Holiday Madness

With Thanksgiving behind us it seems that the holiday madness has firmly set into Rettland. It’s been a hard week for a lot of families dealing with scoliosis, seizures and the reality that growing up is different when you or your sister has Rett syndrome. We deal with this stuff all year but come December, it morphs into a new level of madness.

It is my theory that this is because magically, the day after Thanksgiving society starts screaming two messages at us all:

1. You are not enough, you do not have enough.

2. Everyone is very happy and bursting with love and joy.

Really it is insanity and it gets most normal people down. While we are a lot stronger living in Rettland, we are also more vulnerable. So when we are hit with this on top of the issues with feeding and school and staying alive on a day by day basis, it is hard, really really hard.

Earlier this week I collapsed on the floor crying my eyes out because I couldn’t think of what to cook for dinner. The fridge was empty and so was the pantry. I hadn’t cooked because my Chrone’s had me in a world of pain. The stress of the seizures from Thanksgiving had led me to lose track of space and time and suddenly it was Monday night, I was exhausted, already home before I realized the situation. At that moment figuring what to make for dinner felt like moving a mountain (truly it was as easy as microwaved rice with canned pumpkin stirred in) and it crushed me.

All week I’ve been talking with others in similar situations. I’ve talked with people not living with Rett syndrome and they feel the holiday madness as well but seem to be able to cope. I’ve talked with others dealing with things like depression, disability, grief and health challenges and it just seems like too much.

I wish I had an answer or a magic wand. I wish that all of the pain didn’t compound at years end but it often does. All I can do is keep going. I can put one foot in front of the other on days that I can. I can smile at strangers and be vulnerable and honest with those that love me. Hang in there. Only twenty some odd days to go before we resume typical insanity and I can’t wait. 54309040061

The Last Thanksgiving

Growing up Thanksgiving was my favorite holiday. We would go to my Great Aunt Claire’s house, there was always lots of food and family, occasionally some extra friends as well. After the meal there was some combination of football and A Christmas Story on tv, there was golfing (we lived in Arizona) and my favorite, playing cards. Aunt Claire was my hero and those times are among my most cherished childhood memories. I grew up and life got complicated. Aunt Claire passed unexpectedly from a heart attack, my career had me working holidays and then we moved to California.

Thanksgiving was never the same but it was still my favorite. Then out of nowhere, Claire gets diagnosed with Rett Syndrome which was weird because her hands worked so well. November 2007, 6 weeks after the diagnosis the three of us went to some restaurant in Santa Rosa. Claire fed herself Thanksgiving dinner and the next morning she woke up clapping and staring at her hands, she hasn’t fed herself a meal since.

Since then Thanksgiving has been a tough one for me. It’s hard to sit and count your blessings when deep hurt is so fresh and the only thing you can feel is isolation.

This year, I’ve got a different perspective. My word for this year is ‘unless’ and it has led to the wildest, better than I could have ever imagined year. A rich weekend

2007 was the year Claire last fed herself, unless she starts to again. The thing that I have most figured out is that I really have no clue what the future holds. I didn’t think that I’d ever start a company more or less a non-profit. I didn’t think I’d still be married and what we have now is richer and purer than anything we could have strived for. I didn’t think I’d ever have a drug to give Claire to help with the mess in her brain but in 2015 that could happen.

I don’t know how that will affect her and if she will regain any hand use but I’m not ruling it out. I’m going to live like the future of Rett syndrome is unknown because it is. The only thing I know about is what’s happened and what’s going on right now.

Claire often has seizures on holidays so we aren’t planning a lot. A simple meal of ham, potatoes, corn bread stuffing and brussel sprouts cooked with bacon. We will decorate for Christmas and watch movies and enjoy what we can. Who knows, this could be the last Thanksgiving that Claire can’t feed herself. Now wouldn’t that be a fun memory!

