When a Gift is More Than You Ever Expected....

Growing up, my mom and dad always reminded us Christmas is more. It is more than the gifts, food, and festivities. And I always looked forward to the moment on Christmas morning when Mom would find the little baby Jesus and place it in the Manger. As a kid it just meant there was now a baby in the manger and it was not weird that all the other statues were staring at nothing. But as I grew, it meant a completion. A completion of another year, a special time of celebration, and a plan starting. I could see the hope and expectation of what was ahead, around the corner. And this realization made Christmas more than the gifts under the tree.

Honestly the past few Christmas' have been really hard. Three years ago Brooke had her surgery and was waiting for her next one. Two years ago we were far from family and Tim lost his job. And last year, I had surgery and was in horrible pain. Financially all these years were hard too. We understood what the "true" meaning was. Our kids learned to be excited with golden books and little toys. They figured out it was more important to be together. Yet every Christmas I laid out plans in my mind for the next year. It would be better. I mean it had to be better, right? I even remember saying,"Well it can't get worse!" But it can, and normally it did. For 3 years, I kept begging God for this next year to be easier. And for 3 years my answer was no. Something in me kept asking though....holding out hope. Smiling through the heartache.

I do not always write or share the hardships we have faced. Part of it is probably pride. But part of it is my inner voice saying, "Suck it up you poor American girl! You have got it good compared to most of the world!" And I know this is true!! But that does not make the $5 bank account balance any less scary. It does not make deciding to have your daughter's cavity filled or groceries for the week easier. The reality is you either have or you do not. And most weeks I have to make crazy decisions and then live with that. It means when I go get my hair cut twice a year, I have guilt for days. It means when I buy healthy food I contemplate who is watching me and scolding me for over indulgence. Or if my Dr Pepper addiction costs our family more than it should. We kind of have a family joke about the revolving door in our home. We hold very loosely to possessions because when groceries, gas, or doctor bills need attention...I start selling off our stuff. The kids now think it is a game.

This Christmas approached like the last few. The added issue this year....I can barely grocery shop and have any strength leftover. How could I possibly deal with crowds and all that shopping? Just as it always does it all fell into place. Friends stepped in and shopped for me. Others gave us generous gift cards. One friend continues to show up with groceries for us. I received encouragement in notes and phone conversations. Aidan received his amazing Wishes Can Happen Wish that spilled over into Christmas gifts. An amazing church in the area adopted our fam and provided special things for the kiddos and our family. I was able to do a little online shopping and never leave the house for gift shopping! Thankfully I had enough strength to enjoy Christmas Eve at my parents. Christmas Day I was not feeling well, but I stayed home and was able to enjoy just being US. I was reminded over and over it is not the amount of gifts but the love.

I am continuing to pray for a more gentle year. I am continuing to hope for a small amount of peace and healing. One thing I do know is whatever the answer, we will figure it out. I am continually amazed by my husband and children...the way they adapt and take it all in stride. I am overwhelmed by the love of my parents, never stopping the care for their daughter. I am blessed by so many friends...friends I have known almost my whole life, and those I barely know outside of the internet. Some financially support us, some care for my babies, and many just send me so much love and encouragement. I wish I had the ability to thank everyone, one by one, with real words of gratitude. I am in awe at how many care for us year after year and continue to pray for us. A gift is so much more for us.....we have seen it in so many forms. Each form the gift takes in our life makes us realize how much we are loved, and it really does not matter if the answer is "yes" or "no".

A Girl and a Piano

Since I was little I have always loved music. I love the feeling music rises inside me. I have never been very particular. I like so many kinds of music. If you were to look through my very limited CD collection, you would probably think it belonged to several people. You can skip through to see classical, jazz, 80's rock, 90's rock, even some 70's in there, show tunes, christian, country, folk, and of course some hair bands. I always dreamed of playing music. As a young child, I tried several times. I first tried claranet in 4th grade. Sadly the band instructor asked me to stop. I then tried guitar, but struggled to even learn one song. In college, I again tried my hand at music. I took an Intro to Music class. My professor was a lovely lady who was so kind in telling me I had no rhythm. But she helped me to get through the class because she saw the love I had for the music. She even recommended I take World Music the following semester. I devoured this course, as it not only spoke to me through the music but the history and culture. If you have ever heard me sing, you know American Idol was never in my future. But that has never kept me from singing! I was a dancer, though, and some how I managed to excel at this. I never counted the beats as it did not make sense to me. So I came up with ways to memorize where the steps went to the sound of the music.

