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.

 

#ChronicPain Theatre

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Mrs.  Musick’s Spa and Theatre 

I have dealt with chronic pain for a myriad of reasons,  but for today I want to focus on how chronic pain can strain relationships,  but can also lead you to fun times  that can bring you closer together.  When the stars are aligned just right you can find those special moments.

Another thing that friends and family know about me is that I have always loved a long,  hot bath. When I was single I rented a two bedroom apartment for the bathtub alone.  But when you have a preschooler and a toddler it isn’t always convenient. You either grin and bear the pain which makes you Mommy on the verge.  Or you take the bath and put Netflix on full tilt so you don’t hear your husband having to do it all and literally simmer in guilt.

Recently,  my husband took our preschooler to run errands while the toddler napped.  I immediately headed for our 1960’s bathroom that I have turned into my tiny spa to relieve my back and nerve pain.  30 minutes later The Queen woke up.  When she wakes up she yells from her bed “Mooommy,  where arrreee yooou!” in her funny little toddler accent.  I fire back,  “I’m in the bathroom… come heerrre!”.  This goes for a couple rounds until she finally caves and comes to see me.  Most likely she assumes I have milk,  snacks or a packet.  She walks in and does a quick survey of the room.  Candle,  bubble bath, smell good,  kindle/movie,  snacks…yup, she decided she was in. With not a bit of hesitation she jumps in and we watch “Sleeping Beauty” or something. We also had a tea party and talked about the nativity scene nativity ducks I bought for the holidays.  We had soooo much fun, mostly because I was able to do all that with little to no pain.

You see,  I had lost some of my bond with her after my recent surgery that had me in the hospital for 7days and in bed for weeks.  And now we were laughing,  playing…all the things I couldn’t do recently.

The next weekend we are doing the typical things working parents need to do…balance the checkbook,  clean,  laundry,  etc. when my toddler grabs me and says “Mommy,  movie,  bath?”

Uh,  Yes!

We watched Mulan,  had a tea party,  and made bubbles.  It is one of the few times we spend girl time together and pain free time together.  It’s like my son and I’s movie and popcorn time.

Those who deal with #chronicpain understand that finding common ground with your family when you feel like they are constantly making concessions is gold!  It can be the tiniest things like movies in bed or chatting in the mini van when they are sitting third row and I can lay flat with my heating pad. They think it’s hilarious that my head is so close to them.  It also made it convenient to hold my son’s hand when he got upset the first time he watched Benji on a road trip.

I grew up with a critically ill father, and I’m not going to lie,  it was stressful.  But there were a lot of things he and I got to do that my friends were jealous of.  During my senior year of high school I would go home to a yummy lunch, made by my Dad,  and we would watch Days of Our Lives and laugh about Marlana being possessed. He even served green grapes one time to represent her eyes during her supposed possesed times.

I hope that my kids will look back and see the good times in lieu of the bad.  I loved my father’s  creativity to help where he could and I hope I can do the same for my family .  Just like #chronicpain theatre.

 

 

#MusickMemories: Christmas Edition

Christmas 2015

It’s not Pinterest Pefection, but it’s progress!  The last two years this had no mantle or decorations.  Success! (Even though some of the lights on the new tree went out…whatever.)

Oh Christmas.  A glorious, but stressful, time of year!  However, when you have a child or children with special needs it can be a different kind of stress.  Shopping, cooking, preparing for family and making sure your work is done is nothing.  Going off schedule, the anxiety of gifts, seeing favorite cousins, aunts, uncles and grandparents can be more than their little hearts and heads can bear.  The sensory overload, meltdown’s and regression happens 10 fold and can cause Mommy and/or Daddy to want to curl up and cry.  I’ll give some top moments from our Christmas at the end, but here is a little background.

This time last year “Fire Ready Aim” was recovering from surgery to improve his sleep and I had type B flu and was quarantined in my room…literally. FRA was really struggling as he was pushed out of yet another school for the second time in 3 months and our sweet babysitter turned into a nanny running a “home school” from our living room.  She experienced the pain of seeing our boy be made fun of by kids, being shunned by other families and even being screamed at by an adult at a public park.  He knew the schools called him bad as the kids constantly reminded him.  To this day, when we drive past one of the schools he will say “I had to leave there because I’m bad” and I usually drop whatever I’m doing to make sure he understands it wasn’t his fault and that it led us to the RIGHT schools.

