I just learned this morning that a friend of mine who's 4 months pregnant with her 2nd is carrying a child with severe Turner Syndrome. The baby could die any day or survive. That's what her doctor said. Abortion is not an option. She is obviously scared because she doesn't know what to expect and what the future will hold.
I just want to ask any moms who have children with disabilities if you have any advice on what you would have liked for your friend to do for you when you first experience the news yourself.
I did ask my friend to drop off her daughter to my house twice a week in the mornings so that she can take a break and just be with herself for a few hours, even if it's just to go back home and nap. I know that if I'm first learning of something like this, I would be completely numbed and depressed. It's something that anyone would need to time wrap their mind around and be able to have some time/peace to sit, think, maybe pray. Her daughter is almost 2.5 so I know it would do her a world of good that I can watch her daughter and give her a break.
But what else can I do, what can I say? As a parent who've been through something like this..what would you have wanted in a friend in this early stage of finding out something so shocking about your unborn child.
I think what you are doing is already wonderful also let her know that if she needs to talk or someone to read information about it with that you are there for her. If she starts to "freak out" about the info gentley mention that maybe we have learned enough or done enough reasearch, lets talk about something else (could even mention something funny or great that her other child has done).
What you are doing sounds perfect to me. God bless.
And I looked up the Turner Syndrome and there may not be any problem at all. And if there is it will all turn out good and we can know that God will do awesome for us.
I think you are being a wonderful friend.
This probably sounds morbid, but there was an article a few months ago in the paper about a woman photographer who comes to the hospital and does pictures for parents whose newborns have died. The parents all seemed very appreciative to have the photos and found them to be a comfort.
I personally would not say anything about this to your friend, but you might do some research to see if you can find someone there who could do that if needed.
I pray that it isn't needed.
Victoria
You are an AWESOME friend! I think your ideas are great. The parents need time to grieve for a perfect childhood. Also, just being a listening ear is wonderful.
I have a friend whos teenage daughter has Turner's Syndrome. Even though everything *may* be just fine, it's still difficult, especially when kids have difficult treatments or tests to go through.
Whatever happens, I recommend not downplaying in anyway. I have two kids with diabetes and I had a lady at church come up to me and say, "Why is this hard for you? it's not like your kid has cancer". I wanted to punch her out! Any illness or condition for a child is heartbreaking and as parents, we grieve for "what might have been". I believe that God is merciful in any circumstance, but sometimes it's hard to see through our tears.
Again, you are an awesome friend! Your compassion and understanding will be a HUGE blessing to this family!
My biggest advice is just to be there for her and to listen - really listen - when she needs to talk. It is perfectly acceptable to offer to watch her daughter, to offer to go to appointments with her if she needs support, let her know that if she needs to go to the hospital, she can drop her daughter off to you any time of the day or night, etc... It is also thoughtful to offer to do errands or shopping for her, drop off precooked dinners, etc... if you are willing to do that. To say her world has been turned upside down is an understatement. Parents go through periods of anger, denial, fear, grief, etc... when they learn their child has a disability. I had two high risk pregnancies (and two miscarriages) so I can tell you it is very, very stressful to not know if your baby will make it or not. My oldest child has autism. So I know what it is like to find out that my child has a disability and then live with it.... But I didn't get that piece of news until he was 3 so it wasn't like I worried about it all during my pregnancy (I was too busy worrying about all the preterm labor anyway and the amnio that said he had markers for downs syndrome - which he doesn't have). Even once the baby is born, I'd expect her to have ups and downs. The grief comes and goes. And if she miscarries, expect that she'll need lots of support. She'll get lots of "it is for the best"s but not much genuine sympathy and support. That baby is very real to her and she loves it no matter how the pregnancy ends. Genuine sympathy and letting her grieve and vent her anger, sadness and grief is really a gift. Losing a child is never easy and it never feels like a good thing no matter what. Raising a child with a significant disability is not easy either. You end up feeling very alone and very isolated. Your friends don't understand and they have their own lives and tend to not be very sensitive (in my experience). A simple "I'm here for you" is a very good thing to hear - especially if you mean it.
