A Celebration with Purple Cupcakes!

Do you remember this day? Surgery day, August 10, 2010.
I remember this day like it was yesterday but it was 3 years ago!!! Yes my bug still has headaches and pain....but nothing like 3 years ago!  That day was a blessing to us!  As our friends and family prayed, our doc hero performed brain surgery on our little bug.  We waited down the hall...praying, hoping, breathing our wishes.  Hours passed. I imagined our doc and nurses, tired, hot, pushing on to help our girl.  They did not give up.  Today Brooke is a happier, healthier little lady because of that day.  So today we celebrate 3 years with purple cupcakes! Happy Zipperversary Brookie!  We love you so very much!

Questions Answered....

Over the past year I have seen some pretty amazing docs.  Docs that specialize in their field, and can answer the tough questions I have.  And yet, even with these answers I am left with more questions.  I look down the road ahead and I wonder how my illnesses will change our lives.  How will we ever afford the treatment I need to even lead a semi normal life?  How will my kids participate in life like typical kids with a mom who is always ill? How do I remember to schedule everything for myself and my kids? How do I keep fighting with the electric company to be gracious and let the power stay on?  Where do I find the strength to just drag myself out of bed in the morning when the pain brings tears to my eyes?

Most likely most of these questions will not ever be answered in the literal sense.  But I have learned that simple little things help to make each day a little easier.  A prayer sent in an email by a friend lifts my spirits and reminds me I am loved.  A friend who struggles as I do giving a little something just to make me smile.  A set of parents who never give up on me, and carry me through another day.  A sweet friend who leaves little gifts for our fam on the table when she stops by.  Encouraging words by others to push onward even in the toughest moments.  And so each day I do just that...push onward.

My trip to Cincy was fast but seemed so long.  It completely drained me and took 2 days to recuperate.  Aidan and I saw our geneticist at Cincy Children's.  I leave appointments wishing for more time to listen longer.  To learn more about this disease, EDS, that is slowly crippling me.  Thankfully he and a few other docs in the nation have taken interest in EDS.  They are fighting for us zebras and trying to find ways to make our life more bearable.  Still hearing him say we needed to find ways to keep me from a wheelchair for a few more years was sobering.  I know most days I want to ask for one...wanting to not put pressure on my joints. But it is hard for me to even admit to him that my body is failing in this way.  I was a dancer!  I was fit,healthy, and loved to be active.  Now it is hard to even walk.  My body is changing and I am not even able to exercise to make myself feel better.  What is the answer here?

I did learn some interesting things.  He told me I need to be in PT.  But he wants me to do the first few sessions in Cincy.  The Pt place there is actually trained in working with EDS patients.  Sadly I am not sure how we would even afford this.  He recommended me to see a cardiologist that specializes in POTS and Mast Cell.  This doc has at least a year long waiting list.  He was glad I had an appointment with Dr Henderson in September.  I did not tell him my fear of not being able to pay for the visit.  He wants me to see a Behavior Modification Specialist.  Although it will get tougher to treat my pain, a BMS may be able to help me learn techniques to manage some of the pain through different techniques.  Have no idea if insurance will even allow me to see one of these specialist.  He also referred me to a headache doc in Cincy.  This doc specializes in EDS type headaches.  He did feel like some of my headaches are pressure related to Chiari.  But he said the one's that move around may be related to EDS.  They have found where these extremely painful headaches are caused by shifting in the skull due to loose joints which cause nerve compression.  Sadly there is no way to treat this.  Just a really painful headache which must me endured until the nerve is released.  Answers which lead to many more questions.  But I remain hopeful!  These docs are amazing...and they keep fighting to find new answers.

Aidan had a great appointment.  Although his EDS causes pain, mostly in shoulder, hip and hands, the doc was hopeful.  He felt with some strength training we could build Aidan's muscle tone which would relieve pressure on joints.  He suggested swimming and cross country.  He did recommend several things to avoid- football, sprinting, soccer, and even basketball.  But he did say a fun league for b-ball is ok.  He told Aidan to ditch the flip flops.  Poor Aidan is struggling with this one.  :) The rolling of his ankles is turning his knee which makes his hip sit funny. This causes him pain.  Doc wants Aidan to be in PT and OT too.  The good news is many boys grow out of EDS in the teen years.  So we are hopeful!

All of this is just a piece of the many things I am praying about.  This doc mainly focused on my EDS.  I still need to work with my Chiari, POTS and Mast Cell.  Which are different docs, and more trips.  When I think about the traveling, I hold my breath.  Just leaning down to pick up a toy is difficult these days.  How will I travel?  Even though my hubby works very hard, we can't pay our bills.  Will we make it?  Where do we go when we can't afford to live here anymore?  I keep praying.  I keep asking these questions, and listening for the answers.

