For almost three weeks now, we have been posting updates on Amber’s progress to this blog. It’s been a bumpy road for Amber, but the progress has been positive. But it’s also been a bumpy road for us, her parents. Emotional highs and lows, and deep tests of our Faith. I wrote something privately a few days ago describing (in raw emotional detail) one of those low moments, and decided to share to help others understand a little bit better.
Yesterday (Thursday April 5th) was a rough day for me emotionally. I was not at the hospital when her breathing and feed tubes were extubated, and I felt guilty about that. I had slept home the night before with the rest of the family and had some appointments during the day. I know Matt was there and he was good about keeping me well updated and even sent me a picture of her sans facial tubes, which helped but wasn’t the same.
Once everything was set at home, it was time to hit the road. As I’m driving through Hartford, I can’t help but feel anxious about seeing Amber.
Walking from the parking garage, my arms are full of gifts, a bag of food, a second bag of food, a big bag of clean laundry, and my purse. As I smoosh to the back of a cramped elevator, we arrive at Level 3, Amber’s floor. After practically knocking people down trying to get out, I can’t get to our sleep room fast enough to drop off all this stuff so I can get to my girl.
As I’m walking down the hall, and just as I’m about to enter her room, a man with a white plastic helmet excuses himself as he comes out of her room. “I was just in there fitting her with this helmet and we should have one for her soon”. I politely nod and say okay. Then walk into Amber’s room.
She looks good with no tubes on her face . . . but that’s not entirely what my mind and tightness of my belly was focusing on. As I look at her, lying straight in bed, I see the left side of her head kind of awkwardly in the pillow, and the right side shaved with several lines of staples. She’s awake but with her eyes mainly to the right, bubbles pooled in her mouth, and raspy breathing. When she yawns, it’s only the right side . . . and on further inspection, I see that the left side of her face and mouth clearly has a droop. It saddens me. Because even though I “knew” it was going to be a long road, seeing her like this validates just how really long the road will be.
Not knowing if Amber can get back to what Amber was, hurts my heart so much. It is so scary and I hate that there is doubt in my heart. I’m supposed to be strong for her but I was standing there with all these thoughts and emotions coursing through me, and in my mind’s eye, I saw myself high-tailing it out of this room, out of this hospital, and out of CT. What hurt my heart the most? Is the fact that I am a coward.
Self doubt. Doubt in everything. Just feeling low..
But then, when she saw me in her view, and gave me a little right sided smile with an ever so slight dimple showing…all of those feelings that were so strong just seconds ago, fizzled out just a tiny bit. Even though I know there is a good chance Amber will never be as she once was, I’m glad that God is giving me a little bit more extra time with her today.
Oh Caron, I wish I could hug you tight and shush your fears, but all I can do is tell you that the Amber that was is still there and the Amber that is there now, fighting as strongly as you are praying, will bring you as much joy and happiness. Doubt is part of faith. God gave you the strength you have and is with you, right there with you, to carry you when your strength wanes. Each of you is in our prayers.
Our hearts hurt with you, Caron… Thanks for sharing even the tough moments and the raw reality. Stay strong and brave!
Oh Caron! My heart bleeds for you – know that No one is going to judge for your thoughts and i don’t look at you as a coward … I admire you and your strength and strength in your faith. My thoughts and prayers are with you all !
Heather Avery
Caron and Matt. Your courage and strength is a true testimony of faith, and of devotion.
Your words that you share, only bring us all together. To praise every triumphant step. To be with you at whatever hurdle Amber is dealing with.
The love of a true family living with the grace, faith, and love of our Lord.
Caron, my heart breaks for you. You are such an amazing mother and one of the best I know. I’m so sorry that you are you going through this
Caron, I’ve never been in your shoes and I won’t pretend that I have a clue what it feels like to be where you are now. I can tell you however that you are not a coward. There are many quotations about courage, I’d like to share two of my favorites:
“Courage is not the absence of fear, but rather the assessment that something else is more important than fear.” FDR
You have fears of what the future holds, I do too and my fears as small by comparison. You have decided that being there for Amber is more important than your fear. Therefore in FDR’s book, and mine, you are courageous.
“To have courage for whatever comes in life – everything lies in that.” Saint Teresa of Avila
You have the courage, it has brought you this far, it will bring you and your family through. As I found the correct quotation from Saint Teresa my eyes were drawn to another of hers that I feel we all need to remember as well, whether seeking courage, relief, hope:
“You pay God a compliment by asking great things of Him.”
We’re all asking God for great things for Amber, you and all of your family.
Chuck
Caron.. You are the definition of strong and that beautiful little girl will never let you forget that. Head up momma and embrace all those smiles and smirks.
Caron, I wish there were magic words that would ease your pain and heartache, your fears and doubts. Having these feelings does not make you a coward, it makes you human – and a mom! You’re allowed to have these low points, and it’s important to have an outlet for them as they will only make you stronger. We will continue to pray for Amber, and for strength and courage for you and Matt.
