Saturday, April 07, 2007

For Moreena

Ok, i dont know if I am overstepping an invisable blogging line here, but I have just read your latest entry. And I have to say something. What you are feeling is perfectly normal, all the PAT (pre-appointment tension as coined on the childrens heart board) is normal. Each time my kids go for echos/scans (lauren has had two, nic has had one, serena has had one, plus serena has had kidney and bladder scans, nics due one soon), i spend ages reading into every tiny symptom possible. I was certain that at the echo appointment for all girls before xmas that Serena would be the one they flagged up as problem with her heart, as it was it was Nicole(minor mitrael valve leak, wait and see job). The sense of releif that it WASNT DCM was enormous, but it gave us a new worry. But we could deal with that. As you say the sky didnt fall in.

When Peter suffered his second relaspe in winter 2004, and the local hospital kept telling me it was pneaumonia,and i was telling them it was heart failure, I wanted myself to be wrong. When the second hospital confirmed it was end stage heart failure, I wanted THEM to be wrong and to tell me it was pneuamonia. I had worked myself up saying it was heart failure and the first hospital hadnt listened for over a month. I didnt want to be right. The same way you didnt want for this for Anni. Having it confirmed and then being transferred to transplant unit was absolutly gutting. But I still had to do all the normal family stuff, as you do as well. Heck luv, roll on the floor, kick and scream about it, scream from the rooftops, do what ever you need to, but we both know what eventually we have to do. Its written in the contract 'thou shall be the family glue' i swear it is.

What you are feeling about being tired and not being your fight, thats allowed. Right now i am exhausted with all this transplant stuff. Its been your life for 6 years, mine for 2years. People often focus on the patient and how it affects them, but some dont realise the effect on the whole family unit. My children know more about heart transplants, LVADs and hospitals than alot of children their ages. Its normal for daddy to take medicines, for there to be 3 lockable medicine cabinets in the house, for the chemist to know them and present them with books to read whilst I am busy dealign with a 24 item perscription and seeing whats its stock. And I get tired and angry as well. I just want our lives back. I want you and your family to have your lives back as well, for have some sense of normality, the kind that is never really available again to transplant patients, with all the follow up checks etc. Just one normal day for us all.

Will be thinking of you and your family on this new road to travel.

You can tell me off for this if you like and I will delete if you so wish.

Sarah

x

1 comment:

Moreena said...

Thank you, Sarah. Really, it means a lot.

There's no way we could go through this without falling apart every once in a while. It's good to know that it's OK for us not to be perfect every moment, and the family still goes on, with lots of love and no need to pretend it isn't hard.

Thank you.
Happy birthday tomorrow, and I'll be hoping your phone rings.