Normality

Normal Family Life what is that ?

         

       

 For us, for now ( still cautious you see ) we've entered a period of calm. I can still feel a little edgy at times and unsettled but using strategies I now have in place I can calm myself. Water seems to be the answer, the bathroom with a bath bomb, candles, soft music and tea or more recently the very relaxing pool at the gym. I'm enjoying my time out at the gym too, absorbed in my music and calorie busting !

    

   We've done lots of lovely things as a family and have so much coming up to look forward to, it's quite an exciting time. Our household is often expanded now, we're more often than not a family of seven, my Henry is no longer so outnumbered ! I think it's been good having Warren and C around. We  all compliment each other , it works in a dysfunctional way !!!! Although at times I feel I have six children, I've got all of them an Advent calendar !

 I'm being well looked after by Warren, I found this quite hard initially not sure I'd experienced being cared for to this degree for twenty or so years if ever in adult life. I probably pushed him to the limits and caused him a lot of frustration in the initial months, poor man ! I'm determined our relationship remains balanced though and that I keep my independence and my social life. I'm not prepared to give up my own life this time and would hate Warren to give up his hobbies etc too. We're lucky as we get a good mix of time on our own as a couple, family time and time away from each other. I think that keeps our relationship working well. 

             At the beginning of the year I had a list of jobs I wanted to do on the house, it's no smaller ! Time just got away yet again and better options came along like going out ! I've only done the downstairs hallway. I do have a growing jar of money for the Playroom refurb fund, will change that into a games room etc in the New Year. With better shelving for Henry's toys. I didn't start any major jobs for a few reasons, this being a Victorian property nothing is ever simple, it's nearly Christmas and also I'm starting to sort out my divorce so financially it's harder to see what cash is available at the minute. So hopefully in the New Year, we'll start a room makeover or two !  Let's not hold our breath though ! I keep booking weekends away ! 

      I'm hoping the divorce and financial agreement is sorted soon, don't want to line the solicitors pockets with my decorating fund. It will be good to get divorced it's been over 3.5 years. I need to say those words Ex husband now ! S and I get on alright so fingers crossed things run smoothly.

               We're off to London Today on the train , Warren, Eloise, Millie, Henry and I . We'll meet S at the Imperial War Museum. So looking forward to seeing the revamped museum, we're so lucky to be able to see such impressive collections for free. Eloise is studying WW1 and WW2 in school so she's very excited as is Warren ! Tonight we're all staying in the Marriott ,Maida Vale I think as tomorrow we're going to the GOSH transplant party. Will be good to catch up with the #transplantfamily. Eloise will see some of the teenagers she went on camp with. I'm hoping S, Ŵarren and I all get along for that length of time, otherwise it might be interesting ! 

   Next week brings us into December ,I'm sure the childrens activities will increase 100%. Leah's Saturday job in Whsmiths usually means Sunday and a couple of evenings too. Millie is in two dance Evenings next week, so Eloise and I are watching on Wednesday. I have just 6 shifts left at work, so plenty of time to get organised......maybe. Childrens gifts are nearly sorted but I'm really struggling with my parents presents. I've no ideas at all. Mind you I'm not sure what I want either ! I'll write the minimum number of Christmas cards I can get away with. Not really thought about food, except the stash of M&S biscuits and tubs of sweets....got my priorities right ! 

     No hospital appointments except bloods for Eloise's Tacro level in a week or so, we used to go to Gosh clinc mid December which wasn't the easiest of times but we've now gone to January as that's when Eloise had her Angio this year, how can that be 10 months ago ! Has this year gone crazily fast or am I just getting old ? Time going fast can be a little scary when you are told your child's condition is life limiting but I'm positive we have plenty more sand in the timer and I can tentivly look into the future.

                                   

 

        

Organ Donation Thoughts

We always have Hope.....

