I let her go.
Ivy went back to school today
nasogastric tube and all.
Some have said I shouldn’t have let her go
but I did.
She’s only being re-fed overnight now and having bloods taken every other day, so why not?
She said to me at 5 am (because we were both having trouble sleeping and all good conversations seem to happen then)
that she was quite excited but nervous too
because she didn’t want the other children to tease her.
I told her I thought that they would all just be happy to see her back at school.
When we arrived at the gate, I think we both felt a little scared.
She clung to my hand tightly, eyes darting from person to person.
Some kids walked by.
Others did a double take and even others walked purposefully alongside her
and then stretched their necks around to see.
Mini rubberneckers.
In the end though Noah took her by the hand and they sat in lines together
and then one of her favourite people - “Ella Grace”
sat on the other side of her.
Two brave protectors – the brother and the friend.
Thank goodness for the brothers and the Ellas in this world.
Ivy relaxed then.
It’s only human nature
to want to know what is going on in someone else’s lfe
and children are transparent and they don’t hide their curiosity.
That is part of their beauty.
A nasogastric tube is like a neon sign in a small country town where not much happens
or if things go on, they are certainly not as public.
It says “I’m struggling”.
At least, that’s what it says to me
but I know that most of the kids will have never seen such a thing
and they just want to understand.
I like that people want to know, mostly -
it feels like a linking of arms, a connection
but just like Ivy, I don’t want her to be teased.
Teasing on top of everything else is straw on an already broken back.
I bet she has a good day though.
She seemed really happy when I left
and happiness has been in short supply lately.
Last week she sat on the bench of my kitchen island and cried.
Big, long sobs
with tear tendrils coursing down both cheeks.
I let her go and she cried for over half an hour.
When she’d finished, her tears now just the hiccups of resolving grief, I asked her if she knew why she was upset and she said
“some days I just feel so sad and the tears need to come out”.
That may have been my undoing for the rest of the day.
I suppose it’s a good thing that she can express how she feels
but it’s still hard to hear.
She’s quite tiny at the moment.
Just 18 kg.
The refeeding syndrome has taken a long time to get on top of
and the kilo that she managed to put on last week was lost
after a spectacularly bad night on Friday
where she went into some kind of fluid overload and couldn’t breathe.
Being on high alert at 2am is not a pretty sight in anyone’s books.
Thankfully everything eventually settled
but the trade off was the loss of her weight gain.
Bad times are just incredibly bad and a kilo might not seem like a lot
but in Ivy’s world it is.
It just is.
The thing is she’s at school today and I’m going to take that as a positive.
It’s a three needle day and so home is going to be heavy this afternoon.
A day at school is just what she needs.
I hope she has a fantastic day.
Love. xxx
Beautiful Ivy, I hope you have an amazing day at school and that your classmates are caring and kind. Marita
I’m thrilled she got to go to school today
Hugs
I shouldn’t have read this at work as I’m all teary – the thought of anyone upsetting your precious girl, the thought of her sobbing because she’s sad…. its all so much for a little person to have to bear. I hope Ivy has a wonderful day at school today and forgets, just for a few hours, that shes sick xxx
I’m so happy Ivy got to return to school today. I hope that her day is fantastic and that she is able to attend for a long, long time.
Your Ivy’s will is an amazing testament to her strength and determination. She gets that from you and her father, you know. You have yourself a wonderful girl–but you already know that.
Much love.
Such a difficult time. I have said it over and over. I have wished so hard so many times – that Ivy and your family did not have to deal with anything like this. But then, I would never have ‘met’ you in our online lives. Still, the wishing and hoping goes on for you all xx
Still wading through the literature for you. I KNOW I saw something about refeeding and GF….. I wont stop looking until I find it…promise!
God love her friend and brother for being her protectors.
I hope Ivy had a really fun day and was surrounded by love.
Hope you did ok today too tiff xx
oh I hope it was a great day xxx
I am pleased that Ivy has gone to school as well Tiff, Moments of normality are precious. xx I smiled when I saw Zelda’s comment above me, I see my friend Z is researching for you I am pleased about that as well. LOVE
So happy the girl went to school, normal smoothes the bad 3 needle days and gives you both some happy memories
we all need protectors like Noah and Ella in our lives and i’m so glad that Ivy has hers, they are worth their weight in gold, invaluable in every sense.
