It has been 21.5 months since we welcomed our first born son Julian Thomas Sherman into this world. My, how time has really flown and it seems like so long ago that we were coping with a surprise Ds diagnosis at birth and the post-partum depression I experienced. Today – so many things have changed. We live a pretty typical life outside of the therapies that Julian gets and a few extra doctor’s appointments here and there – and all of my worst fears about being a parent to a child with special needs – those images that went through my head when Julian was born – well – they just simply distant memories now. The doom and gloom of feeling like my life was going to be SOOO different and that Julian would not go on to do great things – well, I think you know how high my expectations are for my little bookworm/sight reader Julian now.
So today, on World Down Syndrome day (selected because it is 3/21 which represents the extra third copy of the 21st chromosome that causes Down syndrome), I figured I would reflect a bit on the incredible community of the fans that have been built through Julian’s Journey.
What began as a way for me to stay in touch with friends and family during Julian’s open heart surgery, turned into a way for me to communicate openly about my feelings and soon after – a way for me to brag about my baby and his milestones.
I have kept it no secret about the trouble I had a lot of trouble accepting Julian for who he was when he was born. It took me probably about 8 months – which was also veiled also by a severe bout of post-partum depression – to see that Julian was a BABY – MY BABY and not a diagnosis.
So this post is a tribute to the reason I started this blog – my beautiful baby Julian – and to everything he has taught me so far in his short life. And to how he has opened the eyes of many folks who read this blog who might not know anyone with special needs, or anyone who has experienced challenges with mental illness.
So the other night I went through some emails and decided that on 3/21 I would post to celebrate Julian’s life so far and also share some of your letters anonymously as to how this unexpected journey has touched your lives as well as ours. I know I am missing so many posts and emails, these are just a sampling.
To my baby Julian, my gorgeous adorable son and soon to be big brother- thank you for surprising us with your extra chromosome and teaching us that life is not to be taken for granted – that true love prevails over all – that family and friends and truly seeing past differences and celebrating ALL abilities is what it’s all about.
I LOVE YOU MORE THAN YOU WILL KNOW!!!
Here is a recent photo. Also see my new blog header for a few more! Below the photo you can read some of Julian’s Journey fan mail. If you see your post and would prefer that I remove it, please let me know. I removed details, names, etc. and kept everything anonymous just in case.
Julian’s Journey Fan Mail – A Sampling of Some of Your Letters
Gretchen, I just wanted to let you know that I have been thinking of you constantly these last days. Thank you for sharing this journey with your friends old and new. I read your blog post from this morning. Even with tubes and wires, Julian is such a beautiful boy. I look forward to pictures of him awake and in your arms in the coming days.
I know we haven’t spoken in a very very long time, but I just wanted you to know that I find your willingness to share your story and your honesty about your own journey with your husband and your beautiful son just incredible. Maybe this is the true power of facebook – that I now know about something very important going on in your life. Something I never would have otherwise known. And although we probably won’t cross paths anytime soon, I can share with you that I will be thinking of you, sending you strength and love and songs, and sending big sloppy kisses to Julian through the stratosphere. Rock love.
“Your children, are not your children . . .”
I saw your post about Julian breathing on his own. I decided to head to your facebook page and then stumbled upon your blog. I just wanted to commend you on your honesty and let you know that we are thinking about you and your sweet baby boy. I told my Mother about it as well and we were both talking about how Down syndrome isn’t what it used to be…there are so many wonderful programs to help enrich their lives and I’m sure I don’t even know the half of them.
Anyway, I know that its been a long, long time since we have been in touch but I wanted you to know that I’m praying for a speedy recovery for Julian and think he is one lucky guy to have such great parents.
Gretchen – I have been reading your updates and all about your family’s incredible journey. It has been very touching. From one mother to another – I can tell you that nothing is ever as we expect it’s going to be, which can be daunting and really keeps us on our toes.
The anxiety was over figuring out how to balance work and motherhood, how to be the “perfect mom”, how to do it the way I thought I “should”…
Anyway, motherhood is not easy or anything like what we imagine, but it does get better and better as you are probably seeing. And our kids will always find new ways to touch our hearts, make us more generous, and teach us a better way, more pure way to look at the world and the people in it.
