For all the world this feels wrong.
She watches as I draw up the needles.
She sees me tense.
She has not followed through on our ritual of ‘giving back control’.
Despite having every opportunity.
No places have been nominated, by her,
on her little tummy
and she is already sobbing and hyperventilating
and I know
that tonight is going to be bad.
I ask our nurse if she will do the hand holding.
I’m not sure she knows what she’s getting herself into
but because she is kind and wants to help us
she agrees.
Ivy’s sobs have turned into wails
and I am sweating before we even start.
We, the nurse and I, both try to calm her
but she was beyond relaxing before we even started
and I tell our kind nurse ashamedly;
“when it gets like this you just have to hold her down and do it”.
As I unsheathe the needle the bargaining begins -
“please Mum, please I know where the needles will go now. Please!”
and
“not yet Mum, please, I just need to relax”.
Her eyes dart wildly around the room,
never settling,
never calming.
She is like a wild deer trapped in headlights.
I give her lots of options, lots of opportunities to relax and be in control
but by the time we are at this point
everything is a stalling tactic.
There are no spots chosen
and any chance of control (hers or mine) is long gone.
I apologise to the small girl
and to our nurse
and ask that hands be held because I know that flailing arms are a dangerous weapon
when you have small sharp needles to dispense.
Our nurse does admirably
but Ivy is twisting her body from side to side
and pulling her legs up
and begging for me to not hold her down.
She has begun to tell me that she can’t breathe, that she is choking (a new cry in her repertoire of anxiety)
and my heart breaks with every alarmed scream
and every time she asks for me to stop her eyes bury deep into mine.
My fear is reflected straight back through those eyes.
“Not there” she screams, as I start to clean an area.
“Not there either!”
“It hurts!
It hurts!
It all hurts!”
and it continues like that as I pinch up the small amount of subcutaneous tissue needed to place the first needle.
Two more nurses come -
their faces full of care and concern shadow the doorway
hoping to help in some way.
I am hunched over her, my elbow pinning one tiny hip to the bed
my chest holding her legs
and for all the world this feels wrong,
so wrong.
How can this be what she needs?
How can I say that this is all for her own good?
Finally
the needles find their place
and she rips away from the both of us -
head into pillow,
crying and shaking.
It’s getting harder for her to forgive me these days.
I apologise over and over
both to my girl
and to our nurse
who asks me how we keep going
and if we are getting help for this
and rubs my back
and that is the absolute end of me.
Big fat tears of resignation and failure slide down my face
and rack my body
and I launch into a diatribe of words that make little sense to anyone
especially to me.
It takes a full fifteen minutes of mutual sobbing before the girl slips into my lap
and we begin the dance of forgiveness and comforting.
I rock her
and stroke her hair
and tell her it will be okay
but my thoughts are already moving towards the next night
when we have to do it all again.
I don’t even. Words seem so hollow and empty. I am so sorry. I believe I speak for all of your readers when I say that we are aching with you and hope our aches and prayers and love will give your family strength.
Oh, Tiff, I am so sorry. I had mistakenly thought that being at the hospital at least brought the two of you a reprieve from that. You are both in my thoughts and prayers. Take care.
I weep as I read this………I don’t know what to say except I pray for peace and healing…
Oh Tiff. My heart aches for you.
I wish I had something better to say than “I’m thinking of you all” because it just seems so lacking xxx
I have nothing. Tears. Heartache. But nothing helpful. I’m so sorry.
“Big fat tears of resignation and failure” – resignation? yes; failure? NEVER. Tiff, I don’t know how you keep doing this – but you do and you will and no matter what little Ivy’s immediate reaction is – she knows and will always know who had to do this. Please know that so many thoughts are with you.
I can’t imagine. Not at all
You are not a failure. You never fail Ivy or yourself
Much love
I can’t see through my tears to write properly. I’m so sorry. I have nothing either.
Thinking of you both, wishing you some peace and happy today…xx
You are there for her, she knows that.
You are doing what needs to be done.
Sometimes, that is the hardest thing about parenting; having to pull ourselves away emotionally to do what needs to be done for our children.
You have more strength than I can ever imagine needing.
My love to you and Ivy.
Oh my God. What a horrible experience to have to go thru–every evening….
Holding Ivy and you up to the Universal Healing Power and hoping for resolution that doesn’t hurt so badly.
Oh honey!. You are an amazing Mummy!. Don’t ever lose sight of that. God chose you carefully because he knows how special you are. Much love to you and your family, especially Princess Ivy xxx
You are not a failure. You are amazing beyond words. xoxo
love to you both xxx
Oh Tiff how horrendous for you both
But failure? I don’t think so. Failure would be giving in, and giving up. Everything you have written here shows strength. That despite all that, despite all the challenges and heartache, and every bone in your body resisting causing little Ivy pain, you are strong enough to know that this is what she needs.
I’m 27 with an autoimmune disorder that needs weekly subcut injections. Too chicken to do it myself, my mum can’t do it either. So I have to trek out to the GP every week to get it done and I swear at her & threaten to kick her in the face (she’s been my GP for 20 years so she lets me get away with it). Again, I’m TWENTY SEVEN!
