Tuesday night the snow started coming down, around 6-8 inches expected. We all had cabin fever. With my husband laid off and just getting through the holidays, we haven’t made many trips out for fun lately. My husband came up with the brilliant idea to go to Chucky Cheese’s. Even though it was a school night and my oldest now attends public school, I couldn’t resist.We invited our brother and sister in law and their little boy and off we went.
The snow was already coming down and the roads were covered. While I clung to the dashboard, my husband and kids had a great time with the car sliding around the roads. When we got to the restaurant, the place was empty, maybe 3 other people besides the employees. It was heaven. Sophie was able to climb around without the fear of being knocked over by herds of stampeding children. It was so quiet that she wasn’t freaking out because of all of the loud sounds like usual. No one was looking at us trying to figure her out. It was a stress free night!
Sophie spent the first 20 minutes or so laying on her favorite “slide”, I got to play skee ball on the “slide” next to her. 
Then we just walked around from game to game exploring. She has always liked to sit in the cars, but her dad got her to ride the horse. She fell in love and rode it over and over, even petting it. One of her sisters dragged her into the tube, she also dragged her all around the tube until they finally found the slide to get down. It wasn’t one of Sophie’s favorites, but I had always wanted to see her up there.
We made it home after more donuts parking lot and sliding all over. We got 14 inches of snow that night and now the kids all have colds. We wont be leaving the house for a while.
I am so glad for that especially fun night out. I only wish I had brought a camera.
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Looking at past posts, especially the last one I wrote, I think maybe I am neglecting to write about how wonderful it is to be Sophie’s mom on a daily basis. Yes there is sorrow when I see milestones passing or when I see her in pain, but day in, day out, she is a joy.
If you are reading this and you have a special needs child, these are things you already know, but for the rest of the world, special doesn’t begin to describe my child.
The love that my child inspires is remarkable. She is delicate and vunerable and there is a purity to her that I have only seen in a new born. It is truly like have babyhood extended way beyond it’s time. The only thing that doesn’t match is her growing body.
Not many people take the time to know her. She isn’t loud and definitely doesn’t demand attention. Yes sometimes she yells or screams in restaurants or grocery stores, but that is her sickness that always screams for attention. The quiet little girl inside is only coaxed out in peaceful times. She sneaks out when her sickness is sleeping. She is only visible if you really look for her. She is a hidden treasure, and like most hidden treasures when you finally get a glimpse of her she is more beautiful then you could have ever imagined.
She has stretched me into a better person. She expanded my heart to hold this massive love she inspires.
My patience has stretched while I learn to care for her and wait for God’s healing.
My empathy has stretch as I meet the eyes of the other parents I see walking down the isles of grocery stores with their hidden treasures, it is amazing how I never really saw them before.
She has stretched my self discipline as I continue wake in the night to calms her cries or give her medicine, as I still change diapers at 5 years old, as I spend hours trying just to figure out what is wrong or what she wants.
She has stretched my vision of what a mom can be as I strive to mimic new role models, mothers who don’t worry do much about there housework or teaching their kids to read at 3 or 4, but who struggle through a marathon fight and never give up hope.
I am blessed by the sweetness of God’s gift of Sophie every day, and I feel honored that God entrusted her to me.
I feel the now familiar weight in my chest, more grieving. This has been lingering and growing for a while and now it has arrived in it’s fullness. A silly little milestone is close to passing and I have to accept that it will be meaningless to my sweet little girl.
She has a loose tooth.
I feel foolish that tears are now running down my cheeks as I type about such a small thing in the scope of a lifetime. It is just a little tooth, but to me it is one more loss. One more thing that I have to accept and choke down. The reality that it will pass by as less important than it is to most kids.
She goes through so much everyday, if any child deserves this little bit of childhood magic it is her.
Will she even see it? Will we just notice one day that it is gone and find it on the floor, dropped with little thought?
We will put on the now routine show of putting it under her pillow like we have for all of our other kids. We will sneak in and replace it while she sleeps looking like an angel, and we will wake her up in the morning and show her something meaningless to her, knowing she probably doesn’t understand.
I know how much we have to be grateful for. She is beautiful and sweet. It is like she is prolonging her babyhood and I get all of the benefits and trials that brings. She will still cuddle with me for hours. She isn’t busy playing with friends. But there is also saddness in the fact that she will cuddle with me for hours and she isn’t busy playing with friends.
I must cling to the thought that she will one day be healed and this will be a less painful memory. I have to get back to the fight that many believe is impossible. I will remember all of the mothers around the world that are fighting with me and the bond that we share. She might not have remembered her first lost tooth anyway, right?
Related Post- http://wakingsophie.com/it-finally-happened-the-tooth-came-out
Sophie has been off of the GF/CF diet for a couple of months now. She does received enzymes with every meal. The results are not what I had hoped for. Her lips are constantly chapped and I think she would - how do you put it- “less autistic” if she was still on her diet.
She has not completely reverted to how she was before we began all of this. I see some improvement, she is not sitting on the floor lining up toys all day, but I see a lack of ability to communicate and less eye contact.
I have found some benefits. She has started to try new foods. She had cut her diet down to just a couple of things that she would eat. Her diet hasn’t been good, too much food that lacks much nutritional value, but a bonus, these things taste good. Trying new foods and having them please the pallet has caused her to experiment more! This opens up a whole new world! I am letting her try pretty much anything she wants, with enzymes, and I am adding good foods that are on the diet that taste good too. My goal is to expand her diet then start to cut out the non gf/cf foods again.
So there is some success to her leaving the diet with enzymes. In the long run, by expanding the foods she eats, the diet will be easier and mommy has a well needed rest for gf/cf cooking.
I have been swamped and definitely not posting as much as I would like. I have so much to talk about. The last time I posted, I had just started doing the 3 times a day chelation. Here is how that has progressed. I started with very low doses of ALA and DMSA, well I ran out of ALA, so I continued increasing DMSA. I worked up to 100mg 3x a day. Sophie was doing fine, I can’t say that I am seeing the big gains that I saw when we were doing the cutler’s protocol. I have also heard that they go through a time where they stopped making gains for a while even though the metals are still leaving their systems.
Well eventually I purchased some ALA at my local health food store, I have used Kirkman’s up to now, but things are tight here, both in time and money, so I am being very basic. I then worked up to 100mg of ALA. Of course I ran out now of the DMSA so she is just getting ALA.
So here is my summary:
Cons- I am not seeing the huge gains I saw before, none of those “knock me out of my socks” moments. It wouldn’t be fair not to mention that Sophie has left the gf/cf diet with enzymes now and she is only getting a few supplements so this could also account for the lack of huge gains. I will probably ease back into the diet sometime in the near future.
Pros- CONSISTENCY ! I have been able to chelate every week like I have always wanted. It is sooooo much easier only giving this to her 3 times a day that I can actually do it without having it be a major ordeal. Also she doesn’t have the extreme yeast flare ups that she had with the other protocol. Huge plus!
I actually doesn’t seem as hard on her as the other protocol. My theory on this is that she is in the time when it stalls, or this protocol isn’t removing as much metal. The fact that the yeast isn’t as bad also make me think it may not remove as much mercury.
So all this being said, I am very happy with chelating in this manner. I was so afraid to try this for so long because of the threat of harm from metal redistributing between doses, but actually this treatment seems to easier on Sophie.