When you least expect it.....
I ran my first half marathon since 1996 yesterday. Last time I ran a half marathon I was considerably younger and the following day I also discovered I was pregnant with our first child, Theo. I was so pleased at my time yesterday, I exceeded my expectations and came in at 1:49:07 still feeling strong and definitely with enough mileage left in my middle-aged legs to cover the full marathon - a commitment I have agreed to take on for our hospice next year!
But something happened yesterday which hit me like a ton of bricks - a mile into my run, getting into a steady rhythm, I started to notice my fellow runners, the majority, like me, were running for charities, many had signs on their backs dedicating their run to a late mother, or father or friend. And I was struck by the enormity of what I was doing, early that morning I had tucked the blankets around a peaceful Daisy - hooked up to her drip, with extension bags on her gastrostomy to drain bile, her ileostomy to drain faecal waste and her catheter - surrounded by her toys and books....and at that moment, a mile into the race, I wanted to stop and sit on the side of the road and sob my heart out.
Out of the blue I was struck by the enormity of what was happening in my life - my little girl is going to have yet another major surgery - the date has been agreed for October 19th, I don't want to have to take her back into hospital and tell her it will be alright when I don't know if it will, when she will have to endure pain, maybe a spell in intensive care, be pumped full of drugs - but I have to do it. She is getting tired during the day now, the pain is dragging her down, her quality of life is being affected.
I had to use all my willpower during that first mile to stop myself from breaking down, from sitting on the pavement and wailing - because Daisy would not do that, Daisy will face this next challenge and fight tooth and nail to get out of hospital and get home back to her toys and books and people she loves. So mentally I picked myself up and concentrated on the job at hand, and ran my race for Daisy.
It happens to us all, us "special mums", when you least expect, during the most ordinary moment in the day, the reality of your life hits you and you have to draw on the dregs of your reserves to keep going. But we do, all of us, all of my friends who share the same struggles as me, day in, day out - because our children do, and that's all that matters.
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
special needs (86) costello syndrome (45) disability (33) Great Ormond Street (19) aspergers (19) TPN (18) cancer (18) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)