I always hoped one of my children would want to play an instrument. When Brooke asked to play piano, I might have squealed and jumped up and down a bit. I love to sit in her room and listen to her practice. She is so determined about it, and even the simplest songs make me smile. I am so proud of her and thankful I have music gracing the insides of our home. It gives warmth even from little 7 year old fingers. I was over the moon about her piano recital. See I am not a sports fan. I have learned to find joy in watching Aidan play. I am also amazed by what athletes can do, but long games have never been exciting to me. When Aidan gave up Irish dance and we found out Brooke could not dance, my heart sank a little. I grew up dancing and doing gymnastics. For me it was a part of daily life. Dance gave me joy and I so wanted Brooke to find something that would do the same for her.

Today I woke up in awful pain. These weather changes cause huge issues in my body. I try to put on the "I am fine face" but time is showing I am not. I can barely walk most days, and Hubby has picked up almost all of the household chores. Even the simplest things like lifting a cup, or writing a note is very painful. The pain meds do not work well, and I am not able to see the pain specialist until March. A trip out means at least one or two days down in bed. And when I say a trip out I mean the grocery. So I knew this morning even getting out of bed would be a struggle. I laid there trying to figure out what to do. I called Brooke in and told her I could not make it to the recital. Before I could even tell her I was proud of her big crocodile tears streamed down her face. My heart broke. I wiped those tears and pulled her into the bed next to me. We laid for a minute crying. Then I prayed....prayed for strength to just get to this recital. I knew going would mean I would have to be completely humbled. My hair had not been washed in days. I could not risk a shower or bath because they exhaust me. I had to pull the hair up and pray no one noticed. My clothes looked like I slept in them, and I knew I would have to use the cane. And once again my mama and papa would have to come to my rescue and drive us.

I try to be ok with my illness, to make light of a very bad situation. I try most days to find the silver lining. But sometimes I just get angry. Angry at all these illnesses taking time from my kids. Angry my kids suffer. Angry my hubby can't have hobbies and a life. Angry we will always be in medical debt. Angry that I am 36 and have to use a cane, and even with it walk very slow. Then someone prays for us...someone loves on us...someone reminds me life is still full of hope. I pushed aside pride and anger to be blessed by my daughter. She played beautiful...and no one cared her mama had ugly hair and a cane. To blessed even more her teacher's family showered us with love, and tells me I look beautiful. May seem silly but to quote a friend of mine...I was a "hot mess". Sitting there listening to all those kids play beautiful Christmas music was wonderful. To hear a 14 year old sing music which literally made me cry was a little Christmas gift. For me music is beauty and life. Many crave words, or art. For me music can make me feel closer to heaven than anything else. Once again my sweet bug helped me be hopeful. She held my hand, smiled, kissed me, and shared her heart.

Another Wish Come True

This is a long overdue post! I have not been doing so great health wise. Typing, reading, and writing are pretty painful these days. But something pretty awesome happened for Aidan and I need to share! Our sweet boy had Christmas come early this year. I was asked by a friend if Aidan could be nominated for a wish through Wishes can Happen. At first I was very hesitant. Although he does have Chiari and EDS I felt strange having 2 wishes for our family.(even if for different kiddos) Then I was contacted by the amazing Madelyn Sweeney. She assured me Aidan would be getting a wish no matter how I felt about it. :) She of course thought big as all wish dreamers do. Sadly though I needed to stay close to home. I just could not travel right now. Our awesome friend Lisa, who planned Brooke's wish, took the lead for Aidan's wish. She was so kind and knew I could not do much in helping her. Lisa just asked for a few ideas. Of course my little wish list for Aidan was blown up times 100! Wishes can Happen can't do anything small! A few weeks ago, Aidan began to receive special packages. It was a fun week of opening boxes not sure what would be inside. He loved every moment! Now me being the mama wanted to make sure he got something he truly needed. :) So I asked for a nice comfy mattress and pillow. I knew this would help with his sleeping and EDS. He was actually looked forward to the comfy bed. Tim and I also decided to pull a few things out for Christmas. He was receiving so many awesome things, and did not figure it would hurt to hold back a few. I will post pictures of what he has received. After Christmas I will post some updates! Aidan has not only been a trooper through his sister's illness and surgeries, but mine too. He is in pain sometimes and does not even complain. Aidan is a gentle heart wrapped up in a responsible little man. I love watching him grow, and am sad when his pain gets in the way of regular boy activities. He does not complain, just takes it all in stride. God has blessed us with him and I am so thankful that he was granted this Wish! Thank you so much Wishes Can Happen!!! We love you guys so much! You have provided endless smiles. Here are just a few of the awesome things he received: Mattress and pillow, Alienware Laptop, 2 basketballs and a hoop, Jabba Lego set (He opened this and I did not see him until it was complete!), 2 Minecraft Lego sets, Bow and Arrow set,

Pushing through the Storm

I have been thinking about writing for awhile but have not been sure how to put into words where we are as a family. I mean I probably could but it would be a novel and it would be listed under horror stories.  Ok had to throw in my flare for the dramatic.  Honestly most days it is just too hard to type.  I fill my moments with schooling the kids, feeding the fam, and getting kids to their activities.  This is it!  I know...nuts.  I barely get dishes or laundry done, and a shower, well I try.  By the time Tim gets home I am ready for bed.  If the kids do not have an activity, bed is where you will find me.

