Ladybug Secrets

Ladybug Secrets:
Don't let the small stuff bug you. And Spot new opportunities.

Tuesday, August 12, 2014

Whenever I turn around....

I have been trying to update this page for a few days now.  Honestly I was having a hard time focusing.  My heart has been broken and aching for the families in Iraq....quite truthfully my struggles seem petty.  And they are.  Not that what our fam goes through is not a struggle or even hard for us.  It is.  But when I put it into perspective....we are beyond blessed!  I complain of medical bills but we have doctors to see.  I complain of pain but I have bed to rest my head.  I never want my words to seem like complaints but tiny prayer requests or updates.  It is humbling to live in a place where medical care is truly amazing and I have the freedom to type out my beliefs.  My prayer is my children never take it for granted.

The past few months have done a flip on us.  We had a little over a month when we first moved where I felt truly great.  It was a blessing.  I am back to struggling with several health issues.  As of right now I am not sure what is causing what. I still have the awful head pain at the base of my skull which increases whenever I move.  I have a rushing in my head whenever I change positions.  This makes me light-headed and ill. I also have a whooshing sound in my head.  Almost like my head is filled with water or I am underwater.  This is not something that comes and goes...it is constant. So sadly it is quite maddening.  Of course I am still dealing with joint issues but these are minor in comparison.  I am scheduled for a sleep study because when I roll over in bed my throat begins to close up. This makes breathing hard.  My neurosurgeon also wants new MRI's and a lumbar puncture.  I have several appointments with different docs over the next few months.  I will be seeing a cardiologist, neurosurgeon, sleep specialist and mast cell specialist.

Moving closer to everything has been huge though!!  Being able to get to places faster makes life so much easier.  I do spend a good deal of my day in bed, resting.  It is very hard to hold my head up.  I have been told I can't give up.  Just to clarify: I am not giving up or do I ever plan to.  But sometimes my fighting is simply to feed my family dinner or do the laundry.  Our family does not have the ability or resources to go to one doc after another.  I will be seeing these docs in the fall to try to create a game plan. I have learned  though part of my fighting may be to just find a balance.  This balance to others may seem like giving up.  It is not.  It is learning to function in the body God gave me.  I am not convinced one more surgery will help...or one more procedure.  I am convinced my family needs me and I need them.

Aidan and Brooke both had MRI's done in June.  The neurosurgeon read them and they are both abnormal.  Both have increased Cranial Instability.  They have a retroflexed odontoid (which we did know). And their GO scores (for those who care about this ;) ) are Brooke- 9.4 and Aidan- 9.8.  And a CXA of Brooke- 128 and Aidan- 130. Thankfully Brooke's herniation is stable and Aidan's has only changed slightly.  All of this means they most probably will need fusions.  They could be soon but the plan is to wait as long as humanly possible.  This is why both of them still have bad headaches.  Brooke will continue to wear her collar and Aidan will be getting one.



Both kids are starting school.  My mama heart is broken and excited all at the same time!  I am tearful over sending them away from me.  But hopeful and excited for the wonderful, new opportunities they will have!  I am also beyond excited for the extra help the schools can offer.  As of now we know Brooke has a form of dyslexia and aphasia.  Aidan was tested last Wednesday.  Although I have not received report yet, they believed he also had dyslexia.  I also learned while sitting listening to the doctors, dyslexia is probably why I struggled with reading.  Due to Brooke's health actually being a little better than Aidan's, she will start school on a full day.  Aidan will most likely start at half days.  He will have his core subjects with a teacher one on one here at the house.  He will then go into school for the other subjects.  Hopefully by the second part of the year, he will be ready for full days.  I can't say enough how amazing the school district has been!!!  I also can't say enough about the NeuroDevelopmental Center at Akron Children's!  Both have bent over backwards to help me understand all this and find a way to help the kids.



We have seen so much change for us over the years.  The constant is....we turn around to blessings always!  Friends who drop off dinner just to help out.  Family who transports us to doc visits and the store when we can't.  Church who prays faithfully for healing or at least acceptance to move forward. A van gifted to us and keeps on running even when I think it will not.  A job that is far but steady.  Doctors who may not know the answers but stick with us.  Friends who watch the kids for free so we can go to appointments. A once a week coffee with a friend so I do not have to pay for psychological help. A hubby who stays and provides even when the burdens seem never-ending.  A country where I can live in a house with heat and air.  So thank you!  Where ever you fit in this list...thank you!!!  You are a blessing to our fam!!


