A Simple Nudge

I will start this post by saying this is about my faith walk.  It has no medical info, and I understand if you want to close the blog now.  For those of you who are staying, you should know I am not one to talk about religion.  My faith, yes, but religion, no.  I truly believe that as Christians we need to embrace other Christians no matter what church they attend.  We all fundamentally believe the same, and our divisions cause confusion.  Before I go on I will say I have thought a good deal about this post.  I have felt very nervous about writing it.  I have always had this need to be understood, and I fear this post may be hard to write in an understanding way.  Basically I feel the need to explain myself for decisions I have made and those I am going to make.  Why?  Well again I just want people to understand where I am coming from.  I guess it is my silly feeling of being judged.

I grew up in a catholic family.  We went to church every Sunday.  My parents where very involved in church as well as prayer meetings outside of church.  As funny as this is going to sound, my parents were charismatic Catholics.  Bet you did not know that was even possible, but it is.  We went to prayer meetings where the music was so alive, and you felt God all around you.  People would sing and dance.  I loved it.  I was young, and did not understand everything.  As I grew older we did not go as much.  But my parents still were around many families that had the same values as them.  For various reasons it was not possible for me to be married in the Catholic church.  I was very sad, but still went to mass.  When Aidan was born there were some things that happened that made me realize I needed to find a church home for both of us.  I did not leave the catholic faith out of anger, just felt at the time God was leading me in another direction.

This is when I found my wonderful First Christian family!!!  I can't say enough about the love of the people at that church!  They have supported our family through job loss, surgeries, and heart break.  The people of FCC have prayed for our fam with unending love.  I am constantly moved by these wonderful people who continue to love on our family!  This was also the church home where I worked for 3 years with the preschool age children.  I loved every Sunday sharing Jesus love with them.  What a Joy to hear them praise Him!  How humbling to hear their sweet prayers each Sunday.  They changed and grew me in so many ways.  I miss it terribly, but I also know my body could not handle this job anymore.  God knew this, He prepared my heart for this.

When our fam moved to Athens I felt very alone.  I missed my friends, my family, my home.  We started going to Brookfield Church.  All I can say is WOW!  It blew me away.  I made instant friends, and the service was alive and wonderful.  I felt like a kid again in those prayer meetings.  The music, sermons, and prayers moved me to the core.  When I say that I am so very grateful to Brookfield it is not an understatement.  I miss it all the time.  I have desperately wanted to go and visit, but have not been up to it.  I pray every Sunday for their growth, as they are a new church that will change Athens for the better!  I just know it!

Coming home was a huge blessing.  We felt so good to be in our house again surrounded by those we loved.   I started searching for a small church so that Tim might feel more comfortable.  The day we moved back into our home it was a huge snow storm.  Five men from Faith Bible Church showed up at our door to help.  We had never met any of them in our life!  A friend had told them we needed help and there they were!  It was amazing to see His love poured out to us in such a wonderful way.  I decided to go check out the church these men came from.  We really loved it.  It was small, and yet family oriented.  The teaching was wonderful and very bible based.  We thought we might be home.

Over the past few months I have become much worse.  To see me you might say, "She doesn't look sick?"  But I can assure you I am.  When I wake up in the morning and step out of bed my feet feel broken.  They are literally curled up into a ball and after slowly walking on them they begin to relax.  My legs are cramped and I am completely bent over.  Slowly I can lift my back up and start to walk normal.  My neck and head are completely kinked and my arms are normally numb.  I am not saying all this for any other reason than mornings are terrifying.  I am so worried that one morning I will not be able to move.  I kept praying about this and I kept hearing the same thing, "You need your family."  I am so thankful for my mom and dad who jump in when Tim can't.  I knew that they would take the kids to church if I could not.  After missing several weeks of church, because I could just not do it on my own, I went to church with my mom and dad.  It has been a really good experience.  The kids love being with PopPop and Grandma, and it is great for me to have some extra hands.  We have decided that we need family and church to be one now.  This way the kids are at least hearing God's word even when I can't be there.  So St George Byzantine Church has become our new home.

