So way back in December I mentioned rather cryptically that I was dealing with some personal issues that were difficult for me to process. Many of you know I have a little 21 month old daughter who has had lots and lots of health problems, and up until December, was undiagnosed. I blogged about our life with a special needs child over at Miggy’s back in October, and it was because of that post that we finally got some answers. It’s strange how things happen, and so humbling how things line up for just the right chain of events to occur.
Back in December I received an incredibly sweet email from a girl named Erin who just wrote to say that she enjoyed my blog and felt a connection with me because she too had a special needs baby and understood all the stress and heartache and blessings that go with that challenge. I’m always so touched when people take the time to reach out and say something kind, it means so much to me. Anyway, in the email she mentioned a picture that I had taken of Tiny and Twinkle, and reading her talk about it made me want to look at it again, as it’s one of my favorites as well. I know that it’s somewhere on my blog, and somewhere on my computer, but as strange as it sounds, at the time I felt like the quickest way for me to look at it was to skip on over to Miggy’s and look at Tiny’s special needs spotlight because I knew it was there. So you know how these things go, one thing leads to another; I reread the whole post, and then noticed that a few people had commented. The last comment of the post, made by Elliesee, asked if Cornelia de Lange syndrome was a possibility for Tiny, and she mentioned that her sister had it. Now I have to say I’ve received lots of diagnostic tips and leads from well-meaning people, but I had stopped googling the various “diagnosis” because it tended to be overwhelming and not-helpful. But for some reason I looked it up, and immediately I was stunned by a physical resemblance of the children I saw that looks almost familial to my little girly. I read the diagnostic checklist and knew that this had to be it, she qualified for too many of the criteria for it to be a coincidence. And also there were things on the checklist that I hadn’t even considered to be part of her diagnosis (like her lacy-looking skin, tiny hands, and head of hair), and yet there it was listed as part of this syndrome. So long story short, after lots of research, I quickly became convinced that we had found Tiny’s diagnosis, and as of last week we were finally able to meet with our geneticist who was able to confirm our belief, although he still wants to try and get approved to the do the (very expensive) genetic testing (I have mixed feelings about that).
All of December I felt like I was in a haze, and struggled deeply with all the implications of this syndrome and what it will mean for her future. I was absolutely heartbroken, and grieved (all over again) for all the things that my precious daughter would likely not be able to experience. Up until that point I had suspected those fears, but it wasn’t until then that I had to give up the hope that my daughter would ever grow out of the challenges that she was born with, as I deep down had hoped for. I was devastated that she would likely not be able to experience the very things that have brought me the most happiness in my life. I will pause to say that we think Tiny has a mild version of the syndrome, and we really don’t know exactly how profoundly this will affect her life. At this point we’re going off of her current delays and what we know about the syndrome. I’m certainly not ruling out any possible accomplishments, but rather am trying to be honest and realistic about all the possibilities that her CdLS and disabilities present.
Since then I’ve come a long way, and now feel very much at peace with all these possibilities. There are still moments here and there that my heart breaks a little as new idea dawns on me, but for the most part, I have faith and peace that Tiny will live a full and happy life, and that she always have the love and support of a family who adores her. It will undoubtedly be different than I had planned or would have wanted, but this is her life, and it will nonetheless be full and happy. She is a bright, sparkling little star, and I know she’ll take it all on with bravery, spunk, and detirmination–all qualities she’s demonstrated in abundance thus far. She is one the greatest blessings of my life, and there’s not a day that goes by that I don’t feel like the luckiest mom in the world just to have her blazing spirit in my life. She is my star.
I’ll also add to this the fact that once I came to terms with this, it all felt in some way familiar to me. I had always thought I might have a special needs child (something I vocalized to my sister nearly 10 years ago) because I felt a sort of connection with them that I can only describe as an intense compassion, love and yearning. When I was finally able to see Tiny’s situation with clarity it felt very right to me, and like I said, almost familiar, like something I knew was coming to me. I also feel for Tiny a sort of companionship (more so almost than a mother-daughter relationship), and that we were meant for each other. I won’t try and tell you what that means, only that these are the feelings that my life’s beliefs and experiences have interpreted, and they have brought me an enormous amount of comfort.
Developmentally at 21 months, Tiny has come about a million miles in the last two months. She is almost walking, eating orally (!!!!! We only supplement now through her G-tube), and is very exploratory and curious. And although she isn’t talking at all, I feel she is understanding more and more signs and words, and has signed More, Milk, and All Done a handful of times. I am so proud of that little woman.
So that’s where we are! A couple of weeks ago she had an echo cardiogram and they think that she has a aberrant right subclavian artery that is causing a vascular ring around her trachea and esophagus . They think this could very well be why she aspirates! So anyway this week we have an MRI to confirm that finding, and if they do then she will have surgery sometime soon after that. Of course heart surgery isn’t something you ask for, but if this could help her, then it would be amazing.
For those of you still reading, thanks for sticking with me on a long and personal post, I don’t open up very often about our personal life, but when I do I am always so touched by the kindness and caring that I am met with. Thank you! And if you’re out there Elliesee, and you ever find this, can I say thank you from the bottom of my heart for bravely making that comment and helping our family find some desperately sought for answers. You were an answer to our prayers that day, and you’ll never know how much it has meant to us!