“some days I just feel so sad and the tears need to come out”.
oh so true. Ivy has a wise head on her young shoulders and she’s absolutely right, some days you just need to shed those inner feelings and let them flood out of you via tears – better than bottling them up.
don’t listen to the naysayers who say you should do this or that or not do that or this – YOU are Ivy’s parents, you know, on the whole, what’s best for her; there will always be people who disagree with whatever choices you make, let them, just don’t listen to them.
~x~
Today was a good day because, for a while, Ivy was able to feel like just another kid. Sometimes, that’s all they want. x
I hope you had a wonderful day Ivy xx
I am so pleased Ivy was able to go to school today and hope the after school is not too difficult for you all.
Love, Dian
Hi,
I hope Ivy had a good day at school today,
I saw her and just thought of how brave she is,
and Noah (in my view of it all) is a brave little soldier aswell just for sticking up for Ivy,
I thought it was really cute 4 weeks ago when Noah and Ivy were in the little cat hoodies and pockets playing together.
I can only imagine that at our school a tube would be considered nearly super hero status and all the kids would think you are like cool.
I hope Ivy has had a great day (and the 3 needles are over and done with now).xx
Noah and Ella are such wonderful people, just what the very wise and strong Ivy should rightly so have in her life.
I think the N/G tube should give her Hero status… after all it means that Ivy doesn’t have to taste icky foods that kids don’t like, that are so good for them.
Hope that she’s up for another day of school tomorrow.
You make th right decisions for your family Tifff, no matter what anyone else says or thinks.
Funny, we have an Ella Grace here too; she is Quite hard to manage, so I’m glad yours is better. Xx
It is good she got to go to school encased by her protectors .
It must be so tough wanting to be normal and just like all the girls , knowing her life is far different.
For you too wanting the same thing.
Three needle days , she is a warrior . I think of her always nothing seems so bad in perspective .
Trish is right. This girl, she is a warrior.
It broke my heart when she said that, that somedays she just felt like crying and crying. No little girl should feel that way, ever.
I think sending her to school was right; after endless weeks of having to be so much more than a six year old girl, spending time with kids who see the world so beautifully is just what she needs.
Praying she did have a fantastic day adn that you did as well. She is tiny! Sammy is just a tiny bit bigger…. I forget when her birthday is. He is about a kilo bigger than her. Little tiny miracles these two…..looking forward to hearing how her day was
I’m so glad she could go to school. I hope the other kids worked some kid magic and she had a wonderful day.
The tears are a good cleansing thing for her, gosh she is wise for her years….sad that it is due to her burdens. Ivy and her siblings are going to make the best ever people due to their experiences and parents. I wish I could know them in “real life”. I wish I didn’t live down South and could know you all….I’d just know you and I would get along!
Sending grow vibes to Ivy. Guess that’s a silly comment, but letting you know her health and growth are always in my mind.
She did have a fantastic day. Came out as bright as a button, with a huge smile on her face.
What an amazing little girl and an amazing mum and carer. I just saw the last comment and that is wonderful. So happy that she had a good day. Fantastic that she could go to school and have a really nice day. Praying for you that things settle down and that she will grow.
So happy for her that her return to school went so smoothly and began with those two gorgeous guardians protecting her.
I’ll bet her peers hailed her as a hero and Ivy was able to satisfy any curiousity and questions admirably.
I’m sure her return to school will help to heal her sadness somewhat and hopefully she won’t feel so overcome for the tears to tumble out. xoxo
Much love xoxox
Hope Ivy had a great day at school. Usually the kids at Bellbird are very accepting, yes you do get the curious stares but they don’t seem to pick on the kids with a disability or illness. hope ivy keeps well.
They are Renae. They are a lovely bunch of kids and I am so glad that Ivy and Noah can go there.
So pleased she had a great day! I love that she has Noah and Ella on either side of her! She blows me away with her maturity – sometimes the tears do indeed need to come out! Sending the tightest of hugs from Trinidad for all of you- that brave girl and protective brother in particular, and not forgetting their incredible mother!! xoxo
So did it go okay?