I have already talked about how I do not share the same genetic code of my children or of women who carry the Fragile X mutation, but I still like to pretend that we are connected. I follow the The National Fragile X Foundation on fb for updates and maybe there are new studies about how to work with kids/adults with Fragile X. Luke and I even went to Bostons Childrens Fragile X Department once to see if he was a full mutation, he is not. (I feel like there needs to be a joke here…egh sense of humor) He is a full mutation…of AWESOME. So, I find that often times people focus on the negative of a disability, but NFXF has done a really nice job of highlighting the most amazing features of humans with Fragile X. Here are a few:
I really like all of these. It is funny, but I look at them and I think to myself, these actually apply to every single person alive. It isn’t unique to Fragile X, it is the way we should treat one another; with patience, kindness, understanding and a good sense of humor 🙂 and for the love of all that is good in this world, respect people when they need space!
I have never treated my guys like they have a disability. I have always treated them like normal guys and I have the same expectations of them that I would any other 18 & 15 year olds. I also have realistic expectations based on what I know they are able to do vs. where they struggle, as we all have strengths and areas of improvement.
I have been told that I am too hard on Mathew sometimes and I don’t disagree…completely. HE IS CAPABLE OF SO MUCH AND I SEE IT. I see him having his own place someday, I see him in a loving relationship with someone of his choice, I see him with his own dog and cat, I see him with a job…He is a natural caregiver. Example: he was at LCC and my friend who works there fell and busted her knee. He told her not to worry, he would clean it up for her and get a band-aide…and he would. I meet them where they are, and encourage them to be the best version of themselves that they can possibly be.
Luke, on the other hand, is different. I want all of the same things for him that I want for Mathew, but reality tells me that it will look quite different. Luke will probably need support throughout his life, and that is OK. With Luke, I pick my battles and I am always asking myself, is this something I should push or is this just where he is at? I do not always get it right. I will say that I have stepped back significantly when it comes to letting Luke do things on his own. The only areas I am more hands on with have to do with cleanliness(which is my OCD and my wanting him to be safe from ridicule). Luke still needs help when he has a bm, so I work with him to wipe properly. Luke still needs hands on assistance in the shower, he would just stand there if I let him…but every time we work on these skills he gets better. It will never be 100%, but as long as we keep plugging away. He is still capable of soooo much and when he does things independently or makes his own choice, my heart blows up!
July is that month that makes me remember how long we have been together. On my fb feed a memory popped up from 5 years ago. It was the day I adopted Mathew in PA. They are so tiny!
Even in this moment I get choked up thinking that these beautiful boys were in the DCF system. I will never stop encouraging people to adopt rather than birth their own children. I don’t actually understand the desire to create new life when I look at the world we live in and know how many kids are actually in care…I digress. I don’t mean to offend anyone. I respect your choice.
This brings me back to when Mathew arrived, but then even earlier, when I got to take Luke out for the first time. Both of my guys have these toys that have been with them since day one. For Luke, it is Woody from Toy Story. I was visiting him at St. Charles Childrens Home in NH and we got to go out for the afternoon. There wasn’t very much to do in that area or many places to go, so we went to Kmart. He loves all toys of all kinds and anywhere we go, he wants me to buy them all. He is a driven young man 😉 So, on this day, I told him he could pick out one toy and I would buy it for him. You would have thought he won the lottery! He picked Woody. Woody has been a figure in his life since that day and Woody goes everywhere. Woody and Luke have adventures and I really think Woody is his confidant. Thank goodness Woody is so popular, because there have been several…Once, Woody went flying off the roof of my Moms car. Woody lost a foot that I could not repair. Woody has been through a lot. Here is Woody without his foot. I kept this one, I am not sure if it is the original, but sometimes I am a sentimental fool.
I splurged one year and got Luke the collectors edition Woody…in hindsight, I should have just found one at goodwill or something, but here he is, in all his glory.
This Woody has both of his boots, but a lot of his hair is missing. Luke and Woody go on rescue missions where Woody gets dropped from our 3rd floor to save someone. He also gets his head stuck between the stair railings and pulled back and forth until I cannot stand the noise it makes lol
Mathew…I had no idea Mathew would even connect with Zebra the way he has. His first night with us in Holyoke, I had this Zebra floating around because I was going to give it to one of the guys for Christmas and because Luke had plenty, I put it on Mathews bed when he arrived. Zebra has been there since day one.
Zebra also goes everywhere with Mathew. He packs Zebra if we go camping or to Grams & Gramps house. This Zebra has been had his ears chewed, been throw in the washer several times and has this lovely pink hue to him because these flannel sheets leaked all over Zebra. Mathew does not play with Zebra the way that Luke plays with Woody, but he is Mathews constant sleep companion and when I look at Zebra I just see love. These guys love each of these toys as their own velveteen rabbit. The connection they have is truly beautiful.
I am going to leave you with a couple of pictures from this morning. I feel so much love in my heart that it hurts, but in a really amazing way. Bob’s Burgers has been off Netflix for some time now and I know the guys miss it. We received an incredible gift: The Bob’s Burgers Burger Book Real Recipes For Joke Burgers. It is a book with recipes for how to make all the burgers that they make on the show! Luke has been walking around all morning wanting me to read him a story from the book and Mat has been looking at all of the recipes, deciding which one he wants to make and telling me what we need to get at the store. Happy Fragile X Awareness Day!