I am desperate to have some sort of life back.  I want to have the energy to comb my hair after I get dressed.  Or be able to find a shoe that will go on my very swollen feet.  I would love to fix a real dinner for my fam, or have a family game night.  We are trying to find some kind of normal in this yucky state.  I look forward to laying with Aidan and reading together.  I love to watch design shows with Brooke, and cooking shows with Aidan.  Snuggling up with Chan and listening to him play on PBS Kids is comforting.  Hearing my hubby do the dishes or feeding the kiddos makes me happy I chose him.

Right now there is not much that can be done for the pain I am in.  I have a few things going on and nothing is an easy fix.  We believe my Ehlers Danlos is acting up.  All of my joints and surrounding areas have a horrible burning pain.  The only thing I can relate it to is when your leg falls asleep and not the numb part but the burning part right before it wakes up.  This is how my joints feel all the time.  And my feet and hands are swollen and tight.  It makes using them difficult.  PT would probably help but right now we just can't afford it.  My pain med helps a little.  I also am dealing with a very weird headache.  I am having an MRI next week to see what is going on.  I have a terrible stabbing pain in the back of my neck that sometimes radiates up behind my ear.  It is truly maddening to walk around with this pain all the time.  You begin to forget things, and just the very job of holding your head up becomes too much.  There is a pain med that I can get 10 times per month. Again the extra money is just not there, and I have to drive to the doc to get it.  I know this might sound silly, but getting out of PJ's and driving across town would take a ton of extra energy.  Beyond that the shot only helps for 12-24 hours.

I am going to see a pain specialist at the Cleveland Clinic after the new year.  I also have an appointment with a Doc in Virginia in March.  The Doc in NY is still advising for the brain surgery. I just am not sure if I should go this route.  I worry the outcome when the outcome from my last surgery was not the greatest.  Right now, little steps.  It is hard when your body constantly fights against everything you are trying to do.  It is also hard to find a balance when you are not sure if you should stay in your home.  Our home is also fighting against me with endless stairs, mold, and never knowing what will need patched up next.

It is true you can find the up to every down.  You can push through the storms and make it to the sunshine.  I have learned though each storm makes our family a little more tired.  It takes a few more pep talks to set us straight.  And we need to hold to each other a little tighter.  We are so blessed by friends who drop off dinner, friends who clean for us, friends who love on our kiddos, friends who keep our heat on, friends who help fill the cupboards, friends who buy us a special lunch, friends who let me take a nap, and friends who pray continually for us.  When these blessings happen I am reminded that the next storm will come, and we are not alone as we push through it.

My Story

Here is my story that was used at the CSF Dinner Dance for a Cure.

My name is Melinda and every day I fight to end Chiari.  Not only for myself but for my 2 children.  As a family we know how devastating Chiari is. There is not one day in my life that I do not feel the effects of it, and detest the very word.  My story started a long time ago, but I was only recently diagnosed.

As a child I was always sick.  I never felt good and my head always hurt. I can remember going to school and praying for the day to end.  I hated school. The classrooms were hot and made me feel icky.  My head ached, and I wanted to play but most days watched as my friends played.  Learning to read was a challenge.  I tried to explain how the words danced about on the page and made me sick, but everyone said my eyes were fine.  I struggled but pushed onward.  I remember many nights laying in our living room, the scratchy couch under my cheek, the cool darkness of the room, my mom chatting in the kitchen while washing dishes.  I wanted desperately to get up, but I could not.  I hated riding in the car.  Some days were so bad when my mom even moved the car my eyes would shut and the tears would run down my cheeks.

As a teen I struggled with not being able to keep up with my friends.  Getting sick at the worst moments like on trips with friends.  I begged the doctors to help me. My mom took me to one specialist after another.  I was finally diagnosed with Endometriosis and Migraines.  None of the treatments really helped.  I was still in pain.  In college, my symptoms were awful!  I was taking a full load at school and working 3 jobs.  I never stopped. And my body felt it.  I pushed through pain and kept going.  At this point, I was done with docs.  I figured I would just drink lots of caffeine, not sleep, and keep myself so busy that I would not dwell on how bad I hurt.
This worked for awhile until my body would just crash.  Then I would take a week to recuperate and go right back to the craziness.