Monday, May 12, 2014

a break from blogging not life

I took a little break from blogging and I plan on keeping it up.  I just wanted to give an update since I have not posted since our move.  Life has been capital C..Crazy around here.  First the move.  Which I can't say enough how much I love it here.  Not sure the whole fam agrees but everyone is pushing forward.  It is different to live "in town".  We did not have a ton of land but had a lot of privacy.  This house is not making us sick though.  That is the big neon sign news!  There is no mold and where there is no mold...there is a happy mama.  

Right after we moved, Aunt Amy had to come stay with us.  The group home she was in was seriously neglecting her.  She was exhibiting behavioral issues we had never seen in her before.  It was quite the adjustment to have her here.  While she was here, Brooke was displaced to couch and I felt like I ran from one meeting to the next.  We finally figured out the best solution for her and Amy moved into an adult foster care home.  She is doing great and healthy again.  We are still busy trying to switch everything over.  Moving her out of the old home...into our home...and then to a new home was a huge undertaking.  Every box I carried I prayed would not do me in.  Her room in the group home was filled with dust and dirt.  It was so not a pleasant experience.  

3 days after Amy moved out, I started babysitting 2 littles.  I love it!!!  They are friends we met in Athens. Small world, right!?  They now live up here too.  Although by night I am completely beat, having them here is so much fun.  I especially love the cuddles of the tiny one.

Aidan and Brooke are enrolled in school for next year.  Yes I know I have talked about this before but this year is for real!  Promise!  It needs to be.  I have learned one important thing over the years....I love having my kids home with me but I am not a teacher.  So now we play race to catch up before August.  I am a nervous wreck.  I know how much ground we need to cover and the rest of the fam is like "ah it will be fine." It will not be FINE!!!  :) We need focus, learning, and a caffeine drip.

As I said before, I am doing so much better.  I believe it is the combination of no mold, the new medicene, exercise, and trying to eat super healthy.  This does not mean I am "cured". Sorry folks...no cure.  I do feel almost 150 times better than before.  I can get through a typical day without crashing.  By night every joint is screaming though.  I am completely off pain meds which makes many nights horrible.  Somehow I push through and manage.  I am thankful for the more energy and the semi better health.  This normally means those around you expect you to be at 100% when really you are only functioning at about 60%.  

So yes I do feel worlds better....but I still can't function the way a "normal human" would.  I still have quite a few limitations.  And honestly I am starting back to my old ways of over committing.  I am not stopping when I need to stop.  As a family we have re-defined the super important things to our fam. Some of these only rate as important due to need.  We are only going to focus on these things.  This means stepping away from many things, saying no to others.  One thing I am stepping away from is this blog.  I honestly do not even enjoy posting here anymore.  It was an outlet when Brooke was so sick.  Now I just feel like it is random words on a page.  I love to write, and want to keep writing.  I will figure out how writing fits, it will just not be here.  I may occasionally come back here to post health updates since we have so many awesome people who pray for us.  But for now...this is it.

Thank you all for you love, prayers, and support.  They have meant the world to us!

Monday, March 10, 2014

Why we are staying home tomorrow...

Tomorrow we were headed out to Maryland to see a Neurosurgeon for me who specializes in Chiari and EDS.  I have to be honest this appointment has been looming over me like a bad dream.  I have heard amazing things about the doc, so it was not that.  I just had this sick feeling...the feeling you have when you really do not want to do something.  First it is a long drive, plus the expense. We are in the middle of moving.  This doc is not covered by insurance.  Just to see him is $600.  And the biggest reason....I do not want another surgery.  I really have felt that surgery is not the answer for me right now.  

Thankfully God must have been thinking the same thing.  I met with an awesome pain management/neurologist last week at the Cleveland Clinic.  I will say right off I was very nervous about this appointment.  I worried he would not hear me or worse not help.  Before going in I just prayed that I would hear him and he would hear me.  It was one of the best, informative appointments I have had.  No we did not see eye to eye on everything, but we both took the time to listen.  