I feel I have a weird view on religion.  From my many travels of church families I have seen one common thread...many people who desperately love their Lord.  They sing different songs, say different prayers, and may even read different interpretations of the Bible...but they all share Christ's love.  I feel I have found a home in all these churches.  I feel blessed by the many relationships and perspectives I have seen.  I am excited to see where God will lead us as a family, and what I will learn in the future.  For now I am thankful He keeps nudging me in the right direction for our family at that time.  I pray that this will not divide me from any of you but reinforce the great love we share!

Another Road Traveled

Many of you know that I have been searching for answers.  Over the past 2 years my health has started to go down hill.  But over the past year it has completely spiraled.  I am at a point where I struggle to get out of bed, and am relying on pain killers to get through things.  So on Thursday I went to Cincinnati to see an Orthopedic Surgeon, Dr Durrani, and then on Friday a Geneticist, Dr Tinkle.  I have had numerous tests done before I went.  I am going to outline hear as much as I can about these visits.  It is a ton of information and my head is still swimming.  For those who know about EDS this is not new news, but for people who have never even heard of EDS, I will do my best to explain.

When I went to see Durrani he felt I have Cranial Instability.  This is what Brooke has.  The difference...hers was caused by Chiari and surgery, and mine was caused by Ehlors Danlos Syndrome.  My head is wobbly and extends to far back, and to each side.  Over the years I have worn down the joints and bone, and now I am in constant pain because of this.  He feels I need a fusion.  The question is whether I need a C1 to C2 fusion, or a fusion that starts at my Cranium base and goes down to my C2.  He needs more scans.  I go back in 3 weeks to have another flexion and extension MRI and a 3-D CT scan.  In the meantime he has ordered a cervical collar that I need to wear to promote some stability in my neck.  We are hoping to do the surgery as soon as possible.  Hoping for August or September.

After we talked about my neck, he moved onto my lower lumbar spine.  I have to apologize because he gave me a technical name for my lower back problem but I can't remember it.  My head was spinning by this point!  But basically the vertebra's in my L spine are disintegrating.  This he felt was due to EDS as well.  But he could not make the EDS diagnosis, Dr Tinkle had to.  He wants me to receive injections in my L4-L5 spine.  This will not fix the problem but hopefully will keep them from disintegrating more.  Plus I have to wear a back brace.  He told me that my other joints are probably doing similar things.  As I listened to him reading my symptoms and course of action into his recorder, I was overwhelmed.  After he left the room I said to the nurse, "It sounds like I am falling apart!"  She said, "Well you kinda are." :(

I was completely exhausted when I left.  I was so thankful to crash with the kiddos and my friend Monica, and her sweet Danica at our hotel.  I knew I would have to grasp even more info the next day.  We headed out early Friday to see Dr. Tinkle.  Brooke and I were both supposed to see him.  I also had Aidan with me.   He examined Brooke first.  Thankfully she does not have Ehlors Danlos Syndrome.  Poor girl has enough to deal with!  He then checked me.  They take a very in depth family history and ask many questions about my early years.  He then performs a test called the Beighton Score.  You have to meet certain criteria for them to give you an EDS diagnosis.  The main symptom is hyper mobility in joints which I have.  This may not seem like a very big deal, but over time it is.  There are many many other symptoms as well.  Basically a person who has EDS is lacking collagen in the their joints.  Their joints become loosey goosey.  Think of a rubber band that is overly stretched out.  So my joint should be tight, but they are not.  And over time my muscles have tightened around my joints to overcompensate.  This is why I have a bulge on my neck.  My muscles have tightened up to protect my neck from just letting my head fall over.  Dr Tinkle feels the worst of my symptoms is my neck and agrees with the direction Durrani is going.  He also feels my lower spine needs help.  After these are worked on I need to have my jaw looked at because I have bad TMJ.  He is worried if I wait to long my jaw will just lock up.  He wants me to not eat real hard foods or take big bites.  He also told me he could splint my joints and have me in PT once I do a few more things with neck and back.  He added a few new meds to my list, and is watching me for a syndrome called POTS.  He is not diagnosing me with it yet, but may in the future.

