Wednesday, August 20, 2014

First Day of Kindergarten

What a heavy heart I've had this week. My little bitty baby boy is in Kindergarten. Where has the time gone? Perhaps this is a silly statement to make while he is so young, "where has the time gone?" It seems like that's more like something a college student's parents would say... but he's not like every other kid and he may or may not get to college so really time is moving too fast for me. It's like on hyper drive and I want it to go slower for a few years. (Though I'll happily fast forward to Quinn walking, eating real food and being potty trained!).

I have been experiencing a combination of feelings... typically mom stuff - WOW, I can't believe my baby is all "grown up" now, time goes so fast and so on...

It just feels incredibly magnified because for a long time I wasn't sure we'd get here. I wasn't sure we'd find a place for Will. I just wasn't sure. I could never envision Will in a public school, going down the hall to the bathroom and tripping and never making it back. I'm not a public school snob. I plan on sending Quinn to public schools. I just couldn't envision making public school work for Will.

About two years ago I attended a program on what the government provides in a public school setting and how requirements are met and discussed for special kids. I still remember I left feeling very heavy. I tried to get teachers to talk about their experiences without asking too much - I wanted to hear their REAL answers. Frankly, it seemed like some teachers were irritated with the process, not necessarily the kids or parents, but the extra work and processes they dealt with. There was simply no way that this was going to be an option for him - at least not one we wanted for him.

My Top Two Reasons Why I'm Sure Now:
1. This Little Guy. He has more determination, strength and willpower than a small army of highly trained soldiers.  He is going to make it happen.

2. WOW - Talk About Accommodating! 
I knew The Parish School would be amazing, but I really had no idea how far they will go to make it work and to prepare an individualized plan. The director of admissions asked us to come in last week before school started to go over, in detail, Will's medical needs and how they planned to meet them. Everyone from the head of school, his teachers, the nurse and even the nature program director were in the room. (I'm glad I had prepared some notes!). 

Neil and I were able to work with them to find solutions to things such as how to deal with his heat intolerance while they are outside, finding ways to save energy so he can enjoy doing the fun stuff, toting and fetching medicine that is light and temperature sensitive. 

We left that 1.5 hour meeting feeling relief and happiness, but mostly relief. 

We did meet the teacher on Tuesday. He's in the "Zebra" class. 

The teacher runs a blog and they seem to do a lot of sharing. I'm excited about that part. I have my first PTO meeting tomorrow morning then I am going to observe his classroom. After talking with his teacher, she asked if I would come watch Will and see if his physical movements are "normal" for him. I think she's prepared but maybe slightly nervous about making sure he stays safe. I'm looking forward to this observation time. 

It's really hard to go from our old school where we knew everyone to knowing no one. Will brought special snack on Tuesday for his last day and enjoyed handing it out. He wasn't in the mood to take photos, but whatever! 

Side note, Quinn was loving this visit. She had an audience full of kids which kept her very entertained!

Yes, I'm proud, worried, anxious and concerned. I'm relieved, nervous and happy. 
But mostly, I am enjoying a bittersweet moment of my son growing up. 

They close at noon on Friday's, so I'm looking forward to a weekly lunch date with my special guy. 

Two Important Mito Action Items

There are two important action items floating in the mitocohondrial community right now. I hope if these opportunities apply to you you'll take them on!

1. UMDF has started an international patient registry. Go to WWW.UMDF.ORG and start the survey. I filled it out for both me and Will in less than 25 minutes. This is one of the best opportunities we have as a mitochondrial disease community to help work with researchers. If they can't locate patients, clinical trials and viable treatments and a cure will take longer.

They have maxed out on the privacy and security issues. I liken the amount of privacy and security to a Vegas casino. I think I spent more time on the privacy element than answering the questions. The registry also has a really cool feature where you can see how the other participants are answering. Eg. Are you a boy or girl and it shows the percentage of how many boy/girl are participating.

2. Columbia University is doing a mitochondrial replacement therapy survey. Essentially if you have a known mtDNA mutation you should contact them.

Kris Engelstad MS CGC, Genetic Counselor and Clinical Coordinator, Columbia University, Department of Neurology, P&S 4-424, 630 W. 168th St, New York City, NY  10032, e-mail: ke4@columbia.eduPhone: 1-212-305-6834, Fax: 1-212-342-6865

I filled out some basic HIPPA and release form paperwork that Kris emailed me, then sent it off in the mail - took more time to print it than it did to fill it out. You don't have to approve of the potential therapy, they are looking to gauge how people feel and think about it. You're not signing up to be in a trial, essentially it's just easy paperwork.

So, if you think about it... No participants. No research. No clinical trials. No treatments. No cure.

I urge you, NO EXCUSES!

Many of you have seen the ALS Ice Bucket Challenge - WOW! What an inspiration. I am friends with a young lady who lives with mitochondrial disease. She's trying to start a similar campaign but instead, smashing an egg on your head. (get it? Mitochondria are in women's eggs?) I think it's commendable that she's trying. Are you inspired to find a national "mito movement" to help raise money? Post a comment with your idea. Maybe we'll start our own trend. It should be noted that ALS and Mitochondrial diseases are linked - so for those of you pouring cold ice on your body, thanks! You're also helping an element of mitochondrial disease research.

Wednesday, August 6, 2014

The Other Sibling

This past weekend we went to dinner with some friends and met some new ones along the way. There were two other moms there in particular who I spent most of the dinner talking with. One of the moms had a son who beat cancer and the other mom has a sibling with special needs.

I haven't really talked to a peer who has a sibling with special needs. This has been her whole life, she was 4 and he was 2 when an accident happened that put her brother in the "special needs" category.

I have wondered now for a long time what that's like, to be the sibling. To be "the normal" or "the other" kid. I have many fears about both my kids childhood and what it will look like, how they will treat each other, how others will treat them.

It's soul crushing to feel like maybe you're not going to be as good of a mom to both kids simply because one has extra needs. Or that the "normal" one will feel slighted or not as loved. Quinn came into the world in a very special and unique way with the help of science, that compiled with everything she will do for and with her brother create some complex issues. Maybe they are issues that reside only in my head and will never come to fruition.

Maybe they will come to fruition, but once Quinn is old enough to have a mature conversation with me, maybe those things will be wiped away. I don't really know. I fear for the teenage girl hormones. I was really a bitch. The friend I met this past weekend said she was too, and she added that she also acted the way she did because she could. There is always something hurtful to throw in your parents face, she just had more ammunition to choose from.

Now as a grown adult she shared that while she did and said some crazy hurtful things to her parents, she never lost the love for her brother and she realizes now that she was totally irrational.

Some of my (irrational) fears were put to rest at dinner. My wonderful and beautiful daughter will inevitably and God willing become a horrid teenager. If our relationship can make it through those years everything will turn out okay.

I could go on for a while about this, but the Internet is forever, and one day Will and Quinn will both know how to read. Emotions are complex, but the love I have deep in my heart for those two crazy kids will always, always surpass whatever is going on.