In 2007 I learned that my baby girl would have Down syndrome. I was so unsure and scared about what this would involve. I cried many tears. The last almost three years have been full of highs and lows and another diagnosis on top of the Down syndrome (Infantile Spasms). It is today, however, that I think about the Down syndrome and remember how it entered my life because of a beautiful little girl named Quinn. Quinn is the best daughter I could have wanted or asked for - she is my everything. There are points of clarity and I know that Down syndrome has made me a better person. It has taught me so much and helped me meet such beautiful people that I would not have otherwise met in the world. Today I actually celebrate Down syndrome - something I was so unsure about in 2007.
Quinn does the cutest thing every single day. When her shoes and sure steps are taken off, she wiggles her toes like oh, what a relief, that feels so good on my tired feet! Her feet are the cutest little things. Although I swear they don't grow :>)
Delays are everywhere. I delay when I am going to blog. Before you know it, it has been a month. I delay taking time to relax. Before you know it, my back and neck are all tight and knotted up. My life has become a serious of putting things off while I juggle a multitude of tasks. Delays are sprinkled everywhere.
And on top of it, every day I ironically notice more delays with my baby girl.
This is not meant to be a depressing blog entry. I love Quinn more than anything and I appreciate her accomplishments and having her in my life, but I just can't help but to notice how far behind she is to her peers with DS. Life is not meant to be a race, so this idea of "far behind" is a ridiculous one, I know that, but I still see it. It just comes and strikes me out of nowhere.
I guess I was hoping for something more after the ACTH was done. I guess I was deep down hoping for leaps and bounds, but there was a spurt and then another plateau. I am thankful for what I have, but I just have been thinking about this. It is hard to explain, I am not depressed, but aware. What is, just is.
My mind has been going to that there must be something more. I am just going to come out and say this. There must be something additional to DS and IS. My mind is now going to PDD. I am numb to this as well. If it is, it is. I am not going to seek out dx in this area yet, I am just going to watch it, but let's just say I wouldn't be surprised if someone working with Quinn mentions this soon. Last night the only interaction I had with Quinn was the frownie face. It is an adorable little face she makes when she is about to get upset. So so cute. Riley and I laugh and smile. I thank God for the frownie face, but a person would like to see more when they come home and spend time with their child. But this is just beyond my control. I just have to accept if the frownie face is given to me, at least it is something and it is Quinn so it is love.
I am learning to let things go. Just take what you have. If there is a delay, just accept it. Not much you can do about it anyway. I am sure there will be other feelings that I have about this on different days, but for right now, I am just feeling this...
This blog is about our journey raising three bright, gorgeous kids (Riley, Aidan, and Quinn). Miss Quinny happens to have an extra 21st chromosome (Down syndrome) along with Infantile Spasms (West syndrome) and Stereotypic Movement Disorder. This blog is for awareness and advocacy for families with children with special needs.