I have been wanting to update for so many weeks now but have had trouble finding the time.
Scott is back at work and I am finding it difficult to find my "niche" again.
There is so much to do and so little time.
My dad has also been in hospital and I found that he became a big priority in my day.
Normal jobs combined with "get house back to Amanda way" jobs, kids wanting me to spend time with them at school and exhaustion.
Pure and utter exhaustion.
I am looking forward to just being able to relax for a couple of hours.....when everything is done!
Amelia is very happy but still keeps calling me dad.
She points out what DAD does compared to what I do.
She vomited each morning when we made the initial changeover but has now stopped........thankfully.
Tom is very cuddly and keeps talking about "mummy and tom time AND daddy and Tom time".
Recently we have endured dentist visits, doctor visits and this week an eye check.
Amelia has been complaining of a sore tooth and feels that she needs glasses.... "I cannot see properly anymore".
Tom needs these checks for his diabetes anyway, so we all go together.
Amelia had to attend a "dressmaker appointment" the other night.
She is going to be "a junior bridesmaid" next year.
She has researched her own dress style on the Internet.
She has chosen the exact length and color of her dress.
When the invitation was extended for me to attend the preparations she firmly said "NO. This is my special time with the bride".
Amelia still has so many fears but is also displaying so much confidence and independence.
Halloween happened to be my 40th birthday.
Amelia ONLY wanted to discuss Halloween and how many sleeps till the big day arrived.
Tom thought "mum's birthday" was more important!
She researched costumes and where we would be trick or treating.
In the days prior she had me shopping for all of the costume pieces!
We have changed Tom's medical care team and are extremely happy with who is now looking after him.
The relationship he has with Amelia is now both positive and negative..... (negative for parenting!)
They are SO close and get along SO well that it can be difficult to separate them at bedtime.
(GET OUT OF HER BED TOM AND GET INTO YOURS!)
Tom ALWAYS chooses to make Amelia laugh hysterically when I need to get her dressed each day.
Seriously Tom? Right now? Could you not have waited ??!!
On Halloween, Tom emerged from every house and ran up to Amelia "Here I got this for you. I saw your favorite chocolate in their bowl. I told them that you are in a wheelchair and that I needed to get it for you".
No words for the type of person he is becoming.
Finally......
We lost another A-T child today.
Her name was Liv and she was only 13 years old.
13.
Amelia is 11.
Liv had the flu last week and ended up in hospital.
She died 24 hours later.
Having a child with an illness like Amelia's is a very lonely path.
Friends come and go.
But no matter how many friends you have, we are still the parents of an amazing little girl called Amelia.
We are the only ones who nurse, care for and watch the decline......
We see others battle with their own A-T children online.
Every single day we watch and do what no parent should for a child Amelia's age.
We watch and wait for the future.
Today is too close to home.
It reminds us of what will occur in our future.
It reminds us of how it can happen tomorrow.
Keeping sick children and adults away from Amelia is paramount.
I have seen children at Amelia's school that are sick.
A school that has many children with "a life threatening illness".
The parents STILL send them in sick.
When I see these children in Amelia's class, I take her home.
I am not ready to say the final goodbye.
I have shed so many tears for this family in America today
xxx
Halloween.
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