All that said, I work for Early Intervention. Which means I work with kids with developmental disabilities from birth to age 3. Lots of us that work with EI have a loved one with a disability. That's how lots of us get interested. Your friend should start looking into early intervention where she's at. Services can start as soon as the baby is born. I'm a developmental specialist and I work with occupational therapists, speech therapists, feeding specialists, physical therapists, nutritionists and the list goes on. We provide support and services for the family as well as the child. It is a free service and you can refer yourself. It also gives you access to support groups and information.
At this point I've seen quite a few babies with genetic diagnosises and it is true that you really don't know what you are going to get until the baby is born. Some are very badly affected and others much more mildly affected. If she isn't seeing a perinatologist (maternal/fetal specialist), she should get a referral to one. Their knowledge and experience is much more extensive than a regular OB when it comes to a complicated pregnancy. She should also decide where she's going to deliver her baby. She'll want the highest level NICU she can find at the hospital where she delivers. If there are complications, she wants access to the doctors and equipment of a high level NICU. It wouldn't hurt to talk to her pediatrician now and see if he/she is going to be a help after the baby is born or if they need to find a different one. A perinatologist should have access to a geneticist and or a genetics counselor. I read a little about Turner Syndrome but obviously I'm no expert. But in my experience, kids with genetics conditions tend to be less affected if they are mosaic (genetic defect only in a portion of the cells) as opposed to not (genetic defect present in all cells). I wish your friend the best of luck. She's at the beginning of a very hard road no matter what happens from this point on.
T.
I will be praying for your friend every day. You are a wonderful friend to her. Please keep us posted because just as Marilyn B. said, God will do something Awesome. God bless.
I think your on the right track just listen. There are no right words. if she loses it you might take her kid for 3 or 4 days she will be devistated. Tell her no matter what happens it is not her fault and nothing she would have done diffrent would have changed it. I have not been there and can't advise any diffrent
I think the idea of watching her smaller child for a few hours a day is a wonderful idea. Another thought would be to make a roast or casserole for her and her husband so that they can have a normal routine of dinner without planning it, etc. You could also purchase a plain heart necklace for her unborn child. Mom can wear it and touch it as she ponders on the future. If the child dies then it can be cut in half (one for mom and dad) and engraved with the child's name and birth date. I have also seen some babies buried with a heart necklace along with some engravings.
I hope this helps. She is so lucky to have a special friend like you.
If abortion isn't an option, then perhaps she is religious enough to know this isn't a mistake, and only something that will make her stronger. Children are a blessing no matter what shape or form, this one will bless her as well, it just may take a different type of blessing that she might not presently recognize.
My thoughts are with you,
Wendy
Hi,
As a mom who has been through the death of a child (he was 3) I think you are being a great friend. Even though her child could live, not knowing is terribly hard. Just be there for her whenever she needs you. If you're busy, make time. Call her if you haven't talked to her in a while.
I have a child w/ disabilities-I didnt have 6 mos prior knowledge. I'd say get her informed-find a support group. there must be something online.
Dont say i know how you feel. Right now she doesn't need as much as she will need. See if you can get a group together that can share the burden. there is a website called lots of helping hands. and you can schedule people in as needed.
Rt now-just be an ear. her husband will need that too. I always wonder why people get tests done if there is no way they'd abort. Why worry for months? that is just me. Nothing can truly prepare you.
This is so sweet of you. I think the best thing you can do is tell her you don't know what to do, but that you share her pain and let her cry, vent, scream, just be herself with you. Let her tell you what she needs from you.
(If she doesn't take you up on your offer to watch her daughter, don't take it personally. She may need to immerse herself in her other child to feel ok about what's going on.)
Good luck. She's lucky to have you for a friend.
what a very wonderful thing you are doing for your friend. Having a break is perfect. Just offer support and not too many questions. If and when the tears come cry with her.
