A few months ago I received a letter from a woman named Linda who just found out that her sister’s new baby has down syndrome. I receive a few of these letters occasionally from confused people that don’t know where to turn and have more questions than answers.
The fact that I run this website makes some people think that in some way I have more answers and understanding than my peer group who also have children and family who have had this shared experience. I do not.
The support groups that work in your respective communities are infinitely more qualified than I to answer your questions and how to best provide advice and services to help your child achieve all they can be.
What I can speak to is the raw emotion that came over me when I found out that my son would have Down Syndrome. This was the day that we all have shared in the past; the day that we all asked ourselves, “Why me?”
Below is the exchange between me and Linda (names changed of course).
Mar 28, 2009
Hello –
My sister’s baby was just born with down syndrome and I need some guidance on how I can be the best I can for my sister. I don’t understand anything about ds and am looking for something to better understand and offer information to my sister that is beneficial.
I feel selfish because I am heart broken. Not because my nephew has down syndrome, but because this world is a cruel place and I don’t want anyone to hurt him. We may not always be around to protect him. Will he be able to live a normal life like my little girl. I love him with everything I have, all I want to do is be the best aunt and make him the best little boy he can be.
please help,
Linda
Mar 28, 2009
HI Linda,
Wow…you are an amazing Sister and Aunt. What is your nephew’s name? There are typically a bunch of platitudes that people say when they find out someone has just had a baby with Down Syndrome. I unfortunately don’t have that gift.
Your nephew is going to be great. The most important thing you can do as an aunt is love the kiddo just as you would with any typical child. It is important to be as “normal” with your nephew and their parents as possible…That and educating yourself about therapies, understanding your philosophy on upbringing, and developing an understanding that things are different but it can also be wonderful.
Your sister will have a difficult time at first but an amazing thing happens as the family bond grows. A sense of responsibility and love develops that can’t be explained; only experienced. There was an excellent book called “Babies with Down Syndrome - A New Parent’s Guide” by Karen Stray-Grundersen that really helped my wife and me when we went through this difficult period. That, and a book called “Expecting Adam” were very good for us. I bought everyone in my family these books so they could understand a little of what we were experiencing.
I can’t reiterate enough, just love that baby as much as possible and give effusive affection to both the mom and your Nephew and all will be great. Thanks for sending me this email. Let’s keep in touch..If you need anything from me whatsoever, please don’t hesitate to ask. I would love to meet your sister and see pictures of the little guy also.
Btw, my son Teddy seen in this video is pretty darn wonderful if I don’t say so myself ..In fact he is in my face right now reminding me just how normal he is.
Please share with your sister if appropriate.
http://downsyndrome.com/my-son-teddy/
If you don’t mind, I would love to have my wife shoot you an email also …
Take care,
Justin
April 2, 2009
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Hello Justin-
Thank you for taking the time to email me back. His name is James. My sister is Julie and her husband is Robert. Its hard to describe my sister, she has an angelic like spirit and is as gentle as a butterfly. Her and Robert are identical. Justin I am so angry because I was always the one growing up getting in trouble, picking on Julie, having an attitude… so I say why not me.
My family is everything to me and I don’t want to see any of them hurt. I remember when the teacher didn’t let me my other nephew Josh (6) have an extra taco at lunch and he was hungry all day. I was so upset I wanted to fly over from Germany and give her a piece of mind. Justin if someone should ever say anything cruel, I’m not mentally at a place to know how to handle that right now because it would break my heart to see my sister cry especially over her child.
We are flying out to Texas tomorrow from Germany. They said that they think they are going to have to do heart surgery and I read where that seems to be common. All I keep thinking is he just a few days old and heart surgery.
I am trying really hard right now not to be angry with God, because I know he doesn’t make mistakes. I want to know why? I don’t want to keep crying and being angry because yesterday morning they weren’t expecting him to live. I want to rejoice that he isn’t leaving us, but…
I am going to go directly to Barnes and Noble when we land and buy the book for sure.
Are you afraid to let Teddy free to the world so to be speak? How old is he?
I would love to hear from your wife!!
I think I will hold on to all the emails and wait until the time is right to share with my sister, because this is all so new. She opted not to have the test done to find out if he had ds during her pregnancy, so this is why its such a shock to all of us. I can say this, Jamison couldn’t have been born into a more loving families on both side. Reagan’s parents are wonderful and I would be here for days telling you about how amazing mine are
I look forward to hearing from your family again.
Until then,
Linda
April 3, 2009
Linda,
How are you? Sorry for the delayed reply..I’ve been away on business and have been out of pocket for a few days. Did you fly home to be with your family?
Wondering how things are going and most importantly how James and parents are?
You seem like such a wonderful sister and the fact that you have such profoundly caring thoughts really says a lot about you and your family.
I certainly wasn’t a model child either but that certainly doesn’t have any impact on who we are and why things happen to us. In some respects, the angelic nature of your sister can be viewed as the reason why she was entrusted with this responsibility.
I’m not religious but I believe there is are amazing coincidences in life that frequently align certain people with certain responsibilities. Julie and Robert may be what James needs and in some respects, James may have in some way chosen them to be his family. I’m getting a little soulful here but I certainly don’t understand the mysteries of the universe.
