When One Day Comes! My Eating for Health Plan.

You know those clothes in the closet? The ones that you bought 10 years ago…the classic piece you spent a little extra on? The little black dress that has the Jackie O. vibe? Like everyone else, I have that piece of my closet designated to “one day”.

When I decided in October, after my surgery, that I was taking full control of my health I set my eye on getting into the little black dress. I didn’t want to worry about the numbers as those have never been on my side, but a piece of clothing from yesteryear. So I did some research, ordered my Plexus products and began what I call an 80/20 plan.  I decided not to plan on being perfect, but plan for exceptions so that I didn’t bash myself for failing.  I eat a chocolate honeycomb from Sprouts everyday. I eat dried fruit instead of candy. I still drink a Coke Zero everyday. It’s a work in progress.

In lieu of the cheats, ONE DAY CAME!!! I can fit into my little black dress. The zipper went up with ease. Due to 6 surgeries and c-sections that have destroyed my stomach structure I will still have to rely on spanx, but who cares!!  I hit my goal!

I remember trying that dress on and looking in the mirror and thinking “It will never happen. My body has been through too much. My hips have spread. Stomach muscles have been cut multiple times.” But I did it!  And it has renewed my spirit. I hang it front and center in my closet everyday. Not to try and be skinny and perfection. But to know that I can be the best and healthiest version of me to date that I can be.

I am still working on always varying my plan. I’ve started eating one mashed garlic clove for my immune system. I have added a little seaweed each day. I’m still learning to brew Kombucha. I’m learning how to prepare different foods – even how to cut a mango! I hope my daughter will read this and not think it is the ravings of a 38 year old, but of a woman who sometimes hears the same voices from high school in her head telling her she isn’t small enough. That I’m too big to love. That I don’t get “picked” because my size. All I needed to be to be happy with my body was to be the best version of me to date and to do it in a way I can feel good about.

I would love to hear what works for you. Let’s work together and keep each other motivated!

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

Brewing Kombucha. It’s Rookie Season.

Brewing KombuchaI have become a big fan of Kombucha. I know I’m late to the trend,  but I like it now, so better late than never!  What is Kombucha you ask? Kombucha tea is a fermented drink made with tea, sugar, bacteria and yeast. Although it’s sometimes referred to as kombucha mushroom tea, kombucha is not a mushroom — it’s a colony of bacteria and yeast. Kombucha tea is made by adding the colony to sugar and tea, and allowing the mix to ferment. The resulting liquid contains vinegar, B vitamins and a number of other chemical compounds. – The Mayo Clinic

I feel like it has been a big part of my recent weight loss because it aids digestion. This improved digestion will also lead to improvements with my immune system.  I can tell my immune system has improved a little because my joint pain has decreased.  I have noticed by detoxing my system, I can tell what foods cause joint paint like, you guessed it, sugar. My joint pain isn’t 100% better,  but detoxing and keeping my gut in balance has kept me from having to use steroids.  I also feel my energy returning since surgery faster than ever.  So I consider that a success!

Here are reasons to drink Kombucha:
1. Improved digestion
2. Weight loss
3. Boosts immune system
4. Additional probiotics
5. Detoxify the liver
6. Reduces stress
7. More energy
8. A bunch of other stuff about improving the alkaline balance in your body
9. Can help you kick soda habit (I am working on this)
10. Yummy!

I had heard of Kombucha years ago,  but thought it was some hippie fad.  I then looked at the price a gawked!!  $3 dollars a bottle!  So I passed.  But with my recent push to health,  I decided to spend what I would spend if I was going to the doctor or getting a prescription for an ailment.

I have tried various brands and flavors and have found two favorites. Holy Kombucha and Synergy.  I read the ingredients and became curious on how I could make this drink myself.  Especially since we need every dollar since our medical and therapy bills are so high. I would see 2-5 ingredients only and thought easy, right? My recent juicing concoctions like the juice I made that tasted like a Moscow Mule made me think I could do good things.

Well,  it’s a little more complicated than juicing. You have to brew and ferment to create this concoction.  After some research on starter kits,  I bought a highly recommended starter kit on Amazon from Get Kombucha.  They have great videos resources and send you everything,  down to the organic sugar,  pH tester sticks,  loose tea,  gloves and more.  You must have your own 1 or 2 gallon container.  I saved 16 Oz bottles from Kombucha I purchased at the store to divide the batch and do the secondary fermentation later.  (I have a thing for bottles and jars.  Drives my husband crazy.)

Today I am brewing my first batch.  I  wanted to document the process so I can share with my friends and family.  The beauty is that I will be able to make and share starter kits so you can do it too! I want my friends and family to join me so we can support each other.   This will be an imperfect process,  but as I like to say,  it’s progress,  not perfection.  And that is better than doing nothing!

Here is everything you need to start:
Filertered or Spring Water
Tea of choice
Sugar (Organic preferably)
SCOBY –  Symbiotic Colony Of Bacteria and Yeast. They say to name your mother SCOBY.  I think mine will be Big Mama as I will be making baby SCOBY’s to share with my friends.