What Maren Can Do

It is with great pleasure that I get to share Maren’s thoughts on gratitude with you today. I met Maren when she lived in the Bay Area, a bit after her daughter Leah was diagnosed with Rett Syndrome. She is a wife, mother, blogger here and here and master crafter on top of Boston Marathon runner, piano teacher and amazing friend for the short list. While we only lived close to each other for a brief season, she and her fabulous family will be forever close in my heart. Enjoy!

Gratitude is a funny thing. It’s ever so easy to say we are grateful for any number of things. It’s especially easy to say we are grateful for that laundry list when those things are in abundance or are working just as we had planned. However, at least in my own experience, we often don’t feel that same intensity of gratitude for whatever it is we were “grateful” for until those things are left hanging in the balance.

I never knew how grateful I was for a strong, supportive family until I moved away from college. Or how grateful I was for a network of friends until one day, they were gone. I never knew how grateful I was for strong, hard abs until I had a c-section and those abs were ripped apart. For shelter and a fridge brimming with food until I had to start paying for said shelter and food myself. The list goes on for me, as I’m sure it does for you. Some items are big, some are small. Some we are aware of now, and some will be added to the list once they are taken away or not working as we had hoped.

But one of the items at the top of my list is my body.

I’m a religious person. I believe my body was created by a loving, compassionate God. And other than my twice disconnected abs, I have a body that works rather flawlessly. This isn’t to say my body is perfect in its proportions or physical worldly beauty – I’ve had my share of crying sessions over my freshman 15 and acne on picture day.

But, cellulite and cankles aside, I have an incredible, working, healthy body.

When I was a young girl, my legs carried me effortlessly across the hopscotch outline painted on the pavement. My hips shimmied their way to the preschool hula hoop championship. My blistered hands swung me across the metal monkey bars with ease.

As I grew, my skin stayed mostly clear of the dreaded teenage acne – and when it didn’t, my body eventually healed itself of those blemishes. My body has participated in countless basketball, softball and volleyball games. My legs have carried me through tumbles in gymnastics and pliés and relevés in ballet, and later hundreds upon hundreds of miles leading to a handful of half and full marathons.

My fingers have gracefully moved across ebony and ivory keys playing endless scales, Chopin concertos and Scott Joplin rags. My mind carried me through AP classes and a nearly perfect GPA in high school and college, graduating from both with honors. I’ve had no major illnesses, injuries or infirmities. And my body has conceived and carried to term two beautiful, incredible little girls.

I can say, without hesitation, that I don’t say any of this to boast. At this point in my life, I can say these things with complete and utter humility and gratitude for a working body.

The reason I say these things with such intense gratitude is because I have a daughter who can’t.

And yet, despite the fact that her body doesn’t work the way she would like it to, we both still live every day with gratitude. Gratitude for the days her fingers grasp onto the stair railing, for the moments her legs carry her where her brain actually tells them to go. Gratitude for her otherwise good health. For her teachers, family and friends who help her do the things that alone, she can’t.

My husband and I just finished reading the Helen Keller story to my daughter. We both felt that while Keller is a great example to anyone, she is an especially great example to someone with a phsycial, bodily trial. In the book, she says, “I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.”

That pretty much sums up my outlook on gratitude. In the same way we shouldn’t refuse to do something that we can do, we also shouldn’t refuse to be grateful for the things we actually have.

We have all been given different blessings. We have all been given different bodies. They all work differently not only in what they can do, but how they do those things. I am grateful, every day, for my body. And, because Leah’s doesn’t work in the same way mine does, I am now also grateful that my body works well enough to take care of her. To lift her, clothe her, feed her, bathe her. To comb her hair, push her on the swings, turn the pages of her favorite books. And if I’m really lucky, I’ll get a slobbery kiss, a bright smile or sweet hand squeeze from her in return.

I never imagined I’d be so grateful for something as small as a hand squeeze. But gratitude is a funny thing that way, and I’m happy to add items to my laundry list.