Have I got this?

The constant mantra has been “we’ve got this”, “she’s got this” or some variation of it.   Reassuring the world and ourselves that we will get through this – the this being Genevieve’s surgery.  That everything is under control.  I accept the hugs from friends & family, smile and tell them that we are doing well and have it all together.  Honestly?  Right now, I am struggling and I would like to hear it in return.  I need that boost from someone telling me that “yes, you have got this” because I am not so sure.

Dotting the i’s and crossing the t’s – insurance referrals are done, conversations with the school psychologist, the Child Life services at Boston Children’s Hospital.  We have a plan for her pre-op day and admission the next day.  We have been making Christmas – the house is decorated, shopping is done and presents are being wrapped.  These are all the things that I feel completely in control of. . .

It is everything else that weighs on my mind.  As I cross things off the list and have a moment to myself, the doubt creeps in – there are dark thoughts that I am just not ready to put into words.  Things that I know no one wants to hear aloud, but it is still there rattling around in my head. Being in control is lonely and I am not sure that I am appreciating the holidays and time with my family.

Am I supporting Genevieve emotionally?  What about Harry?  Have I done everything that needs to be done, everything that I can do to make this situation a little easier for them?  When do we tell her the date of her surgery?  Should she even know that she will be having surgery in just over a month?  Is this too much of a burden on a young mind?  That ship has sailed, she cannot un-know it at this point.  So back to the rest, am I just screwing up and scarring my children for life?

Despite all the research online, conversations with other parents and with the experts that work with children like Genevieve daily, I really feel like I am just winging it.  Following my heart and praying that I am not making too much a mess out of what is already a difficult situation.

So, do I have this?  I really hope so.




3 thoughts on “Have I got this?

  1. Hi Tina,
    I found you through the babycenter group. My daughter was diagnosed with ASD and PVS. I was too crushed, too angry, too sad. My anxiety shot through the roof and I feel my body is in panic mode. I have been doing a lot of rationalizing. A lot of thoughts about my life came rushing in like a flood that is about to destroy a levy. The past and the future flash right before me. Then, I realized how I am losing on the NOW of my life. So many unknown with CHD and so is with life. It is like watching the other shoe to drop. But why my child? Why not me instead? Some days I’m at peace with myself but some days I am a hot mess. No amount of reading, researching can pacify my fears. However, I have been learning about adults with CHD who are living a full life. On instagram, I am following a woman who was born with TOF, she is on her way to being pregnant. People like this gives me hope for the future. I searched the internet relentlessly about PVS. I even found a group of adults whose valve was replaced. I went as far as this so that I know what to expect if and when my daughter would need valve replacement. I went so much ahead of myself. It makes my head hurts but there is something in me that I have to know. My daughter is only 4 and I hope and pray that the medical technology will be much advanced in the future. I wish and your family love, peace, and joy. God bless us all 🙂

    Liked by 1 person

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