My parents are taking a trip to Colorado to see my grandmother.  She is 89!  I wanted desperately to go.  Just to be able to spend time with her...sit, chat, drink dr pepper, and eat pie.  My kids love her, and so wanted to see her.  We knew we could not afford the trip.  But my parents generously offered to help us with seeing her.  Then I had to get past my fear of a 2 1/2 day trip with 8 people in an 8 person van.  Would my body even make it?  Most likely it will not.  I am sure I will need some recuperation days when we arrive.  But I am determined to go.  It may be the last time I can do something like this.  One more time sitting on my grandma's deck, having breakfast....what a blessing!  Although I have a broken body at 36, my heart is hopeful.  My mind may constantly ask really tough questions, but my spirit is full of joy.  If I choose to dwell in the unanswered, I can't enjoy my life in what He has already provided.  I continue to trust and remember I am not Home Yet.

Doubt Surrounded by Hope

Is it possible to have the desperation of doubt, and yet still cling to hope? Many would say no.  Most would argue that hope is pushing aside the doubt.  Trusting in a higher power.  As a Christian I have been taught that to doubt is to turn from God.  No matter what the situation, we should always trust and have hope.  I would agree hope is a beautiful feeling to cling to.  But I would also say as humans doubt creeps in way more than we may want.  It can shadow everyday decisions, we may never even realize doubt has taken over.  For awhile, we can live in the shadow of this doubt thinking we are just living.  Sooner or later I have found the doubt takes over, and eventually brings you back to the place you started searching for hope.  Today I was brought back around....

My head has literally been spinning with all the decisions and things happening right now.  We live in such a fast paced world, and most days I find it very hard to keep up.  I have made lists of lists of lists of things that need done.  The lists continue to collect but nothing seems to change.  Most mom's, or even dad's can relate to endless piles of laundry, dishes, meals, baths, weeds, and the list goes on.  Add into the mix kids and their activities.  Pile on several health issues and doc visits.  Then top off this heaping pile with huge financial restrictions.  Life gets heavy pretty fast.  I know so many families are struggling right now.  So many are looking for hope to carry them through one more day.  

Most days I am angry at myself for even having the slightest longing for more.  How dare I want a nicer home or car!  How dare I want to eat better food!  I should rejoice in what I have!  Where I am is far better than much of the world.  Why do I think my children deserve an ice cream more than another child?  Why do my children need one more pair of shoes even if they are $2? Who am I to even complain or cry out because of lost hope?  I hate to ask for help or be in need.  What I have should be enough!  It should sustain us.  And yet days like today...it does not.  And I desperately wish that is did.

I am blessed to have a hubby that works swing shifts to provide for us.  Who drives over an hour to his job.  When I first met my man, we would go on dates shopping.  Yes shopping.  He loved to buy comic books, computer games, collectibles, and rc cars.  Over the past years, he has sold his stash off one by one to bring in extra to pay medical bills.  He works long overtime hours and does not complain.  He is my hero.  

What happened...what made it impossible for a family to survive on one income?  We have no debt except a very small car payment.  Well and of course our monstrous medical debt.  We live frugally.  Yes we splurge sometimes, like $1 slushies during happy hour and a bag of popcorn at Target.  Yet it is hard to pay for my prescriptions, and our utilities are hard to keep on.  I cry and plead with people to just be gracious and allow me to send in smaller payments.  Have we become a country where it is ok for a family to work hard and yet loose electric and gas?  What do you choose groceries or medicine?  How do you tell your kids to help you hunt in your house for school supplies so you can save some money?  I need to be content.  I need to cut back. But how...where? It is not a budget issue.  Not when you are pay check to pay check and the car for the bread winner has to have tires. 

I do not write this because my hope is gone.  Never is it gone. I write for those who may feel lost sometimes.  Most days I am not sure how tomorrow will fare.  Sometimes I just need to collapse, cry, and pray for answers.  Sometimes I still need my mom to say it will be ok.  Sometimes I see the hope in others...and I can continue on this road.  I went in to kiss Brooke.  She is snuggled down in her bed, beautiful, peaceful.  Right next to her face is a picture of her and her 2 chiari buddies.  She clings to hope everyday.  Because of her so do I.  And in that hope I do find peace.  