The steps include:
1. Bring 26 Oz of water to a boil.
2. Add tea 5 tablespoons of tea.
3. Strain out tea if you used a loose blend.
4. Sir in the 2.5 cups of sugar.
5. Pour into the 2 gallon container and wait for it to become room temperature.
6. Pour the SCOBY and starter tea (this will come from Big Mama) into the room temp sweet tea and wait.
7. Start checking the tea 4 days later and keep testing until you reach the desired taste.
8. I will do a secondary fermentation to add both flavor and more fizz. I’ll do another post on this step once I complete the process in a couple weeks.
9. Save your SCOBY and 2.5 cups of the Kombucha in a jar. This will be how you make your next batch. Take the baby SCOBY that grows from this process and share in the liquid with a friend!

Here are some pictures from today:

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Update: I checked after 4 days and my batch needs more time!

I was so nervous about the process I watched a ton of videos on YouTube this morning. But so far,  it’s been easy.  You must make sure all your utensils and containers are very clean.  I used my kettle to pour boiling water on my supplies.  I  didn’t have a good 2 gallon jar,  so I took some online advice and used a crock pot.  You can use glass,  stainless steel or porcelain containers.  I will get a glass container with a spigot,  but for now this is good.  I wrote the brew date and the day I want to start tasting the batch.  I decided to start testing at four days since this is my first batch.

When it comes to secondary fermentation, I think that I’m going to try a ginger first. Then I think I’m going to do berries. In one video they showed you how to juice basil and mint, add to the bottle.  Then add kombucha and proceed with the secondary fermentation to get the flavor and fizz. Another option is to add your perfect green food so you get a yummy version of your green juice.

Anything that has the fruit and other flavors they have in the store has gone through a secondary fermentation.  However the ones in stores can also contain less than the best ingredients. Now I will know exactly what goes into my kombucha.

I am hoping my kids will like this too (in very small doses).  They both have food allergies and I have read that using probiotics and getting the gut right can help with those types of allergies.  If it’s flavored and has carbonation due to the secondary fermentation, I can’t see why they wouldn’t! Also, my son’s allergy medication sometimes causes stomach upset.  Upping his current probiotics helps,  but this would give him a yummy way to get the additional good bacteria. I’ll talk more about my kids and their probiotics later.  We are believers!

Moving forward,  this will give my friends and I the ability to make a gallon of kombucha for just a dollar a batch! Let me know if you’re interested in getting a starter kit in the future. Cheers to your health!  Follow me at @mrs_musick.

How I Began Eating To Heal

So I promised I would share an overview of what I started eating to heal, which resulted in weight loss.  I wanted to increase my immune system and increase my energy level.

Morning:
Hot Water with Lemon
Hot Tea (Nettle, Dandelion or Sage)
Coffee – again, this is me at the beginning of my journey. I have to have coffee.
Wheat Grass or Green Juice
Yakult
Vitamin C Chewable, Plexus Omega-3, Biotin
1-2 Pints of Berries

I then begin working on my water goal for the day. If I’m still hungry I have another piece of fruit or some almonds around 10 AM.

Plexus Slim

Afternoon:

Salad/Spinach with all sorts of vegetables
Avocado
Croutons, Sunflower Seeds, Pumpkin Seeds and sometimes Raisins
Dressing – I make the night before: 2 Tablespoons Organic Apple Cider Vinegar, 1 Tablespoon Olive Oil, 1 Tablespoon Raw Honey, Juice of 1/2 Lemon and Nature’s Seasoning or other to taste.
Occasionally I add Chicken, Fish or Pork
Plexus Probio 5
Salad
Fruit

Trail Mix: Sunflower Seeds, Pumpkin Seeds, Dried Fruit, Dried Corn Pieces

Tea or Kombucha

I almost always have my 3 PM Coke Zero 🙂

If I need a snack I have veggies with hummus. Or I juice and that really helps fill me up!

Juicer

Night:

Small serving of whatever I make the family for dinner.
Make sure I finish my water for the day.
Tea with lemon.
Plexus Biocleanse, Plexus Family Chewable, Zinc/Calcium, Elderberry

Dark Chocolate Covered Honeycomb – gotta have that something sweet!

I’m trying to not to eat 2 hours prior to bed.  I’m also going to start brewing kombucha to try and kick my single Coke Zero a day habit. This will help me manage the cost of Kombucha!

I’ll start sharing my menu and recipes on my twitter account at @mrs_musick.  Share with me as well.  Especially if you have recipes that don’t have any wheat…turns out little man has a wheat allergy – yikes!

**Please excuse any typos, written from my phone 🙂

My Diet: Nature and Science

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When it comes to dieting I have done what every American does with everything …pick one thing and try to stick to it until it completely falls apart. As a society of extremes we often make that mistake. Want proof?  Look at the presidential candidates making the news.

