Aidan's Story

Here you go....Aidan's story from the CSF Dinner Dance for a Cure.  I am so proud of my little man!  He really does amaze me with his compassion and love for the world around him.  In Aidan's words, "I reckon this outta be a good post!"

Aidan has had headaches most of his life.  We always blamed them on sinus issues.  Then as he was a little older his doc suggested he had migraines.  We treated him for migraines but his headaches still came.  He was having headaches almost every day.  He was irritable, had trouble sleeping, and just felt yucky most of the time.  Since his sister had been diagnosed with Chiari, we had him tested.  Right away the doc said no Chiari just low-lying tonsils.

I sent his MRI to my daughter's neurosurgeon.  He wanted to see Aidan.  We made the trip to see this doc.  He felt that Aidan had a Chiari Variant.  Basically that meant he had Chiari just at a smaller herniation than a typical chiari.  But Aidan also had a retroflexed odontoid, and very tight space where the herniation and brain stem met.  The doc could see why Aidan was having
the headaches.  He also felt surgery was not a good idea at this time.  Aidan has very bad instability.  So when he has surgery, he will not only require a decompression of the cerebellar tonsils but also a fusion.  It is better to wait for a fusion until a child is older.  This helps with healing.

Aidan was also diagnosed with Ehlers Danlos Syndrome.  This is a connective tissue disorder making the tissue around joints very stretchy.  Aidan deals with pain and dislocations in his joints. EDS also contributes to Aidan needing a fusion with his decompression. He needs PT and OT to help him deal with the EDS.  Simple tasks like writing and holding a fork are very hard for him.

Aidan is a nine year old growing boy.  To see him you would think his body functioned normal.  Sadly Aidan spends many days in pain. He battles frequent headaches, joint pain, subluxations, and dislocations. A simple rough and tumble boy time can leave Aidan in pain.  He is careful with how he plays, and what activities he participates in. Aidan is dreaming of a time when there is a cure for Chiari and EDS!

** A special thanks to Colleen Shawk at {we love your love} photography

Brooke's Story

Below is Brooke's Story that was shared at the CSF Dinner Dance for a Cure.  I wanted to share all of our stories here too.  I will post Aidan and mine later on.
My Brave Girl!

Brooke started having seizures around 18 months.  The docs were having trouble determining what was causing the seizures.  Brooke had an MRI, and we discovered she had a Chiari I Malformation.  The only reason I knew anything about this was from seeing an episode about Chiari on Extreme Home Makeover.  I went home and found online the family that was on the show.  I emailed Julie Carter, and she put me in touch with someone local.  Through conversation and several opinions, we ended up in New York at The Chiari Institute.  Before we even had our first appointment, Brooke's seizures stopped.  I truly believe she had these so we would find Chiari.

Our first appointment with Dr B was very helpful, and calming.  We felt that Brooke was in a watch and see place.  So we let her grow, and her little body develop.  Over the next few years her symptoms increased.  She had terrible headaches, bladder/bowel issues, choking, sleeping disturbances, and terrible leg pain.  In the summer of 2010 her choking became so bad it was hard to even get liquids in.  At this point we felt we could wait no longer.  In August of 2010 Brooke had a posterior fos decompression.  The surgery went really well. The recovering went well.  We felt all in all the surgery was a success.

Several months after the surgery Brooke was still having terrible leg pains and bowel/bladder issues.  At this point, she was set up to have a tethered cord release. She was also given a c-collar because her pannus muscle was enlarge and she had some cervical cranial instability.  In April of 2011 she had a TC release.  Thankfully our doc was amazing.  He noticed right away something was wrong when he opened her up. He found that her cord was wrapped very high at the top of her L-spine.  He was able to perform the surgery.  Again this surgery was a success. Very short healing time, and Brooke could walk again without severe pain.

Brooke is now 3 1/2 years post op.  She has some headaches and wears out easily.  Brooke has some restrictions, but otherwise is a normal seven year old.  She still wears her c-collar to protect her neck.  The good news...her pannus muscle is shrinking and the instability is getting better!  Our hope is Brooke's body will continue to heal itself with time.  We are so thankful for our doc who stuck with us, and continues to help Brooke!

** A special thanks to Colleen Shawk at {we love your love} photography

A Dinner? A Dance? You are Crazy!!

