Grace for Rett » Grace's Life with Rett Syndrome

Rett Syndrome Stinks but my girl rocks! {by Steven}

A while ago I wrote a blog on what has happened to my life since Rett Syndrome snuck up and bit me and my family on the butt. I wore my heart on my sleeve and let it all out. I remember writing that at about 1am after a night of day dreaming about my daughter.

For those who may not know, my daughter Grace has a debilitating condition called Rett Syndrome. It’s a rare genetic disorder that only affects girls (some boys have it but almost all unfortunately die by the age of one). She started her regression at about the age of 6 months, about a year earlier than most girls do. I believe we (my wife and I) are quite blessed in that we didn’t really “lose” our girl when she regressed. She never learnt to sit up, walk, or talk in the first place. She lost her gaze and smile for about a month, but that came back, and to me that was what mattered the most.
Other families saw their daughter hit most of the major milestones and then lose them all, we didn’t.

I don’t really know why I’m writing this time. I’ve tried to write before now (since the first time) but have never been inspired to. Maybe I’m now feeling inspired, or maybe I’m finding things to do since my wife and kids and our friend Frances are watching High School Musical 2 and the cringe factor is just too much for me to handle right now 🙂

Last time I wrote I said something quite negative about my family. I don’t think I was being fair on them. I wrote about my dad, sister and brother and my extended family. I’m not close to my extended family but I’m closer to my immediate family than I realised.
After my last post I saw they do actually read the blog and they were hurt by what I wrote. I didn’t mean to hurt them, I guess I wanted them to see it so things could change. Things certainly have changed.

The things I said were my truth, but weren’t the truth. I pretty much said they didn’t care. I also said they may care, but didn’t know how to show it. To be fair it was also partly my fault. Communication is a two way thing. It takes two to tango and all that.

They really did care, and tears were shed. My guard was up, thinking no one from my family really cared. I had been let down as a child by my extended family and I guess I was expecting it in this tragedy too. Tragedy has pretty much followed me for a good portion of my life. I may have had some terrible lows, but I have also had some terrific highs.
Had I gone to my family and told them how I felt instead of doing it on here I think it may have been a bit easier on them. It was my way of communicating though as I was finding it hard to speak to them.

Anyway, after my post we spoke, and cried, and things are better than ever before.

Sometimes we need to understand our own families, and look for, and just accept the way they are.

My family are crazy, but I love them and love them just the way they are. I love my sister and her many lists, her borderline OCD (lol) and her many reasons to be so busy. My brother is insane and knows as much as God. And my Dad, well, my Dad is a true legend. He is still the life of the party (after me) and at the age of 64 looks like he’s in his early fifties.

They really do care (I’m writing this as the over-inspired song of HSM 2 plays loudly from the TV), and I know if I need them they’ll be right there 🙂

Any way. We only have one family. I lost my mother when I was 20, one week before my nephew, my sisters first child was born, and a month before my 21st birthday. We all had a hard life as kids. And considering so many in our positions are on drugs, alcoholics or some mental sickness we didn’t do too bad. We may as well make the most of it and get over our differences, because when they are gone we can never say what we wanted to say when they were alive, even if it means a good ol’ argument.

Thank God for dysfunctional families. Who wants a functional one anyway? Where’s the fun in that? Stuff extreme sports… I’m a Halford!!!

On that note I must say that having a daughter with such physical problems doesn’t seem out of the ordinary. I think I was always waiting for the next hardship to come along. My wife said she always knew as a kid that she would have a disabled child. Well she could have said something before I proposed (just kidding).

And I must not forget my other children. Grace is not the only special person in my family. It is hard having a girl who needs 24/7 care. With all the lifting, pushing, cleaning, the hours of feeding etc we sometimes spend ourselves on Grace that we have no more energy for the boys. But we MUST make time for our other children. They are special too!

One thing I don’t like is the jokes people make about my work. I pastor a Church of about 150 people. I pastor with a few other people but its a full time job. I get paid for 2 days a week but do a minimum of 40 hours a week. I help my wife with the photography business AND we are full time carers for Grace. We split the work well, and we are fortunate enough to be disciplined to make work as minimum as possible to do all we need to do to run a Church, a business and a family, especially one with a girl with so many needs that takes a lot of time to do.