Caron and Matt. Your courage and strength is a true testimony of faith, and of devotion.
Your words that you share, only bring us all together. To praise every triumphant step. To be with you at whatever hurdle Amber is dealing with.
The love of a true family living with the grace, faith, and love of our Lord.
Coward is not a word that ever comes to mind when I think of you. You and Matt have shown tremendous courage, and faith though this, and you will continue to for each other, and your family.
Everyone has doubts, low moments, and times they just want to run away from it all.
We love you 💜
Eloise & Elizabeth
Caron,
I hope to be half the mother you are someday. I admire your honesty and think you are an incredibly strong woman for sharing your thoughts and feelings. ❤️
Coward is never a word I think of to describe you. You and Matt have been so courageous, and faithful in how you’ve handled all of this.
We all have moments when we want to run away from it all, but those little things keep us here, and grounded.
We love you 💜
Eloise & Elizabeth
My heart is with you. As mothers we carry it all in our heads, may you find comfort in knowing your family is so loved and supported during this time…sending lots of positive your way 💜
Oh Caron…..
This was the text you were suppose to get yesterday and it did not go through. Weird because maybe I’m suppose to post it here??
I was checking on you after reading Ambers blog about her feeding tube being put back in. It broke my heart you were in pain watching your super hero girl going through this again and being in discomfort. At least we know she is getting the nutrients she needs. This will help her get and stay strong for her long battle ahead.
They say God does not give us more then we can’t handle.
Remembering the blog of your super girl got me thinking. Every super hero has a super MOM and you my lady are Wonder Women!!! Really!!
I said this before and will always continue to say this. I am in love with you!! You are who I strive to be. You are not just a wonderful person but a wonderful wife, mother, daughter, sister, and an even more amazing women!! Truly!
You got this!!! As mom’s we have to.
Holding you in the kitchen that day when I saw you, I really was at a few points holding you up. You were tried and so heart broken. You, even then Caron, you were strong. You might not have thought so in that moment, but YOU were. You did what you needed to do in those moments and moved on. You are so allowed those moments. This sucks and is unfair and very hard.
I Thank you for allowing me to hold you in those moments.
After it was over you knew that you still had/have so much to do.
Amber has such a long road ahead and an even bigger battle to fight. You are her Wonder Women!!!. You, The whole Smith Family are fighting this battle as well. You all have a long road. It’s going to be hard.
Remembering that they have the most wonderful Mom/Wife ever is what’s going to get them all threw it.
When you do not feel so wonderful. Text me. Please. Even if to yell or just cry it out…..but get it out
I GOT YOU!! And YOU GOT THIS!!
I love you Caron Smith!!
I am told that faith doesn’t mean much without doubt mixed in. I have had buckets full of doubt in my recent journey…then faith pops in during the thick of it and my soul rests for a moment. I pray for comfort in the storm. Love, Aunt Jean.
Caron you are not a coward, you have been one of most sweetest woman I know with a hugh heart. Your emotions are raw and completely expected. When you are in your valley, just know God is carrying you out. I’m sure it seems dark and alone emotionally going through this, but many prayers are sent daily and God will do the right thing. Love you and stay strong.
Caron, you are amazing and have inspired me for 25 years. You have a sense of purpose, grounded in strong values that have never wavered. You’ve had moments of uncertainty or self doubt before, and have always been strong to power through.
This is a tough road Amber’s on, but she’ll have her super mom and dad there to support her every day. And we’re here for you. Love you sweetie!! ❤️❤️
Caron keep the faith. I’m devastated by this whole thing! I can’t imagine what you are going through! I’m having trouble dealing with this but when I saw her on Saturday it made me feel better. You just have to believe that we will get through this heartbreaking time ❤️❤️❤️❤️
Dear Caron,
Having read your blog, I can only say how brave you and Matt are in such a very challenging situation! I can only imagine what the two of you are going through! Please remember, you are a mother, and a mother always feels for her child. It isn’t always easy to put on a brave front. You are human and you have emotions that are perfectly normal. I pray for you every day for the strength that you need and for Amber’s health. You and Matt are such people of faith, but you also have emotions. Know that I pray for small miracles for Amber, whatever they might be. At some point, there will be a light at the end of the tunnel. You have lots of love and support from all of us here at St. Joseph School!!!
Our hearts are heavy for Amber and your family, your strength and courage is an inspiration to us all. Nobody would blame you for wanting to check out of your reality for a moment. It sounds like a very human reaction to a difficult situation. We are here for you as well. Just say the word.
The Nash Family
I cry and pray for you all. I cannot begin to know what you are going through. You ARE brave and
ARE strong. Do not doubt that . God is with you and with Amber. My prayers are for her every morning.
My Heart reaches out to all of you in prayer my arms send you hugs.
As I read your day of struggle I see the human side of you as would be with us all then by the time I finish reading , I see the strong mother side of you that will always do what is needed for the family she loves so much God Bless you! Stay Strong