You are very blessed, as is your son to have you and Tom as his parents. He sounds like such a strong and loving boy – and just know that you are a big part of why he is so special, strong and sweet.
Make sure you give yourself enough credit as a major reason he’s so incredible — we never really pat ourselves on the back as moms But you and Tom sound like you make a great team, and will take one day at a time to face any challenges ahead.
Good luck – and thanks for sharing your experiences and feelings. So much of what we feel and fear in motherhood is universal and I’m so impressed at your honesty at each stage of the way.
The girls still ask to look at baby Julian on the computer. He is one adorable little kid. Keep up the blogging, and definitely keep in touch.
I wanted to thank you for sharing your story about Julian. I must confess I have been ‘stalking’ your blog since his surgery in January. I admire your truthfulness and your desire to share both yours and Julian’s story. Although it sounds like every day presents it own set of eye opening experiences and challenges, you sound like you are well on your way to providing Julian with all the love in the world. I look forward to ‘watching’ your little man grow!
I just read your blog post and was incredibly touched by your story. My wife’s first cousin has Down Syndrome, and her uncle, Tom O’Neill, just recently stepped down as president of NDSS. We have been to several NDSS events in NYC from the walks to the luncheons to the large benefits and it seems like an incredible organization. It seems like you, your husband, and your son are in good hands getting all of the available services – but please let me know if I could put you in touch with Tom and/or if he could help you out at all with getting information from NDSS.
This is the first time I’ve seen your posts and blog. You have an extraordinary gift to make your experience so tangible and relatable. Julian is beautiful, and I am in awe of your strength.
First of all, your writing is just beautiful! You write as if you are an author and this is truly your story! Julian is such an adorable little boy. I can’t even begin to imagine how hard and scary this is for you and I admire you and Tom for your courage, devotion and honesty. Be well and I look forward to reading more of the story of Julian’s life!
Just wanted to let you know I’ve been thinking of you guys throughout Julian’s journey. I’m so happy to see how well he’s doing! Your’s and Tom’s blogs have been great. You’re amazing parents. Give Julian a hug for me.
Hi Gretchen, I just wanted to write you a personal note of kudos of documenting your son’s journey. My sister’s youngest son was born with Down syndrome. My sister chose not to get testing done during her pregnancy and when he was born, he showed some signs of having Down syndrome. As he was born so close to Christmas, we had to wait several days to confirm if the screening test was positive. Over the next several days, we all kept staring at him to look for certain features to try and I remember feeling so sad that I was wishing him to be something he wasn’t if he did in fact have Down syndrome and just loving him for who he is.
Although the news was stunning and hard, life has taken on such a new meaning that we have him in our lives. He is now 4 years old and is doing great! He utilized a birth to 3 program and has done phenomenally well. If you haven’t investigated yet, I am sure MA has a program too – they come to your house weekly and have one-on-one sessions with your child. I have been to several of his sessions over the years and they are phenomenal. He is in pre-school now and is a very active toddler!!
In reading your last blog, ‘Welcome to Holland’ I vividly remember reading that poem soon after his birth and it is so true.
I wish you and your family the best and I am so happy to hear that your son’s surgery and recovery have gone so well.
I just was reading through part of your blog and I was moved by your honesty and all out vulnerability. This quality that you displayed is so absent in our world. I pray that so many people are touched by this trait as you continue to process and grow through the experience you have found yourself on.
Was just trolling facebook (as one does), and saw your page.
I just read your blog entry on Julian and how you have been dealing with post-natal depression and Downs Syndrome. It is a very powerful entry and testament to your strength. You are an amazing mother and by the looks of it Julian is a very strong boy, and a cutie at that!!!
All our journeys of motherhood are different, with so many challenges. I am so grateful to you for sharing your story, and for continuing to share!
All the best to you, and continuing to support you on this journey of motherhood.
It’s been such a long time since I’ve seen you or since we’ve spoke! I hope that all is well and that your new job is fabulous! I am not super-great at looking extensive through the pages of my facebook friends, so I apologize for not sending this message to you sooner. I saw that you had a little boy last summer and it was only today that I learned that he has Up Syndrome! I am a special education teacher of students with intellectual disabilities and all of my guys who have Down Syndrome we say that they have Up Syndrome-it’s just such a happier word!
