Sorry I haven't been blogging lately. The last two weeks have been very very hectic. Right now I am the only surviving member of my family that hasn't become ill - a little flu bug is going around our house. It doesn't seem to be lasting long, so if I get it, it shouldn't be that much of a biggie.
We finally went to take Quinn's two year old photos on Friday (delayed a few months because of IS and ACTH). I cannot wait until we get them to hand out to people and hang on the wall! I have included a sample here. There are some even better ones too, but this just gives you a taste. My girl is so beautiful I cannot believe it. I am truly blessed to have her in my life.
This weekend we went on a little get-away with the kids to Chicago! It was a great time. A cool experience happened when we stopped at Lambs Farm on the way home. Lambs Farm is a place outside of Chicago where some adults with developmental disabilities work. We were standing in line waiting to purchase some things from the bakery, when a woman working there saw Quinn in her stroller. She said to us, "oh we have a future special Olympian here" and smiled a wide smile. She told us how great the SO is. It was a pretty cool interaction and one I will always remember.
Ok I know I have gone on and on about my dislike for the term normal, but for once I like this one...Quinn's EEG is normal. The nurse read us a line from the report that her response to ACTH has been remarkable. I am so thankful that it worked.
Quinn had her follow up EEG yesterday, but they were running so far behind that Neal didn't get to meet with the doctor to go over the results (he had to go pick up the boys at school). Now we wait for a call. Of course, they didn't call yesterday - so we wait and wait and get more and more nervous by the minute. How can it be bad news when she crawls so darn fast now, right?! I can't believe how fast she goes!
I love the song in this youtube video that I just found today, so much of it speaks to my feelings with Quinn.
Brad Paisley: Find Yourself
When you find yourself In some far off place And it causes you to rethink some things You start to sense that slowly You're becoming someone else And then you find yourself
When you make new friends in a brand new town And you start to think about settlin' down The things that would have been lost on you Are now clear as a bell And you find yourself Yeah that's when you find yourself
Where you go through life So sure of where you’re headin' And you wind up lost and it's The best thing that could have happened ‘Cause sometimes when you lose your way it's really just as well Because you find yourself Yeah that’s when you find yourself
When you meet the one That you've been waitin' for And she's everything that you want and more You look at her and you finally start to live for some one else And then you find yourself That’s when you find yourself
When we go through life So sure of where we're headin' And we wind up lost and it's The best thing that could have happened ‘Cause sometimes when you lose your way it's really just as well Because you find yourself Yeah that's when you find yourself
After I calmed down a bit from the initial shock of the prenatal diagnosis of DS, I began to think about what it would be like to have a child with DS who was one of those superstars. You know, the ones that are higher functioning, at the top of the DS bell curve? The ones you see doing some amazing things or who become self-advocates. This was for sure going to happen to me because, let's face it, I am an overachiever and my children would be too. Nothing else could possibly happen. Right? Yeah isn't that always the way it goes when something unexpected happens to you?
I am beginning to realize that this was the initial way I coped with the diagnosis - the fantasy of a superstar. I don't blame myself for this, I think it is only natural. We have to work on our grief and change in reality in stages and I was indeed grieving the loss of the child that I thought I would have. The superstar was just the next step to help me get along. An important step actually.
I can't predict the future. Who knows if Quinny will indeed become a superstar in her own way, but let's just say she hasn't been performing on the top of that DS bell curve as of yet. For the longest period of time I didn't want to really see that, but I knew it in my heart. I would see the other beautiful superstars out there around the age of Quinny and I would look at wonder at what they were doing and then go back into denial as to where Quinny was at in comparison. Look, turn your head, and then get distracted by something else was the name of the game.
Oh the comparison game, why does it keep happening when we should know better?
But EXCITINGLY I am beginning to see that I will be ok with the idea that Quinny may not be a superstar by society's standards. I am beginning to see that it doesn't matter. I can't control that and I am thankful for what I have. She has started to do a lot more lately, which is great! And in this journey, even with (and I'd hate to admit but probably because of) the crap crap crappy IS I have learned that I love her no matter what. I wouldn't trade her with anyone, not even the cream of the crop of superstars because she is my love, my daughter, my mini me.
I salute the superstars that I see. And I salute those who wouldn't be considered superstars by society, but are superstars in the hearts and minds of their mommys and daddys. All of our children are beautiful and such gifts - all are superstars to someone. And Quinny is my love, my superstar, my everything. I love you baby girl. You always show me the way.