I am not going to go into great detail but wanted to give the basics.  He feels like I am having several different kinds of headaches.  I agree.  He thinks I am having some nerve related headaches in the back of my head into my ear.  These are related to my surgery.  He feels like I am probably having some chiari related headaches.  And he feels I am also having migraines.  I was not sure about this.  I have had migraines in past but they have never felt the way my current unidentified headaches feel.  He explained that a person can have various types of migraines over their lifetime.  He also felt like I may be having headaches due to the pain meds I am on.  This also makes sense since I do not tolerate pain meds well at all. He would like to focus on the migraine type headaches, and pain med related headaches first.  The Chiari and Nerve headaches will be slightly more complicated.  He also felt the moldy environment is contributing to my overall poor health.  

The first thing he wanted to deal with was my pain due to my EDS.  I take the pain meds to help with the extreme ouch in all my joints.  He recommended a med that will help inflammation and will help me get off pain meds.  He gave me a schedule to help me to safely come off pain meds.  He also prescribed a steroid to help with the headaches as I come off them.  The next step was to try a migraine med on the headaches that might be migraines.  He also wanted me to start magnesium as this can naturally help migraines.  Other things he recommended- physical therapy, massotherapy, and water therapy.  I need to get some weight off so my joints can be healthier.  What I loved the most is he said his hope would be that I could eventually manage my health through PT, exercise, and eating right!  My kind of doc!!  I would love to kick the meds to the curb!  

We talked about other ideas for the nerve and chiari headaches.  He really believes though getting these other things under control will only help those issues...plus he wants to focus on certain things.  I could not agree more.  He strongly encouraged I wait for any kind of surgery until we get my pain under control.  Again totally agree!

The drive home I chatted with my mom and felt right away I needed to postpone the trip to Maryland.  I have felt on edge about it for awhile now.  The doc in Maryland will be there in 6 or 8 months if I still am struggling.  I want to do this right!  I want to have the possibility of no new surgeries.  And I am happy to report some awesome news!  The med for my EDS pain is A-Mazing!!  I have literally no pain in my joints! None...not even when I get up in morning!  Plus much of the clicking and subluxations I was having are settling down.  I do still have bad neck pain and some lower back pain, but seriously....I am thrilled not to feel like I have a 90 year old body!  I have had a few headaches.  One went right away with migraine med.  The other 2 have not.  But I am confident with time we will get the headaches under control.  Another cool part is I have had NO pain meds since Friday night!  WOW!  No not everything is fixed, and I will need more time to figure this all out.  This, this healing is why we stay home tomorrow....to move forward and not look back!  


Monday, March 3, 2014

Crazy Little Thing Called Love

Your watching a romantic movie....it is the time in the movie when the 2 leads realize they are destined to be together.  Everything falls into place, the loves fall into each others arms, the music starts, and the story goes on happily ever after.  You wipe away the stray tear from your cheek and sigh. Yeah that is totally not how it happens in real life.  I mean maybe things start out all romantic (not in my case!) but trust me it will end fast!  True love stories are hard, dirty, and rough.  Some days they will make you cry, and others scream really really loud.  But the cool part is you have another human to be there, in the dirty trenches, crying right along side you!

Yesterday Tim and I celebrated 12 years.  You want to know what we did?  We went out for a late dinner on Saturday because hubby had to work late.  Got home, I was way to tired to sit upright on couch.  Hubby carried our TV into bedroom to watch a movie.  We fell asleep.  No romance, no music, just sleep!  Since no kids were in the house we slept in.  In fact, I was so sick I spent all day in bed.  He cleaned, and rested.  Kids came home late because my amazing parents kept them all day!  Snuggled with kids and sent them off to bed.  That was our anniversary.  And that my friends is how we roll in our home.  Nothing fancy, nothing special...but it works!

When I first met Hubby I was unsure. He did not seem to talk much.  I mean he was cute, but thought I would let him pursue me.  So a year later (yes girls, a year) he asked me to go with him to his friend's house for a party.  Like any smart girl would do I asked my friend to follow us just in case Hubby was a psycho killer and decided to dump me on side of road.  Thankfully he was not.  A few months into dating Hubby said he wanted to break up with me.  I very calmly asked why.  He said "I dunno."  I told him that was dumb and unless he had a good reason we were not breaking up.  And here we are all these years later.  Ah can you feel the budding romance in this story?