Sometimes it takes about an hour just to feed her, give Grace her medicine and give her a bottle (at 2 1/2 she can still only drink from a bottle with a teat). Giving her a bath at night is painful. Where my friends may let their kids bathe themselves we can’t with Grace. It’s easy bathing a kid when they’re 2 months, 6 months, or even a year old. But when they’re a 30lb 2 1/2 year old but you still have to wash them as you would a new born, it gets pretty hard.

Our backs hurt. I already have a dodgy neck and Elizabeth was born with scoliosis and still has it. Carrying our child up the steepest stairs in the world, putting her in the car etc is painful.

So to have people “joke” about work, or the lack of it they think I do is not fun. It’s long been not funny.

I don’t really have anything else to write about. Maybe one last thing. God!
People often say that all God is is a crutch. Well, those who say that are right. When I need Him the most He is there for me, to lift me up when I cannot walk. People take pride in how strong they are. Not me! I have no strength! I am fully reliant on the strength of God. He is my crutch. He makes it look easy, even when it’s hard.

I have 3 loves in my life. Jesus, my wife, and my children, in that order.

Of course I like and love other things and people, but they are the ones I am most passionate about. We come to Him with all of our weakness, failures, aches and pains, and He bandages us up and strengthens us to be strength for other people. We are not strong, but He is strong in and through us. His strength is perfected in my weaknesses.

Be nice to your family, reconcile while you still can, call on the name of Jesus to help you and to save you and He will answer 🙂

Steven.

Papa Cook - July 23, 2011 - 6:51 am

Steve,

You and I are now competing for who where’s their heart on their sleeve the most! Only joking. Another great blog because the honest ones are always the best!

Just one comment: Elizabeth and you do not need to apologise for your lifestyle! It is the one that God has given to you, and your responsibility is to live it out as honestly as you can! There is no merit in working as others do, or in the size of your pay-cheque. It is pretty obvious to me (but then it would be!) that, with a disabled child, you need, together, to develop a flexible and probably unusual work/life balance. I know there are those who don’t approve of my working lifestyle, but I now no longer care. I am not answerable to them, but to my heavenly Father, and to my wife and family. So long as they are happy, (and they are!), then I am happy and content to continue to do what God has put before me. So, please, no more apologies or justifying what you do or do not do.

Hugs to you (especially to Gracie, who has stolen my heart!)

Paul

Sara - July 23, 2011 - 4:03 pm

I pushed everyone away when Livvy was diagnosed how could they understand they don’t have to live my life. Also when people couldn’t are the gift I had been given in Livvy I would get so wound up. It was easier not to try communicate. I’m still lousy at communicating. You know if I’m stressed as I hide away.

Alan and I experienced the same jokes, sarcastic comments about Alan being at home. Nobody saw the man works a 20 hour day caring for a severely disabled child and a disabled wife. It nearly broke him. Thankfully the love of his dear wife (yes me lol) and his amazing kid kept him going. Though two days after Livvy died a so called friend asked him if he was going to get a real job now.

He still faces some of this working as a foster carer. I ask them to work 24 hours a day every day of the year for what we get paid.

Regardless of all the heartache i would step back three years in a heartbeat. Just to hold my baby again in my arms. That’s what really matters in life. The simple things, the smile, the hand to hold.

As you know My faith is still a journey that I’m on. Something I’m still learning, understanding and embracing. My love for God is what gives me the strength to face a new day. I fall he catches me.

Sorry for such a long comment. What I really wanted to say was you are awesome and never let anyone tell you different.

Papa - July 26, 2011 - 12:31 am

Steve- You may not post that often, but when you do, you say it all.

You give me such great comfort knowing you are in my daughters life. You have your priorities in order- you are a great husband, father, and pastor. I could not ask for more in a son-in-law.

I love you.

tonya - August 31, 2011 - 3:50 pm

Our daughter only rolled over and said a few words. She could hold a bottle. As hard as Rett is for us and our girl, I can’t imagine how other families felt who had to watch their daughter stop walking, crawling, talking etc. How awful that must be. Yet I wonder: are they the “lucky” ones to have seen their child do such great yet normal things? Or are we the “lucky” ones too have not had to watch our girl lose those skills? Hard either way.

What is Rett Syndrome | rett-syndrome.info - September 10, 2011 - 4:21 pm

[…] Rett Syndrome Stinks (but my girl rocks!) » Amazing Grace – A while ago I wrote a blog on what has happened to my life since Rett Syndrome snuck up and bit me and my family on the butt. I wore my heart on my sleeve and let it all. […]

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