Friday, March 3, 2017

Hand prints on the wall

I wish I could say I was as strong as I once was, that I do not falter when I step but those would be lies. For six years I tucked away 2 years of chaos, 2 years of fears, 2 years of tears. We've lived in the moment, we've lived in the laughs, the fears, the tears. Tucking away the first 2 years of her life, never forgetting but not needing to worry about it anymore. The chances of another surgery were unlikely,so why focus on something with such a minute chance of happening? So I have watched my beautiful daughter grow into a beautiful young lady, listening to her dreams of being a baby nurse 3-4 days a week and an artist the rest of the week. I told her if she wants it, she can have it, all she has to do is reach for it and it is hers.

So now here I am, wondering if I started hoping to soon, something I never allowed myself to do when she was a baby. Things were to uncertain back then to dream to far in the future. But here we are, things were certain, as certain as what was you or I,or so it seemed. The hope I once felt is slipping away from me, and I am stuck in a perpetual sense of anxiety and fear, with the occasional bouts of anger mixed in. Never in front of the kids mind you, but there are times I sink down to the floor clutching my chest, counting my breaths, humming a soothing lullaby, anything that will snap myself out of state of panic. Unfortunately it usually ends in tears, big fat ugly, sobbing tears, that wrack your body, that leave you feeling raw and vulnerable. Once the tears have passed, I pick myself up, ashamed I have let myself become over emotional, when she is still alive and well.

 Yet that is the thing, the sense of foreboding is I don't have much time left with her. To many, you will think me saying something like that is a curse, to those of you who have lost will tell me not to say such things. Yet I am telling you this is just a feeling that sits with me, it is a long story so I will keep it short. I have had dreams for years about Lily's life and how it would be. I even dreamed her father and I would divorce and that there would come a time I would yell at him in a hospital room, telling him he was the reason she was there, while my new husband was there with me.

Lily's hand print from my stairway wall
That actually came to pass, it was when she was hospitalized for her kidney infection. I can give you many instances when this has happened, dreams becoming reality.It would just take to long. There is a point to this story, hang in there. To the left you will see Lily's hand print, we did this at a Hopekids event, I have one for each of my children and it goes up my stairs, I love it. Well, the other night I was walking down the stairs and it fell off, only to flutter to my feet in front of me. It left a really dark feeling in me, which I ignored, turning around, hung it back up, and continued on. Well, when I went to go back upstairs, sure enough, it had fallen off again.

Now, 6 years ago, something like this happening, would it have disturbed me, yes, a bit, but I would have let it be. 6 years later, I don't remember how to pull myself up by my bootstraps, and something as trivial as my daughters hand print falling off the wall, sent me into a tailspin of emotions.
Lily's hand missing from the wall line up.

I was left looking at the line up of my children's hands, feeling as if my daughters just jumped out of the line up. Now I know that sounds irrational, that is the crazy PTSD talking, but that was exactly how I felt, and oh God, bile rose in my throat. I wish I could say I was stronger.... I wish I could say I didn't falter in my steps.....but falter I did and strong I was not. I had my moment...I broke down, fell apart, but then pulled myself back together.

So today at therapy I brought this up and my therapist didn't brush me off, She listened to me and said she understands what I am saying of premonitions and such, because she's experienced moments of them too. But she put a spin on it and this is why I love her, and why you will too.

She said, "Jenna, do you think maybe it could have been a sign in, here is a friendly slap from Lily to remind you it has been almost a month since her appointment and you haven't heard anything from cardiology?' Maybe it was just Lily saying, "Mom, please advocate for me, do what you do best."

So I did call cardiology today and left messages and text cardiology to find out Dr.R was in procedures all day. I know they don't see her as a high priority case right now, but Lily's heart was fine back in August 2016. 6 months was all that it took for us to flip so suddenly, and as Dr.R knows, she can backslid further in a blink of an eye. I have to trust my instincts, which are very rusty, add to it she's not with me all the time either, all I can do is stay on top of clinic to get her to cath.

So still, no date until cath, but I am hoping we will have something by the end of next week. I don't think my anxiety can handle much more of this.

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