If you are waiting for the part where he swept me off my feet....well it is coming.  I am very practical.  Most girls may be drawn to a man for his views, his looks, or possibly even his money.  Hubby likes to bring up all the time what I find is his most valuable quality...his stable job!  Yes folks it is true.  I fell in love with Hubby because he was a job holder.  And when I met him he had his job for several years.  Now many of you know we have dealt with job loss over the years.  Hubby never lets this keep him down!  He will be out there looking for something else to support his fam.  See for me it is not because I want to be "supported".  I loved working and having a career.  I just wanted to make sure Hubby was not a lazy person I needed to worry about.  He has shown time and time again how much he cares for us by long hours, working in not so great jobs, and driving long distances.  This is love! Not fancy flowers and expensive dinner love but "if it puts food on my family's table I will do it" love.

In the movies and tv proposals are over the top.  Men put great thought into where it will happen, how they will ask, and even who will be there.  Honestly I had half a mind to just take matters in my own hands and ask him.  But I waited patiently until he planned it all out.  One night while visiting him at his duplex...we each lay on our "own" couches. Even back then I was not much for cuddling.  I liked my own space, so we each had a couch.  We were laying watching ER.  At a commercial break Hubby came next to my couch and said, "Hey ya wanna get married?"  Now how could I possibly refuse?  Of course I said YES!

When we said "I do" we never dreamed what our life would hold.  We hoped for a nice house, healthy kids, and great jobs.  Just because it did not turn out this way we never questioned each other.  Loosing a job, watching your baby have brain then spinal surgery, having to move away from family, having to give up a career because of poor health, saying good-bye to your home because it is making you sick, and watching your kids deal with chronic illness everyday gives you shared bond that is hard to even explain.  To top all that off, laying in bed why your Hubby washes dishes, puts kids to bed, and cleans up house after working a 10 hour shift is humbling.  He comes in and in a sweet voice says, "Do you need anything?"  He wipes my tears at 2 am when the pain is so bad I can't sleep.  He strokes my back when I have nothing left to give and assures me it will be ok.  He tells me I am beautiful even when I have gained 40lbs, and never do my hair.  He reminds me this life is precious and we are a team.  A team that fights, that hurts, that yells, but a team that rallies together and pushes forward...always!  This is my love story and I am thankful it is just a little crazy!

Thursday, February 20, 2014

My Grandma wears High Heels and Lipstick

Yesterday my grandma turned 90! 90!!! That is nine decades of seeing fashions come and go, 9 decades of meeting people, 9 decades of a wonderfully filled life. I did not get the chance to be with her on her birthday. Sadly I live many states away. I wish I could sit with her and tell her the impact she has had on my life. The ways she has made me a better person. How she inspires me to dream big and shoot for the stars. I am honored to be her grandkid....to have a chance to be part of her 90 years of life.

Most of my life I have lived a 3 day drive from my grandma. My parents tried to get us there as much as they could. Visiting her was like a dream. She would pull me up close laugh on my cheek, I could smell her makeup and sweet perfume. She made me happy. Grandma is(yes I said is) a Mary Kay sales director. She still wears the pretty clothes, fancy earrings, and always looks stunning. She lives in her own gorgeous home, and has a decorating sense I did not inherit. She loves people and people love her. She can help a girl who feels lacking feel beautiful inside and out. Not by simply applying makeup but by inspiring them to be great. I am pretty sure my grandma is the one who coined the phrase, "A little bit of lipstick changes everything!"

If you know me, you know I am not a makeup girl. In fact my makeup bag has 2 colors of eye shadow, one blush, powder, concealer, mascara, and one tube of lipstick. I did not grow up to sell MK like the majority of my family. But the lessons they teach, the strong women they are did not escape me. I look at my grandma and the 4 daughters she raised. All of them are women I want to be like. Women who are independent, loving, and rock stars in their own ways. My grandma taught us all to find our dreams and to not let anyone tell us they are impossible. To surround ourselves with people who will treat us right, love us for who we are, and help us climb the ladder of our dreams.