       

        

Organ Donation is a huge part of my life now but I guess like many I'd not given it much thought over the years. I did carry a signed Organ Donor card though in my navy Filofax ( remember those ?) from 1989 before registering as a donor electronically . 

    I guess I'd seen renal transplant patients during my nursing career as an adult nurse in Exeter and a paediatric nurse in Bristol and I thought some of the patients looked pretty rubbish , unwell really even a few years post transplant. So when the word transplant was used regarding my own daughter I freaked a little, thinking of the steroidal faces complete with nasogastric feeding tube of the ill looking renal transplantees. I know, I know, I'm probably homing into a minority group and most of the kidney recipients were fine but I guess worse case scenarios stay with you. I really didn't know if I wanted Eloise to be transplanted, what was the point ? What was I signing up for ? But as your child continues to struggle to survive against the odds you owe them not to give up either, so second opinions are sought, referral to a specialist transplant centre made. 

    We arrived in Newcastle, straight away our assessment to see if we could cope with a transplanted child emotionally begins. I guess that's the hard bit you are literally bombarded with information, so much to take in, survival statistics, complications for something that might not even happen. It doesn't matter how much you need or want a transplant for yourself or a loved one someone has to consent to their loved one being an organ donor. The donor has to be a match for you in blood group, size, antibodies, CMV status etc not the other 263 people who are also currently listed in the UK and your clinical need the greatest if the organ is suitable for more than one person. When you think about it, it's incredible to think a transplant ever goes ahead but thankfully they do. I was asked pre transplant whether I wanted to meet the family of a boy who was recently transplanted and about to be discharged home. I declined. Maybe I should have said yes but just because I wanted Eloise to have the same chance as him it didn't mean it would happen.

 I cannot imagine how bloody tough it must be waiting for a transplant . Eloise arrived in Newcastle on the 5th of June over the next couple of days she was assessed but due to a line infection not listed. Then on the 9th of June a heart became available for her and she was transplanted on the 10th. So no wait at all just 24 hours on the top of the urgent European transplant list. Things are a little different in the heart transplant world now as there are mechanical hearts and devices to bridge people to transplant. Lvad's, bivads, Heartware and Berlin hearts to name a few, these weren't available 12 years ago. So people are able to "live" and wait longer. Some of my friends with children have waited in hospital for 9 months, separated from their other children, partner and friends. Life and living like that is tough, it's not normal, it's relentless , draining, depressing but you have no choice, just the hope your child's call comes.  

         Eloise was lucky her call came at just the right time, she escaped the ECMO machine and the complications that being on one of those can bring. Eloise's recovery was quite a stable one, pretty text book recovery heart transplant wise. No complications, off the ventilator,  wires out , drains out and onto the cardiac ward. I guess it's only recently since "watching" others post operative recovery that I can truly appreciate how stable Eloise was , no blips, no backward steps, no scares. Just steady progress that took us back home. Yes very lucky indeed. 

 So I guess at times when I'm angry that this happened to Eloise,  a simple childhood illness destroyed her heart, I have to think of all those waiting for heart transplants. Families so desperate for the same chance as my Eloise has been given. They want what I have because it means their loved one stays alive. It's been a good life too, I know there was a year of stress but 11 years of good, fabulous illness free health prior to that and maybe having the blips pulls you up a little. You take more care with medicine timings, you get more blood tests and you become more vigilant. 

   The transplant roller coaster is a tough one, loads of ups and downs, with no getting off ! But I'm glad my daughter is alive and hey Eloise and I love a good rollercoaster ! 

        

         

  I just wish there wasn't such a shortage of organ donors, that people didn't have to get so desperately ill before their call comes. I wish three people a day didn't die waiting. God I want all my friends that are waiting to get their chance, life is the greatest gift of all and one Santa cannot deliver sadly. So my love and thoughts are with those special to me who are waiting and all the people in our transplant support group that need a transplant right now. Keeping positive for you all as we always have HOPE xxxx