Re: Another Birthday, Another Milestone, More Hope than Ever

[Guest guest]

sounds like it was " your " birthday!! What a wonderful story and

thanks for sharing. Just think what next year will bring!!

x

>

> It is so hard to measure progress as a mother.

> Especially when you are tired, and run down, and broke and fed up,

and

> scared of your LEA, and worried that everyone else seems to be

having

> biomedical breakthroughs/recoveries etc.

>

> I don't normally do this, but I thought I would share this with

those

> who need encouraging to imagine how their precious children might

be in

> a years time. Our little boy Orlando turned 8 today. 5 long post

> diagnosis years. Birthdays are always hard, the comparisons that I

avoid

> so studiously for the rest of the year come crowding in and

threaten to

> overwhelm. And yet somehow this year, things are a little

different.

> This is for all those mothers who need hope.....

>

> Yesterday I started to prepare Orlando for his birthday ( a

concept that

> he only vaguely grasps or so I thought) and had a big joke with him

> about it. My expectations were low.

> Orlando woke up early, as if he knew something was up, he came

down and

> played with me from 6am, very sweet, kind of expectant. He sat and

> opened a pile of presents, ploughing through them almost dare I

say it

> like a " normal " 8 year old, ripping off the paper, opening

envelopes

> with cards in, pushing the presents aside to get on to the next

one,

> posing for photographs -

> There is no way he could have done this last year(he would simply

not

> have been interested, and we would have had to open the presents

for him

> and gone through the motions).It is a quantum leap. Ok, the only

> presents he was really interested in were the Ball related ones

but hey,

> he is very very keen on them! All day he was kind of sweet and

excited,

> and when I said " who's birthday is it? " He said all giggly " red

pig "

> (favorite toy he was given when a tiny baby so he's not far off

> actually) AND ME " He went swimming for a special session with

matthew

> and I (matthew came home early specially)and seemed really to

enjoy the

> fact that it was just the 3 of us (leaving his pesky younger

brothers

> behind)

> He stayed up all through dinner when his two beloved therapists

came,

> and also one of his school teachers, and our beloved

Reflexologist, in

> the past he would have had to be endlessly bribed with crisps, just

> about tolerated hanging out with us, and have been at the end of

his

> tether by 7.30/8 and have to go to bed to unwind.

> Tonight, he was up until 10.45 - determined to play football with

his

> guests, he played so beautifully with his 5 year old brother just

in a

> naughty little boy hanging out sort of way. I had never thought I

would

> see this. He was giggling, and smiling, and asking us all for his

> favourite things, as if he had worked out somehow that this was his

> special day and he might be in with a chance.

> He was determined to keep his little eyes open.

> He went to bed, calm, happy and very tired. What a wonderful day.

>

> What a way he has come, I always dread birthdays, but this one

felt like

> a milestone. What a blessing.

> I hope this brings hope to everyone.

>

> Alison

>

[Guest guest]

Hi Ali So glad O had a good birthday you could celebrate. Its 's 8th birthday this month too....his party was on Saturday. Its a long road but worth it, all the small gains add up over many years! TinaAlison Pope <acmpope@...> wrote: It is so hard to measure progress as a

mother. Especially when you are tired, and run down, and broke and fed up, and scared of your LEA, and worried that everyone else seems to be having biomedical breakthroughs/recoveries etc. I don’t normally do this, but I thought I would share this with those who need encouraging to imagine how their precious children might be in a years time. Our little boy Orlando turned 8 today. 5 long post diagnosis years. Birthdays are always hard, the comparisons

that I avoid so studiously for the rest of the year come crowding in and threaten to overwhelm. And yet somehow this year, things are a little different. This is for all those mothers who need hope…………. Yesterday I started to prepare Orlando for his birthday

( a concept that he only vaguely grasps or so I thought) and had a big joke with him about it. My expectations were low. Orlando woke up early, as if he knew something was up, he came down and played with me from 6am, very sweet, kind of expectant. He sat and opened a pile of presents, ploughing through them almost dare I say it like a "normal" 8 year old, ripping off the paper, opening envelopes with

cards in, pushing the presents aside to get on to the next one, posing for photographs - There is no way he could have done this last year(he would simply not have been interested, and we would have had to open the presents for him and gone through the motions).It is a quantum leap. Ok, the only presents he was really interested in were the Ball related ones but hey, he is very very keen on them! All day he was kind of sweet and excited, and when I said “who’s birthday is it?” He said all giggly "red pig" (favorite toy he was given when a tiny baby so he's not far off actually) AND ME” He went swimming for a special session with matthew and I (matthew came home early

specially)and seemed really to enjoy the fact that it was just the 3 of us (leaving his pesky younger brothers behind) He stayed up all through dinner when his two beloved therapists came, and also one of his school teachers, and our beloved Reflexologist, in the past he would have had to be endlessly bribed with crisps, just about tolerated hanging out with us, and have been at the end of his tether by 7.30/8 and have to go to bed to unwind. Tonight, he was up until 10.45 - determined to play football with his guests, he played so beautifully with his 5 year old brother just in a naughty little boy hanging out sort of way. I

had never thought I would see this. He was giggling, and smiling, and asking us all for his favourite things, as if he had worked out somehow that this was his special day and he might be in with a chance. He was determined to keep his little eyes open. He went to bed, calm, happy and very tired. What a wonderful day. What a way he has come, I always dread

birthdays, but this one felt like a milestone. What a blessing. I hope this brings hope to everyone. Alison