Balanced Life

Well I'm glad to report the Happy Bubble wasn't burst on Wednesday. Eloise's outpatients appointment went well, normal ECG and echo, good result from 24hr B/P recording , even her Tacro level is behaving and is in range ! She's starting a new drug Ivabradine to bring down her heart rare but otherwise no change. I need to arrange for her to be seen in Bristol in 5-6 weeks then back to GOSH in July. We had a post clinic lunch date with three other transplant families in Ciao Bella which was lovely, we'd all had good news. 

       I think I've got a great work, life, family , me time balance now and feel very fortunate to have that. I'm really enjoying all that I have in my life, my children, my family, my home, my friends, my social life ! Lovely to have a social life again, I have quite a few nice things lined up in the next month . Meals out, Cocktail Evenings, a trip to meet two lovely ladies I've met through social media for lunch in Cheltenham and brunch dates with friends. Plus My trip to Newcastle with my friend Katie where I'll catch up with my Northern Heart Mums. 

        

Then I love spending time with the children as well, even when Millie wants me to go to some awful chick flick movie with her ! I enjoyed watching Blood Brothers with Eloise last week and a shopping trip to Bath with Leah and Millie. Henry has told me he wants another cosy day this weekend because on Easter Monday we snuggled under a blanket scoffing Easter Eggs and watching the Disney Films Frozen and Tangled, yes I know he's a boy ! He chooses the films, I must confess to watching iplayer with headphones when he watched a Barbie movie ! 

   Home wise , really need to get into the swing of sorting out this house, can't decide what to do first as so much needs doing ! It's my Victorian money pit !  I'm thinking back garden patio area, it needs a bit of attention as does the fencing on this side, city living means a small garden but I'm thankful for that now. I wouldn't have the time for anything more than our little patch ! Also in desperate need of some turf ! Grass never recovered from the outside building work and scaffolding ! 

        

Inside the house I think I need to get the living room done next, I need it all replastered, painted, new carpet etc. So that means I need to get cracking with stripping off the wall paper, any one else find that quite therapeutic ? Probably not going to buy much new furniture will get the sofas professionally cleaned, no point in new while Henry is still leaping all over them ! I just know the plaster is going to be shot and the mess get everywhere. All the ornate cornicing needs decades of paint removed from it, I'm not sure if this is something I will get done at this stage because of the financial implications ! 

                         

So that's the plan for now ! Just normal family life, how I love how that sounds, normality it's good isn't it ? 

Don't Burst Our Bubble !

We've had a lovely couple of months since we had the good news in January that Eloise's coronary arteries all looked good and her heart was still healthy despite the two rejection episodes. Eloise was seen again in February by Dr Martin and again no concerns. She's had her bloods taken regularly and her Tacro dose adjusted accordingly . In fact only the one adjustment in 3 months so that's good, more stable.

    We've enjoyed ourselves and been relaxed. Life's been good. I've been happy and not afraid to say it out loud but now as we are getting nearer to Wednesday I'm losing confidence again. Saying everything is fantastic seems wrong , not surprisingly my happiness is reflected in my daughters health. If she's ok and doing well everything is perfect if not it's tough. With Eloise you can't just look at her and say she looks extremely well and healthy , she always does. Even when her heart was severely compromised in September she still looked incredibly well and felt great. 

                                        

           At times like this I wonder what life would be like without transplant issues, without this constant worry that things are going wrong, life expectancy figures etched in your head. Years of predicted post transplant life going by like sand running through an egg timer, hoping the sand doesn't run out. What is life like ? I suppose we all have our fears and worries in life, some big and some small. To me though there cannot be anything greater than a mother's fear of losing her child. Other things can be replaced, solutions found, changes made , but nothing can bring back a living person after their death. 

       Looking at it in another way though, are we part of the enlightened ? We have seen first hand the fragility of life, been given a second chance for our loved one because of organ donation. Do we live our lives differently ? Make every day matter, pack in as much living as we can in every day. If opportunities are offered are they taken up , just because.....When things don't go quite right in life do you cope with it better because for now you have survived the unimaginable . Nothing can be worse than what you have been through as a family except death itself. I don't know the answer. I do know we have a lot of fun together as a family, that if we want to go on a day trip for example we do, hence an impromptu overnight stay in Weston-Super-Mare last week as the children wanted to ! Having all these good times just makes me greedy for more, so please don't burst our happy bubble.

                                  

When 6 became 5 , three years on.

27th April 2011, a day that started out in an ordinary way, the three girls in school and Henry in nursery. S had a day off and I was off anyway, we were having a new kitchen put in and it was near completion. Leah arrived home from school so S and I set out to collect the others at 5pm , deciding He would collect the girls from after school club and I would get Henry from nursery. As we had no useable oven we discussed having pizza delivered for dinner.

