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Special Needs
akl0506
member
charge syndrome
akl0506
member
Our friend's baby has Charge Syndrome. I was thinking of getting her a little nursing basket with water, snacks and a book. I thought that "Bloom: Finding Beauty in the Unexpected" might be a good option. However, that book is about a child with Down's. I was thinking it might be appropriate b/c it is from the mother's perspective of coming to terms with her daughter's diagnoses. I realize these are 2 different conditions and don't want to be insensitive, of course. Is this ok OR perhaps I should just play it safe and get a best-selling novel to take my friend's mind to another place? Thanks for your help.
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Re: charge syndrome
I agree with Auntie too. 'Bloom' is NOT the book for this situation.
Getting a book about someone's else's very different 'storybook' journey would just piss me off. It would also make me feel totally inadequate if I were to compare my 'special' life with the author's.
It's great that you are thinking of her though.
If this is a good friend, I would tell her about the CHARGE Syndrome Foundation (you can look up their website), which is a fantastic resource. My son was tested for CHARGE based on the appearance of his ears and his mixed hearing loss and while awaiting the results (he doesn't have the genetic mutation nor enough of the features to merit a clinical diagnosis), I found this group. They have a convention every 2 years, which is really wonderful.
CHARGE can affect people in many different ways, from very subtle and mild to more profound. There are plenty of CHARGErs who go to graduate school, which may be something your friend needs to know.
That being said many children born with CHARGE can't eat by mouth for the first few years if ever (my son still does not) so no nursing items aren't a good idea. Please do not get the "Bloom" book. As a new mom of a special needs child I would have smiled and thanked you for this book but it would have made me really upset and had made me want to die a little inside. I think the biggest mistake a lot of well-meaning people do when I child is born with special needs or sick is forget he or she is still just a child. I would bring any popular children?s book that you would get for any of your other friends.
Like Auntie said don't suggest articles like A trip to Holland (which while I think has some good things to say made me want to scream for the longest time). She is going to have to come to terms with what has happened in her time and in her way. To put it in the nicest way possible you don?t understand and you can?t understand, so the best idea is to just be her friend and say nothing about accepting or coming to terms about her child being special needs.
IF and only IF she hasn't already heard about CHARGE resources already you can tell her there is a Facebook group https://www.facebook.com/#!/groups/chargesyndrome/ the foundation https://www.chargesyndrome.org/ and a yahoo group https://health.groups.yahoo.com/group/CHARGE/
We are her tribe. We understand without her having to explain and at least one of us, if not many of us, have medically been through whatever her child is struggling with and might be able to help her with understanding or making medical decisions for her child. When my son was in the hospital and we were near a point where he might have gotten a tracheostomy I turned to other CHARGE parents and asked them about other treatments and options. One of them gave me information about a surgery that I then took to the Drs. After my son had that surgery he was able to breath off a machine and didn't end up getting a trach so that alone shows how invaluable their help can be.
If you want to know what to bring when my son was in the hospital he was drowning in toys, and book, and cloths. While I loved that my son was thought of the most useful thing anyone brought for us was food and time. GC to the hospital cafeteria, while not fancy can be so helpful, or to a local restaurant are always a great useful idea. We were always hungry and finding it hard to eat.
Visits were a god send. My girlfriend T, who full and busy life, came to see me many many times during the 2 ? months we were in hospital. Every one of her visits was so welcome and treasured. They made me feel human again, if only for a couple of hours. I always told her it was better than therapy. Even if all you do is sit at the bedside with her it will mean a lot to her. And although you didn't ask I'm going to throw one more thing in here for you and anyone else who happens to read this. FOR THE LOVE OF GOD drop the phrase "I don't know how you do it" from your vocabulary. At least when it comes to parents of medically fragile or sick children. That is, to this day, something makes me want to vomit and throw things though all I do is smile and change the subject when someone says it.
1. Because no matter what you intend when you say that what comes across is pity and the last thing I need or want to hear is pity.
2. Because I, like all mothers and parents not just special needs, have no choice. This is my child and he has needs, just as you have a child and you take care of their needs. A special needs child is no different and to imply so is thoughtless and stupid.
Seriously when someone says this to me I want to scream at them "OH SORRY DIDNT REALIZE I HAD A CHOICE! AND THE FACT IS MOST DAYS I DON'T KNOW HOW I DO IT EITHER! THERE DOES THAT MAKE YOU FEEL BETTER?" I don't of course but sometimes I really really want to.
3. Because it's just a really really stupid thing to say.
If you are wondering what to say then I will tell you this. One day back when my son was a newborn I was telling one of my best friends T how much I hate it when people said that to me even though I knew it was well intended. She then asked me what would be the thing to say when you don?t know what to say in a situation like that?
I didn?t know but T thought about and then she then said well how about this..."you?re doing an incredible job and I'm very proud of you.? She?s said that many times to me since then. I always appreciate it and it never makes me want to throw things. It doesn?t make me feel like she pities me. It does show that she realizes that sometimes it?s just really really hard being the parent of a special needs child. Best of luck to your friend from one of her fellow CHARGE?r family members.
I remember back when my son was first diagnosed with CHARGE. It felt like my life was ending. There were so many tears, so many dark days, so much fear for my child and our future. If only I knew then what I know now how much easier these last 18 months would have been.
Because what I know now, and couldn't understand then, is that it isn't the end of your life, only the start of a new and different one then the one you imagined. A rich, full, beautiful, and yes sometimes difficult and different life, but one so blessed with this amazing child who truly is a joy and a gift.
She will have to get here in her own time and in her way. If I said that to her now it might make her want to throw something at me.
I don't know how to thank you all. Your words of wisdom have been a real gift and I appreciate your help immensely.
To address a couple of things...The baby isn't allowed to leave the hospital until she can latch, so I do know my friend is BF-ing. We are bringing dinner over next week and have already ordered a monogrammed hooded towel to be sent to their home for the new gal (my go to baby gift, b/c we love ours). But, just wanted to include a little something extra with the dinner. I think I will still do a little "baby survival kit" - water bottle, snacks and maybe a toy or two to keep their older one occupied when the new baby needs attention. That way, it can be used for nursing or feeding or whatever! I definitely WON'T get any books that I think might be "helpful", like Bloom. Also, thanks for the heads up on avoiding the "pity party" statements. Will do.
That is so sweet that you're thinking of your friend.
While we have a totally different diagnosis, we spent some time in the hospital when Lauren was in heart failure and she ended up having surgery. My favorite gifts were food, candy and cards! I'm a card person- to me, the thought of sending a card conveys that that person really is thinking about you. And I loved getting clothes in bigger sizes- it helped me to realize that she would get bigger and eventually need that size clothing.
I'm not sure how long your friend and her little one will be in the hospital, but I liked the ones we got in the mail beacuse to me, the fact that they took the time to go buy a card, write in it, buy a stamp and send it felt really good!
And one statement I hated was, "She's so lucky to have you". I felt like that statement was saying that other people wouldn't want my baby! I loved (and still do) when people say that we're lucky to have her- because we are!