby. I kept thinking back to our detailed ultrasound that didn’t show any signs of Down syndrome. We had been flagged as high risk for Down syndrome (1:75 chance) around month three of our pregnancy, and we scheduled a detailed ultrasound around month four in January 2010 which did not show any soft markers for Down syndrome. The doctors had told us that there were no signs of any heart defect, and no other typical markers of Down syndrome such as an increased nuchal fold, etc. This lowered our risk from 1:75 to 1 :250/300 which was the same risk of causing a miscarriage with an amniocentesis. So, on that day as we sat looking at the screen of our baby on the ultrasound – seeing him moving around with his little arms and legs, rejoicing that we found out it was a boy, and bonding with him throughout those 30 minutes of the ultrasound – Tom and I looked at each other and made a split decision to opt out of the amniocentesis. I personally remember a lot of the reason being that the chances were so slim now of having a baby with Down syndrome and I didn’t want to do anything to accidentally terminate the pregnancy with an amnio. Looking back now Tom and I both wish we had been given more information about our options by the doctors and had given more time to think about if we wanted an amnio or not.
Thankfully when Julian was born the Massachusetts Down Syndrome Congress (MDSC) reached out to us and given us a lot of information about Down syndrome and the coordinator Sarah Cullen even came to visit us in mid June. I cried when she came to visit because I saw how happy she was holding Julian. I wanted to feel that way. Through the MDSC’s First Call program, Sarah also connected us with a woman named Melanie Perkins McLaughlin who has a daughter Gracie with Down syndrome who at that time was 2.5 (I think). We went to visit her and it was a bit of a setback for me emotionally. Gracie was adorable, but all I could think about after the meeting with her was what she couldn’t do – she couldn’t walk yet, she couldn’t talk very well yet. It was becoming very obvious to me how much my fear was grabbing a hold of me – my fear of the unknown, my fear of having a child with Down syndrome, my fear of how Julian would grow up and it was clear that my lack of experience with people with disabilities throughout my life was also holding me back.
Fast forward to today. Over the past 9.5 months of Julian’s life, we have been through a lot together but today I am a lot more optimistic about the future. Before, I didn’t know how to dream about what lay ahead for Julian. Now I do. Before, I was so focused on a lot of the developmental, cognitive and language delays that come along with Down syndrome. Now I know that Julian will reach all of his milestones on his own time and he is more alike than different than his typically developing peers. Now I know that I can be a good parent to Julian, even though it is an unpaved and scary road for me. Now I know that many new parents of children with Down syndrome have to go through an intense grieving process for the baby that they expected and this takes time. Now I know that little Gracie that I met last summer can do so many things that weren’t visible to someone like me who had her eyes half closed. She goes to a pre-school in a typically developing classroom and according to Melanie has two boyfriends that fight over her!
This past weekend I went to the MDSC conference with Julian and it was a great gathering. It was wonderful to see friends old and new. The new parent session focused a lot on how people feel when they first learn the diagnosis, and while listening to this talk I realized that I still struggle with some sadness and grief as I get used to our new life with Julian. But, I am able to put that aside and move forward now. Before I was paralyzed with my emotions and also my biological depression was holding me back. I still have my good days and bad days, but I am so thankful that as I get to know my baby better I have developed a bond with him that is getting stronger with time. I started a new full time job at the end of February and am taking one day at a time with my new work and family life – working toward a positive direction. Meeting others within the Down syndrome community has been so wonderful and in particular reading the stories as part of the National Down Syndrome Congress “My Great Story” campaign has been eye opening about what life is really like with Down syndrome.
Every day life with Julian is different – he has at least one doctor or therapy appointment each week – whether it be physical therapy, check-ups at the Down syndrome clinic, going to the pediatrician, going to the eye or ear doctor, etc. but this is all part of the process. Children with Down syndrome are more prone to eye and ear problems, infections, and other medical issues so we have to make sure Julian is surrounded by a team of doctors who care for him. Early intervention therapy has been proven to help the development of children with Down syndrome so we are actively engaged with that to help him reach milestones such as rolling over (he started doing this at 6 months but needs to do it more), sitting up (he has been doing this since 8 months and is a real pro now!), grabbing and playing with toys (he is doing this too but still needs more practice), proper eating habits (he is doing well here), and eventually crawling and then walking. He will get a speech therapy evaluation at 1 year old.
There are so many things parents take for granted about what their typically developing kids naturally do on their own. It is going to take a lot more effort for Julian to crawl, walk, learn to understand and speak language. I know that Tom and I will do our best to give Julian every opportunity he can to learn and grow and thrive. My hope for Julian is that he lives a full and happy life and that he doesn’t encounter too much of society’s prejudice. I want to protect him from all of the future times he may feel alone or hurt. This is true about how all parents feel about their kids, but I think it is especially true for parents of children with a disability. Society has come a long way in terms of acceptance, but we have a long way to go.
As I reflect today about where I am at in my journey with Julian, I used to be one of those people who didn’t know how to react when I saw someone with a disability. I am getting more used to it, but I still to some extent feel nervous because I don’t have much past experience of how to just ‘be myself’. I think that is a key roadblock in our society – fear of the unknown. It was a huge barrier of mine that I needed to overcome in order to come to true acceptance with Julian. I am continuing to learn about myself as I help Julian learn and grow and see his little personality develop. I love the little guy to pieces and know that love will just continue to expand as we go through life and transition from the unknown to the known together.
Some people have it easier than others when adjusting to life with a child with a disability. I think the road I had to travel was bumper than most but I guess Julian just wanted to make 100% sure that I was up for it. Here’s to our journey! Bring it on.