Another fairly quiet day. No Physical, Occupational, or Speech Therapy today, just me and Amber spending the day together. But between meals, G-tube feedings, medications, checking vitals, it’s amazing how quickly the day flies by. We spent some time in the morning coloring together, and watched some Minecraft videos on YouTube together (she still has to explain to me everytime why she wants to watch someone else play, instead of just playing the game herself). And later in the afternoon, we got to take a walk outside, in the sun, with Mem and Pep visiting. A short nap afterwards, then her brother and sisters came to visit.
But during the quieter moments, scattered throughout the day, she would gather up the courage to ask a question or two. Big questions. The Questions. The questions no parent wants to ever have to address. The questions that show just how much your child does understand what’s going on, and how little you can actually shield them from.
What happened?
Why?
Why me?
What’s going to happen?
When can I go home?
Will this happen to my children?
And bigger questions, that I can’t quite bring myself to write here.
And of course, she wants answers. So I do my best to answer, to be honest, but to do so at a 6 year old level – and learn along the way that I apparently don’t give 6 year olds enough credit.
It’s hard. But it is necessary. She wants to know. She deserves to know. And she is showing the bravery and uncanny maturity of someone who understands there is trouble ahead, and is bracing herself to face it, head on. She is still a 6 year old, and she is scared, but it is clear to me that she knows 100% that Caron and I are with her every step, that she is not alone in this. And so a reasonable level of honest detail from us, and a ton of love and reassurance, helps keep her courage.
And her Faith is strong too – I have been saying the Rosary when I stay overnight with her (alternating with Caron), usually after she falls asleep. Caron, though, has been praying with her before she falls asleep. Earlier this week, Amber asked me if I would “pray the Rosary over her, like Mama does”, because she understands that we are asking for God’s help, through Mary, to help her get healthy. She knows that as long as we ask, God will help us.
Possibly most intriguing to me, though, is seeing her take ownership of the things in her control. Today, lunch was pasta with a side of mushy spinach. Surprisingly, she dove right into the spinach, ate up as much as she could. She never would have touched spinach like this at home, so I asked her why she was eating it instead of the pasta.
“Daddy, spinach makes you strong. And when I get strong, I can go home.”
God, please grant Amber strength for the journey ahead. I can’t wait for Amber to come home …
Amber's Way 
we cannot wait either because Amber asked when she have a sleep over…we said soon. As God leads the way…we will follow. hugs&kisses, love (she winked at me today…a few times) pep&mem
I can’t imagine being away from home for over a month ! Hopefully she gets stronger and gets to go home . Have to keep praying for that to happen. She made my day on Saturday when she said uncle Mark to me. It made me smile. Love you guys and stay strong!
I know it’s hard, but she trusts you both enough to ask the hard questions and knows that you will be as honest and kind as you can be as you navigate these waters together. These are uncharted waters and there is no map. Being open to what comes with an open heart is true courage. Love you, Aunt Jean.
Matt/ Caron listen to Dara Maclean ‘Suitcases’. Its uplifting country style Christian song
Matt, really hard questions, but really good questions too. She’s making great progress and will hopefully be home soon. Love you guys!
I am so sad and so sorry Amber and your whole family are dealing with something like this. It’s completely wrong. I know everyone must feel exhausted; emotionally and physically and that’s totally normal but knowing that probably doesn’t make you feel a whole lot better. Amber’s going home; I have no doubt of it. She is an amazing little girl who has already faced enormous challenges and circumstances and she will continue to do that with the love of her family and the skill of her medical team. Stay strong and be brave and celebrate how far you all have come on this journey. I can’t wait for the day Amber goes home! Help her plan for it; what is her favorite dinner? What will she want to wear? What’s the first thing she wants to do? Does she want a big cake?
Ugh….you Matt are the strength your family needs. Being the rock for Caron and the warmth and gentleness to those babes. You Sir are a ROCK. I know your heart aches and breaks quietly because you have no other choice.
You are the base of the tree that supports your family. You break, they break. But do so in Silence. When no one is around Unfair, yes. But they need you so very much Daddy!!! So much a husband, a provider, a protector, and so so so much more. I pray for you Matt, to keep being strong, to keep going, which you will….you have to!! Just know that you have so much support and love behind you: Caron, Marie, Brianna, Amber, and Ryan. You are so strong and powerful in your love and support. Please, if you ever need anything…even to vent, call me. Reach out no matter how it why.
MAYBE even God…to whoever, but do so regardless. I am so sorry little brother.( Yes, I am older than you, but let’s not talk about that now. )
Just know 2000 plus miles is nothing. We’d be there at a moments notice. I love you Matt!!!
She has the mind, strength and determination of a superhero. We’re proud to be your friends, Amber! 💟
At least you can be honest in the most truthful but simplest way
✝️🌸Praying for an anointing of healing upon Amber, strength and peace for the family and the precense of God’s love that transcends all understanding.🌸💜