MMD—
—Sariet

 

by Sariet

 

Sariet shares her experience of becoming a mother as her husband was diagnosed, became ill and ultimately died from Motor Neurone Disease.

 

My husband was diagnosed with MND a year after we got married, just as we had started trying for a baby. I wasn't pregnant and the question Rob asked at the time was "what should we do now?". But his biggest wish in life was to be a Dad, and I wanted the family we had planned on having, so in the end there was never a debate. 

People wanting to help offered their "expert" opinion, telling me it's hard enough raising kids in a “normal” household with two healthy parents and that I shouldn't bother, unaware I was in fact already pregnant (and already scared). 

My husband passed away a year ago. Our daughter was only 11 months old at the time and I can look back and be proud of our choices. She may be a child to a one-parent household now but she was born to two deeply loving parents and she gave me a reason to get out of bed during the darkest days.

She gave Rob a chance to taste parenthood and she gave me a bit of him to hold onto forever. 

AT2 - MMD1
 

On occasions like the anniversary of his death, birthdays, weddings or other special occasions, Sariet writes to her husband Rob. As well as sharing her story, she has agreed to share one of these deeply personal letters with us here as well.

Dear Rob,

I'm fine. It's what I say a lot. It's what I tell myself most of the time, and mostly I believe it. I'm fine because I have memories with you, I had, although too short, time with you and a life with you. I had you. I reminisce and I laugh more then I cry. I remember you pre MND like MND never happened. You know the everyday stuff, like you using your sleeves as oven gloves, or you hearing the bin men outside at 5am and you’d jump out of bed and run outside in your pyjamas to quickly get the bins out (almost every single week). Or even just you walking through the door after work saying "hello madam." I can still see us on a quiet weekend night, each wrapped up in our blankets on the couch watching tv. 

I was fine yesterday, I didn't believe this date would have a hold over me. I just didn't feel anything until last night. Just like every Monday I picked Maya up from nursery and brought her home. I took out the candles and told her we were lighting daddy's candle. She pointed at the framed hands and then at your photo and I told her to blow you a kiss, which she did. That was the point I was no longer fine. When you were diagnosed I knew what it meant for me. I accepted that our time was to be short and I just had to make my peace with it. It wasn't till last night that I realised I had never really accepted what it meant for Maya. I started looking for photos of us as a family and due to your stubbornness of not wanting photos in the wheelchair there are only a few.

My tears today are not for me, they are for you and Maya. My heart is broken that she will never have the memories I have, the time that I had or the man that I had in my life. I know what kind of father you would have been to her and it is the greatest tragedy I will ever experience that Maya won't get that time with you.

I promise my life will be about making sure Maya knows you as best she can. I promise to share with her every single memory I have and I promise she will know what kind of dad she had.

Love you always
Madam xxx

AT2 - MMD 2
AT2 - MMD 3
AT2 - MMD 3

WHAT IS MOTOR NEURONE DISEASE?

Motor Neurone Disease (MND) is a disease caused by a problem with cells in the brain and nerves called motor neurones. These cells gradually stop working over time. It's not known why this happens.

MND can affect walking, talking, eating, drinking, thinking, behaviour and breathing.It affects everyone differently. Not everyone will experience the same symptoms nor will they be in the same order.

Symptoms also progress at varying speeds, therefore doctors struggle to predict how the condition will affect their patients.

It's always fatal and can significantly shorten life expectancy, but some people live with it for many years. There’s no cure, but there are treatments to help reduce the impact it has on your daily life.