Then in my late 20's I felt pretty good.  I had several years of health.  I married and was pregnant with my first child.  During the pregnancy I developed horrible headaches again, and kidney stones.  After a 26 hour labor, my son was born.  I felt ok for a few years, until I was pregnant again.  While pregnant with my daughter the sickness and pain was horrible.  I had kidney stones that blocked the exit of my kidney.  I had to have a stent placed while pregnant.  I was terrified.  The stent helped and I made it through the last 2 months.  After my daughter was born I had surgery to remove stones.  My last pregnancy several years later also took a toll.  I lost feeling in m right leg and dragged it for the last few months.  Only 6 months after my son was born, my daughter underwent brain surgery.  She needed to be lifted and carried.  Then 6 months later she had spinal
surgery.  Six months after this we moved, and this is when my body spiraled out of control.  I could no longer ignore how much pain I was in.  I needed answers.  I had 3 kids who needed their mom.

I started researching my symptoms.  I had many of the same symptoms my daughter had.  I found a few docs I thought could help me.  One was a spine surgeon and one was a geneticist.  They both confirmed I had a Connective Tissue disorder called Ehlers Danlos Syndrome.  The geneticist also diagnosed me with Postural Orthostatic Tachychardia Syndrome.  I underwent surgery last September to fuse my c1-c2 vertebra.  But the pain has not stopped.  I saw my daughter's neurosurgeon in June of this year.  He confirmed that I had Chiari I Malformation.  He also felt I had flow issues because the base of my brain is so large at the opening of my skull.  He recommended a decompression surgery on my brain.  I am also on a waiting list to see a heart specialist about my POTS and possible Mast Cell diagnosis.

Every day is an uphill climb.  I try to do the climb with grace and love.  Even though I hurt every moment the pain varies.  Some days I can push onward, others it is hard to even get out of bed.  But as a mama and wife my job is never over.  So for their sake I do not give up.  I will keep looking for answers and a way to make it!

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!

Sharing the Journey

September is Chiari Awareness Month.  The thing is, even though this is the month to educate others about Chiari, our fam tries to do this all the time.  I think when you live with something the average person has never heard of, you get good at explaining it.  I love the people who truly want to learn.  They listen and reassure you that they heard what you were trying to say.  It reminds me to be mindful of where others are.  We all have crosses to bear.  For our fam it is Chiari, EDS, and ongoing medical treatments and bills. But I try to never take lightly what others may be going through.  I want myself and my kiddos to stop and listen to where others are.  To find out how we can walk with them on their journey.  We can be a friend to someone, sharing you heart and letting them share theirs.  I think this is how change is made!  You become passionate about things you are close to. 

Recently I have heard Chiari compared to many things.  In our attempt to spread awareness, sometimes we drag other illnesses down.  No matter if you have Chiari, Cancer, Parkinson's, CF, or a host of other things, your story MATTERS!  I know it can be frustrating to constantly be misdiagnosed, or told your illness does not exist.  It can be heart wrenching to watch your child suffer day in and day out.  It can be exhausting explaining to schools, docs, and friends what Chiari is.  But stop for a moment and think before comparing it to another serious illness.  Would we as Chiarians want to hear, "Well your headaches are really just a bad migraine." or "You stumble and fall sometimes, oh me too!  I am such a klutz!"  We know our headaches are not a migraine.  We know that balance issues are not because we are clumsy.  Our brain is hanging out of our head.  

I guess I worry we may lose our compassion.  We may think our problems are bigger than someone else's.  Is this the right attitude?  Will this way of thinking help a fellow human? Where do we draw the line when we start comparing illnesses?  

A friend of mine has a darling little girl!  This babe was diagnosed with Prader Willi Syndrome when she was tiny.  To learn more about Prader Willi click HERE. This mom has embraced her daughter and all her health concerns with an understanding heart.  She has educated, advocated, and prayed for her sweet girl.  She walks along side other families in this same journey.  Her daughter has suffered and will suffer many trials in her life.  And yet, she would never say "my daughter suffers more than yours."  Her hope and prayer I am sure is the same as mine....please God let both of our babies grow to love and praise you even in the hard times!  

A lady I know was diagnosed with Cancer a little over a year ago.  I do not know her well but added her to my prayer list.  I was so amazed by her beautiful facebook posts.  She went through 2 rounds of chemo...she was one very sick lady.  I never heard her complain.  I never saw a post that asked for this to be over.  She fought, she fought hard!  And she won!  She never gave in to the negative side, and inspired so many with her courage.  Ok, so I do compare myself to her... but in a good way!  I try so hard to hold myself up to this same standard.  I have heard time and time again from doctors, that the worst thing is giving in to the negativity.  Climbing the mountain is hard no matter what your mountain looks like.  You may not hit the summit....but you can make the climb as positive as possible!  And I loved this about her!  She made her journey one of smiles, memories, and never giving in!

Whether you are battling Cancer, Chiari, a divorce, lost job, painful past, or just complete sadness, we all have a story.  We are all on a journey.  None of us is more important, or needs to be heard more.  We just all need to be heard.  To be understood.  To be loved.  I am so blessed to have a wonderful support of family, friends, and a wonderful Creator.  And even though I will advocate, educate, and teach others about Chiari, I pray that my children and myself never compare our walk to yours.  I pray that we can be here to listen, learn, and share for others too!  