Please don’t ever doubt how amazing you and your girl are. You inspire us every day, and your strength is awe-some.
Is Ivy too little for diazepam? I know it’s awful to think of putting yet *another* drug into her little body, but it could prove to be a lifesaver too.
Thinking of you guys x
You are so incredibly brave and strong and a fabulous mum, one of the best I’ve ever come across.
Seriously you are amazing.
Hope you’re looking after yourself as well as you look after your gorgeous family xx
yep im too full of tears, i wish it wasnt like this for you and ivy, its heart wrenching!
there has to be away to make this easier or another opition….
hugs tiff, wish i could give you one personally xxxx
Crying fat tears with you both, from halfway around the world. My heart breaks for you and Ivy. Sending love and healing hugs xo
Tiff I am so sorry.
words fail me
I’m sobbing
I’m so very very sorry
Oh Tiff, I’m so sorry to read this. What a horrendous experience for you both. You’re an amazingly strong woman to be doing what you do for her.
Oh Tiff, I`m crying for you both, this is just so heart wrenching.
Love to you both xx
Where is there an acceptable solution to this? Of course it feels all wrong but what else is there apart from the anti-anxiety meds that are a definite consideration. If you were to give Ivy a break and trial her off those necessary infusions to give her a little time to recover some composure, it would probably be seen by most as negligent & defeatist, with no promise either, of a positive outcome. So where to next?
Maybe the question needs to be asked of Ivy if she would prefer to be constantly sick, unable to go to school and living at the hospital all the time rather than have her needles at home for her well being. It could help to give her some thought to the possible alternatives without the meds and thereby give her some reason to try again for some kind of coping mechanism.
Other than that, it seems there are no other solutions. For all the world it does seem all wrong, but without any viable or foreseeable options, what else can be done other than what you have become so bravely resigned to. xoxo
I believe with all my heart that one of the hardest, most heart-rending things in the whole world is being a medical advocate for your own child. It is an exhausting, frightening role which more often than not feels both thankless and hopeless… and for all the world wrong.
How could it not?
For as a mum, what is it that you want for your child? A childhood. And a beautiful one at that. One filled with rosy cheeks, laughter, giggles and free of cares.
A chance to just breathe, just live.
So very different from surviving, struggling. Fighting through dashed hopes and failed treatment plans. Scraping together remnants of courage and sanity to try yet again. Because you have to try again. Because you love your child. Because it’s how it is.
And it hurts.
And it is so, so, so not fair.
But I am telling you, Tiff, that no matter how it feels, you are doing well by your girl.
No mum should have to choose between bad and worse medical options for their child.
No mum should have to fear that the medical procedure permission slip she just signed may prove to be a death warrant.
No mum should have to hold her baby down for needle sticks. I just had to do it again recently with my now 10-year-old and there are few things on the planet that I would not choose to do instead…
No mum should have to do these things. They feel for all the world wrong.
And you, bless you… you somehow manage to soldier on and do this every. Single. Day.
Outside looking in… you are both an amazing mum and the medical advocate that Ivy needs.
But you’re right, it still feels wrong and all things horrible.
And I have no answer for that feeling because I feel it myself with my own child.
There’s no reprieve for the medical advocate mum. No rest. Just a constant forward, unrelenting march.
So all I know to do is encourage you, one fellow marcher to another… just keep marching.
And to assure you, that from my vantage point, you’re nothing short of amazing.
Much Love,
~Michelle
This could be a really lame suggestion (and I’m sorry if it has been suggested before), but have you considered using an auto-injecting machine?
I took subcutaneous injections every two days for 7 or 8 years, and it hurts less when you use the machine. It pierces your skin more cleanly, and it pushes the medication in more evenly. It would also allow Ivy to administer it herself, at the place she thinks will hurt the least.
Another thing, is there a reason you always choose her tummy? Can you try her buttocks, or the backs of her arms? Just rotate it around a bit. It will also give the tissue some time to recover.
And if you already know all of this, and you’ve tried it, and it doesn’t work, then I am sorry for being a broken record. You are an amazing mother. Never forget that. Even when it seems it can’t get any harder, and then it does.
oh love
x
Can you find something like the calmbirthing CDs and explain to Ivy that this is something that helps lots of women get through some very painful and scary times, so you think that she might find it helpful for her own pain and fear. And get her to practise when its not injection time so it becomes something she can do automatically?
There is no failure here – just a couple of brave people doing what has to be done in a very difficult situation
Hugs.
All of the above, Tiff. Everyone here has said the right things and yet…we all fall short when you’re going through this. Just sending lots of love your way. You are an amazing person, truly amazing.
My heart aches for you both.
Love and hugs
How awful for you both, just awful.
You must be the best mother in the world to continue the way you do when it would be easier to give in to the tears. You are a pillar of strength and an inspiration to me even though I have never met you.
One day Ivy will appreciate what you have done for her, for now, your readers do.
xxxx Renae.