Dr Tinkle wanted Aidan to be seen.  He had him squeezed in to see Dr Neilson.  He performed the same tests on Aidan and confirmed that Aidan has EDS.  My heart sank!  He has to have PT and OT to work on some muscle and joint issues.  He also needs inserts for shoes as his feet are rolling in and turning his knees and hips in a weird position.  The good news...sometimes boys grow out of EDS.  So our hope remains.  Plus now we know so we can avoid contact sports and things that would stress his joints.  I want to help him to not be where I am at 35.

Honestly...I feel like my head is going to explode.  Not just from it hurting, but from all this info.  I really liked both of these docs!  Dr Tinkle finished my sentences for me.  It was like he knew me since I was a child.  He understood my symptoms, and validated the pain I have felt.  They both were also very honest.  There is no cure for EDS.  People with EDS tend to continue to deteriorate over the years.  With my back and neck where they are right now, the likelihood of a wheel chair in my future is high.  It could be soon it may be years.  Needless to say I will not get better, I will only learn to live daily and cope with the symptoms.  There are things to offer relief.  We started slowing down because of Brooke, but now our lifestyle will drastically change.  This is hard for me as I love to visit friends, have a clean, organized house, and be involved.  The one amazing thing is God has put two amazing women in my life who are on the same medical road as me, and live only a short distance away.  The fact that our lives crossed paths is totally a God thing!!!  He has made it possible for us to love and support one another.  I ask for prayers for our fam, but please also pray for my friend Kathy as she is having fusion surgery in August, and my friend Monica, who needs a miracle and a house to live in soon.  Through Him all is possible!

Father of the Year Award Goes to....

I am not at all where I wanted to be today.  I am in bed.  I can barely move.  My head, back and joints are making it painful to walk or even lay comfortably.  The plan was to go to church with my parents, and then go to their house for dinner.  I wanted to spend time with my dad and my hubby to remind them how special they are to me.  Instead, I do not even feel like cooking.  My hubby and children have eaten leftovers all day.     And yet my hubby just tells me to lay down and rest.  My dad told me to not worry and he would see me soon.  Both of them proving once again...I am a lucky girl!!!

Last week I was on the phone with my aunt, my dad's sis.  She was telling me how she wanted to give us a gift to help pay on our mortgage.  (We are still fighting to keep our home.)  I was in awe and kind of at a loss for words.  When people give so generously I want them to know how grateful I am, and yet the words always fail me.  I tried to thank her but it did not seem adequate.  She said, "Growing up Pop always told us if we had extra, you share with family.  That is what we are doing.  You are family!"  My dad has told me the same thing many times when he has helped us.  They learned from my PopPop the importance of taking care of family.  I was privileged to know my PopPop.  He was a truly awesome man.  I loved listening to him sing Irish songs like O Danny Boy, but even more I loved to hear him sing Ava Maria.  Even though i did not live close to him and grandma, I learned how he but his faith first, and did a beautiful job of loving his family always.

So many amazing men have poured love into my life.  But the one who has been by side from the beginning is my daddy.  I can't even begin to express how much I love my dad.  How much I respect him, and how proud I am to be his daughter.  My whole life I have wanted to please him and make him proud.  He has been a shining example of faith, love, and family.  And yet most days, I do not do a very good job of telling him how much I love him.  It is hard for me to imagine a world without my dad, and I am so glad I do not need to.