Another School Year Approaches

Over the past few months, hubby and I have been struggling with a huge decision.  How to properly school the kids when my health is not going so well? I feel like the past 2 years of schooling have been an attempt on my part.  This past year was basically just survival for me.  There were months were I could not even begin to teach properly.  And this is not fair to the kiddos.  They want desperately to learn.  I have tried many different ideas, curriculum, lack of curriculum.  But it really boils down to one thing, physically I am not able to home school.

This realization breaks my heart!  I did not start home schooling to shelter my kids from the world.  I did it to open up new doors to a world they may not see in a classroom.  I did not home school to keep my kids safe.  I am not so naive to think that there are any "safe" places in our world.  We are were we  are each moment because God has placed there for a purpose.  I did not home school because I felt I was a better teacher.  I did not home school because we are Christians and I want to protect my child from "pagan" outside influences.  As a Christ follower I firmly believe in living in this world...the good and the bad.  If I can't guide my child through the web of information, theories, and lifestyles they will learn about, then I have failed as a parent.  I teach my kids every day to look for the good in others, and love on them for that.  We all may not agree, but we all can love one another.

The reason I home schooled is......I wanted to live my life with my kids.  I felt like as a family we were on this journey of life.  With home schooling our journey could start and stop when we wanted it to.  It could take us many different places and directions.  We could share experiences and relish in moments of pure joy.  Not one of us would miss a special moment.

For now this is not our reality.  Tim and I have thought and prayed long and hard on this. We have looked at all our options.  With me facing another major surgery and my health changing each month, we needed a new plan of action.  So this school year Aidan and Brooke will be attending school.  And yes of course I am a nervous wreck!!  Mostly because they are behind.  With my past year, I have failed to live up to my teacher position.  But both of them our smart and resilient.  I know they will be watched over.

One of my main reasons for not sending the kids sooner has been an ongoing health issue that Brooke has.  I do not speak of it on the blog because I like to leave some things personal.  I have worried and fretted over how this would be handled.  I have feared the worst, and saw her being teased and ridiculed.  I prayed and prayed for my heart to be calm, and kids to love her for her beautiful qualities.  As if God was saying, "I got this!", Brooke has been almost completely healed from this health issue!!!  Although I do not want to go into great detail, I want to express the immense magnitude of this.  Doctors told us this was permanent.  We were talking surgery down the road to just help her cope later in life.  And just like that....POOF!  So if you feel your prayers are not heard..they are.  If you feel it is hopeless, hang on.

I know this next step will not be easy on any of us.  But I have HOPE to hold on and see it through.  Thank you for continued prayers for our fam!  We witness miracles every day!

Summer Time Miracle

Once upon a time there was a little girl named Brooke.  Her mama called her little ladybug.  Even as a baby she was dainty, delicate, and yet strong and graceful.  Her mama admired her loveliness, caught glimpses of beauty where ever Brooke danced.
On this particular hot, sticky summer night...Brooke smiled in the warm breeze of evening.  Her mama stared at her, drinking in her sweetness.  There she was dressed in her pale pink monkey pj's.  Brown boots only halfway on her feet, scrunched up around her ankles.  Her hair tousled, hair bands around her wrist.  She had a bit of sauce from dinner at the corners of her lips, dusting her nose where little freckles.  This simpleness yet craziness of her made mama's heart swell with love!  How could such a miracle be there dancing in the fresh cut grass.  Brooke picked dried flower petals from the ground.  Ripping them, she tossed them carelessly into the air.  She twirled as the petals danced on the wind around her.
Mama set back admiring this sight. Thanking God for the Miracle of Brooke.  Thanking Him for all the ways He had faithfully carried her through every storm.  How He continues to heal her, and protect her.  Just 1 week ago, He answered yet another prayer heavy on Mama's heart.  He healed one more of Brooke's needs.  He made it possible for her to be closer to a functioning 7 year old body.  Her smile reflects a lightness in the summer heat.  Mama sees it, she knows her baby is strong....is a survivor.  In one glimpse of a moment Mama can see her babe, her bug and rejoice for all that she is and will be.  A summer time miracle is a sight to see.

Answers

I know many of you have been praying for some more answers for our fam.  We arrived home later last night, and were completely wiped out from 3 days of driving and appointments.  The weather was horrible with non-stop rain on Thursday and Friday.  As Chandler said, "We were all soap n wet!"  Again so thankful for the generosity of the Ronald McDonald House!  It is so nice to have a safe, comfortable place to be!  Honestly I did not hear what I thought I would hear from the doctor.  My head is still swimming.

