I remember when the doctor first told me he suspected that Lily had Cri du Chat, I remember my mind very clearly thinking, she doesn't have this, there is no way. For the next few weeks, while we were waiting to get Lily into Primary's for genetic testing, I obsessed constantly about whether or not I thought she had it. I would look at certain features and think that there was no way she could have it, because she didn't have low-set ears, or webbed fingers. And if she did have one of the features, I convinced myself that it came from somewhere in our own DNA, like a small chin (all my kids have that when they were born). Round and round I went, day and night, convincing myself that her cat like cry could be from something else, the fact that she was really small didn't mean anything, I know babies that were born much smaller than her and had no problems. I could convince myself every day that this was just a horrible mistake, and that soon everything would be cleared up, and one day we would look back laughing when we told the story.
After we took her into the geneticist, we all went to lunch where my aunt (who works with special needs kids) joked that she must also be in denial too, because she thought Lily was looking so great. In fact everyone around me must have been in denial, because everyone kept saying the same thing I was thinking, that she just couldn't have this condition.
The day we got Lily's diagnosis, somewhere in my mind my first thought was that it must be a mix up, there could have been a mistake made, but I knew in the bottom of my heart that there was no mix up, there was no mistake made. There was no more wondering whether or not she had this and there was also no more hope that this would end the way I wanted it to.
4 comments:
Hello Brittany, I have been here to your blog several times reading past posts to learn a bit about you and your family. I was unaware of the condition your Lily has.
I love the photo of your dear family in the header. Precious! You have the sweetest smile and eyes!
I will be returning to read more of your posts.
Kindly, Lorraine
To me it is beautiful to see how we were all fighting for her. How we would do anything to make her healthy and happy. Your a great mom, and Gian mentioned a few days ago how you are the perfect mom for your kids because you are so patient. I, well I am still working on a few things. Lils totally deserves you for her mommy!
I remember going to lunch with you guys. And seeing the polygamous made the day seems more light hearted! hahahahaha I don't know why I felt like they were celebrities hahahhaha I am RUDE!!! aahhahaha I even tried to get Katie to get a picture of them ahhahaha I was in denial....
Love your post today. It is so true. I think it is also true that everybody is grieving for something. We just can't always see what it is. And something that helped me was the day I heard a time out for women presenter say, when she found out the diagnoses for her son, she went out in her car and cried. Then she went to buckle him in his car seat and she realized that that beautiful wonderful baby boy was exactly the same boy now as he was five minutes ago. The diagnoses did not change that sweet spirit, it only changed her own perception. From that moment on, she kept remembering that he was the same little boy. Loved, wanted, needed, nothing, absolutely nothing, had changed. When my daughter got diagnosed with tourettes, I came to see things the same way. Bless you for your patience, your strength, and your love.
Brittany, I did that too. That thing where you look at your baby a think, "No way. She can't have that syndrome, she looks so perfect, so 'normal.' And like your Lily, my Olivia doesn't have most of the features typical in 5p-. I denied and denied and denied. And then I put her in therapy and did more research, and denied some more and then, finally, when she was two years old, asked that she be tested. By then, I knew Olivia, I loved her, I still had amazing dreams for her but she was proving that she might actually make some (all?) of those dreams come true despite the 5p- diagnosis. Thank you so much for sharing with us. It brings back so much for me.
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