One of the best memories I have of my dad is his crazy stories.  My dad always had a yarn to spin.  As a young girl I was horrified that he normally chose dinner time when my friends were over to start a story.  He would start out "Back when I was a young lad we were headed out west with the wagon trains...."  I would slowly try to slip under table or yell out, "Dad!"  None of the above me true of course.  He grew up in Philadelphia and then south Jersey.  He spent summers on the farm with his grandparents in Oklahoma.  His Grandpa had a gift for story telling too.  Someday I want to write the stories down that I remember.  They are wonderful and make me smile just to think of them.  My dad taught me to be a story teller.  My kids ask all the time..."Mom tell us the story about..."  I love that they are learning my childhood through me, just like I learned about my dad through him.

Another wonderful thing I remember is my dad singing Toora Loora to me.  Again this was a family tradition passed down.  My dad's grandparents come over to the US from Ireland.  This is a family heritage I am very proud of.  This song was sung from a mother to son, father to son, father to daughter, and now daughter to her children.  When I hear the words to this song I am moved to a simpler time as a little girl.

Toora Loora- An Irish Lullaby

I love that my dad has always been creative and intelligent.  I always would ask crazy off the wall questions.  I would test by dad's patience to the core.  I always argued with him on politics, religion, and may other things.  I yearned to be an individual, and make my mark on the world.  As time went on my dad patiently taught me how to do this without ripping walls down.

I want to close with 2 stories that make me smile.  When my dad was a young boy he had a paper route.  Every morning he would get up to deliver papers.  One the way he would stop at his grandparents house that lived close to him.  His grandma would feed him a nice breakfast.  He would then stop off at either a friend's house or an aunt's (can't remember which one) and have his second breakfast.  After the route was complete he would head home to find his mom cooking breakfast, where he would eat his third breakfast.  He was beginning to become a little pudgy.  His mom became suspicious and started to investigate only to discover her son was indeed eating very well!

My dad brought home a dog named snoopy.  His father was not a fan of dogs at all.  He told my dad he could keep the dog, but was not happy about it.  One day my PopPop was out in the yard and saw the neighbor's dog pooping in his yard.  He marched over to tell the neighbor this was unacceptable.  As he began to give the neighbor an ear full in his neighbor's kitchen, snoopy walks in a pees on the floor.  Needless to say my PopPop turned around and headed out of the kitchen.  :)

I am so thankful for my dad and all he taught me!  I love you Dad!!!  Happy Father's Day!

One Foot in Front of the Other

I have really been reminiscing lately, trying to remember a time when my body worked right.  I mean it is has always had quirks, but for the most part I felt good.  Since I have had my mri, I keep opening the pictures and staring at them.  I do not even see what the docs see.  I do not see the cysts on my spine.  But what I do see is this enormous bulge on my back, and slumped shoulders.  For me this is a gruesome and terrifying discovery.  Silly?  Well probably, but I am questioning when the dancer with beautiful posture left my body.  When the aches and pains became so unbearable I have to take pain killers, and lay around most of the day.

I started ballet and tap at 2.  I loved gymnastics, and could not wait to start pointe.  I walked with books on my head to straighten my posture.  I sat watching tv with shoulders back and head up.  I was the girl in dance class who could perfectly lift her leg over her head without bending it.  I could do spreads and splits.  I could hold my front foot in a split and completely roll over.  I impressed people by doing splits up walls.  Sure I heard and felt my hips pop in and out, but I did not figure it mattered.  I heard my ankles creak and crack when I was up on pointe, and heard my teacher rave about my beautiful arched foot.  Little did I know my body was slowly attacking itself.  I just kept fighting back against it.