All I can do is say thank you....

My post the other day was a little doom and gloom.  Sorry about that!  Had a rough couple of days.  Back t normal again!  I did receive some really awesome messages from friends.  Apparently I had a few people worried!  But it is always nice to hear from people.  And one of the messages was so special to me.  It was from a lady who inspires me very much.  Her and her husband have been through so much physically.  And yet every time I see them they have a smile on their face.  They are always the first to help out and volunteer their time for various things.  They have so much love and share it.  The other day, she shared it with me.

The story she told me was about walls.  Sometimes we think of walls in a negative way.  We think of needing to find a way over walls when life gets tough.  Or we think of crumbling walls either literally or figuratively.  But as she reminded me, walls are also a source of protection.  She reminded me how so many pray for our fam, and how we have walls of love and protection built around us.  What a beautiful reminder of how community works!  Over the past couple of days I have taken so much comfort in knowing those walls of prayer and love have been built around us.

Another wonderful friend wrote a little note reminding me of finding things to bring me joy.  One of those she mentioned was music.  Now I love me some music!  Sometimes I do not get to listen to my 80 hair bands like I would like.  But I do listen to some jazz and country in the car.  Today I flipped on the Fish to hear some inspirational music and heard "All I Can Do(Thank You)" by Mikeschair.  It reminded me I do not even deserve this awesome life I have been given.  It is all Grace, and I need to remember to be thankful oh so thankful for that!  It is soooo good to have those around us who do not admonish us when we are down, but rally around us bringing hope, love, and a little bit of grace!  So blessed by that!

Get your little bit of HOPE HERE!

Do Miracles Run Out?

The past week has had some big bumps.  Every time I think we may have turned a corner, another wall pops up.  Thankfully we have learned to scale walls fairly well.   We have been so blessed! Our friends, family, and perfect strangers have carried our fam through some pretty awful times.  We are grateful beyond words.  I used to write thank you notes and get them in the mail as soon as I could.  I wanted desperately to show my gratitude.  Sadly I have pulled away from this.  Not from lack of wanting to, but the pain of writing makes it very hard now.  I have given into sending emails and FB thank you's. It makes me sad as I want to show how truly thankful we are.

I know many of you have prayed for us over the years.  I know each prayer has put into motion many of the miracles we have witnessed.  But you know how miracles pop up at just the right times....well I often wonder what happens when the miracles start to run out? We are clinging to Hope that ours have not yet hit the bottom of the well.  We are praying we have a few more miracles left.  The truth is...I know our miracles are something we do not even deserve, a special gift.  Maybe this is why I treasure even the smallest ones so much.  And yet my human heart fears what happens when our miracles run out.  What will my family do?

If you have ever gone through a medical crisis, you know what it does to your finances.  Imagine having a daughter with a chronic illness who sees 4 specialist.  Also a son with 2 chronic illnesses who sees 4 specialist.  And then yourself who has 2 chronic illnesses plus several other life altering illnesses, and you see 6 specialists.  I can honestly say we have hit bottom.  Between prescription costs, medical fees, co-pays, and travel to see docs, our finances no longer sustain us.  You know I HATE to talk finances.  In fact, when I hear the word finance or money, I cringe.  I call bill collectors (which are all necessary bills because we have zero debt other than medical and one car payment) and plead with them to be understanding.  Most of the time I cry, sometimes I yell.  Not because I am angry, because I am at my end.  We exceed the amount to have assistance, but do not have enough to pay our electric.

We were able to save our house last year with a miracle.  But now we are not sure if staying is even the right thing.  We have a wall collapsing in our basement, a ceiling caving in, a well that needs pampered, and a septic on its last leg.  My wonderful hubby leaves at the wee hours of the morning to go to work to get as much overtime as he can.  We try to be frugal in all we do.  I buy my kids lunch off the dollar menu once in awhile and I have terrible guilt.

Why I am writing this?  Why am I airing all our "dirty" laundry?  Because sometimes the prayers I need are for sanity when calling the electric and gas company.  Sometimes I need a friend who says it is ok to treat my kids to 50 cent cones.  Sometimes I need someone to call and cry with because I do not know how we will make it to the next pay day.  And sometimes I need to be reminded how blessed I am, and need to be thankful for what I have.

My heart is sad tonight.  I had to cancel my doc appointment with Dr Henderson in Virginia.  Sadly I could not pay the money that is required to see him, or even pay for the expense to travel there.  I am disappointed because I had hoped he might have some answers to help me.  I am angry because the cane I do not want to use, glares back at me everyday, taunting me as my right leg drags more and more.  Frustrated because I am on a year waiting list for another doc who might be able to help.  Confused because one day I feel a little better and then I pay for the good day for 3 days.  Irritated at myself for complaining, for needing help, for asking for help.  Annoyed that this life is filled with so much suffering, and that I am even daring to complain about my little plight.  But grateful...always grateful that this is not my HOME.  I have a future somewhere else, and so many have lovingly carried me on this rough road!