It’s the same with diets,  health and all the fads in between.   You either only shop at Whole Foods (or Whole Paycheck as my brother Big calls it) or you shop at the other chains and hope your  organic friends aren’t right and you won’t grow a third eye (which actually might come in handy to have a spare to keep an eye on my kids).

I decided to take a new approach to my diet and health. One that incorporated past successful tools along with new options I haven’t tried.  I also wanted to try and heal my body using food.  Especially since I am recovering from surgery and trying to manage joint pain.

I started by continuing my Plexus journey.  Before you checkout,  there are a couple items I have been using for over a year and for a good reason. Plexus Slim for willpower,  energy and management of my blood sugar.  Biocleanse to help clear my insides.  Probiotics (Probio),  multivitamins and the Omega because we all know why,  but I’ll go more in depth another time. Those are my key products of choice.  I also like that as a rep I make money on what I purchase!  You can see more here, order or sign up to be a rep:
http://shopmyplexus.com/camillemusick

Then I decided to diet in a new way.  I decided to eat to heal.  We all have something we’re recoverying from and I decided I was on enough prescriptions.  So I turned to a resource I saw years ago on the BBC… Dr.  Gillian Mckeith from the show “You Are What You Eat”.  I found her book online used for $4. After I received it in the mail I studied it and decided what ailments to attack and to start with the detox.  Since the detox I have been working the diet using the 80/20 rule so I don’t have to aim for perfection.  And by the time I eat the foods I need to eat,  drink my Slim, teas or juices and add my water,  my cheats are MINIMAL because I am beyond satisfied.

Good news,  I have lost weight and size!   And I feel like some of my minor ailments are clearing!

I will absolutely try to eat for longevity,  but I also believe God made doctors and medicine for a reason.  So I’m taking what I need to take and managing side effects with diet instead of with additional medication.

I’ll follow this blog up with how I got started and some of my go to meals,  snacks and juices. But go find the book to start.  I found mine on Amazon used books. Let me know if you have any questions!

**This blog was written on my phone,  please excuse any typos!

Put down your coat of arms, take a breath and let’s talk…

Parents with #specialneedschildren usually come to learn the term “fight or flight”.  I wish I had understood my son’s tendency to “fight or flight” earlier or at least known the term so it would have been top of mind.  At six weeks old I had to use my entire body to change my son as he fought every step of the process.  He would freak out when you laid him down thinking he was falling.  He had to be held constantly…constantly.  He started walking at 9 months and was running away from everyone from that point on.  I became one of those parents that had the backpack leash and wore the face that said “Say something to me, I dare you!”

Whenever I brought some of his fighting or running away tendencies to professionals I was called a dramatic first time parent.  “He is just a boy!, “He has a lot of energy!” and “He’s just playing!” But I knew something wasn’t right.  And the older he got, the worse it got. Lining up in class for transitions became the constant source of incident reports.  I stopped taking him to public places fearing his safety.  He would just start running and I didn’t know why. And I couldn’t catch him either!  I was telling my cousin (who has 4 boys and knows the difference between “they’re boys” and “there is an issue”) and she told me that’s fight or flight!

After some research, I started paying attention to even the smallest of details around me when he melted down or took off running.  The pattern was so clear!  Loud noises at the grocery store that you and I would just filter out.  The ticking of a clock.  Kids bumping into you in line from the front and back.  For kids with heightened senses, this is an assault on their senses!  Like nails on a chalkboard, but worse.

As he got older I assumed it would get better, but then I noticed a new source for the behavior.  His inability to express his feelings or quickly recall a situation on the playground was getting him in trouble.  We would get calls or notes from school about him screaming and hitting teachers.  We were terrified! What was going on with our boy?  We would question him and he couldn’t tell us, like it never happened.  What if there was something seriously wrong?

After a particularly rough day at work and at school pick up we headed to the minivan.  There were no words exchanged.  My face said it all to him. I was tired. Done.  I told him that when we got home to go to his room, get his thoughts together and tell me what happened.

And then it happened.  I got his side of the story!

He told me that they were playing tag, the little girl in front of him just stopped running and he ran into her. She ran and told the teacher “He hit me!”.  The teacher asked, “Did you hit her?” and he replied truthfully, “Yes”.  It was what he couldn’t get out that caused the next incident. On the way to timeout he panicked.  Unable to runaway, he began fighting in an effort to get away.  The more they pushed him to timeout, the more uncontrollable he became. What looked like defiance was a brain going full tilt, but not able to process or communicate.

It even happens when he is sick! Where as you and I might be snarky when we’re sick his behavior looks erratic. Instead of telling you my throat is on fire he just runs. Instead of telling you my stomach hurts he just yells uncontrolablly. As a care giver it’s frustrating and as his mom it’s incredibly sad. I feel so sorry for him that he can’t get out the words to say mommy I don’t feel good. His brain doesn’t process of the same and still and said he just fight, fights illness physically and emotionally.

I am sharing our story in hopes that we can help somebody who has 1 or 2 year old child but they just don’t seem to understand right now. So you can see the signs, push the doctors for answers and begin early intervention.

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Can you see now??

 

#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???

Santas_Workshop

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