Leons Mummy wrote about being a heart Mummy.......
Much has been written this week about CHD Children, but what is it like to be a CHD Mummy or Daddy.
Well we are normal parents with added extras... Like having a permenant hospital bag packed, just in case. Looking for holiday destinations near a hospital that specialises in paediatric cardiology, making sure insurance covers us in an emergency. When we go to groups and meet people we need to check if anyone is ill, most children just shrug off colds etc, but CHD children dont and it takes twice as long to get us all back to normal. Finding a Nursery group that can deal with complex needs and emergencies without charging the earth for it. We have to become familier with medication and trachiostomies, peg feeds and nasal gastric tubes.
CHD Children are always thin because their hearts work so hard to keep the heart working, it burns up all the energy just keeping going...
Some Mummies dont work because the children are too ill to leave and there is the constant threat of deterioration and further surgery. Are we mad, yes we are, why should any child have to suffer? Are we doing something about it, yes we are, we are fundraising for equipment and research to find out why and how CHD happens so that in the future we can say, we did that for other Heart Warriors, so they dont have to live like us.
It is thanks to the medical staff, friends and relatives supporting us in our daily journey that we are all here today talking about raising awareness for CHD. I have met many amazing people from all over the world who have or know someone with CHD. it affects us ALL, so Little Leon says Hugs to all! Tell your friends about CHD and lets raise awareness today.
Little Leons heart Daddy wrote:
You want to ring home every hour, but don’t. You try to keep the calls to a minimum, but when the missus leaves “you on silent in the bottom of her handbag” the mind works overtime, is everything OK, then when she rings you back after 32 missed calls just to tell you she was having a coffee with a friend and what’s the emergency, you feel a bit daft. Dads don’t do get togethers, our hours of work and the need to be at home make them impractical.
We don’t do chat rooms, we’re not good in sharing feelings and emotions, but we do worry, we do hurt, we do panic over the little things, but being blokes we don’t show it. We try to be strong for the other half, we tend to “suffer in silence”, we tend to have a close group a friends who are great but we know they don’t understand. We would sell our souls to the devil (or in my case re-mortgage it) for our children to be freed of the CHD, but we know whatever we do, we are ultimately helpless. How do we do it?, well, I make sure every morning I get a smile from Little Leon, it’s that little bit of a boost the gets you through the day.
I was lucky I knew he had a great surgeon in Kevin Watterson, after all he saved my dad's life some 20 odd years ago by doing a Triple Bypass at Killingbeck, but I still knew fate lay with Leons own strength and the hopes & prayers of many people around the world. We tend to be in the background, We try to support the Wives / Girlfriends by being there but not getting in the way. We try to be the voice of reason, looking at things logically rather than emotionally, trying to put things in perspective, trying to be “sensible” .
We have the weekends to do things, to make the most of what time we have, I have met many incredible people through Leon’s condition, all unique, all possessed with a strength of character that some can only dream of, I have said in the past that as Heart parents we are all members of a club that no-one wanted to join. That is so very true, but lets make this club famous, Tell the world we have something special, we have kids with hand crafted hearts, with parents that are strong beyond belief, and we all share a special bond. CHD Awareness, bring it on...
So wear red on the 14th for little Leon and his heart buddies and heart angels.
He says if you send him a photgraph of you wearing red he will put them on his blog