How The West Was Won and other little known adventures....

Here is your challenge: Take a trip out west (2.5 days to be exact) in an 8 seat minivan with 7 other passengers. (3 of them your children, 2 your parents, and 2 your younger siblings)  Should you choose to accept this challenge, you will probably loose your mind.  But should you choose to stay home in your warm,comfy bed, you will regret it and miss an adventure of a lifetime! Well of course I took the challenge!  I mean seriously who would pass up something like that!?

We headed out on a hot, humid early morning...scratch that...We headed out on a hot, humid, almost lunch time morning.   What a ride!  God Bless my dad who drove about 92% of the time.  And my mom who sat in the middle row and tended to all the kiddos.  And my sis who set in the middle of 2 of my littles in the way back seat!  Chan managed to make the whole 2.5 days with out puking in the car.  I was able to stare out the window and imagine the wagon trains traveling through the deep rifts of land.  All in all it was a very pleasant trip!  We managed to make it to Colorado with our minds still in tack.

As we crossed the Colorado border, I was waiting in expectation to see the mountains popping up in the distance. I love Colorado mountains.  They are not like Pennsylvania mountains.  PA mountains are lovely.  You are driving and are gently consumed by their majesty.  They well up around you like gentle hills climbing into larger mountains.  Full of greenery and depth. But Colorado mountains just appear.  One minute it is flat, quiet.  Then you look out and see great sharpness spiking out of the earth.  It causes you to look and make sure you have seen correctly.  There they are..spread in front of you! I love that moment.  I wait for it.  As a child, I was disappointed if we hit the border at night.  It meant having to wait one more day to see those mountains.

Seeing my Grandma is like seeing the mountains.  She is amazing!  I have always been in awe of her.  My Grandma is one of the most graceful, strong, confident women I know.  Her house is a place of warmth, and beauty. Going there is still a special treat!  Grandma is 89, lives in her own home, and still sells Mary Kay!  I like to think I get a little of my crazy from her.  She has never had trouble speaking her mind, and even when she is down she is up.  Her courage in life is a true example for our family.  And this is the lady I just spent 10 days with! Yep pretty cool!

We had a great time!  I felt really good there.  My joints did not ache at all.  I had a few headaches and wore out but nothing major.  Some highlights...hmmm...where to begin?  My dad and I took the kiddos to a really cool bug museum.  The bugs were tropical bugs from all over the world.  All them were pinned and displayed.  Aidan got some great ideas for the future.  My aunt and 2 awesome cousins took us to the Olympic Training Center!  I was super excited to be there!  And even more mind blowing...my 2 cousins train in the Olympic pool!  We had a shopping day at the outlet mall in Castle Rock.  My dad took my brother and Aidan on a restaurant tour in Denver.  They went to 3 restaurants featured on Man vs. Food.  Aidan tried Elk.  I was able to see my super cool cousin who lives in London now.  I held my little tiny cousin.  Made me one happy girl to hold a wee one again!  The kids played, and played, and played with all their cousins!  It was awesome how they all got along and played like they see each other every day!  Brooke had a sleepover at my aunt's house with cousin Izzy. They even had pedi's!  My aunts all cooked some pretty rockin' food which always led to conversations around the dinner table.

It was so refreshing to sit on my Grandma's deck, look at the mountains, and enjoy her gorgeous backyard.  Spending time with her was a blessing.  I lay in bed my last night there and prayed for one more visit to Colorado.  Then I remembered last time I asked for one more.  I felt like a little kid at the store, begging my mama for one more piece of candy.  Promising her it would be the last time I asked. Just one more time to sit and hear her voice, see her flowers, sip coffee in the morning with her, eat cookies and drink Dr Pepper.  When I was a kid, I always wondered why my mom, her sisters, and my grandma would put on the sunglasses when we were leaving.  Whether it was still dark, we were at the airport, or standing in the driveway...the sunglasses always came out.  Early Thursday morning my sunglasses were on too.  The hugs were tight and long.  The tears stung my eyes and were hot on my cheek.  I quickly swiped them away, wanting my babes to see mama smiling as we said good-bye.  Choked up "I love you" were uttered as we all crawled in the van.  The first few minutes driving away are always very quiet.

The ride home is longer than the ride there.  On Friday, I had a rough day.  Not sure if it was the altitude change, but I fainted 5 times.  It was scary and I wanted it to stop.  Thankfully it did.  I felt better Saturday and we made it home safe.  It was a beautiful adventure with my fam!  Not sure if it is my 36 years or my seemingly endless travels to visit family, but I can see the value in the time spent.  I do not take a moment for granted.  Thankful beyond words to my parents who helped us go!

Quick Update...