As I have gotten older I have had signs that things are a little off.  Like when I hold a purse, my arm goes completely numb.  Or if I get on the floor, my knee will pop and I will have to move it around to make it quit hurting.  Sometimes my wrist does this weird clicking noise, and I have to smile even when I want to scream "ouch!"  And lately whenever I look up or down for an extended period, I feel a rushing in my head and the feeling of passing out.  But I just figured...."This is who I am."  And went on.  But with Brooke's diagnosis I hear many stories.  I have learned this is not normal.  I do not need to keep enduring.  So I have looked for help.  I feel like I am at the beginning of a very long road, and quite frankly do not know if I feel like finishing.  I am tired, and just want answers.  I stare at the MRI hoping that the answers will just pop out.  Sadly all that pops out is the hump on my back!  I feel like Colin's father in the Secret Garden.  I feel like hiding in my room, and pulling the curtains.

I know I am not perfect and never claim to be.  I mean we all find flaws in ourselves.  I have always disliked my double chin, and white skin that never tans.  But all in all I am happy with who I am.  I am thankful for the life I have been given.  It is funny how a picture or a hurtful word from someone can rob us of feeling serene in our lives.  I started this blog for Brooke.  I wanted to share her story and raise awareness for Chiari.  What I have found while doing this....it has helped me grow.  I feel like this is a place for me to be honest, to confess my failings, to share experiences, to educate, to learn myself, and to connect.  If you would have told me I would some day have an online journal, I would have laughed.  I wrote a journal faithfully as a young girl.  Many of my journals were discarded by me.  I did not want anyone reading them later and finding out I had flaws.  Here I am now openly telling you flaw after flaw.  One of the things that bugs me the worst is most of these things are not things I can fix.  I can try to make the situation better, but the past will never be my future again.

I am thankful to know their are people who daily lift us up in prayer.  I am thankful that my kids love puzzles,  books, and watching movies with mama.  I am thankful that my husband loves me for me, and takes care of me when I hurt.  I am thankful that I can throw open my curtains to let the sun in.  In the book The Secret Garden, Mary, Colin, and his father realized to live in the moment is key.  To relish in the sheer beauty of life, and not focus on the little burdens that change us on the outside.  I am trying to remember this daily, and put one foot in front of the other.

Bits of a Puzzle

Last week was a very busy week.  I wanted to post sooner, but all my energy has been channeled into traveling from one destination to the next.  Last Wednesday I made a trip up Lorain for an MRI on my cervical spine.  They have a special machine where you sit upright for the MRI.  This shows if there are instability issues, and also shows a different view of spine than just laying down.  My dear friend Monica accompanied me on this trip.  She warned me that I would feel awful afterwards, and wanted to be there for me.  We joked on the way up that 2 girlfriends should be driving to cleveland for a spa day or a day at the art museum not a trip for MRI's.  But this is our life, and I feel so blessed to have her.  I know it was truly painful for her to go, and yet she comforted me in my own misery.  The MRI was Brutal!!!!  I almost passed out and I was so sick afterwards.  The drive home was torture.  We stopped to pick up a drink from Panera to try and make our day see normal.  After picking all the kids up, I crashed in bed.

First thing Thursday morning we left for New York.  My mom, myself, and Chan accompanied Brooke to see Dr B.  Again another long, tiring journey.  Of course we hit horrible traffic in NYC.  Of course I was once again amazed at the way other humans drive and treat each other.  But thankfully we made it.  We walked into the Ronald McDonald House which now feels like a second home.  Thankfully dinner was stored away in the fridge for us, and we sat down to eat.  While eating we met another Chiari family.  The young girl, Mace, had had fusion surgery a short time ago.  She was in a collar and her Brooke talked for awhile.  She passed her email on to me so we could keep in touch.  Her mom, dad, and I talked for awhile about life, future, and docs. It is always a blessing to find other families who are walking your road.  We headed to bed to prepare for the next big day.

