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!