We are all settling back down to normality. Not without a few inevitable hick-ups though. Hope is now too old and wise not to know that there are some concerns at the moment and she can't get the image of William lying on the floor so ill out of her mind. It is so difficult because you want to protect the siblings from things that children so young should not have to concern themselves with. That works for Ellie but not for Hope. In some ways, all of this has made he grow up too quickly but, of course, she is a 10 year old child with a 10 year old child's emotional maturity. This results in a great deal of emotional turmoil between things she understands too much about with those she understands so little of. This, with all the things every 10 year old has to worry about, such as going up to secondary school, a growing interest in her self-image, boys and the latest fashion is all a bit too much for Hope at the moment. There have been a few blow ups while we learn how best to move forward and support each other. One of the week's lessons has been that Hope wants to share in all we are feeling about William. I have been accused of not caring enough because I never cry, words said as poor Hope sobbed her heart out because "they want to make another hole in him (the illeostomy) and he is only 2 and a half". I explained to her that, oh yes I do cry - in bed, in the bath, when I am out running. We have made a pact to let each other know how we are feeling and not to hide emotions away anymore so we can support each other.
The girls made some lovely banners and posters for Mothering Sunday and did their very best to make it a special day. They did too, it was a lovely day. My thoughts are always with those Mum's I know who have lost their children. It can be a bitter sweet day, even if you have other children and heart breaking for those who have lost their only child. It is often said that we borrow our children while they are with us, only to let go as they grow in independence. Some of us borrow our precious little ones for a shorter time. As this post no doubt demonstrates, I am still feeling emotional following the last few months, and probably will remain so until we go to Birmingham for our inital appointment towards William's transplant assessment. A good friend of mine has just had a baby and I got a cuddle this morning. She is gorgeous and perfect and, whiles ecstatically happy for them, I still feel a pang for William and the healthy baby he could have been. Not that I would change him though. He is amazing.
Emily (www.pinkandsmiley.blogspot.com) came home today after her lung transplant. I am so happy for her. She deserves her second stab at life so so much. Right now, I hope that William is assessed as being suitable for transplant and he can have a chance to live a life away from drips and tubes. (even it he will always be a bit wobbly).
One practical plea - my mobile phone crashed and burned yesterday and, with it phone numbers of all my friends that I have made in the last 2 years or so. I am using an old phone but have no new numbers If you read this, could you please text me. I would have texted a few of you today to say I was thinking of you - you know who you are and know that you are always in my thoughts xxx
3 comments:
Hi Sarah
So sorry to hear things are so difficult for you all. Despite the troubles though you are clearly the most wonderful and close family and that means so much to your little ones, I am sure.
I'm a Trustee now of GIFT, the UK's children's transplant charity. We offer support, information and friendship to all families affected by the issue of paediatric transplantation. If you want to know more, just drop me a line. We also help support the siblings too.
So glad you had a lovely Mother's Day despite everything else. Sending you all lots of love
Emma xxxxxx
Awww, sending big hugs your way for you, Hope, Ellie and William.
I can sort of understand Hope's struggles, as Seren struggles a lot, both with her own CF and with Dylan's much more severe CF, and she finds it hard to cope when he is ill, and she is a terrible worrier.
She is old past her years and although she understands way more than she should for her age, she only has a 4 1/2 year old's capacity to deal with it.
So glad to hear that you were all together for Mothers Day, and that it was a good day.
I'm with you on the 'pangs', I've had quite a few friends have healthy babies since Dylan was born, and clearly I'm very very happy that they are lovely healthy babies, but I do sometimes feel sort of jealous on Dylan's behalf that he'll never know what it's like to be healthy, and that we'll never know what it's like to have a healthy child. But Dylan is our gorgeous son and we adore him.
Sending you lots of hugs,
Becky, Seren & Dylan xxxxx
Hi Sarah,
Have just been reading your latest news and I must admit I am writing this with a lump in my throat.
I am so thrilled though that your fundraising is going well - I still have a couple more people who want to sponsor you so hopefully you'll hit the £2000 mark really soon and help CHASE out with their 1 mill target.
Life in my house is chaos as usual with Amelia ruling the roost and Henrietta eating us out of house and home! I do send you and William a huge hug and must tell you that I think your girls are beautiful.....the photo of the three of them is so sweet.
Don't worry about Hope too much though as not only does it sound as if you have a great relationship but also because although sometimes it's a worry that our children seem to be old before their time we also underestimate their resilience and emotional intelligence. Hope's other huge advantage in this sometimes harsh world is that she will grow into a person with an inate sense of compassion and understanding for how tough life can be - a rare skill in this day and age.
Anyway, thinking of you and hoping your training continues well - soon you'll be on the start line and it will be a fantastic feeling - I hope!
Love to you all and I will text you my mobile so we can meet up agian when you are next in the C&W, Michala
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