Quinn, Please Let Me Cuddle With You

I get to spend some time with the kids today. Hopefully I get to hold and cuddle Miss Quinn before she rushes off, crawling around the house - that girl is on the move all the time now.

I have been thinking about just how blessed I am to have Quinn. God gave me the most precious gift possible, my Quinny. I didn't believe this when I was pregnant and we received the diagnosis, but I know this now. I know that Quinn is perfect just the way she is. I am blessed to have her as my daughter. I wish that all those with a prenatal diagnosis who are going through a scary time could know that someday your heart will overflow with love for your child.

A couple of days ago I was reading up on the blogs that I follow and I found out that a beautiful little girl, Carly, that I sometimes check in on through the cyber world had passed away. I don't know what were the circumstances, but Carly's family is in my thoughts and prayers, especially her mother because I have followed her blog postings about the love she has for her daughter. When I learned about the lost of Carly, I knew what I had to do. With tears in my eyes, I went upstairs and tried to hold Quinn, who of course only lasted about 30 seconds in my arms before she had to crawl off to her new adventure. But just that 30 seconds was worth so much. Beautiful beautiful Carly with her smile and her mother who loves her taught me so much in the beginning of my journey towards acceptance of my daughter and the thing she happens to have called Down syndrome. God bless you Carly.

I found this video today and it really shows how having a child with DS and just surround you with love. You want this feeling to last forever, but sadly it doesn't. I have to go try to cuddle with Quinn again.



-Karyn

What to Say

So much to say, but then again I really have no details to give you.

For the next six weeks (probably more) I am in limbo of what will come of my career - if major changes will be made to my job which could change the direction of my work dramatically or even impact if I have a job. I really hope the "powers that be" make the right decision, but I am not confident. I could say so much more, an unbelievable amount of stuff, but yet I can't.

But on the upside I know from one of my "side jobs" that I will be ok. I could go there full-time if things don't work with this transition at work. That brings happiness in my heart - it is nice to have a plan B and to be wanted, but quite honestly even though there are a lot of politics that I don't like, I love what I do and really don't want this change thrust on me (I want to keep doing what I am doing and not have outsiders determine the direction of my career). If these changes happen, I will know that I will have to grieve a rather large loss and now I wait eternally for the word of what the decision will be. But I will adapt. Quinn has taught me to do that.

It is just a lot of pressure right now because I am the financial supporter of five people (plus one dog). I worry. I try to get my mind off of this. Then I worry again. Plus I have to perform at work and home, so I have to pull myself together in a reasonable fashion to do so. Another lesson I learned from Quinn, from when I received the diagnosis - the first one and then the second one. DS and IS consecutively.

On the up side, I have been successful in doing some things for myself. I am losing weight. A lot of it. Finally I feel healthy - well other than my aching feet from walking a lot the last few days to get some exercise in. Actually I lied, I am not REALLY doing this for myself, more for my family. People laugh when I tell them this, but I am losing weight to not die. Yeah I know that I can't totally fight death, but I can reduce the chances by not being obese. I am the financial supporter of the family, if I die where would that leave things? Plus if I died and then Neal died where would that leave the kids? More specifically where would it leave the boys in caring for Quinn and ultimately Quinn? I can't just assume that even when our kids are in adulthood, things will go fine. Things are just more complicated now than that. Oh on so many levels things are complicated. But in a world where I have very little control, I can control this aspect of my health and I will do so. Otherwise I hang on for a very emotional and tough ride which will take me who knows where. But Quinn taught me that I will be ok, so I will trust her on that.

-Karyn

Cherish the Rests

Yesterday I started to think about something very important. The importance of rests in music. Our pastor helped me get this idea into my head and apply it to Quinn. Rests are the intervals of silence when it comes to music. They are very very important because without them, the song wouldn't be the same. We need rests; we need to recognize them and cherish them, otherwise the song would not be the masterpiece it is. I experience rests with Quinn all the time. These are the intervals of sameness before she acquires some new skill. I need to recognize that these rests are important and cherish them, not trying to rush to the next skill or part of the song.

-Karyn

Attack of the R-Word

It happened again last week. I was sitting in a meeting of all places. Then one of my colleagues, let's loose the r-word. I look around the room. People avert their eyes, no one speaks up, and they all know I hate that word, but not a single one is going to say anything. It is up to me. So for the one millionth time I have to bring this up. I am so tired of having to always be the only one. It just comes out of nowhere and attacks you and leaves you drained and tired.

-Karyn