To be completely honest I have not been looking forward to tomorrow at all.  It is the CSF Dinner Dance for a Cure.  CSF is an amazing organization that raises money for Chiari research and education.  A Dinner Dance is hosted every year about an hour away from me.  This Dinner Dance raises a huge portion of the donations for CSF.  It is a pretty big deal.  I should want to go right?  This is where what I want and what my body allows me to do come into conflict.

I love what CSF is doing!  I love Cathy, one of the awesome ladies who helps with CSF.  She gives of her time, love, and energy to help find a cure.  And I even love the idea of a fancy dinner and dance!  But then I think of what this really means.  And sadly this is where Melinda becomes Debbie Downer.  First and foremost, the idea of wearing anything fancy makes me cringe.  Tight, uncomfortable clothes are bad enough when you feel decent.  Just getting ready means using energy that I do not have.  Shower, hair, make-up, dreaded fancy clothes....then making sure 2 of my kiddos also are fancy.  After this, an hour drive in car, plus lots of smiling, chatting, and thinking.

Right about now you might be saying to yourself, "Good grief she sure is complaining a ton about a dinner that is raising money for her condition!  How ungrateful!"  This is what I say to myself!!  I hear myself yelling at me!  "Get a grip!  It is one night!  Power through it!"  And please do not get me wrong...my "me" self wants to go, eat, party, see friends, and live.  But the my "it hurts to even comb my hair" self is saying, "you do realize you will need days to recoup from this?"  Seems crazy right?  Days, seriously?  It is so hard to understand but it is true.  I can for a short time "make it work".  Eventually though the body just gives.  It insists for a break, a time to heal.  And when that means giving up possible trick or treat with the kids, church, or schooling, I have to weigh the cost.  It stinks to have to think so much about one dinner.  Everyday though people with chronic illness have to weigh the cost of each move they make.  Many days beloved things get left behind.  Sometimes even beloved friends or family.

I knew this was an important night.  And I made the decision to go.  I am glad I did.  I am looking forward to putting my pretty on.  I am excited to chat with friends, old and new.  I can't wait (wink, wink) to stand in front of all those people and share my family's story.  And I am beyond blessed to have the opportunity to further Chiari Research and Education.  Could you do me a little favor, though?  Could you say a little prayer that on Sunday I could be there for my kids, and walk with them for Trick or Treat?  Moving forward one little step at a time!

You could not possibly understand...

I have noticed how so many of us focus on what separates us.  It is easy to do.  We see a mom feeding her child a hot dog...gasp.  We see a friend struggling to keep their heat on so they give up the family pet...what!?  We meet a family with a different belief system than ours...we distance ourselves.  The news tells us about another child being bullied...we sigh in horror.  Yet at dinner we openly speak ill of our neighbor.   Why is it so easy? Why do we fall into this trap?

I have to say it haunts me.  I literally have trouble sleeping because I allow this to tear at my heart.  I am blown away by people who call themselves friends but drip venom behind backs.  I am appalled at those who claim Christianity, yet openly judge those around them.  I am torn by families who say they want equality, and yet treat one another differently.  I look at myself, my children and see our downfalls...failings.  How can we be better at this?  If we want our children to create a world of hope and promise, then why are we attacking one another?

My close friends always tell me I take things to heart.  And it is true.  I know what I say matters, and what others hear is important.  We can't throw words around and not expect others to hear them.  My mom always told us, "You should mean what you say and say what you mean.  Otherwise just keep quiet!"  Yet I see people and myself say, type, and throw words out that were not contemplated.  And maybe they are.  Maybe the intention was hurtful or biased.  But then if it was, how can we look to these people as role models, or leaders?  One word said in anger has a ripple effect.  It can reach farther than intended.

I will be the first to admit what leaks out of my mouth some days is poison.  I honestly hate having a body that is failing me.  I want to scream most days at everyone who crosses my path.  Not out of anger, not because I think they do not get it....simply because the roar of pain in my head is louder than their voice.  But do you know why I do not scream?  Their words, their love, their heart at trying to be there for me.  I hear people say....but they just do not understand!  My response....so help them to understand!  I do not understand hundreds of people I come into contact with.  But that is what makes life so amazing and unpredictable!  It makes our life an adventure of stories woven together.

