New normal

Evan is 56 days old.

He has spent 38 of those days in the hospital.

Yesterday, Iz and Craig came up to the hospital to see me.  With Evan still in the CICU, Iz could not see him since they have a strict rule of no children under 3 being allowed in.

It broke her heart.  Over and over again she asked to, “Please…can I see my brudder?  Can I see my baby?”

Ever since that moment, where I told her over and over again, how sorry I was but she just couldn’t, I’ve been in a bad place.

A place in my mind of utter defeat.

I hate congenital heart defects.

I did everything “right.”  I took prenatal vitamins, was in great shape, didn’t do drugs, didn’t smoke, no prescription drugs,  hardly drank alcohol…everything.

I hate that every time I look at Evan – I have mixture of complete and utter joy, love and fear.

I don’t like that I am trying to live my life as normally as possible.  When your normal suddenly becomes h0spital beds, doctor visits, medication lists, vital signs, separation from your loved ones – you realize – that’s  not normal at all.

I’ve talked about making adjustments in our “new normal” as a family.  When I was talking to my friend who suddenly was thrust into a the world of a special needs child with her son that was born with Down’s Syndrome – she brought up the challenges she faces with her child – and mentioned that she feels the same way I do – that our “old normal” was pretty dang nice.

I know people who don’t live in this world – the special needs world or the Heartland – really don’t understand what we’re going through.  And often, don’t know what to say to me – and that’s ok.

Just please – if I complain about being 20 pounds overweight since I’m still carrying so much baby weight – please don’t say, “Well, you have so much more to worry about.”

Or if I mention that my house is wreck and I don’t have time to clean, – know – there’s no need to say, “Of course it is – how do you have time for that with Evan!”

If I say how I excited I am to get my hair done or nails done – please don’t give me a disapproving look

Sometimes, I just want to talk about “normal” things.  I want to have a conversation that doesn’t result in me dissecting every detail of Evan’s care or turn into a therapy session about how I’m coping with all of this.

Because sometimes, the way I cope, is just to escape from it all.  Yes – pretend that I’m normal – we’re normal.

That our life doesn’t revolve around a hospital bed.  That our timeline isn’t dictated by the next surgery.

I know someday – oh someday – there will be a time where we don’t give kisses with hospital masks, where I can hold my two kids without fear, where going home means actually going home and not driving up to a hotel or hospital…

I’m thankful for my new normal – don’t get me wrong.  Evan is perfection.  He has taught me more about my faith and about life than I’ve learned from anyone or anything in my time on this world.  I love him more and more everyday – and that’s why it’s so hard.

I want him to have a normal, too.  Playdates, playgrounds, sports, junk food…all those things that kids live for. I don’t want him to know the hospital so well it becomes second nature.  I just want normalcy for my boy.

Evan is slowly progressing.  He is doing better heart wise but he is struggling with sleep and feeding.  The doctors blame it on the sedation from the surgery and the catheters plus all the sedation he was under for 7 days while he was on the ventilator.  He starts physical and occupational therapy soon – in hopes that his little muscles don’t deteriorate with being in a hospital bed for 2/3 of his life. He is coming back to us slowly – I can finally hear him cry.

I’ll pray for our normal – as a family of 4 – to be as close to “normal” as possible.  For now – I’ll try to pull myself out of this funk I’m in and be thankful for the “normal” that I’m living now.

 

Comments

  1. The new normal takes some getting used to…and it is amazing when you get the old normal every once in a while. It is so hard to go through all of this when you have other kids at home…you never know what is best for everyone and you never believe you are doing the best for everyone (ok…that is what I felt).

  2. Oh girl, I know just how you feel and I am so sorry — I will be praying for your sweet little one. It’s so hard though.