I would love to sit and write a book about the wonderful time we had in Colorado.  How my parents blessed us with this trip, and how I was able to spend time with my Grandma.  In the next few days I will find time to reflect on all this and write it down!  For now I wanted to give a quick update on our school decisions.  You know how sometimes you think you have it all figured out....I mean it seems so clear any other decision seems insane?  Well that is how we felt about the kids attending school this year.  We felt like it was time, and we had some pretty good confirmation that it was a sound decision.  Several things have happened over the past few weeks making it very clear school was not an option right now.  Many things I can't share here.  But in my heart I knew this was not going to work.  One of the main reasons was the kids health.  Brooke does well but still wears out very fast.  I was worried about a whole day of school.  Aidan is having headaches every day now.  He is struggling with subluxations and dislocations of his shoulder and hip. This makes any kind of rough housing painful. And being a boy trying to stay clear of this is hard. I found a great online program that my mom is going to help me with.  And who knows what the future will bring!  Always an adventure!

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!

Scarlet and Scout

I have waited a few weeks to write this post.  Honestly I figured most people would find me completely off my rocker.  But there is no denying it....we adopted 2 puppies!  Ok I will back up a bit and share their sweet story.  And give you a chance to fall in love with them too.

We had promised Brooke a puppy last summer.  Brooke has a terrible time sleeping.  Actually all my kids do.  Nights are hard in our house because we are all in pain.  We wake up a lot, and have a hard time falling asleep.  We thought a puppy would help Brooke to relax and sleep better.   First my health was bad, and then many other things happened.  We just were unable to make it possible.  Then in the Spring, my mom found these adorable bunnies for the kids.  Sadly Aidan and Chan had bad allergies with the bunnies around.  We found an awesome home for them, much to my relief.

The kids and I started talking about the puppy idea again.  I told them I just did not see how it would be possible.  We have to have a purebred hypo-allergenic dog because of Brooke and I.  Normally these dogs are pricey.  Plus most of these dogs need groomed regular basis.  None of this is in our very tight budget.  As we were talking we thought of our friend's dog.  She has a Chinese Crested.  These dogs are hypo-allergenic and do not need to be groomed.  But I figured they were pretty pricey.  I contacted my friend, and come to find out there are 2 kinds of Chinese Crested-hairless and powderpuff.  Neither shed nor need groomed.  The powderpuff kind is less expensive.

Well in one short day...my friend had located a puppy!  She was a little 5-month old powderpuff.  We were super excited to go meet her.  My mom, the kids, and I took out on our little adventure.  When we got there we met our sweet girl but she had this extremely cute brother.  They were so attached to each other!  We just fell in love with both!  I mean how could you only leave with her? My heart was breaking for her little brother being left all alone!  I know ridiculous....but true.  I texted hubby.  I know when he read the text he laughed and shook his head.  But of course he responded with, "One why not two? :)"  The 2 sweeties rode on Brooke and Aidan's lap the whole way home.

We have just fallen in love with the puppies.  They have been little blessings to our family.  No maybe we did not need to take both, but Aidan and Brooke sleep with their pups every night.  Sure it is an extra expense, but the kids have given up much because of their illnesses.  This is something the can love and cherish.  These puppies will comfort them in the bad, sick times.  So no more waiting....May I introduce Scarlet and Scout!

Best Buddies: Aidan and Scout

Sweet Girls: Brooke and Scarlet

A Curse Turned Blessing

In our fam we HATE Chiari!  I know hate is a super strong word.  In fact so strong, I tell my kiddos not to use it.  I mean we are called to love...but when it comes to this awful illness I think hate pretty much describes how we feel.  It has robbed our fam of some pretty important things- finances, time, vacations, and many everyday activities that most take for granted.  Yesterday I was reminded of a reason to see a blessing in the curse!  I witnessed 3 little girls and one young man posing for the camera with big beautiful smiles on their faces!  My heart was warmed as I looked on these faces of courage! All 4 of these kids have Chiari, each fighting their own battle, but embracing each other with love!

Yesterday a sweet friend, Colleen Shawk from {we love your love} photography, took pictures of 4 chiari kiddos (2 of them mine).  I probably would not have met Colleen had it not been for Chiari.  She has generously snapped my kids photos over and over again.  Every time she has captured their innocence and the special traits that make them them.  She donated her gift yesterday to take these pics.  We rounded up 2 other little girls with Chiari here locally.  They just happen to be 2 of Brooke's closest friends.  Why?  Because Brooke knows they understand.  They would never dare make fun of her challenges.  They understand if she needs to stop and rest when playing.  And they are blessings who we never would have met had it not been for Chiari.