Friday morning we headed to see Dr B.  Brooke was so excited and had painted a picture for him, a self portrait!  Thankfully we received some good news!  We found out that Brooke's odontoid bone is still retraflexed (which is not good) but her pannus muscle has shrunk in size by .010 of mms.  Which may seem small but is actually a step in a good direction.  He said this rarely ever happens. (miracle, perhaps!)  So he felt confident in saying that she does not need a fusion right now.  He said there is a chance she may never need it!!!  Of course only time will tell.  But he felt like the collar was doing what we wanted it too.  She needs to continue to wear it.  But she also needs to strengthen her core by doing PT in a pool.  He felt safe in saying we could do yearly MRI's and check ups as long as symptoms stay the same!  Hooray!!!

I had sent him some info on Aidan.  He could not give me specifics because he has not seen him and it needs to be reviewed by the board before we go....but he was able to show me a few things on his MRI.  He showed me how the cerebellum does dip down below the skull floor.  He showed me on a side view and back view.  It is not as large of a herniation as Brooke's and some docs might say it is not Chiari.  But docs who work on patients with Chiari call it a "Chiari Variant" because there is herniation.  He said to say that a person with a herniation does not have any kind of Chiari is "poopoo"(my word inserted for his).  This very much can cause headaches and all the symptoms Aidan has been having.  Right now it will probably be a watch and see.  We will treat him with pain meds, but he does not need to take the migraine meds, as they do not really help.  As he grows it may become worse and it may get better.  He wants to treat it with caution so he said no roller coaster, no trampolines, and no contact sports.  He said for now basketball is ok.  Aidan took this news very well.  He said "Mom I might even want the surgery cause my head hurts so much."  Makes you sad to hear your kid say this!  But I know he just wants to feel better.

After we left Dr B's office we headed to New Jersey.  My cousin Kim was getting married and Brooke was the flower girl.  After a 2 1/2 hour drive we arrived at the hotel.  Unfortunately the room was not clean.  We had to ask for another room and move all our luggage.  After a full inspection of this room, we started getting dressed for rehearsal.  My dad, Aidan, and brother, and sisters arrived right before we left.  Brooke and I headed to rehearsal, were she did great.  We then went to the dinner.  Much coaxing and yes some bribing to get her in the room and willing to stay for awhile.  We got through the salad part, but then she started melting down because of being exhausted and the noise.  We did not leave before sweet Kim gave Brooke the American Girl Doll Kit!  Brooke was over the moon!  She just loved loved that gift!  Thank you Kim for your extreme generosity!!!!  We took our meal to go and headed back to hotel.

Saturday we woke up to a quick breakfast, nail time, and making our selves gorgeous!  ;)  We headed to my aunts house to take pics.  All went well and we were off to the church!  Brooke did an awesome job, and my cousin was stunning!  I am so thankful for all the help we had getting there!  It is a day I will treasure!   We went back to hotel to rest before reception.  Unfortunately Brooke was completely worn out.  We drove to downtown Philadelphia for the reception.  We walked to the Academy of Natural Sciences were the reception was.  What a beautiful venue for a reception!  Unfortunately Brooke is terrified of dinosaur bones and also of large animals that are stuffed.  As soon as you walk in the door there were 2 giant bears.  Then over to the side Huge Dinosaur bones, and tables were set all around the bones.  Again Beautiful!!!  But to Brooke terrifying!  She immediately started holding my hand really tight.  Then the tears came.  Then the pleading to leave, and her looking over her shoulder like something was after her.  Sadly we had to leave.  She fell right asleep at the hotel and I watched the "Murder She Wrote" Marathon! :)

Aidan, Brooke, my brother Jimmy, and my sis Cassandra

Sunday was a long drive but we made it home!!!!  Yesterday we rested, and today more resting!  I have found out a few things from my blood work and MRI.  What I know now is I need to see 2 specialist in Cincinnati.  One is Dr Tinkle who specializes in Ehlors Danlos Syndrome.  This is a connective tissue disorder.  And also Dr Duranni who is an orthopedic surgeon who also knows about EDS.  I go this week for another MRI of my Thoracic and Lumbar Spine.  I do know that I may have rheumatoid arthritis.  But we are pretty sure I have EDS.  I will see Dr Tinkle and Dr Duranni at the end of June.  I do have a significant curve in my spine.  And I have Dural Ectasia.  Which means I have cysts on my spine.  Again I am just finding things out and do not have the puzzle pieces all locked together.  I am so thankful I have the right people and docs in my life and in the lives of my kids!  We have been blessed in so many ways and I am thankful that we can figure out what is going on.  Sorry for such a long post!

