Day 61, An Almost-Perfect Day

What a beautiful spring day today.  The sun is shining, the birds are chirping, the smell of fresh cut grass and flowering bushes are in the air.  It is an almost-perfect day.  Almost.  In another realm this would be perfect because Amber would be a healthy six and a half year old with no cares in the world during this picturesque spring day.  But it’s different now.  Our lives are forever different.  It’s going to take a lot to hopefully, eventually, get back to a somewhat perfect time in our lives.  Where maybe, hopefully, I can really take in this beautiful flawless day with a relief that Amber’s battle is won, instead of what’s looming in the distance.  It hasn’t been simple thus far nor will it be going forward.  I know that, Matt knows that, and you know that.  I also know sometimes Amber feels that way too.  Like today —

Tonight at dinner Amber started to cry.  “I don’t like my life.  I wish I could just be back to normal again.  I wish I could just do things on my own.  I wish I could walk.  I wish I could run.  I wish I could use the potty by myself . . .”

Tough words coming from a six and a half year old.  True words coming from a six and a half year old.  I suppose even Super Amber Grace can feel down sometimes too.  All we can do is reassure her that she will get there and that she’s come so far already.  But that’s hard for a little one to comprehend.  She doesn’t see the progress as it’s happening, she just wants the end result — which I can’t blame her.  I am still in awe at her perseverance.  I personally would have checked out (mentally) months ago.  Sometimes, even for myself, it feels good to let it all out, and I believe that is what Amber had to do tonight.  So with some positive encouragement, a hug, a kiss, and an ice cream sandwich, she was already moving on . . .

9 thoughts on “Day 61, An Almost-Perfect Day

  1. And that’s how it unfolds. Everybody, everybody has a “down” day when dealing with something as overwhelming as this. You hold each other up on the “down” days and keep moving. Amber (despite being extraordinary) is just a little girl; her frustration and fear must be enormous.
    Hugs and ice cream sandwiches are really the best medicine on “down” days.

  2. (((Sending you all LOTS of big HUGS)))
    Keep your head up Amber!

  3. Nothing harder than to watch your child in pain. Amber is always in our prayers, but so are you and Matt.
    May God bless you. May Mother Mary share her strength with you and lift you up.

  4. Oh Amber, you have come so far already baby girl.
    We are happy even in your tears and heartache. We are all just happy to be able to see those tears and heal that heartache. You have so much more to do. Your going to be running, walking, and swimming in no time. For now heal and grow so very strong. We love and miss you so very much.

  5. Amber, keep up the hard work. Sometimes you go two steps forward and five steps backwards, but you will get there. Remember, we are all in your corner and we love you! You are in our prayers daily.

  6. My heart breaks for her in her struggle and you in yours
    I pray for peace for all of you

  7. She will have a lot of those days . She has to look at how far she has come. It’s unbelievable! I’m so proud of her !! ❤️

  8. She’s had to fight so hard these past months. And to have to come to terms with so much at a young age! We cant even begin to know unless you’ve truly been there. Tears of frustration and sadness knowing how she woke up and everything was different. But tears can be so healing and don’t we do them where we are safe to let our guard down? Ambers home is a beautiful place for her right now with all these medical appointments! Where she can vent and share her fear, her loss. Super Amber Grace, you are not alone sweet girl! Our entire school loves and misses you so much! And Jesus cried so it’s ok for us to as well. Tears say more than words ever could!

  9. To a remarkable family full of love and hope. Keep your spirits up because you all lift ours up! You are the super family! We all keep you in our prayers. ❤️

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