I teach students ages 14-18 and work with their families on transitioning them into adulthood. I also present around the district (I teach in East Hartford) on inclusion and working with students with intellectual disabilities. I wanted to share with you something that was shared with me when I began working with individuals with disabilities about 15 years ago. I use it at the beginning of all of my presentations and every time that I read it I find that it touches me in yet another way. (She shared with me the Welcome to Holland poem)
Hi Gretchen! Happy belated first mothers day to you. Did it feel like ‘mothers day’ to honor you? Or for your mom? Because I still feel like it’s to celebrate my mom…. It’s still weird to think of myself as ‘a mom.’ all in good time, I suppose!
I wanted to write to you and let you know that I think you have incredible strength and courage to share all of your feelings from these past few months online. I can only image what you, your husband and your family have been though. You started posting Julian’s story right around the time my girls came home from the NICU after being in the hospital for 5.5 weeks. You gave me so much strength and hope…. I especially love the welcome to holland post and I have shared that analogy with many people.
Once we all decide to get pregnant, our lives are no longer under our own control (hard for over-achievers to get used to!). You’ve shown me, though, that you can still have control over the things within your reach, like one’s reaction to the situation one is in. All we can do is take one day at a time and enjoy these moments while they last!
After reading your journey I was reminded of the Pierce family of Simon Pierce by dartmouth. One of their sons was an Olympic snowboarder and got into a huge accident – they thought he wouldn’t recover. Well he has, mostly, and in telling of his recovery, the Today Show covered his family and showed he has several brothers – the (I think) oldest having Down syndrome. It was beautiful to watch the family together because you could tell they all learned from each other and their happy bond made them so memorable to me. The brothers all watch out for each other and you could see that protectiveness went both ways. Anyway, I thought I would mention it to you because of the dartmouth connection and because I never knew what a special family they are.
Please know that you are admired for your strength.
I have been following your blog and it sounds like Julian is doing well. I wanted to drop you a line and ask you if you mind if I pass your blog onto a friend of mine. She recently welcomed a daughter who was diagnosed with down syndrome at birth. They had no indication prior to her birth. I thought your blog might be helpful/comforting to her. Anyways – please let me know if that is ok. I hope you and your family have a very happy holiday.
Saw your blog yesterday through a friends post. It truly touched me. I have a 17 mos old and experienced some degree of post partum depression. It’s very brave of you to tell your story. Thanks!
I just had to tell you how beautiful your family is, and how absolutely handsome and adorable your son is! I so enjoyed looking at all your pictures…. the photography is AMAZING and really captures the moment. You are so blessed. I’m on the other side of the coast, we live in Hermosa Beach (in Los Angeles), and also a fellow momma to an “extra blessed” son. Our first born was born with Down syndrome, and I can’t believe he’ll be 6 years old next week!!! He is our pride and joy, and the love of my life! We also have identical twin girls that are 4 years old… so we have an eclectic little crew! Anyhow just wanted to say hello.
I wanted to pass you a quick note. I admit I havent been to your Facebook page in such a long time, but I came by and started reading some of your blog posts. I have to say how moving they were to me. So much. I cried (or, at least as much as I could get away with sitting at my office desk), and I laughed a little bit as well (the part about getting pregnant was funny!).
Being a parent myself and with two young kids I can relate to how heartwrenching kid-related decisions and the whole process can be. About a year ago we had a major scare with our oldest, and she was in the hospital and it was perhaps one of the hardest periods of my life. However, I cannot begin to imagine those feelings for you.
The one thing I would say is I am so glad you decided to stay the course, as it were, and how well your beautiful son is doing. Im sure, must have been so so so difficult. Your blog posts were some of the bests I have ever read, and they really moved me a lot.
I just wanted to say that. Sorta random I know, but I just finished reading the birth story and I was blown away.
Hope you are doing well…
Gretchen, I don’t know what yo say other than you’re an inspiration. Thank you for sharing as much as you’ve shared about the past months (and week) with Julian.
