When I was thinking about beginning to write Julian’s birth story last night, a bunch of memories from the past 7 months flooded into my brain. We did not know prenatally that Julian had Down syndrome, so it was quite a shock to both Tom and me. I fell into a deep depression after his birth which required two hospital stays at McLean mental hospital – one in June and the other in September. For the first couple of days after Julian was born we just cried and cried. I know now that was a grieving process we had to go through because we were mourning the loss of a typically developing child we had expected. We even considered adoption for the first couple of days but then that desire passed as we learned to love Julian for everything he is. We kept friends and family informed of our journey with Julian via email and I thought I’d share some of those letters:
June 5, 2010 – Julian was born at 8:03 pm
June 7, 2010 – Letter from Gretchen to a friend, written from Mt Auburn hospital
tom and i are having a very tough time right now. we had a very hard labor and birthing experience and had a baby with down syndrome. i knew immediately when i looked at him and held him for the first time after birthing him. both of us are having severe mental issues coping and going through our own type of mourning because we had that screening at 18 weeks and in the end decided to opt out of the amnio test because everything they found on the ultrasound was reassuring and equaled the risk of an accidental miscarriage. the chances were so very slim of having a baby with down syndrome. but we had talked then about what we would do if we did find out early and we would have terminated so this makes the situation especially hard to cope. we are considering adoption and it is a lot ot handle right now. we are trying to give our best to the baby – i am attempting breast feeding him but it is really hard. holding him is also really hard because it is difficult to let yourself bond with a baby when you might not be the best parents in the end to be able to continue to provide him with the type of constant love and care and attention he deserves. it is tough to layer these emotions on top of just giving birth and recovering and also my own mental instability right now. but they have a good support system here for us at mount auburn hospital and wonderful nurses and doctors and psychiatrists. it is a beautiful view from the room. i wanted to let you know about this as soon as I could muster up the strength but i realize I am not yet up for a phone call. i am telling family and friends when I/we are able. the best way to support us right now would be to keep us in your thoughts, send positive energy.
June 7, 2010 – Letter from my brother Graham and his wife Tammy
July 6, 2010 – Letter from Gretchen to immediate close friends and relatives
I wanted to give you an update about where Tom and I are at in terms of our journey with Julian.
the latest is that I am entering another stage of the really intense emotional process tom and I are going thorugh around the birth of julian. when he was first born, as you know both of us were considering adoption and it was difficult to bond (for me especially) with julian. I shut myself off emotionally from him in order to protect myself. I was so focused on adoption but in hindsight I think I was seeking some sort of relief from the pain of all of the intense emotions. I thought adoption would solve things.
a week ago, tom and I had a really intense fight about this. He had bonded with julian and adoption was not something he wanted anymore – but I had not let myself really be Julian’s mom. I really thought that someone else would be better suited to raise him. But Tom opened my eyes to how much I had shut myself off from julian. It was really tough to hear some of the harsh words from my husband during that argument but he really did wake me up to reality.
Since then, I have let myself feel emotions and am finally feeling like a family with Tom and Julian. it is so great to feel again. I am letting myself feel love. The weekend on the Cape was wonderful with Julian and extended family – so great to have both sets of his grandparents were down there together so he was really doted on.
This doesn’t make the sadness I feel go away – but as tom said it best the other night when I was crying into his arms – right now the not so great memories outweigh the good but as we create more joyous memories eventually those will overcome.
In my bright moments, I am not sad though- I am so happy to have a beautiful baby boy and know that everything will be Ok.
While my heart may never truly fully heal but this is part of the experience we have gone through with Julian and I know that he will fill our hearts with a thousand times the joy to patch over the initial shock we felt at his birth.
There is a book I am reading of essays written by mothers of children with down syndrome. The back cover says “Having a baby with down syndrome is not something most parents would willingly choose. Yet many who travel this path discover rich, unexpected rewards along the way. Sixty three mothers describe the gifts of respect, strength, delight, perspective, and love which their child with down syndrome has brought into their lives.”
So while I am crying my eyes out as I write this note, I know that there is a light at the end of the tunnel and Juilan deserves the best from his mommy and daddy.
