Being a Mom with Cancer and a Special Needs Child

This weekend everyone is reposting the sad news that Joey Feek lost her hard fought, but graceful battle with cancer. I have to admit, I took a hiatus from country music (don’t tell any friends I have left at KASE and KVET in Austin where I used to work) and didn’t know who they were until recently. I read their story and listened to their music and was instantly a mega fan.  They sing so beautifully and their lyrics are so true, I think their music will be around for a long, long, time.

Here is how I found out about this dynamic duo.  With my recent cancer diagnosis I got worried that I was going to find out that the news of my second cancer was much worse. So I did what every doctor tells you not to do…I googled. I eventually googled “Mom fighting cancer with special needs child and toddler” and after poking around I found a story on Joey’s fight.  I saw this gorgeous woman, a charming, joyous toddler and a man that stared at the two of them so adoringly that you could feel the love through a computer screen. I was in love with this family.

Being that this was the second time I was told I have cancer, I knew where this news could go at any moment. The initial outlook was good, but they can walk in at any time with that look and knock you into numbness.  It’s true, when they tell you those words you get fuzzy, there is a strange ringing in your ears and you can’t hear what anyone says except the voice in your head say “F___, F___, F___…”

So I have been following the families journey since October, but there is one picture out of all of them that sticks with me.  The day that Joey came out of her room to sit on the floor and work on sign language with her sweet baby girl. I imagine that she heard her friends and family all working like busy bees to fill the void of one woman.  She hears them trying to teach her little lady and knew that they were trying their best, but it wasn’t just right. I’m sure she gave herself a pep talk, gathered her strength, ignored the pain and went to teach her baby.  Not only was it the chance at normalcy, but I believe it had to be for control. Control of taking care of her little one, of teaching her to communicate with the world, to fight to remain in her memory, and to push Indiana to reach her full potential. Mama’s see even the highest most unknown potential and fight hard to make sure the rest of the world knows their little one isn’t a statistic.

I see that picture and see a Mom that knows that she won’t be there to wipe away the tears. That she is fighting to become a solid memory in her babies mind and soul to keep with her always.

I see that picture and see the worry under the surface that she won’t be there to decide about schools and therapies and all the big decisions to come.

I see that picture and know that under that worry there is a heart that has so much faith that she is letting go and letting God!  It’s such an amazing mixture of emotions that in the big scheme of life, and then eternal life it is actually beautiful.  Like looking at a picture you will see when you are all together in heaven and say “Remember that day? Look how far we’ve come to glory!”

It’s that transition from living on this Earth and to our heavenly home.  The first time I had cancer I could sit there with someone who was who was crying that I might die and look at them, smile, and say “It’s going to be OK if I go Home.  I won’t be in anymore pain.”  And I was actually OK with it.  But I was single.  I didn’t have the husband and the kids. I didn’t have the responsibility I feel now when it comes to making sure that my son has all the services he needs.  I didn’t have a little one that might not remember her Mama.  I just can’t imagine going through it all again with a loving family.

But Rory is giving us a front row seat at the table to see hope, love, grace, pain and healing. Tools that we have all been given by God if we have faith.  This family knows that this pain is temporary. That they will be reunited again.  And there will be no pain.

There also won’t be the pain of judgement in our new heavenly home.  Although it’s hard for me to imagine anyone not loving a child with special needs, the truth is that we live in a world of people with hard hearts. They say ugly things, because they are suffering and want others to suffer too.  Or they are living in ignorance and haven’t seen the beauty in embracing others.  God doesn’t make mistakes.  When you don’t embrace all His children, you’re the one missing out.

I imagine that Joey prayed for her daughter to know God’s love above all others, because there will be hard days.  There will be a day when someone says the ugly “R” word to her. There will be the day that someone judges her ability and hurts her feelings.  There will be a day when she feels so different than  others that she will be so mad she will just scream in pain.  But from what we see from Joey and Rory’s life, they have been teaching Indiana from the beginning that God loves her.  He gave them Indiana because he knew they would be able to help the world to see her light, beauty and gifts.

I think of the scene in Steel Magnolias when Daryl Hanna’s character, Annelle,  is explaining her faith and talking about Shelby at the graveside.

Miss M’Lynn, I don’t mean to upset you by sayin’ that. It’s just that when somethin like this happens, I pray very hard to make heads or tails of it. And I think that in Shelby’s case, she just wanted to take care of that little baby, and of you, of everybody she knew. And her poor little body was just worn out. It just wouldn’t let her do all the things she wanted to. So she went on to a place where she could be a guardian angel. She will always be young, she will always be beautiful. And I personally feel much safer knowin’ that she’s up there on my side. It may sound real simple and stupid and…Well maybe I am, but, that’s how I get through things like this.”

This world lost a beautiful and faithful woman. A woman so inspiring that millions who never met her are grieving her death.  Millions are tweeting and writing about their family, faith and love.  Rory posted a song that was cut from their album called “In The Time You Gave Me”.  It speaks of making the most of the time God gives you. In this small sub set of Mom’s who have kids with special needs who are or were battling cancer, I know she made an enormous difference. She lived out ultimate grace. She let go and let God. And she will be the ultimate Mommy Guardian Angel guiding her daughter down life’s dusty and bumpy roads.  And since she taught her daughter a multitude of ways to communicate, Indiana will always feel her mother’s and God’s love.  RIP Joey Feeks. We will continue to fight for yours and all little’s for love and acceptance in your memory!

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One of my favorite moments when I was “pushing through” to be with my little’s.