___________________After I read your blog, I wanted to contact you to thank you for being so open and honest.First of all, I have to tell you how stunning your son is. He is a perfect blend of handsome and adorable! I think I fell in love with him when I watched the video of his first steps (for some reason, this video also made me cry)! I was so happy to read that his heart surgery went well. I cannot even begin to wrap my mind around how scary that must have been for you and your family. I also want to congratulate you on your current pregnancy, I hope you’re feeling well.My daughter was born around the same time as your son. Maybe there was something in the water that day, because like you, I came down with postpartum depression. I too had a very severe case. I never came across another mother who had experienced P.P.D. as severely as I did. I had a lot of friends who would say things like, “Oh, I had a small case of the blues for a few weeks after my baby was born.” So when I read your blog, it made me want to contact you. You were so openly and refreshingly honest about your experience, and I wanted to let you know that I appreciate your bravery.________________________
So great to hear from you and to hear that Julian is out of ICU — that’s a great milestone. It is really a change, though, to go from such intense care to being out on the floors. But that is a very, very good step. I just shared some of your photos with my wife and we agreed that it’s like walking down memory lane. From the ICU tubes to the surgical waiting room to the namebadges, it’s all so familiar. I know it seems overwhelming now, but you’ll get there. It looks like you have some great support from family and friends, and that’s key. What we found is that, with our son, our family was even more supportive than we thought they’d be. Having a child with special needs, we wondered how they’d react, and they treated him just like we did — like any other child. In fact, he’s kind of taken over as the favorite in the family, with everyone celebrating all of his milestones along with us!
Some of the best advice we got while in the hospital was not to look at the big picture. It can be overwhelming to start to think about what life will be like with a child with Down syndrome. There are lots of things to consider. But try not to go there. We just focused (and are still focusing!) on one step at a time and one milestone at a time. And that has worked well for us.
As you can tell by my blabbing on and on, the Down syndrome community is close knit. When I hear of someone else who has a child with Down syndrome, I just want to reach out and say what a wonderful blessing it is. Our son has taught us lessons and shown us things that we never would have dreamed of before. He really has made us better people and a closer family. I know that thinking the diagnosis is a blessing may not be your first reaction (which is very normal), but with time I know that you will come to see that it is. We wouldn’t trade a second of what we went through!
Anyway, I’m sure you’re tired reading, so I’ll wrap up. We would love to connect with you someday, once this chapter in your life has ended. It’d be great for our kids to meet. And I’d love to talk further about our experiences — since they seem so similar.
Hi Gretchen. I just wanted to send an email to say hi. I stumbled onto your blog while I was searching for Dr. Skotko’s response to GQ. Sounds like you’re doing really well and Julian is too. That’s so good to hear. I love his pictures – what a cutie. It was so neat to read what he’s doing now. It sounds like he and Jilli are moving along at the same pace. It’s amazing when what she’s been working on has finally clicked – as a parent, you can’t be prouder.
Hope all is well and you’re enjoying the summer.
Thank you SO very much for sharing this story. Your little Julian is just so adorable. It looks and sounds like he is just doing spectacular!!! I’m touched to hear of your journey and the joy you now experience.
My little girl will turn 4 next week – I just cannot believe how fast the time has gone by. We did not know of her diagnosis prenatally either and I remember the feelings like it was yesterday. I am also expecting our 3rd child and its funny how having that first experience makes the anticipation so different with my following babes. My husband and I volunteer with the First Call Program and it has been so rewarding….you will see!
Thanks again for sharing and Happy Birthday to Julian!!!
As I have said from the moment I met you and Tom (and Julian), I so love your honesty.You have been so honest with yourself and Tom, and those around you, which is so very healthy. You have had an amazing journey, and the fact that you are willing to share it so openly, and so freely, is such a gift.
I hadn’t yet read your birth story writing. It is really beautiful and courageous, I appreciate your words so much (especially as I am not able to write) Thank you for writing it. I know many people will benefit, and not just those with children (never mind children who have D.S.!)
I could really relate to your story. It was so beautifully written and straight from the heart. Our son is now 35. He did not have any heart problems. Pictures say a thousand words. He has lived in his own house next door for 13 years now, works 20 hours a week, needs minimum support, flies alone to visit two of his brothers in California since he was 18. He serves the 7:00 a.m. Mass every Sunday. He has the world by the tail. Is is 5 Special Olympic sports and has so many gold and silver medals. Nominated for world games. Good luck with Julian. Keep in touch.
Wow!!! Thanks so much for sharing your deepest emotions. Some of us can’t even put them to words, but you seem to have done so very eloquently. You should write a book! You seem to have allowed yourself to heal, although I am sure it is an ongoing process.