Grace for Rett » Grace's Life with Rett Syndrome

Grace’s hospital bed came today

Well, Grace’s new bed arrived today.

How’s that for an opening?

I’m not really sure how to write today. All I know is I was walking home from the shops by myself and I saw something that compelled me to write.

My wife, children, and dog are up north with our dear friends. I am still down south, as far south as anyone in England can go, all by my lonesome self.
I’m painting my house and doing lots to it… well, I’m supposed to be. If it wasn’t for our infamous British summers I would have been finished a day ago. But today it’s raining and I’m inside writing this.

Earlier today the men arrived with Grace’s new bed. I had to move her baby cot our of her small room at the top back of our house to make room for a giant sized electrical hospital bed. It takes up the whole side wall of her room. It’s so big I had to move her changing table and set of drawers out. I will find a place for them later.

After they finished the assembling they showed me how to use it.

After this I went to the shops, stopped at the famous Blue Bird Cafe for an omelet, brown bread toast and a cup of tea. I have never gone on my own and had a cup of tea. It’s something I just don’t do!

I should have brought something to read but all I had was The Very Hungry Caterpillar I accidentally picked up with the library books I had to return. I had to carry it into town, but I was in a good mood so I didn’t mind if people looked at me strange (which they didn’t and don’t, paranoia is almost always in our heads).

Right before my food came my wife called me and said the person to pick up a chair we sold was at the house. So I hurriedly ate my food, drank my tea and walked home as fast as my little legs would carry me.

On the way home I saw a man carrying a baby on his back and his daughter of about 3 or 4 riding her little scooter. She said to him, “Daddy, am I riding this the right way?” He told her what she is doing is fine, and they continued walking.
I’m not usually an emotional man when it comes to things like this but it hit me hard right in-between the chest. I would love for my girl to speak to me like that. Or speak at all!

I often say to my wife and friends that Grace is perfect the way she is (which she is) and that I would never want her to change. I don’t look for or expect sympathy. When these things happen you just get on with life.
Good things happen to bad people and bad things happen to good people. Although let’s face it, none of us are really good are we? At least not all the time.

This is just life, not as we would like to know it, but it is life nonetheless. These are the cards we’re dealt and we can’t give the hand back but play it to the best of our ability. My fortune is that I don’t have an ability, I have someone else’s ability I can rest on and in, but I don’t want to preach here.

So after my walk past this beautiful little family it just hit me. My daughter is growing up, but at the same time is not growing up. Her little bed is this huge mechanical thing which makes it easy for us. Not for her, but for us.

I have to often remind myself that I am not the one that this has happened to, our Grace is. But this has affected our lives so profoundly that the ones who often suffer are the families living with this, not just the child.

I don’t often question God why this has happened to us, I often remind myself it’s not us this has happened to but Grace. I then thank God for the privilege of being chosen to carry this cross of suffering, although not suffering as most people would see. However, I don’t want to kid myself. We’re the ones that have to be on call 24/7, 365 days a year (366 on a leap year). We’re the ones who get to see the world grow up but our beloved stay the same, just slightly longer than the last year. We’re the ones who have to just get on with life the best way we know how. I mean let’s face it, it’s not the end of the world having a daughter like Grace. It is the end of some things though, but also the beginning of something so beautiful and bright.

I may be a glass is half full kinda guy, but at times, times like today, stuff sucks. I just want to hear my girl say “I love you Daddy”.

So in a nutshell… Grace’s big girl bed arrived, and I heard a girl speak to her Dad. Life is often cruel but that’s life. And when life gives you lemons, squash the crap out of them and make lemonade… that’ll teach ‘em 🙂


Emma Moody - August 26, 2011 - 5:18 pm

Beautifully written and I completely understand. Life does suck sometimes but as you said you get delt your cards and have to play them as they are…
I thank Mr Blooms Nursery for my sanity!
Take care.
Holly Boyes mum… Emma x

Kirsten - August 27, 2011 - 12:34 am

I love reading your and Elizabeth’s posts about your life with Grace. People throw around words like inspiring a lot, but I just wanted to say I like your attitude and I try to do the same (my tumour affects me, not my daughter, and I can’t tell you how thankful I am for that). I hope blogging about it helps you. I’m not a religious person, but I’m glad that your faith helps you both too.

Sara - August 27, 2011 - 6:27 pm

I understand where you are coming from, the life we imagined is out of reach but not out of sight. For me it’s different now, I miss my special life so much, I miss caring for Livvy of having a purpose beyond the norm. I guess life does hand you lemons but I’m so fed up of lemonade.

Andrea Carter - August 31, 2011 - 5:11 pm

Beautiful,Just Beautiful. I have them days myself, i work with the public everyday and every so often i get teared up too. ‘I love you mommy’ is all i want to hea,r she doesnt ever have to say it again, just one time is all i ask. But as i remind myself she won’t i think she is the purest of pure, she will never lie, steal, cheat, speak no evil so therefore she is GOD’s Angel and most definatly has her spot reserved.We were chosen to give these girls the best of life while they are here and thats exactly what i intend to do!!!Keep your held high and love unconditionally!! I LOVE YOU MY ANGEL, MS.CASIDY!!!!

Eylem Selby - September 19, 2011 - 9:27 pm

Reminds me of the day I opened the post that contained my daughter’s first disabled badge with her 3 year old photo on it! It was me who filled the application form but that did not stop me feeling just like how you described it!

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