I will start with Brooke first, as she is the success story!  Her MRI and incisions look great.  She still has an enlarged pannus muscle in her neck.  She is just under the red zone for instability.  Which means she is unstable but does not have to have a fusion now.  So the hope is as she grows this may right itself.  If not, she will need a fusion down the road.  For now, she is supposed to work on strengthening her core and wearing her collar in car and when she has a high chance of injury.  Brooke still has a long list of things to avoid for the rest of her life.  Good news is....she is so much better than she was!  She is living a life we never thought she would have.  Of course her and Dr B teased and laughed with each other.  He leaned on his hand and smiled at her with such love.  He commented, "seeing her makes me think I am doing a little good in the world."  I assured him that he is our hero!  Without him our sweet Brooke would still be in constant pain and maybe worse.  It is always good to see them together!

On to Aidan.  Aidan has what is called a Chiari Variant.  It is not a true Chiari Malformation because it is a smaller amount hanging from his skull than a "typical" chiari.  As Dr B says(and many agree with this), if your brain is hanging from your head than it is not normal!  It can cause the headaches he has, and many other issues.  The other problem is Aidan has a retroflexed odontoid.  This is the bone that runs in front of the spinal column.  It should be fairly straight up and down.  His is bent significantly backwards.  What this means is a brain decompression on Aidan is much more tricky.  Thankfully, Aidan does not need a decompression.  Right now we will manage his headaches with medication.  But if his symptoms become worse and he does require a decompression, he will also need a fusion at the very same time.  Otherwise his head will be completely unstable.  So right now we will watch and see.  We are going to do all we can to protect his neck.  This means no roller coasters, no trampolines or bouncy houses, and trying to avoid anything that will jar his neck.

If this was not enough info, I also learned more about me.   I found out that I also have a Chiari Variant.  Mine is larger than Aidan's and is a strange shape.  My cerebellar tonsils are chubby(even my brain has gained weight! ;) ).  I also found out that the back of my skull is very small and makes everything very tight.  There is no room for the CS fluid to get to my brain.  Basically my brain is plugging the hole.  The only way to fix this is with a brain decompression.  Now I do not have to have the surgery.  I will not die without it.  But I will never feel any better, and will probably get worse.  For those of you who know me, I have slowly deteriorated over the past 4 years.  I can't even imagine what 4 more will look like.  At the same time, another major surgery was not on my to-do list.  In fact I wonder if I can even do this!  As the doc said logistics are the hardest!  This surgery is a 4-5 day stay in hospital.  Than another 2 days local before I travel.  And by travel he meant fly.  Four days local healing if we drive home.  And the drive has to be done over 2 days.  Two weeks of needing a constant helper when I get home.  And a 2-4 month complete healing.  Not only is this time...it is a huge financial strain as well as needing to plan every detail out.  I did a very poor job of healing last time.  I have to take this more seriously.

My mind is racing on all the details.  I am trying to let go, and just pray.  My mind is frantic though.  I really feel I need a second opinion too.  One of the things that concerns me is my last surgery was a c1-c2 fusion.  It is common in people with EDS to also need a cranial fusion after decompression.  As of now I do not need this.  But the chances of me needing it after surgery are high.  I wold rather do this all in one sweep.  But this is not what was recommended.  I just do not want a 3rd surgery.  There is another amazing doc in Virginia.  I almost went to him before my last surgery.  I backed out because of finances and just feeling horrible.  I can't do that this time.  I need to see what he says.  Again this is all so much info.  I am physically and emotionally exhausted.  A trip to NY is complete torture, and I am paying for it.  I thank everyone for your prayers and help!  We are so blessed.  Sorry this is a pretty straight forward post.  My heart is sad and I just do not have the energy to write more. I just need some time.

headed out

tomorrow we head out for new york.  aidan, brooke, and i all have appointments on friday.  i am going to make this post short and sweet because tonight i am struggling.  I know some have asked for prayer requests so just wanted to share.  thank you to all who are so faithful in loving on our fam!  it means so very much.

aidan- this will be the first time he sees dr b.  hoping to find out how to control his headaches and help him not hurt as much.

brooke- trying to find out if collar is still helping.  she has been having some choking episodes on food and liquid.  just checking to see if related to her chiari or not.

me- first time i will see dr for myself. i am really praying for some answers.  i have gone from bad to worse.  i am barely able to drive and most days am having a very hard time walking as my legs feel like they weigh 500  lbs.  My vision is very bad and am wearing my collar because of the excruciating pain in my head.  I figure he can tell me 3 things- bad(he can do nothing), good(we can try something new), bad(more surgery).  whatever he says i know this is the path chosen for me.  i will so my best to face with strength and grace.

thankfully my wonderful dad took off work and is driving us to ny. the way i feel tonight i would never have been able to drive tomorrow.  thank you for continued prayers for us all!  We are beyond blessed!

**sorry for typos!