This season was much better.  Recovering from surgery hasn’t been a breeze, but Amazon and my husband helped to make it a little easier. It was also smidgen better since FRA has improved his social expressive speech so at least after a fit he can let us know what it was about and we can try to work it out. We didn’t put any gifts under the tree…the anxiety caused by the unknown was more than he could bear.  We didn’t push the “Santa is watching” message, because the literal interpretation for him is scary.  We were able to keep more days on schedule because of our amazing school and wonderful ABA therapist.  And now that I have various online support groups/resources like these, I am able to get tips from parents that help our son and us. As parents, we have a lot of room for improvement in 2016, but we are definitely more prepared than last year.

So here are the favorite #MusickMemories from Christmas Eve & Day 2015:

7. Daddy woke up around 4:30 AM on Christmas Eve to make sure that our kids could see the Santa at Northpark Mall in Dallas, TX, which is a big deal!  It’s become tradition and the pictures are worth every minute, even though the stress of dolling up the kids and praying they don’t destroy their outfits can put you over the edge.

6.  FRA telling Santa that he would make him a sandwich.  Santa asked him why no cookies to which he replied “Because sandwiches are delicious!”  Being a budding fashionista who loves accessories, he then questioned his belt and other accessories.

5.  Queen Kong not being scared of Santa and telling him she wanted a kitty.

4.  Our extended family loving on our babies a little harder this year knowing they survived a tough one.

3.  The addition of two super cute kittens that are in danger of being loved to bits. One of them has super patience and has become the Queen’s baby and has allowed her to push her around in her shopping cart.

Kitties

2.  FRA cuddling up to me tonight and letting me know in 5 year old terms how grateful he is and how much he loves us.

1.And FRA took first place during Christmas Eve service.  Recently, he learned about Hanukkah which opened up the conversation about the difference between Jewish and Christian beliefs.  I found a book with a CD we got from church that focused on Easter.  He listens to it over and over, every night and we have discussed it in detail.  When he has interest in a subject he will question you until he is satisfied you have told him EVERYTHING.  My nephews were sitting in the pew in front of us and FRA announces loudly “Did you know Jesus got screwed?!?” They all bent over laughing into their hands which further confused him.  Being worried he would yell it again, I whipped out my phone and googled “crucifix” and quietly explained why they call it crucifixion and not getting screwed to the cross. God bless him.  He even took his first communion and prayed to God to let him know he loved him.

I hope you had the little moments that make it all worth it. Let’s start seeing some comments!  #WorkingMoms – how do you make it easier this time of year? #SpecialNeedsParents – how do you reduce the stress and help prep your child for success during holidays?  #CancerMoms – I hope you had all the support you needed during the holidays.  Let others know what was or could have been helpful so that those supporting a friend or family member can do the little things that help.  Much like our fireplace, our year and holiday season wasn’t perfection, but it was definitely progress.  It takes putting it down in this blog to see that, so tonight I will count my blessings.

Now go to bed – the mess will be there tomorrow….

What would Martha Stewart say???

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With Christmas fast approaching and “Fire, Ready, Aim” being 5 and now REALLY understanding Christmas I had 24 hour to get it together.  Don’t get me wrong, I had a list, checked it twice, removed stuff that I realized in the end would drive me crazy due to 100 pieces or the piercing sound it creates and, of course, used my lunch breaks to get it together on Amazon. But it still, unfortunately, required me to do a few visits to the shops.  With FRA’s (my son with autism) need for a COMPLETELY silent house for sleeping there is no way to “just do a little bit each night” as someone once told me smugly. Solution? My poor husband did a 24 hour trip to/from his Mom’s house who live about 4 hours away.

