Additional Needs

Rainbow’s Return – The truth of the matter

22nd February 2016

rainbowsreturnI’m feeling a bit shit.

I remember being told back in November that this time would come.

I remember being told that once it was all over I would come back to earth with a bump.

At the time, I didn’t believe them… I mean, I wouldn’t be anything other than over the moon, wouldn’t I?

Now, I wish I had paid more attention to what was being said.

I love having Rainbow home.  I love the fact that she made it through everything but what a life changing event we have been through. 

I find myself in tears sometimes.  I generally can’t explain them either.

Rainbow spent 3 months in hospital, we had 6 hours to get used to the idea of her coming home.  It was a shock to the system. 

We spent 3 months travelling back and fore the hospital while juggling the older 3 children.  That journey was the last time we would do it. 

I had medical back up a few minutes away for 3 months… now it’s 30 minutes away or on the other end of the phone.  It’s up to me to do what is best for Rainbow…

The pressure of ensuring she thrives at home feels immense. 

The pressure of making sure I remember all of her medication is huge.

The pressure of remembering her appointments is massive.

I love having my baby home but I’m feeling let down.  Back when we were told Rainbow needed surgery they said we would feel different once the journey was over.  That we would potentially feel lost.

In the last 6 months, we have been through so much. 

We were told our baby had a problem with her heart.

We were dismissed when I worried she was in heart failure.

We worried when we were told she was in heart failure.

We were told that she would need open heart surgery.

We kept going for 6 weeks while waiting for surgery.

We handed her over to the surgeons.

We sat by her bedside while forever wondering if we would ever see her awake again.

We thought we were going to lose her.

We were told she has a 22q Deletion Syndrome.

We found out she may have other problems but the full extent may not be known for many years.

We were told that, after 13 weeks and 1 day, we could bring her home.

Now, I’m here, trying to pick myself back up and put myself back together.  Trying to, finally, process everything that has happened because at the time, processing everything is the last thing on your mind.

I think it may just take time, to be honest.  I don’t think I’m going to find a wonder cure for the way I am feeling. 

I am feeling a bit shit…

1 Comment

  • Reply
    Kim Carberry
    24th February 2016 at 8:58 pm

    It will take time….You have had a shocking time over the last few months…I felt a little like this when my girls came out of hospital. Sending the biggest of hugs! Things will get better x

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.