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
Dear Gretchen,
I’m so sorry for you, Tom and Julian. I can only imagine what you’re going through, but imagination is almost too much to bear. Tammy and I want to give our love and support to you and Tom and Julian as you go through this terrible time. You’re in our thoughts constantly, and we’re here to help in any way we can. You have our
unconditional support no matter what, and we know that you and Tom need to take care of each other, and digest this shock as a strong, loving pair. I know you’re more than prepared for whatever life throws at you, and you’ll get through this. I hope you had some good meetings today with people who can give you support. Mom and Dad, and the Shermans are standing by to help out at a moment’s notice. They, and Tammy and I, would do anything for you guys. You’re a great sister, and I know you would be a great mom. I know you’ll do what’s right for your baby. Only you and Tom have the ability to make this awful choice, but your family and friends will be right there beside you no matter what comes – no matter how hard. The tears have been free-flowing around here as well, and I know it won’t just magically get easier. Hopefully, as time passes you’ll discover what it is you were meant to do, and be at peace.
We love you,
Graham and 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
Gretchen,
I am deeply touched by what you shared with us. I know it was hard, but thanks for doing that.
Key phases for me are “feeling like a family”, ”letting myself feel love”, and “I am so happy to have a beautiful baby boy and know that everything will be OK”. Those are great and courageous thoughts.
Like Aslan says in the Narnia series, “There is deep magic here.” You are experiencing the raw power of Love, like maybe you haven’t known before. I believe there is very real power in the love we all have for you, for Tom and for Julian and the support you sense from knowing there is this much love around you.
Also, you said “…my heart may never truly fully heal…” which I think needs some comment. It is the wisdom of my 63 years that memories of an emotional injury will never go away, nor should they. Such things contribute mightily to the person you have become and your ability to see and respond to similar hurts in others. In my understanding, you don’t ask for healing in order to forget; what you can expect of healing is that there is no further hurt from that event. You have put something so firmly in the past that it no longer”spoils” the present. That is the power of healing.
And it is the power of Love, once again, that is behind the Healing. In particular, a major part of healing is forgiveness. When someone is able to forgive something you did or said, that thing no longer haunts your present. Likewise when you have been injured by another, true forgiveness will put it all behind you. This sounds trite, but it is no small thing. And in your case, I suspect you will need to forgive yourself for some thoughts you would rather not have had and “trips” you didn’t want to take. It sounds like you are beginning to have the perspective and context that will allow you to do just that. When the reality of all that Love can do and has done for you sinks in, then you will be free to move forward once again and experience the Joy of life, that, if anything, will be sweeter than before, given the deeper person you have become after such a profound experience.
While I hope it is obvious in what I do and say, it is good to say again: ”I love you.” You are one of a very few precious gifts in my life that mean the world to me. I rejoice at this news of your recovery and the signs that there will be Joy in your life once again.
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
lessons.
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!
Gretchen, Tom, Diane, Geoff, Tammy, and Graham,
I am very touched by all of your loving comments on the birth of Julian, and how traumatic things were in the beginning. I just want you to know that I have recently started teaching piano to special needs children, and among them was a Down Syndrome boy. I was so crazy about him, and I saw how much joy music brought into his life. He has taken a break now, but hopefully will come back soon.
These children are indeed very special, and I think that once you get to interact with them, you become so excited at every new thing they can do. Julian will be a challenge for you at times, but at other times he will be a lot of fun. He will probably be more loving than most kids, and I know that you will all experience a lot of joy from him. He may not grow as fast as other kids, but in his own time he will become a wonderful son, with loving parents, grandparents, cousins, aunts and uncles, and friends. The more love he receives from everyone, the more secure his little world will be.
Here is a poem I want to share with you. It is called:
HEAVEN’S VERY SPECIAL CHILD
A meeting was held quite far from earth
It was time again for another birth.
Said the angels to the Lord above
This special child will need much love.
His progress may be very slow
Accomplishment he may not show.
And he’ll require extra care
From the folks he meets down there.
He may not run or laugh or play
His thoughts may seem quite far away.
So many times he will be labeled
Different, helpless, and disabled.
So let’s be careful where he’s sent
We want his life to be content.
Please, Lord find the parents who
Will do a special job for you.
They will not realize right away
The leading role they’re asked to play.
But with this child sent from above
Comes stronger faith and richer love.
And soon they’ll know the privilege given
In caring for their gift from heaven.
Their precious charge, so meek and mild
Is heaven’s very special child.
Edna Massimilla
Gretchen,
I cried when I read your post. You are really being baptized by fire. I love the Narnia quote ‘there is deep magic here’. There really is, Gretchen. Believe it with all your heart. You have a lot to offer this community. I feel fortunate to know you, Tom and Julian.
Love, Melanie
Hi Gretchen,
I came back tonight to this blog posting to reread these amazing letters that you courageously and lovingly chose to share. There are so many powerful thoughts within…and I love that your dad turned to Aslan from Narnia for some it- a perfect source of such wisdom. I continue to believe that God is and will continue blessing many lives through Julian, and your willingness to be vulnerable and open is part of this process.
Take care,
Katrina
Melissa Ross Martin Beautiful letters – thank you for sharing. I hope with each day that your little cutie Julian is feeling better. You all continue to be in my thoughts and prayers.
January 10 at 3:19pm · Like
Beth Prusiecki Gretchen, I think you are so brave! I’ll keep you, Julian, and Tom in my prayers.
January 10 at 10:59pm · Like
Katrina Steinmetz Soltero Thank you for your transparency and willingness to share your vulnerability to life’s trials. I believe God will bless many people through your willingness to share what you have been through. By reading it they will learn they are not alone. Thank you Gretchen.
Oh Gretchen- my throat is aching from crying as I just finished reading your birth story and the other posts linked in it. What a beautiful journey you have been on. I am so honored to have been able to use the stunning photo of your husband and Julian in the montage for Lily’s blog. Knowing now the amazing story behind it, I am just so moved. Thank you so much for your sweet, sweet email. I am amazed at your perseverance in this journey, and at the capacity for the human heart to rally after heartache. Your father’s words were so beautiful- I sense a very wise man behind his letter- you are so blessed.
I also wanted to say that even before reading your story I would stop the slideshow at the photo of Julian to study his perfect and handsome little face…I hope I can meet that beautiful boy some day.
Lots of love to you.
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