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.

 

Expectations. Acceptance. Forgiveness. Moving On.

A simple title for a complex blog.  Should be as easy to do as it is to write, but it is a daily struggle for all of us, no matter your battle!  But while sitting at church recently,then following the service, I think it finally, really, hit me. God sent my son with high functioning autism to me for a reason. To teach me the true meaning of true forgiveness. But it’s more than forgiveness.  After much contemplation, I realized I had to start with expectations, acceptance, then forgiveness.

That day God spoke to me from the pulpit while another lesson was unfolding in real time. Let me give you some background.

My son has had a checkered past at church.  He was asked to leave the pre-school program and was seen by some parents as a disruption to the Sunday school.  This all happened while we were fighting for the school district to do an evaluation. We couldn’t see a psychologist or pediatric neurologist without the district eval. And no one takes your word when you are going through pre-diagnosis. And without the diagnosis, the judgement from others is constant. We were living in chaos, but I wanted to keep going to church.

To keep church a priority in our lives, my family and I put together an option to make church a safe place for kids like mine who have differences. The idea, with full funding included, was blown off by the minister at that time.  Between getting services for my son, my illness and making sure Queen Kong got what she needs, I eventually gave up on church and trying to make a space for my son.  Not God, I felt him with us and prayed to him everyday, but I gave up on some of his people. Ministers in there best intentions to spread the word to the world sometimes forget that Jesus went after the one, not the ninety-nine.

We stopped going because someone in a place of power deemed my son’s needs not important.  We stopped going because we couldn’t get our big idea up and running. A big idea that we thought would make change.  We stopped going because there were a handful of people who judged us and clearly said things about us.  (You have to watch what you say around kiddos – they are sponges and parrots!)  And we stopped going because we were tired and getting ready for church with kids regardless is exhausting.  But really the most selfish reason was we felt judged and less than because of how a few thought of us.

God has been working on my heart about going back to church.  We decided to try again.  We had to really give ourselves a pep talk to make ourselves get ready and go.  The biggest reason we gave ourselves was that we weren’t the problem.  The problem is how others perceive those who are different…diagnosis or not.  The problem is my expectation is that all parents accept children, warts and all.  My expectation is that everyone would agree that these children are important and are worth making changes for inclusion. My expectation is that people would open their children’s eyes about being patient and kind to kids who are fighting a big battle at a young age.  The truth is not everyone can support those who are different…so I have to adjust my expectation to avoid being hurt.  And hurt feelings hinder my ability to be an effective parent and advocate.

So now we are working on acceptance. God doesn’t make mistakes. And quite frankly, what I have learned from my son has made me a better mother and person all around.  And our friends and family who have leaned in tell us how much they have learned and that they feel like they see the world through new eyes. Amen!

So back to this particular Sunday. My son showed up decked out in his most handsome suit complete with pocket handkerchief. After children’s moment, I walked him to class. On the way to Sunday school, one of the older girls told her friend to “stay away from him” and pointed right at him.  I didn’t correct her. I was afraid of what would come out of my mouth if I opened it.  After I sat with him in class and he felt settled, I went back to service to hear the message.  Because after that, I really needed it.

Our minister spoke of Jonah, the reluctant prophet, and how he ignored God’s request to go to Nineveh.  What God had asked him to do was too hard.  He didn’t want to.  He was scared and it was out of his comfort zone.  He then discussed how God works through us for change.  He spoke of grace, healing and how true forgiveness can heal our wounds.  But what hit me was that Jonah did the bare minimum.  Jonah did the bare minimum and that small act changed an entire city.

When I picked up my son after service I did what every nervous parent of a special needs kid does. Immediately asked if everything was ok with panic in my voice. We were told everything was fine, but that there was an incident and then it was very briefly addressed.

Our son told us that the girl who had been told to stay away from him told him to show everyone his underwear. This isn’t uncommon for kids to give children with autism directions that lead to embarrassment or trouble.  We are lucky.  Our ABA therapist has worked hard with our son on managing these situations.  To our excitement, he made the right choice!  He ran from the girls and told the teacher.  In the past, he would have followed through with the request, gotten in trouble and then gone into fight or flight and a full melt down because he wouldn’t have been able to tell his side of the story.

I spent the car ride home with a tight chest and racing heart.  I was in pain that kids would bully my son who I love just as much, if not more, than any parent can.  Then I was pissed.  If this had been one year earlier, the ending of this story would have been much different. He would have been thrown under the bus and the judgement would have come tumbling after.  We would have been left holding the bag.  Instead, the fact that another normal child tried to embarrass him was blown off because “it wasn’t like her”.  Where’s the justice?  It’s human nature to ask that question. That’s what we want when we have been wronged.  I told myself that we are never going back.  And then, my son asked if we were going back next week.  What?!?

I have been avoiding church, much like Jonah was avoiding Nineveh. I didn’t want to go. I didn’t want to deal with those few who are judgmental of my family.  God has been telling me to go back and I’ve ignored him. I have ignored those who embrace my family. Ignoring their constant requests and invitations to return to church by letting my hurt feelings get in the way.

What prompted our return was my son’s constant requests to go back. I prayed very hard and realized that we needed to go back. And then in the midst of deciding I was never going back, God reached out via my son again and reminded me that we just have to do the bare minimum.  We just have to show up while God is telling us to and then we have the chance to make change too.

As I noted in another blog, sometimes it is easier for us to isolate ourselves to avoid hurt feelings.  But now that we have fully accepted our son’s diagnosis we need to teach the world that they should accept him, as well as all children with differences.  That means we have to show up.  We must expect a rocky road to prevent hurt feelings. We have to accept that our path is different.  We have to forgive and move on.  Otherwise, others will keep us from enjoying our life, growing in our faith and being light to the world.  And our son is a light too bright to keep at home!

Moving On