Unfortunately, many people in the world are ignorant but many are also well meaning and intrinsically good. You can’t get angry every time someone doesn’t understand the special needs of our family members. All you can do is look for their honest intent and if you feel that it is genuinely good, you can help educate them so they better understand and transitively can help others.
Heart surgery for babies with DS is very scary but also very common. Surgeons frequently perform the procedures and things will be ok. I am very confident about that. My son had a leak in his heart but was lucky to not need surgery. The pediatric surgeons are incredible and they will get little James fixed up and ready to be a little guy.
Your sister will cry and you will cry also. This is a very emotional and scary time but it will bring you closer and it will develop a bond with James and your family that will not be able to be described. We all handle things in different ways but this is another area where I’m confident in a positive ending for little James, Julie, and Robert.
I am very nervous for Teddy but I am also very concerned for my other two boys Cooper and Cade. Being a concerned parent is the most natural feeling that we can have. Obviously there is an extra level of the unknown with Teddy but I believe that his experiences are going to be fulfilling and his community is going to be generous, educated, and accommodating. Part of my mission as a father is to help that happen which is part of the reason that I started this site. I am a positive person by nature and I think Teddy’s life is going to be wonderful.
Rebecca is very excited to meet you. With her responsibilities as a mother of three, especially when I’m out of town, she hasn’t had a few min to put pencil to paper. If you think it would be helpful to hear from another Parent, I would be more than happy to have a call with Robert and/or Julie and allow them to ask any questions they may have. I can certainly speak to being a dad of a four year old
As always, feel free to ask if you need anything. I look forward to getting to know you and your family better. I certainly can’t wait to see pictures of James.
Sincerely,
Justin
No subsequent response … Linda, I can only hope that you and your sister are doing well and you are both enjoying your wonderful new member of your family! |
I’m sure we can find others that will be able to speak intelligently about other stages in life.
Jim Carper
Linda,
The possibilty of heart surgery for an infant can be overwhelming. Our son Hunter had his 1st surgery (PDA) just 4 days after he was born (2 months pre-mature) and his 2nd (VSD-ASD) when he was 4 months. No one can describe or understand the emotions your sister will go through, just be there for her. Hunter is now a wonderfull 4 year old and has just started his 2nd year of Pre-k in public school. At first I asked myself “why me”, “what did we do wrong” but after 4 years of raising this perfect little boy I now say “Thank you”. Get involved with your local Down Syndrom Association and spend time with those who have been through what you and your family are experiancing.
Sonia
My daughter called me yesterday and told me my 4th grandchild my come with down syndrome my family really do not care but apreciated if you can give us some advice on how support my daughter and husband and also our grandaughter who will be born in january 20, 2010.
Nora
Sonia,
My nephew just turned 2 months and he is the most beautiful baby I know. He was born with DS.
First, let me tell you that if your grandaughter is born with DS you and your family will be SO blessed in ways that you can’t imagine.
My family and I cried at first of course. I cried not because my nephew was born with DS, but because I was scared of how people would treat him in the future because he is “different”. But after doing some research and talking to people that have a family member with DS, I know that my nephew will be ok. Besides, with the grace of God, so far he is a very healthy baby. My sister has taken him to various specialists and they can’t find anything wrong. In the meantime, we are all enjoying this beautiful addition to our family and my goal in life is to be the best aunt for him.
My advice to you would be to be very positive and give your daugther and husband all the moral support they need. And if your grandaughter is born with DS, give her lots of love… you’ll be rewarded in very special ways every time this baby smiles back at you.
Nora
Floreta Bogdanescu
People wonder why these things happen.I know why God put Tedy and Oana on this earth.He is here to teach us all what good, true, uncolored love is.He is a sweet child, always loving, and never complains.He always has a kiss and hug for friends and strangers.It is just a natural thing that happens.he reminds me of how blessed I am to have him in my life.God us chose
hinda
I have 6 months old baby with DS, the diagnosis was surprise, like many DS children she had heart AVSD & Hirschbrungs disease. She had surgery & doing really well, she even learned to breast feed after almost 4 months of bumping milk. Iniatially I was fatigued with the hospitalization, pumping milk & 4 Other health children to take care but now life is back to normal thank God. It was a trail of life, in my faith it says if the person’s IQ is lower they are not accountable on hereafter life.
I am also grateful that it is an easier diagnose to deal with compare to mascular dystrophy, autism & other debelitating childhood diseases. while we were in the Sick Kids Hospital in Canada I also made friends with families who just had their kids diagnosed cancer and died soon after. So called healthy born children have no grantee in life that they will always be healthy. They could be 22 graduated then struck by a car. Life has chalanges so whatever God give us we have to be patient, sufffering comes with ease.
Like my situation we don’t have much support in Canada so it was really hard to meet family needs during the surgery and so forth, but now I am functioning with the family 100%, DS did not slow us down. There are bright days a head for each family who are going through this. DS are special,unique on their own ways, thay resemble each other on each nationality across the globe. There are humans on this earth the God perfected their creation but do not use it to their full potential. DS people are people of heaven.
Justin
Thank you so much for commenting Hinda,
I could not agree with your more. We are very lucky in our own way. It is true that many of us have common experiences but of course all of our children are individuals and will have life experiences that are very different. Take care!
Justin
hinda
Thanks Justin for creating this website my baby girl’s Hafsa’s pictures are uploaded. Take care as we hold on to our positives & blessings in life.