When I first met Tim's aunt I did not understand her.  She has developmental disabilities and honestly I was ok with just loving her from a distance.  Horrible right?  Yet very human.   Then I sat next to her more.  I asked her questions.  I held her hand when I took her shopping.  I looked at pics when she was a little girl.  I listened to her mom praise and love on her.  And I fell in love with her too.  I wanted the best for her and I wanted her to be happy.  Sadly I can't be a huge part of her life, but I made sure she had those around her who could be.  I do not know what runs through her mind, or how she truly sees the world.  I do know we have a connection, and it is important.

Growing up we had countless foster children who came and lived with us.  Each one brought their own story and life experience.  Many of their stories were awful.  I remember as a kid thinking, "Wow I am super glad I have my family!"  And yet some of these kids dreamed, prayed, and begged to go back home.  I remember thinking they were nuts!  Why would they want to go back?  One time I asked one of them.  She was little but her response was, "because it is home."  I thought for a minute a realized her idea of home and my idea were different.  But she did not think it was wrong to want her home.  Something about it gave her comfort or belonging.  I really have no way of knowing why or understanding. But I did not need to fully understand.  I could love on her, play with her, and be there for a short time.  That is what mattered.

Today I laid in bed most of the day.  My head was a mass of pain.  My sweet kids read stories to me, rubbed my hands, and loved me.  As I lay there, the beautiful inspiration of others lives flooded my brain.  I could hear the prayers of others for me, the love of their words wishing us hope, and their sweetness surrounding us.  They do not need to walk a mile in my shoes to understand because they are willing to be an encouragement in anyway they can.  Reading an uplifting quote, hearing a friend's laughter, or having a text sent my way in love is beyond a blessing.  I treasure these things and it gives me hope.  It reminds me for every bad attitude, I can find ten good ones.  A positive word uttered in love is a blessing whether the person walks my journey or their own.  Because really do any of us travel the same road?  It is when those roads meet that we see our friends.

A Little Sunshine on a Cloudy Day

Rich, warm colors, smells of bonfires, cozy blankets, hot chai tea, snuggles...all reasons why this is my favorite time of year!  Huge pressure changes, unpredictable weather, fluctuating humidity...all reasons this is not my favorite time of year.  For the past week I have been trying to find a new balance for our lives all over again.  Sometimes I get into a nice groove, feeling good, combing my hair, cleaning my house, then WHAM!  It all changes in a quick blink, I am down like I was hit in the head with a giant wrecking ball.  It normally takes me a day or two to find the scattered pieces of me, pick them up, and reassemble.  When I am lying crumbled, broken on the floor, I sometimes think, "This is it.  This time I just can't pick myself up.  I am finished. Leave me in peace so I can wallow in my own self pity and doubt."  Then my maniac "Oh no you didn't!" self comes barreling out of the shadows, grabs my lazy pain ridden bottom out of bed and sets me on the right path again.  Who is this crazy person who waits in the shadows you ask?  It is my better part, my joy, my hope, my faith.  It is the part of me that God holds closely and says, "get up." ever so softly.  And because I am still I hear His whisper.

Through this journey I have learned many things about many people.  I have learned most people are stronger than we think.  Most people carry a burden every day of their lives.  Most people are lonely sometimes.  Most people yearn for peace in their lives.  Most people want to be "the good".  Before I was really sick, I used to not see this.  I was so caught up in being "the best" mom, wife, daughter, friend that I could be.  I ached to be "the best" Melinda out there.  When my name came up in casual conversation, I wanted someone to say, "Oh my what a lovely lady she is!"  Silly?  I know!  But when you stare pain in the face everyday, your priorities change.  You no longer desire the same things.  Instead you pray for strength to get a shower and put clothes on.  You pray dinner will not be out of a box again.  You pray for a glimpse of a pain free existence.

Do not get me wrong, I still want to be a good person!  I want to teach my kiddos to have giving hearts.  I want to set the example to pray fervently, even if the response we get is not what we want.  And then to turn around and Praise beautifully for the answer you are given.  To accept this walk with a smile, and know your journey is worthwhile.  Cling to the memory of a day when your pain was only a 6 or 7, when you lay crying from a 10 day. Push aside those thoughts of sadness, doubt, feelings of betrayal, anger at my body,and frustration.  Grab onto to the goodness around me- beautiful family, loving friends, supportive community, blessings of strangers.

I can't tell you enough how thankful I am for prayer!!  Prayers from all of you lead me through many stormy days and nights.  It really is like all the good things of fall.  It is warm and comforting.  It is vibrant and changing.  It is long talks with old friends, and life changing talks with new friends.  It really is a little sunshine on a cloudy day!