So much has changed with Quinn since she stopped the ACTH it is just remarkable. Unbelievable. A blessing. Today she actually kept going into her brother Riley's room to hang out. My little girl would travel from way out in the living room, around the corner, through the doorway and then settle into Ri's room to beat her rattle up against various belongings of his. Oh yeah, she does take her rattle with her. She moves fast - a girl who knows what she wants. Riley just laughed at this. He knows this is happiness and a blessing. We told her to get out. We tried to be serious. We brought her back to the living room, and she would travel there again and again and again. Like I said, I have a beautiful little girl who knows what she wants.
Right now I have relaxation flowing over me and happiness in my heart.
Might seem small to some, but after so long of sitting and doing nothing, this is absolutely heaven.
We have this drum from way back - way back when Riley was a little bitty guy. Now he is half the way to adulthood (he just turned nine). Someone told me that about Riley yesterday and I was like HOLY COW - HALF THE WAY TO ADULTHOOD!!! Sorry, I digress. Anyway, this drum was Riley's toy, Aidan's toy, and then was to be Quinn's.
Up to this point, Quinn hasn't really ever played with a toy other than just using her rattles (which she loves) and accidentally here and there hitting keys on the piano (just randomly and not purposefully).
I felt stuck like will my girl ever play with these toys of her's, even the hand-me-down ones from her big brothers.
Tonight I saw a beautiful thing - my little girl was playing with the drum.
She would purposefully hit her rattle against the drum and then the song would play "everyone play the drum...play the drum." She would pause during the song and then once it was over, hit the rattle against the drum. Over and over again she would do this on purpose.
With the boys, I just took things like this for granted - what it takes to do this, to think this through and make this decision and figure out the toy. Thank you Quinny for always showing me the way and teaching me to stop and consider the beauty of the "small" stuff. Small stuff can be HUGE and worth celebrating.
I was listening today to someone talking about how they did not feel like they are normal. A very powerful story this person had. You could just see the power of normal.
NORMAL. A word that I never had a second thought about before now has great significance to me.
Yesterday I was eating lunch with three other women and they start talking about their lives. It doesn’t take me long to realize that I cannot relate to one thing they are saying. I am abnormal. Nope, I am not a normal woman, mom, wife, etc – I don’t say a word, fearing my abnormal ways will stigmatize me. Then the conversation turns to talking about one person’s 10-month-old grandchild, who is starting to walk. How exiting! I have been there twice before with the typical development of the boys and how smooth that all goes. Ummm…inside I ask myself, what is Quinn doing now? Well, gee she just started crawling – let’s recap, she is two YEARS old. Yep, that is not normal. Ok I really need to be quiet now because these women certainly don’t want me to say anything and upset their normal little worlds. Later I tell someone how I didn’t appreciate how a professional person left me a voicemail with the r-word in it. The person said oh they were probably just quoting what the mother said. Yep, I am not normal. I am overly sensitive.
You know what, I have realized that I really don’t want to be normal. I don’t want my daughter to be normal. I want to learn AND grow AND become more sensitive to what other people go through. I don’t want to just assume that everyone walks the same line. That is hurtful. It happens FAR too often and even amongst some people who should know better. Normal is over-rated and desiring it can make some miserable or superficial. Atypical is where it is at. I am part of the elite!
If you think about it, movies and books are filled with adventures like the ones I have experienced, a perilous journey of which you encounter who knows what that takes you far from the reality of what you know. Think about Wizard of Oz, a story that involves such a journey. Dorothy survives with the help of three friends who thought that they didn't have everything that society valued. However, in the end these friends really did have their own version of it and there was such value there. Doesn't that sound familiar?
We have journeys in life. It is those journeys that teach us what is important. It is those journeys that lead us back to home, family, and our relationships - what is truly important. I am blessed to have experienced such a journey. That is the positive thought for today.
Wow - look at all the children helped though Reece's Rainbow this holiday season! I am drawn to this website and tend to think about what would Quinn's life be like if she was born elsewhere to another mother. I smile when I see Quinn crawl across the room surrounded by love of a family - hopefully others through Reece's Rainbow can experience the same. It is truly a blessing to have Down syndrome in your life, for it teaches you what is really important. I am so glad we sponsored Ivy through Reece's Rainbow and we pray she finds a family this year. If you didn't participate in this project this year, please do so in 2010.
The past week I have thought a lot about negativity - how it can surround us, consume us, overtake us, and ultimately destroy us if we let it. This negativity can originate from our own negative thoughts within ourselves and/or amongst the negativity of some people we may know and associate with. I have a lot of things I would like to work on this year, but they all seem to fall within this area - the need to surround myself with more positive. Positive radiating from myself and the others I choose to have in my life. This is not only for myself, but for my children - they need more positive in their lives too since our world can be overly critical. So I am on the lookout for positive people to discuss and sharing positive thoughts - this doesn't mean that I won't complain (eliminating that may be difficulty depending upon the circumstances). But I am going to be more positive in 2010. Won't you join me?
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.