I wish more than anything in the world to have had the chance to live close to my grandma. I wish instead of hours and days, I had the chance to spend a lifetime with her. The time I do get with her is a treasured time. My mom and dad flew to her 90th birthday last weekend. My brothers and sisters, and myself, were her only grandkids not there. We all wanted to be there but sadly flying is not in any of our budgets. We were asked to write some memories about Grandma. I am going to write them below. My Birthday Wish is for at least one more decade to spend with my Grandma.

A few facts:
My grandma has 4 daughters and one son. She has 13 grandkids and 14(plus one on way) great grandkids
Grandma used to own 2 roller skating rinks in Texas.
Grandma was a 4-H leader, military wife, and still is a Mary Kay Director.
She has lived in 4 states but loves the mountains.
Grandma is hopelessly addicted to Dr Pepper and pie.
Even at 90 her eye for fashion is pretty amazing.
She is the most stubborn woman I have ever met and I admire this so much!

A few Memories:
I remember eating breakfast on her back deck and staring at the mountains.
I remember sharing an afternoon treat of DP and cookies.
I remember going to the Village Inn at midnight with my grandma, mom, and aunts. We would eat pie and laugh so hard.
I remember loving her home. Before we leave I sneak pictures. When home I can look at pics and remember her, the smells of her home, the warm, safe feeling I have when I am there.
I remember the trip I took in college. It was one of the best times in my life. Her and I spent a week together. We traveled to Wyoming, into the mountains, ate dinner out, watched movies, and shared our lives.

Grandma I love you!

Sunday, January 12, 2014

Sitting on the Fence

The last few weeks have been rough. Many have asked how they can help or specific prayer requests. Sometimes it is hard for me to figure out how to have others help. Not that I do not need it, or want it. I guess I have always done it, and so now trying to figure it out is really hard. We try to manage. Our family has become good at adjusting to this new life situation we are in. The Hubby keeps learning new ways to help me around the house. The kiddos are figuring out my "I can't move my body" look. Thankfully Brooke has been feeling good. She gets a few headaches here and there, but manageable. She is Chan's second mom and my comfort(she rubs my back and brushes my hair). Aidan has been struggling quite a bit. He has a headache most of the time, and his EDS is causing him pain. Lately he does not do well in stressful situations, and we are trying to help him cope with his pain. Chandler tries to be helpful by being my cuddle buddy. Sometimes I have to quietly remind him mama needs the bed to be very still. I then hear his sweet voice say, "Sorry mama, I sorry you don't feel well." He loves to stroke my face with his little hands. I try to treasure that but honestly sometimes I wish he would not touch me. I know terrible to wish your child would not touch you! But when every fiber is screaming, a little touch can be so harsh. Today my little man lit a candle for me at church. He saw his big sis do it for my friend who is sick. He said "I can't tell you who I light it for. It is a secret. I want to pray for you cause you hurt." Love all of them and their sweet hearts of kindness.

This post is going to be a here is where I am at post. Nothing fun or revealing. Just places I need prayer, and hopefully a bit of a testament on how people with my illnesses need more people in their corner. So I understand if you want to duck out now. Some illnesses you go to the doc, they find it, they treat it, and life goes on. Some illnesses need more aggressive treatments and of course you cling to the hope that in the end the treatment will work. With 4 of the conditions I have, there are few options. I had the c1-c2 fusion over a year ago. I am having severe pain in my neck from it. When Dr D did this surgery he told me the one screw is laying on my major artery in my spine. But he assured me he could remove it after the fusion took. So I thought this pain was temporary. A few months ago Dr D was brought up on federal charges. I have to be honest, at first I was a little annoyed he was not allowed to do his job! I mean he was the ONLY orthopedic surgeon who knew about EDS and helped EDS patients. A few weeks ago, Dr D decided to flee the country. Sadly he left many patients just hanging. There are many reasons why he had his licensed taken away, and I am not going into all these details here. The main thing for me...I am in pain and have no one to remove my screws. You may think I am exaggerating when I say no one...I am not. Possibly there is a neurosurgeon who can help...I will get to him in a minute. As for Ortho docs, most will not touch EDS patients and the ones who will have very little knowledge of what EDS is. This is a problem because they can do more damage than good. A good friend who had the same surgery as me needs her hardware out too. She saw a very good doc at a very well respected hospital. She was treated very poorly, and he gave her few options. These "other docs" just do not exist.