                          

        I arrived home first and sat myself down at the computer, I decided to look at my emails as I was sure we had a voucher for money off Dominos. That search changed our lives, unknown to me S's email account was logged in and opened on a email from his best friend J ( a woman ) Her email was all about the wonderful time they would have in Barcelona ( Grand Prix S always went with work collegues) in a weeks time, I'll leave to your imagination what the email contained it was pretty x-rated. I had that imminent sick , cold dread feeling coursing through my body. I was in shock, never saw this coming. Leah was standing over my shoulder just 13 years old and her World was shattered, she cried and cried while I sat there frozen.

        I was still sat there when S returned , no hysterics, no shouting, not really talking. I just said " I guess I wasn't meant to read this "  His answer " No "

       Very little was said it was awkward I had to stay strong, we still had kitchen fitters in the house, my younger children were oblivious to what was unfolding. It was hours later before we talked. The affair had been ongoing for 9 months , well who knows the truth as I wasn't worthy of the truth from S was I ? I felt betrayed J was best woman at our Wedding, Leah's godmother, she knew what we'd been through as a family and that hurt the most. That another woman could do this to me. I wish they'd been upfront , that he'd just left me for her, hate being lied to, hate the fact he had a double life, hate that I was used. I think he had no intention of going, why spend thousands on a new kitchen, planing a family holiday, trips away etc if you were walking away from a marriage. You would save your money for your new life.

       

      Still now I don't know anymore, the whys , what ifs , the reasons. I can live with that. I guess like many couples we'd drifted apart, my time swallowed up by four children, running a home and working while he was away all week. Our time as a couple was very limited , perhaps that was no longer enough for him. Perhaps we should have talked. I guess I didn't really need him and she did. I'm not sure how green he's found the grass on the other side he just says it's not greener just different ! Astro turf ? I know my life is more relaxed, we enjoy our weekends rather than tip toeing around S and his moods.

        Fast forward three years, we're still here, I'm enjoying what we have, we are extremely fortunate to have a good life. S and I still don't talk very much, nothing in depth anyway, we're still no further on with finalising the end of our marriage, still just separated. That doesn't mean we'll ever get back together, I often get asked that, it's not an option. Where are you without trust ? He visits Bristol every other weekend usually just the Saturday night. He's a better dad to the children and he's a nicer man to have around. I guess another factor in the breakdown of our marriage was his high powered stressful job. He came home knackered, bad tempered, he sat around drinking in excess, shouting his orders, only doing what he wanted. A selfish man. This is no longer a possibility, my home, my rules and as he drives to a hotel room to sleep no chance to drink. I guess he's a victim of his affair too, he's no longer with his children, he's given up the home he worked hard to pay for in full to me and the children. He still lives in a suitcase, travelling miles and miles every week. His home is three hours from here. It cannot be an easy life and I'm surprised he still visits but I'm glad he does for the sake of the younger two children. Leah doesn't spend much time with him, she's older has her own things to do and I guess that's the same now with Eloise.

     As I was used to being on my own with the children all week anyway very little changed in our daily lives. I've always been like a single parent but with financial backing that's not changed. I've always brought up the children, attended their school performances, parents evenings, taken them to hospital appointments , dental appointments etc. I've always run the home as well, so while the affair was a shock and S moved out things remained fairly unchanged. I have to be honest I was worried about losing our home and having to leave Bristol as I couldn't afford to live in the area we do and I think rather than change area we'd have relocated instead. I'm happy the children did not have to be uprooted that they stayed at their schools and within the safety of their friendship groups. They needed those friends. Also I'd hate to gave left the security of being near Bristol Children's hospital on multiple levels .

    So this is where we are .......

Leah 

                                   

Leah's now 16, she's bright, feisty, funny, clever an all round nice kid. She's doing her GCSE's and 2 Btecs this Summer. She's a keen photographer, self taught musician and one of those kids that can do well at almost anything she sets her mind at. Yep I'm proud, I brought her up ! 

Eloise

                                      

Eloise is my hero, just one amazing child, she goes through life smiling whatever is thrown her way. She's quirky , a one off I like that, wicked sense of humour and a blossoming actress ! She's achieving so much at school, above her year 9 targets in a few subjects ( she's in year 8 ) Not bad considering the traumas she's been through, prematurity brain flares, couple of cardiac arrests , bypass.....

Millie ( Amelia) 

                                  

Millie my little Diva ! She's a performer all right , loves, singng, dancing and acting. Wicked laugh, great company when she's not having a tantrum ! Loves fashion and shopping, a girly girl. She's off to Secondary School in September and I hope she too will thrive like Eloise. She doesn't always find school easy but she tries hard and brought home a certificate yesterday for Maths as she's made a lot of improvement .

Henry

                                      

Henry, now where would we be without this blaze of fun in our lives ? He's a character, quite a comedian, I love his take on life. He's as bright as a button , loves school and is soaking up facts like a sponge. Parenting him isn't easy, I'm so used to the girls, but we're on a learning curve together and that's ok, it's fun .

 

Me I guess you already know, I just have it all a good balanced life. As long as my babies are happy and well, life's wonderful. If they aren't I struggle.......

