Worry, worry, fritter, fritter…
The paed’s secretary called this morning, asking me if I would push Ivy’s appointment back to next Tuesday.
Was Ivy that sick that she needed to see him today? He had a twins’ birth he needed to be at and alot was going on, did she really need his time and attention or could it wait?
I said she was sick.
If she weren’t, did she really think that I would take an hour long drive in stormy weather?
What for?
Just to rattle his cage a bit? Make him work harder?
Ivy is sick.
No, she is not at the point of needing an emergency admission but she does need someone, other than me, who has not slept well in over a week, to cast an eye on her and to treat her.
She does get up in the mornings, quite bright and able to tinker the hours away but after her nap it is a downhill slide into the nights which are full of tears and pain.
While Noah has been inflicted with croup and now asthma as well, his recovery has been short and sweet and, functions normally, despite a two day setback.
Ivy’s temperature is up and down, she has a wet cough and her ears are producing some funky smelling stuff that, no sooner do I put the ear drops in, reproduces at an alarming rate and gloops out like slow moving lava. Her antibiotics are pushed up to the absolute maximum and this is making her vomit, or maybe it is just an explosion of gooey pink fluid, when she coughs too hard.
She claims her legs ache, her throat is sore, she is eating little and drinking little and well, you get the picture.
Having said all of that, she is predominantly okay.
The thing is, she was okay just before she moved into sepsis the last two times and that is what scares me, I think.
Ok is not good. I’d settle for good.
Ok is not great, great would be the best.
Ok is not acceptable for me.
Is that bad?
I don’t want to stress anybody out. I don’t want to make the paed’s day a living nightmare.
I do want Ivy to feel well.
Last night, I was lying with her as she grizzled about her pain, looking at her, holding her little hand in mine, I wondered if this constant illness is going to change her.
When Immy was going through all of this, it was very different.
For a start, I would never have waited on a 39 something degree temp with febrile convulsions. I wouldn’t have to consider family dynamics and when Lily came along (Maddy often came to hospital as a boarder) I had the help of my mother in law. David, a junior at the time, would not have to weigh up his job security over his family and neither would I.
Our paed, who had a good understanding of immune deficiency, supported Imogen’s need for quick access to IV antibiotics. We were usually in and out in a few days, with barely a ruffle to have to smooth over. Yes, there were some scary times but once we got into the swing of things, the girls’ paed was very good at slowing the emergent admissions by heading them off at the pass.
Immy would be discharged and that girl was so easy going, she seemed to transition back into the outside world with no problems. There would be no lag, no five minute breather. We just kept going.
She never asked about or recounted her hospital stays, other than the reflection that she loved the deep hospital bath. Of course, in later years she has asked questions but once answered she moves forward and doesn’t look over her shoulder.
Ivy is a different story.
Since the last bout of hospital admissions she has had an increasing fear of all things medical, which is understandable but beyond that, is the constant need for reassurance; that her old canula site is better, that her ears are okay, that she is ‘very brave’.
She is second guessing herself and her ability to heal.
After we come home or after a long bout of being sick, she takes an equally long time to be emotionally well, with the world. If I were to take her out the day after a discharge, she would not cope, hasn’t coped.
So, I sit in the dark, bowed over her like some old knotted willow tree and I worry and wonder how this is changing who she was originally supposed to be.
Will she go through life always scared and worried. whereas before she may not have?
Will she second guess her abilities?
Will she become the weaker person because of all these years of recurrent illness and what can I do to help her?
I cuddle her and tell her she is the bravest soul I know. I kiss her and tell her she is better. I encourage her to be active when she is well. I distance myself so that she can just be one of the kids.
Am I doing the right things by her though?
Nobody wants to screw up their kids.
I want her to be everything she can be. I want her wildest dreams to come true. I want her to be happy.
That’s all.
If she can be happy then I will have done my job well.
