A while ago I got an email from someone I had reached out to when her son was born with a rare 7q deletion like Dylan. I hadn’t traded emails with her in a long time and I noticed, attached to the new email, was a trail of old emails that we had sent each other.
Normally, when I reach out to a new mom I just tell them what I am inspired to tell them. It’s certainly no form letter and who knows what I have said and shared along the way. I tend to run on and on, which I really had in this instance too, but reading over what I had written to this woman originally I felt like it also needed to be shared. Preserved for those who randomly find this post but that I don’t have the pleasure of trading emails with or reaching out to personally.
What I tell new moms:
I just wanted to tell you a little bit about my daughter Dylan and invite you to visit my blog www.cutelittlemonkeys.blogspot.com. Dylan had no prenatal diagnosis but she was IUGR so we knew something was going on, turns out a LOT. She was born at almost 31 weeks and her birth set our family into a bit of a tail spin.
Information after information we found out Dylan has a mega deletion of chromosome 7q and as a result she has spine issues and her brain is malformed. Her prognosis was quite bleak. You know, those doctors only tell you what’s in their text books, which often works to the families detriment! We were told that she would probably never move or respond or interact with us. Well, she’s done nothing but prove doctors wrong from day one.
She was transferred to the local children’s hospital when she was a month and half old to have surgery. She was in the NICU 89 days. Since that first surgery she’s had a few more but nothing she can’t handle. These babies are so tough! So so much tougher than their parents!
Image courtesy of antpkr at FreeDigitalPhotos.net
In June of 2008 we got a Mic-key button (g-tube) after toughing it out with an OG tube for far too long (though, I will tell you, it didn’t seem like too long until after we got her button). It’s another surgery, but it really has been great for her.
Today Dylan is one of the happiest children I know. She’s one of the very few with her diagnosis who walks and she is adored by everyone who meets her. And those doctors thought they knew it all…
I know it’s tough right now as you are learning how you and our family will cope with your child and the future. But you can do it. I know the grief that you feel. I think about how I felt when I first learned about Dylan and I am flooded with emotion. Right now your job is to fall in love with that baby and not worry about the future, if you do that your family will be blessed with the strength and knowledge to carry on and he will thrive! I can’t wait to hear about him and how he will also prove the doctors wrong.
Please feel free to contact me if you would like to talk. I have been there, we are still there! Hang in there mama!
This mother responded and (kindly) allowed me another chance to ramble on…
Hmmm, have I always been this way? I would like to think for the most part I have. When we first heard the word, the dreaded ‘word’ for what she might have we went to the Internet and my husband and I had a breakdown. We thought it was the end of the world. There is some truth to that you go through the stages of grief when you find out your child is special needs. You grieve; you mourn the ‘normal’ child that you were dreaming of, that you were supposed to have. I reached acceptance very quickly, the ‘we can totally do this!’, quicker than my husband (though I do believe he bonded with her and ‘fell in love’ more quickly than I did).
Once you get to that point, the world is your oyster, nothing isn’t possible. And the impossible really doesn’t matter any more.
I know parents who, after a year, haven’t yet reached the acceptance point. I know mom’s who constantly are pre-occupied with how much time they will have with their child, and how their child isn’t measuring up. I don’t know what’s normal, it probably all is!
I love that you are starting to realize what you’re calling your ‘new normal’ is, that’s a great way to look at it. Dylan’s Pediatrician asked us early on if we have given up and thrown up our hands and I promptly said “Yes!” He then told me that the parents who realize that they are not the ones in control are the most well-adjusted and happiest parents. Once you realize that this is the way things will be and you should make the best of it, you really can take anything thrown at you!
I promise you can do this, you can… you will amaze everyone. People will ask you how you do it, how you made it through the NICU. I won%