Wants and Needs ?

Have you ever sat down and written a list of what you want in your life and what you need in your life ?Just to try to put your muddled thoughts in order. If not I think it's a useful exercise.

     I wrote mine in the the New Year, instead of New Years resolutions I guess. God it was a struggle, I suppose made harder as I didn't know what was happening with Eloise's heart so writing about what I wanted seemed trivial. Anyway over a few days I wrote my lists, in the bath mainly, luckily I didn't drop the iPad ! At times it made me emotional looking back over past events but at the end of the day the past is over and it's time to move on .

                                      

                                          

So I wrote down a lot of things, varying from financial needs, emotional needs, the need for "me" time and so forth. Very hard to distinguish between your wants and your actual needs but I really tried. I then left it as a note in my iPad. In fact that's where it remained until this week , I probably spent around three hours writing those lists, three hours I'll never get back, or will I ?  Was this exercise just another form of free therapy, thinking time, analysing my life in it's present form . Did writing everything down help me realise a few months down the line that I actually have all I need in my life ? That things happen for a reason, that changes happen subtly not just because you've written a list.  The answer is a most definate yes. In less than a second without being reread the list became no more ! Deleted lost in cyber space, where it belongs.

    When my children are all well, life is so, so good. I know I'm lucky, I have so much in my life and we don't struggle. My balance between Family Time, being at work and me time is working out perfectly. I have a social life !!!! I'm so loving the new friends I'm making at City Socializer , some are just friendly faces whereas others are already becoming that little bit closer which is lovely. Nice to get CS messages , friendship requests and text messages from people checking you are ok. I'm getting to see Bristol as an independent adult not just as a mother. It's a scary other World out there ! 

     Transplant wise I now have a core group that I have a deep bond with, we're all different but it works , I hope ! I've also got all my lovely ladies at work to go out with and we try and meet up for coffee and cake out of work every couple of weeks. So what's not to like ?  I'm one lucky lady.

I also started #FrockFriday in November, not missed a week since. Why wait for a special occasion to dress up and look nice(ish) ?

One of the sticking points on the list was a future relationship with a man , was it something I wanted ? Was it something I needed ? I'm independant, I can cope with caring for my children and running my home. I can get comfort and support from my close friends. I get hugs, kisses, and to hold hands ( occasionally ) so I have a level of human contact with members of the opposite sex ( did the word member just make you snigger ? ) When you have four children you have to take their needs into consideration , I think if I wanted a new man in my life the time's right for all of us, I've been separated d 3 years this month ! But then do I want to share my space ? Etc, etc. What baggage will they bring with them ?  I guess only time will tell, not past first base yet so no point in over thinking ! I like male company always have done so it's been good being in the relaxed company of interesting men again . So never say never. 

Henry " Mummy, you need a boyfriend else you will die lonely " wise words ????

                                     

Naked ! ( all will not be revealed )

Naked - those of you expecting a sexually explicit blog entry may as well log off now to avoid any disappointment ! 

Last night I found this picture on Twitter and it got me thinking....

                        

 

   Have I ever been naked in front of someone ? The answer is yes.

It's very hard opening up to someone on this intense level, your vulnerability is there for them to see. You feel extremely exposed and once everything has been said there is no way back. Words cannot be sucked back in they are out in all their muddled glory. I cried that day, I actually cried a few times , my emotions came spilling out. Not the best of locations in public in central London, but we don't always choose the time or location. I didn't find peace after sharing my inner fears infact I felt worse, I wished I could retract them . I felt stupid, I felt I had passed on a burden that my friend didn't ask to carry for me. I was angry with myself for letting someone in . But it happened.

  A few days later however I felt lighter, more at peace, my palpitations decreased, my need to lock myself in the bathroom for an hour became less of a need and after 6 months of insomnia I slept through for 8 hours at a time. I did still feel guilty for sometime for my friend, me crying on our day out wasn't a good thing. To a bystander it would have looked like we'd had a bust up, that my friend had upset me deeply. I pushed my friend away and walked off but they soothed me and allowed my emotions to spew out. I'm so grateful to have that friend and can now see how invaluable their support was during such a difficult time. I value our friendship and am thankful they came into my life when I needed someone. 

I winged it those difficult 8 months, I kept going but only because I had a close core of special people in my life holding my hand and stopping me from drowning. They listened, reminded me we always have hope and that Eloise is a fighter. They of course were right. 

I can totally see now the need to talk, it's time to change. 1 in 4 of us suffers from Mental Health Issues, I'm not one of them but I so could be. I'm lucky to have people who understand my transplant fears, they listen to me and understand. Not everyone is so lucky. So please if someone at work for example seems out of sorts please talk to them, show you care, let's find time for each other. 

Never underestimate friendships made via social media, I think those I'm closest too have come to me that way and stayed for the duration, now upgraded into my reality. Even though only one of them has seen me "naked" the others have seen me in my underwear , so sorry guys !!!!!