After I slept in a little bit, because autism Mama’s need fuel, then took a quick bath, because chronic pain requires you to unfurl, I made a list and was ready to attack (after 4 coffee’s)!!! First, I dragged everything out of the hiding places to make an inventory.  Then from 12 PM – 8 PM I shopped…which took a little longer than planned.  I live literally across the street from my parents house and we have  lived in the neighborhood since I was born. I can’t go anywhere without seeing someone I know and I can’t pass up a good conversation!  Especially when I can talk to someone without 2 preschoolers dragging everything off the shelves and tugging on you saying “Can we go?”, “Can I have this?”, “But I need it!”, “When are we leaving?” and the one only mothers of kids with autism/aspergers can appreciate “Why is she so short?”…oh, the joys of complete unbridled honesty.  But I digress.

After a super long, and sadly enjoyable, trip to the grocery store my card was declined. Turned out, they weren’t used to me making so many purchases in one day that weren’t online – ha! Once I dragged everything inside, put it away, then took my pain medication I had to organize everything in piles.  This required another shot of caffeine and streaming Love Actually from Netflix (for the Christmas spirit)….followed by 3 other movies recommended by Netflix.  I then had to YouTube how to make a big bow for that ridiculously large bear in the corner that my husband got for Queen Kong.  The rational side of me knows it will get in the way, but the Daddy’s Girl in me overrides it by seeing how sweet it is that he wants her to have it!  OH! And don’t forget making deviled eggs and mini sweet and salty cheesecake bites for our first family Christmas celebration the following afternoon.  Am I the only one who tries to do TOO much? I mean, we are women.  Working women. You know, #WomenCanHaveItAll! <sarcasm>

Finally at 4:30 AM it was time to sleep before the kids and hubs came home at 11 AM.  And then it happened…the beep.  The beep that sent our Boston Terrier into hysterics.  The first one I ignored, but it took 15 minutes to calm Maizie (the dog) down.  The second one came right as I was dosing off and made Maizie even more upset.  The third required me to drag a chair around the house and remove the fire alarms.  The fourth time I finally found it. A dying carbon monoxide detector in one of the kids rooms.  I made the mistake of hitting one of the buttons which sent the dog over the edge!!  I FINALLY convinced Maizie we weren’t under attack and went to bed at 7 AM.

The point is, long ago, in my single super organized days, when I imagined being the Mom of little’s I thought I would have a room like this to be so organized that I could do holidays with ease!

Dream Santas Workshop

Picture from Houzz.com

That room in our house which had the potential now has a “child proof” cover on the door handle and we have it under lock and key.  It actually serves as the place where toys go for timeout and where we quickly put things when we are frantically cleaning before someone comes over.  #sigh

I know I’m in “the days you will miss one day”, but right now it feels like I will be looking back “lovingly” at a 5 year hurricane.  It’s exasperated by not having enough time, being in constant pain and fear that cancer will come back.  We are still fresh off my second round with cancer/major surgery and still mourning the diagnosis of autism.  Each of the those diagnosis’, especially contained in one year, carries the feelings of loss. You watch other families and see the things they can without little thought. Go to the grocery store without having to prep for hours about the noise and purpose of the trip.  Going to a birthday party, which again, takes a week of discussion and careful planning so your ABA Therapist can come to assist him through interactions other children never have to even think about.  The meltdowns over slight changes that leave you feeling angry and sad.  Angry because it’s so frustrating to try and calm someone down over something you think is silly.  But sad, because you know he is coming from a place of fear and is still too young to express it with words. The isolation because people don’t always want to deal with your families “special needs” at their house, a special event, their vacation home, etc.

My little family loves each other fiercely. My son and daughter still run towards each other and bear hug when they see each other at their day school…every day!  But the advice given with the best of intentions from others cuts like a knife.  So I just smile and nod so I don’t scream “YOU DON’T GET IT!”.  My hope is this blog will help us find other families dealing with the same situation.  I also hope that it will help those trying to support families like ours on ideas of what to say or do.  The truth is we aren’t just isolated due to our situation, but sometimes we isolate ourselves so that we don’t have to be rude and say “You just don’t get it and I don’t have time to explain it to you”.

I’ll sum it up by saying I’m mourning the life I envisioned and am doing the best I can….even if it takes me all day and night with a skitzed out dog at my side. #ThereIsLoveInOurMess