Moving on to my severe headaches. So my neck hurts every time I move my head. Some movements are not to bad, but some will literally make me feel faint. I get a searing hot pain throughout the back of my neck. It goes up behind my right ear and I feel like my ear drum is exploding. The headache that follows is a very intense pain from neck to back of skull to ear to forehead. There is nothing I can take to relieve this pain. If I get this headache, I must lay very still and wait. It becomes some of the worst hours of my life. I believe this is caused by the chiari and high pressure in my head. This is what Brooke's Neurosurgeon Dr B feels too. He recommends a decompression of my cerebellum. I agree to a point. My fear is the instability in my neck due to the EDS. I worry the decompression will cause more instability. I asked for a fusion of c1 to cranium at the same time. He recommends the decompression, then we can go back in and fuse. HHMMM well that would be 3 surgeries to that area. I would rather get it all done in 2. So this leads me to my other neurosurgeon option, Dr Henderson. He really is the last hope for most patients in my position. He is very good, but very busy and expensive. He is in Maryland so that means more travel. But after him...there is no one. Please hear me when I say this. I do not mean I will not go to anyone else, I truly mean no one else will see me, or has said they can't help me. My appointment with him is in March. I am holding my breath that he will combine removing my screws, doing a decompression, and a c1-cranium fusion all in one sweep. Or he will look at me and have another amazing solution.

I said earlier Aidan is having pain from his EDS. Poor guy I completely understand! I am not sure if it is all the weather systems this winter, but my EDS is flared up. It is quite odd for me to lay in bed, take a deep breath, and have my spine crack all the way down. I woke up this morning with my arm hanging out of socket, my poor shoulder. Aidan and I both see our geneticist in February, yes another trip to Cincy. I know he will be disappointed we have not started PT. Sigh. I will just have to inform him the money tree I planted has not grown yet. I do hope he will have some ideas on how to help Aidan manage his pain. Seeing your child suffer is horrible. But the big blessing here is our doc! I am so thankful to have Dr Neilson and his great knowledge on EDS.

Right now I am managing my POTS. I have had a few little episodes but as long as I keep my fluids up, salt up, and take my medication I do ok. On the other end though my Mast Cell is causing breathing issues and major flare ups. I believe this is due to the mold we have in our basement. We are in the process of figuring out how to move. The constant mold entering my system leaves me wide open for more attacks from smaller triggers like food and smells. I learned to be more in tune to my body this year. I found several triggers. One is the soap aisles in stores. I have to avoid them. Another is the Dollar Tree. Funny I know. But I have had 2 severe reactions while shopping in the store. I try to make all our own cleaning supplies but this becomes exhausting. In order to help keep these attacks low I really have to do this. Now enter in the doc who can help with POTS and Mast Cell. Dr Grubbs is in Toledo. He has done extensive research in both of these. He also works closely with my geneticist. But just to see him there is a year long waiting list to get a call to make an appointment which might take another 6m to a year. I am currently on the waiting list. I hear you say, "Oh come on Melinda...there must be another doc!" Umm no there is not. There is a local doc who works with POTS patients. I have heard he is good. But when I called his office they told me the first thing is a tilt table test. This is a torturous test for someone with POTS, but someone with Chiari and EDS too...live threatening. Thankfully I know this because the doc did not. My Neurosurgeon immediately said, no way! So I wait for Grubbs to call.

Honestly most days I see myself sitting on the fence. In front of me the beautiful field with open spaces and freedom. My children running and playing. On the other side I dare not to even look. I sit perched on the hard fence praying to fall into the meadow. The fence hurts so much, and I want off. Reality has showed me that I need to bring the blanket up on the fence though. I need to invite others to sit with me so I do not become lonely. I need to find ways to make the fence as comfortable as possible. Even if one of these docs has one answer that will make one little thing feel better it is HOPE. But may leave me still perched on the fence needing more help. Thank you for praying. I know reading this is possibly a turn-off. I know most may not want to hear about the complaints, "Just get up girl and move on!" Believe me I would if I could. That is why those who sit on the fence with me are so very dear!

Monday, December 30, 2013

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".