July 7, 2010 – Letter from my dad
July 7, 2010 – My response to my dad
Hi Dad –
Thank you so much for your email. I shared it with Tom and he commented on how really heartfelt and meaningful your words are to us.
Your comments about healing made me think of how you mentioned you hadn’t cried this hard since your dad died when we were together for the first time following Julian’s birth.
At the time, I knew Tom and I were in mourning for the baby we had expected and planned for. Those first few days at the hospital were the hardest I have cried in my entire life. However, I did not know how heavy or how long a mourning process is, really. And it is only recently that I have come to realize that I need to take as much time as I need and to be patient with myself.
I have also learned to be forgiving of myself. You are very perceptive in realizing that one of the hardest things to face is how sad I was at Julian’s birth, and how I reacted when I first saw him. A birth is “supposed to be” the most joyous time of your life…and Julian’s birth was quite the opposite for both Tom and I – and our extended family. Eventually it won’t be as raw but right now, Julian’s birth is still a very traumatic experience.
Therapy is helping tremendously as is talking with Tom and other family members/friends. I am thinking about doing a type of therapy I needed to help heal from that very scary car accident I had where I spun out on the highway. Essentialy it helps the brain to “re-set”, in a way. It is called “EMDR” – see description here.
There is so much reading material and support systems about raising a child with Down syndrome out there – and much of it makes me cry tears of happiness and hope about our future. However, it is just a very hard thing to know that your child will not start out having the same “baseline” to learn and grow as a typical child – but this does not mean their life will not be full and fruitful.
I have so much to learn about Down syndrome and so many resources to read and parents with whom to connect. You and mom are also going to be a huge part of Julian’s life so I will try to send along as many items to read and links as possible.
Today I spoke with Angela, the coordinator of the Down syndrome program at Children’s Hospital in Boston. We have an appointment scheduled with the program next Tuesday the 13th to bring Julian in to meet with their team of experts. Angela has a video she is sending Tom and I about sign language. One of Tom and I’s biggest priorities is to learn sign language (and I know you can help a lot in this effort since your grandparents were deaf). There are also lots of resources available on the program’s website that I encourage you to peruse.
This Friday, we start early intervention with the Mystic Valley early intervention center. A team comes to meet with us at our home. I will share details from the appointment when I can.
I really enjoy these back and forth emails with you, Dad, and I hope we can keep them going. It is therapeutic for me and also for you, I think. I suspect that you and I both reacted in a similar fashion to the birth of Julian – by protecting our own emotions, but we each coped in our own individual way.
July 27, 2010 – Letter to extended friends and family
Tom and I wanted to let you know directly about something going on in our
lives – it turns out that parenthood has been a bit of an unexpected
rollercoaster so far.
Julian was diagnosed with Down syndrome at birth – which was quite a
surprise. It has been an adjustment but thankfully we have connected with a
number of support resources for families of children with Down syndrome to
help us pave the way to our new path of parenthood.
We are going through a process of discovery while at the same time enjoying
life with little Julian! Julian is an active guy with a very chill and sweet
personality. He loves to look around when he is alert and kick, kick, kick
on his playmat! He is 7 and a half weeks old now and an awesome sleeper -
he sleeps about 9 to 10 hours a night. He has started to coo and smile a
bit which is really really fun.
While Julian might have some developmental delays in language (reading,
talking) and motor skills (crawling, walking, running), he will hit all of
these milestones on his own time. Having a child with special needs will
change our life forever and in many ways for the better. It slows the pace
of your life down, makes you appreciate the little things and become more
patient. We will learn a lot more along the way and there are things that
Julian will teach us about life that will be priceless and important life
Personally, I have also had postpartum depression issues and still have my
good, OK and bad days. It has been very very hard and we are thankful to be
surrounded by your support and love. Right now family and Julian are the
primary focus and also getting me to a better place mentally.
We wanted to let you know personally about what we are going through.
Sometimes people don’t know how to behave or what to say or do around us -
what is best is to just be yourself and welcome Julian into the world with
love and joy and happiness!