Now everyone always say they have the most amazing family ever but I’d like to say they are all wrong!
I have the most amazing family!
I can hand on heart say that my family are the most caring, devoted, loving family anyone could ever dream of having.
Let’s start at home.
I have 2 absolutely beautiful loving children. They are both amazing individuals who have such brilliant characters and dote on each other.
Lewis may have so many health problems but that doesn’t stop him smiling and laughing day in day out. He is an inspiration to so many.
Then there is Adam. My most wonderful 10 year old. He has faced so much in his life so far yet remains a caring, loving child with such a positive outlook on life.
He could teach many adults a thing or two about being accepting and loving to all around them. He has such an open mind, inquisitive and extremely knowledgeable. He is perfect.
Now my one in a million husband Paul. Words cannot express how much I love him and how much he means to me. He is the glue that holds our family together.
Since January he has held our family together, being mum and dad to the boys, managing care staff for Lewis, doing school runs and after school activities, trying to carry out tasks to make our home more accessible for me, bringing the boys to see me weekly and on top of all this trying to work & hold down his job!
He has been strong for me when I have been upset and worried about my diagnosis, reassuring me, hold my hand and wiping away my tears.
He has researched my condition, spoken to health professionals to get information and has listened when I’ve been scared.
He has continued to decorate the kitchen, held meetings about Lewis and tried to single handedly look after both boys when there have been no carers in for Lewis.
He has hidden away his feelings as he has tried to remain strong for our whole family and and listened to everyone’s fears and struggles.
I have been an absolute bitch to him at times. I’ve lashed out when angry about how I am feeling and when frustrated that my progress isn’t going the way I had hoped. He’s listened to me moan when he can’t bring the boys up due to things he needs to do at home and has had me crying down the phone in distress and frustration as I can’t do something. None of this is his fault and I am truly sorry for the way I have treated him. I don’t intentionally aim my frustrations at him, it just seems to happen.
I miss him terribly and hate that we have been put in this situation because of my body. I long for a cuddle and a chat about nothing,to sit on the sofa with the boys and have play fights with Adam.
I really can’t apologise enough for the way in have treated him. He really is one in a million. I’d truly be lost without him in my life. He is such an incredible man. He won’t accept praise, or recognition for all he does for our family so I want to say publicly just how much he means to me and the boys and THANK YOU!!!
Next in the family is my mum. My mum who, despite her own disability, has been staying at out house to help out with sorting the house for my return home, helping Adam with his homework and being there for him after school when Paul is at work.
She has pretty much stepped into my shoes and been like a mum to Adam whilst keeping it clear that she is nan-nan.
She has been there for me when I have cried over simple things and when I’ve cried because of change. She’s researched things that would help make our lives easier and most of all she spoke to my dad when I was hysterical over the fact I couldn’t get up the stairs under my own power. Her phone call to my dad and her reassuring hug as I cried meant that there was a solution to the stairs problem and they were going to help.
It was a bitter Pill to swallow and accept the help from them, I mean I never expected I’d need help in this way at 37 years old.
She is staying down for 2 weeks once I am finally home. I don’t know if I’d manage emotionally at home to start with without her support and understanding. Her disability means she truly understands my frustrations and anger at what is going on.
She has always been there for not just me but Paul as well. She gives him an ear to listen to how he feels (should he choose to open up), she helps put in perspective how things need to be for me when I come home and she tries to understand how he feels and thinks about things.
Again we’d be lost without her.
Then there is my dad. I’ll always be his baby girl and he’ll always do all he can to help me. Like the rest of the family he was so shocked by my diagnosis and found it hard to accept. He offered to buy a stair lift so that I could get up the stairs and would mean I could get home sooner. This level of generosity has really shocked both Paul and I.
One thing that this admission has made positive is that I’ve gotten closer to my dad. Ordinarily I wouldn’t see my parents for months at a time but this has meant that I have seen my dad every other weekend. He drives on down (approx 1.5 hrs ) and comes straight to me. We go and have lunch in the hospital restaurant and sit and chat, not necessarily about anything but just chat. I’ve loved spending time with him, I feel like I’ve strengthened our bond as father and daughter. He has taken me on the scary journey to shop in tescos (my dad hates tescos shopping) & he’s learned how to attach the wheelchair trolley to my wheelchair!
He’s been great with the boys and it has strengthened his bond with them both.
Now my brother Steve. He is in his final year at uni and is doing so well. The past few weeks he’s been doing his dissertation. I’ve no idea what it’s about but I know he’s worked bloody hard on it!
On Wednesday I had a very surprise visit from Steve and his not so little boy Rhys. Having handed his dissertation in he had some time to pop down from Brackley and visit the house, mum paul and Lewis.
Adam was at school due to the timings.
His visit really cheered me up. Over the past 6-8 weeks I’ve had random messages saying ‘hey sis, I don’t expect a reply but wanted you to know that I am thinking of you and will visit once dissertation done’
The fact he’s taken time to message even though busy is great. He is such a soft behind his gruff exterior.
I really love the messages I get, even though some of the pics and videos are a little weird and wacky!!!
Love him, his partner Clare and the two boys Charlie & Rhys to bits.
Now the baby of the family, My brother Andoo. I was 12 when he was born so he has always been my baby!!! He is engaged to a lovely lady Shannon and they have a scrummy little boy called Oscar.
I get the odd message but tend to hear how they are doing through my mum.
About a month ago Andoo, Shannon and Oscar turned up and Surprised me. It was great to see them and see Oscar being so very cheeky. They stayed a few hours and I had a chance to chat to them about how they were getting on with work etc.
My brother Chris (Qwid) lives in Brisbane, Australia. He’s been out there for just under 6 yrs now. I miss him loads. He has a beautiful wife and 2 very handsome young boys.
We always try and arrange skype sessions but due to time differences and dodgy network we haven’t been able to do them.
Well that was until one random night. I was playing on my phone as I couldn’t sleep and all of a sudden my Skype was ringing.
When I answered it I was greeted with a live video of my very cheeky nephew Sammy. It was so funny to hear him speak as he has a mild aussie accent mixed with the Trowbridge twang. So funny.
It was lovely to see grumpy James needing more food and hanging on to Qwids leg desperate to be picked up.
I wish we were all back together at the moment. So hard knowing how far apart everyone is.
MJ is my second youngest brother. He doesnt really say have to say anything.
I real ly do have the most amazing, caring, loving & outright wonderful family and I love them all to pieces.!
I LOVE YOU Paul, Adam,Lewis, Mum, Dad, Steve & Clare, Qwid & Claire, Andoo & Shannon , MJ
Thank you from the bottom of my heart, for all you have done to me a rubbish situation so much brighter & bearable.
Transverse Myelitis & Me, With A New Addition! 