I can't wait to see these amazing pics!  The idea was to use these pictures to raise awareness about Chiari.  It is also to tell everyone about our Unite at Night Walk on June 21 at Price Park.  We would love for you to be a part of this Walk!  If you want to learn how you can help go here.  Join our Team!  Help fight for Aidan and Brooke (and all the sweeties with Chiari!).  Help raise funds, or just come to check it all out!  All the proceeds will go to CSF to help find a cure and spread awareness.  A nice evening walk in June....does that not sound lovely?  Bring your kids, bring a loved one, walk your dog....just join us. We want to show others how something we hate...something cursed and awful....can bring many blessings!

Oh and of course pictures to come!!!!

A Day in the Life....

I always see the ad for the show "A Day in the Life" advertised on Hulu.  Of course the show is about "people" other people consider exciting.  Most people would not want to watch a day in the life of the everdayness of our family and friends.  We would find it mundane, even repetitive because we go through those motions everyday.  I even heard someone say, "When someone asks you how you are, they really do not want to know."  What???  People do not want to hear about my life?  Well I guess then this post will be a snooze fest for some.  I am different I guess.  I love to hear how my friends and family are doing.  I want to know what makes their life special.  I love it when I get letters from others detailing their story.  For me it is a  window into who they are.

A day in the life at my house is never ordinary.  I pray every day for the ordinary.  Don't get me wrong, I love so many aspects of my life, but some plain stink!  I feel like I can say that without seeming down and out.  I mean I push through everyday knowing there is better to come, having Faith of dancing in Heaven.  But that is not today.  Today stinks.  I will make it work with Faith and Grace.  I will rejoice in the small victories and the love that surrounds me.  But sometimes I need to just see it for what it is, a plain yucky day.

"Why is today yucky?" you may ask.  If you really want to know, keep reading.  But I understand if this is where you say..."too much info girl!"  And close this blog.

Yesterday was beautiful!  Beautiful weather, beautiful sunshine...until the rain.  I always start feeling yuck with the rain or storm pressure. I woke up doing the normal stuff a mama does.  Brush teeth, get dressed, help kids brush teeth and get dressed, feed multitude of animals, feed multitude of children, some laundry, some dishes...but then my poor bug Aidan was miserable.  I decided to call our ped who could see him at 11:20.  I knew this meant one extra trip to canton.  Hmmm my gas tank was low, could I squeeze in another trip?  Yes I actually have to think this way.  So we scrambled to finish chores and school work.  My head was a dull ache and body was pretty creaky.  We made it to doc, and then to target to pick up meds.  Then home, quick lunch, and another load of laundry.  I laid down for five minutes, and of course phone rings.  No more time to rest, off to my doc appointment.  The chairs in the waiting room are pure torture...but no options.  Push through it and keep a positive attitude.  Get through appointment, walk out to get next appointment and there on the counter is a huge vase of lilies.  I try to act cool, but covering your face with your hand looks slightly odd.  Almost instantly I feel faint, hot, and sick.  Thankfully my doc saw it happening and told me to just go wait in hallway.  She came out there and we finished up.  Glad she is so awesome! I left feeling really sick.  It is hard to explain but it is a weird sicky headache that makes everything feel gross.  Kinda like being car sick.  I drove home, hurried to get dinner and all the kids dressed.  We had to head off to Aunt Amy's play.

Now at this point every part of me was screaming to just go lay down!  Evening is so hard, and going out in the evening with 3 kiddos(amazing kiddos, but still kiddos) is quite a feat.  We managed to get there for the play, which was amazing!  So proud of Amy!  After the play Chan was tired, and poor Aidan was still miserable.  But we needed to see Amy, she needed to know her fam was there to support her.  We stood in this chaotic line to see her and other cast.  In this crowd of people it became very hot.  I started to feel queasy and light headed.  I kept telling myself "You have to do this, stay focused!"  Chan decided to get upset, and wanted to be held.  I picked him up.  I was trying to keep Aidan focused because he was feeling yuck.  Then Brooke looks up at me and says, "Mama I feel dizzy, my legs won't hold me."  She was pale and I understood how she felt.  I leaned her up against me and held onto her with my free arm.  (I believe my girl suffers from POTS like her mama)  I prayed...please let us get through this, please let me stay standing and not faint right here.  Once we moved a little it cooled down, and Brooke and I felt a little less dizzy.  We made it!  We saw Amy!  Thankfully I was able to get everyone in car and head home.  The ride at night is always hard for me.  But the rain makes it even worse.  The kids know I need complete silence because I have to just focus on driving and praying.  After getting in, changing everyone into Pj's and tucking all in...I crash.

So today my body is yelling at me!  It is angry for the mistreatment yesterday.  But here I am with 3 kids and another day.  There is not much rest, there is not much comfort.  I have to admit, I silently let the tears fall. I pray for just a moment to not hurt.  Like I said my day in the life is never ordinary but I see hidden blessings. I am thankful to know He is supporting me each day. I try to stay focused, but I am far from perfect.  Sometimes days just stink!  So I may not dance today, but someday I will!