*edited to add, In the end, Ivy’s appointment was only pushed back an hour*
I have had similar thoughts regarding my children’s illnesses. I wonder how it will change them and like most parents my greatest desire is for them to be happy. I believe that we are the sum of all our experiences, good, bad or otherwise. These experiences can be used in a positive way for the rest of our lives. For example we may learn to show empathy, we may learn to be more patient, more accepting of others and their illnesses or disabilities etc. We can support and encourage our children and help them to find the good in bad situations. We can nurture them, cuddle, reassure and love unconditionally to help them evolve into happy, confident and productive people. You do this all the time for Ivy and your other children. What ifs are pointless. No one can guess what our children would be like without these negative experiences. Perhaps there would be other fears or problems to take their place. I constantly worry and my thoughts often mirror yours. My energy sometimes fails as does my ability to cope. I try to limit my worrying to things I can change or things I have some control over. But that is on a good day!! Hang in there. You’re doing a great job!!
She will be happy because she is feeling the love. The love from you and your family. When all is said and done she will remember the hugs and security she felt when she was worried or scared.
She will. And she will grow up to an amazing woman, just like her mummy.
I agree with Kelley- she is an amazing little girl already to have come so far and coped so well.
Hugs…hope all goes well at the paeds.
Oh so many hugs and I hope that Ivy gets more bounce in so many ways.
Did the paed nurse READ the notes on your case before requesting? Wasn’t this the same office where you need to know last week whether she is going to be sick?
I cannot even imagine. But I know you’re doing right.
Goodness Tiff, ‘are you doing right by her’? I can’t even begin to count the things you are doing right for her! Where you are right now is just a horrible feeling place — even when you’re doing everything right. You’re going to worry, Ivy’s going to be anxious — it’s going to feel awful. And not because of anything you did or didn’t do. You’re doing a fabulous job, and so is she.
And no, it’s not wrong for you to not want to settle for OK. I think God entrusted you with Ivy because he knew you wouldn’t settle. I wish I could be a buffer for some of the hurt you’re both suffering, but I know that I can’t be. I know that there is nothing to alleviate that kind of heartache save surviving it, and even that doesn’t completely take it away. And you will both survive it. She’s going to be the beautiful, wonderful soul she was always intended to be. Your love will help get her there, Tiff.
Tell that Paed to just stop his whining. It’s his job, after all, and he is getting paid. Hold that line with him Tiff, and don’t let him wheedle his way out of what is best for your precious girl. I know you’re exhausted Tiff, but just keep swingin’, K? Hope it helps to know I’m in your corner cheering you on.
Kelley nailed it on the head. She’ll remember the love and care from her wonderful family.
And OF COURSE you are doing right by her! You are an awesome parent, who’s just emotionally and physically exhausted. DOn’t doubt yourself.
You’re a marvel.
What they all said. Does the paed KNOW what his secretary is doing? Is it HIS idea to call you and change appointments, or is she taking this upon herself without his knowledge? Because that is a bad, bad thing.
I say this with love: Stop worrying! This is all a part of who she is meant to be and who she will become. Nobody would have wished this for her, but she will overcome. I’m not going to say that she will be stronger or better for her suffering, because that would be glib. This is a nightmare, and it’s natural to be concerned, but just concentrate on the here and now, and give her all the love and support you can. You are doing this already, and that is everything!
And as for the great man? Fuck him.
Of course you are doing right by her Tiff! You are looking out for her wellbeing, making sure she gets the attention she needs (even if you do have to fight for it).
I agree with Tracey hon - she very likely could have been just as sensitive a soul if none of this was happening to her, some kids are just like that. It doesn’t mean that she’ll grow up always scared and worried. She’ll take heed of where/when/how she has to be careful, but she’ll know the signs and be able to do what is needed to take care of herself perfectly well!
You are raising a beautiful, special little girl and I really don’t think you could possibly be doing anything any better than you already are!
LOTS of **hugs** and love to you sweety, I can see how this is taking it’s toll on you, be strong ok? We’re all here for you! xx
Oh thank goodness you still got to see him. Damn receptionist.
Oh Tiff…
You have had your share and then some. Here is to wishing the most peace possible.
Hang in there!
Hugs!
xoxo from NE!!