News that Breaks a Mama's Heart

My mom just came and picked up the kiddos for a few hours.  I am sitting here in the quiet and thinking how heavy my heart is.  I try very hard not to wallow in self pity and see light at the end of even the darkest tunnel.  Some days this can be hard.  As a child, I dreamed of my life as a mother.  What my home would look like, what kind of a person my husband would be, and my children- their names, their likes, dislikes.  For the most part nothing we dream as child comes true.  They are fantasy in a child's mind.  I mean I wanted eighteen children- nine boys and nine girls.  And I had them all named.  I thought I would live on the coast of Maine and wear long flowing dresses, and my husband would be a lobster fisherman.  We would read the classics by the fire and sip cider.  This probably would make an amazing book, but is very far from were my life is.  And honestly that is ok.  Most days.

Sometimes though I wish I could step into the book and out of the reality.  On those days I write.  For me it is an outlet to understanding where I am.  It is in fact a way for me to see the truth written out in front of me so that I may accept and sometimes find hope.  I need this outlet today.  The past month has been very busy with many doc appointments and tests.  Not so much for Brooke, but for myself and Aidan.  I have struggled all my life with various health issues.  Nothing serious, just annoying.  But last summer, things started getting worse.  I am not sure if it was just the stress of life, or me getting older, regardless I hurt more.  I have a headache ever day, some worse than others.  My joints have become very painful, and I have nausea that comes and goes.  I have several moments where I have almost fainted, thankfully my mom was near me in both situations.  This list could go on, but I would sound crazy.  Thankfully I have found a wonderful doc, thanks to my friend Monica.  She has ordered many tests.  I am still waiting to hear on many,
and have learned a few things already.  Just wanting to fit all the puzzle pieces together.

We took Aidan back to the neurologist because his headaches are just terrible.  The poor boy does not really function as an 8 year old boy should.  I mean he plays and has fun, but spends a good part of his day in quiet activities.  He complains of his head hurting often.  He has had quite a hard time over the past few months with anger and just being upset.  I have asked him about this and his response is always, "my head just hurts!"  So we went to see the neuro.  She really felt they were migraines and cluster headaches.  But she ordered an MRI anyways, just to be sure.  Aidan has had a CT scan in the past, and they told us no Chiari.  But I have learned it is often hard to see Chiari on a CT scan.  We went Monday morning for the MRI.  I brought the disc home with me.  I kept looking at it, and just felt compelled to send it to our Neurosurgeon.  I emailed him yesterday morning, and he emailed me right back and said from the one pic I sent he sees a CM1.  My heart sank.  No this is not an official diagnosis, and we will need to have him seen.  The neurosurgeon requested the whole disc.  The nurse called yesterday and asked me to send it overnight.  They are going to review on Monday and try to get him in next week when we go for Brooke's appointment.

I spent all of yesterday walking around in a fog.  No we do not have definite answers.  Yes it could be much worse.  No we have no idea what line of treatment they will take.  Yes I am blessed to have a wonderful sweet boy.  But for a few moments, hours I felt like I could not do any of this again.  I could not watch another child go through this.  I could not commit another child to a possible life time of pain.  But just as I whisper these words in prayer, I feel God comforting me.  I am reminded to see the glory in His plan.  My children have a purpose.  Even if it is to glorify Him through trials.  I am sure I have wrote this before, a friend told me this years ago, "Our children are not ours.  They belong to God."  I remind myself this often.  I can't stop the bad from happening. I can't make the good last.  But I can give them Hope in the future.  I can show them rejoicing in suffering.

We do not really know what will happen over the next few days, or weeks.  Even though my heart feels crushed, I know there is a purpose.  We will continue to pray for courage to accept our paths wherever they lead.  As my brave, dear friend Monica always says, "Our Hope Remains!"  I am blessed and comforted by that.

This Job Called Motherhood

First and foremost...Happy Mother's Day to all the mama's out there!  What a beautiful world you make it!  I wanted to write this post because I have felt for a while that motherhood is under attack.  Yes...mothers are attacking other mothers.  I cringe at the thought that a woman can do this to another woman.  I sigh thinking that even as adults we can't leave behind the childish games of school years behind, and raise each other up.  I am sick over the sadness moms feel when the media and other people (including woman) tell them they do not measure up.  Really?  Have we walked a mile in their shoes?  Do we understand the mountains they hurdle each day?  And even if we do, who are we to say our way is better...our ideas are the correct ones...the studies we follow are fact, when they are just trying to be a good mama.
When I was a new mom I read book after book telling me all I needed to know.  Then I lived my life.  I Can honestly say, I use very little I found in a book or magazine.  Some days I make it through on only prayer.  Me pleading with God to let me be the mother He made me to be.  To confess I have fallen into one trap and another of trying to be the perfect mom.  I have put on the fake front around the girls and said "oh no my kids never do that."  To cry out for grace because some days I am not the mom even I know I should be.  And then one of the kiddos comes up to me, strokes my arm and says "I love you, mama."  And I am convinced this is the perfect job for me.
The sad thing is we do this to ourselves so often.  We need to know what we experience is normal, other moms go through it too.  Sadly though I have seen that we are not honest with each other.  We rate each other on invisible, impossible scales.  And then we begin to rate ourselves on these same scales.  We are not perfect, and will never be able to gain perfection.  In fact, we should not even want our children to grow with the false idea that this is possible.  We should want our children and those around us to see the mistakes, the confession, and the risk of moving forward and trying to do better.
I have said this before, but I really feel blessed by the women who are in my life.  And I am sure when I rattle off this list, you will have friends who jump to your own mind.  I have friends who are a mom to one child and friends who are a mom to multiple children.  Friends who are sports families, and friends who love to travel.  Friends who nurse and friends who do not.  Friends who send kids to school, friends who home school, and friends who un-school.  I have friends who eat organic and raw, and friends who love to eat out.  I have friends who live on farms and those who live in the city.  I have friends who are single moms, friends who are adoptive parents, and friends who are mamas in their hearts but have not found their baby yet.  Friends who work full time, those who work from home, and those who are stay at home moms.  I friends who are missionaries in another country, and those who are missionaries right in their own home because illness makes it to hard for them to leave.
  Every woman I thought of as I wrote this has a heart for God, a deep love for their children, and a respect for themselves.  These are the women I aspire to be like.  To grow in maturity towards.  These are the role models I want set before my daughter, to inspire her as she grows.  Many of these women have seen me sick, needing a shower, my house in shambles, and yet they still love me.  Friends like these do not tear you down for your ideas, raise an eyebrow in your direction, or speak poorly of you to others.  Women like this lift others up by a card, kind word, small gift, meal, or a simple prayer.  I encourage all mother's to help stop this attack on our sisters.  No women should feel alone, wondering if she is meeting some standard set by some random person.  Every woman should feel loved knowing they were created in the image of their creator, and their sisters want to support them.  We should hold our tongues when we know the words we say will hurt or sadden.  We are not going to walk the same paths as the women we meet.  Why should we?  We are created different, unique.  This is a beautiful thing that should be embraced!  And just as we are all different so are our children.  Their needs vary and God knew this when He gave you your child.  Your child needs you!  Needs your ideas, your standards, your love!  Happy Mother's Day dear sisters, where ever you may be!  I pray that each day you embrace who God made you to be, fully unique and fully beautiful!