Blog Hopping

Today our fam is featured on the Christian Unschooling site!  I am super excited as this site has given me encouragement and insight into growing my kiddos.  Hope you can take time to check it out!

Also today is Rare Disease Day.  Brooke and I are both wearing our purple today for Chiari Awareness.   Please take a minute to check out links below.  Although Chiari is not rare, many have never heard of it.  We keep praying for more research and better treament methods.  Also Ehlers Danlos and POTS are considered rare.  Just one person educating themselves can spread the word to others! 

Chiari I Malformation Awareness

Ehlers Danlos Awareness

Postural Orthostatic Tachycardia Syndrome (POTS) Awareness

Here is your pass to Crazyville!

I had an appointment with my pc today.  I have to say I do love my doc!  But I still have this fear when going to the doc they will give me an all access pass to the loony bin.  I hear myself talking, and I want to yell at myself "stop stop stop!!!"  Thankfully when I look up at my current pc she does not have the eyes bulged/glazed look on her face.  She is actually listening and trying to figure it out.  She is researching on her laptop right there in her office.  She never dismisses me or makes me feel crazy. 

Still though I have very few answers.  I am going to try some new meds.  My "walking on a cloud" moments are gone.  I am back to the same symptoms I had before surgery plus some.  Yes certain things are better, but many are worse.  The steroids I was on last week did give me some relief with my eye pain.  This leads her to believe it may be inter cranial pressure.  But there is really no good way to test for this.  I am waiting to hear back from Brooke's neurosurgeon, and my pc is going to talk with another nsg.  I am going to try and sleep in my collar again.  Hoping this holds my head completely still so I can sleep.  As it is I can't sleep for more than an hour at a time.  With my fusion it is impossible to sleep on my tummy(and I am a tummy sleeper).  But laying on my back proves to be difficult since the slightest motion one way or the other is painful.  And laying on my side is impossible since my shoulder pops out of socket from laying on it.  Crazy right?  I mean sleeping should not involve this much effort. 

I know weather systems definitely cause more problems.  Hey don't laugh, I feel the storm in my bones, well ok my joints and head.  And I normally know when I step out of bed what kind of day I can expect. Crazy right?  So I continue to wait.  Hoping I hear something this week from the neurosurgeon.  If he finds nothing then it is probably related to my EDS.  I will then need to make appointments. 

I know I try to make this sound funny, but it is very real.  Most days it is hard to even explain where I am at.  I hate sounding like I am complaining.  I am not.  This is where I am at in my life and I accept it.  I express myself here to help others who may feel "crazy" to feel a little more "sane".  For years I kept quiet because I was so tired of hearing docs say, "I just don't know."  Now I am blessed to have docs who may not know but find out.  Or docs who specialize in diseases that others do not know much about.  I pray as time goes on less people feel crazy and find the answers they need. 

Not a Sports Family

I have said this many times before...we are not a sports family.  This is something I come by very naturally.  Growing up my family was also not a sports family.  My dad rarely watched sports on TV.  My mom will tell you flat out she really dislikes sports, especially football.  I played basketball in 4th and 5th grade and that was it.  I was a dance/gymnastics girl.  Now I would argue that these are sports, but a ballet mom on the sidelines is slightly different than a basketball mom.  Not that there is not tons of pressure, but in a more passive/aggressive way.  My brother also was not a "sports" guy.  He might argue this fact now, but as a kid we rarely spent time at his sporting events.  Neither of my sisters played sports.  And my youngest brother was the most sports minded with his love for basketball. 

So when scouting out a hubby it was quite important to find a man who would not spend Sunday watching football.  Ah just kidding.  But it happened...I married a man who may be less into sports than even me.  I at least get excited about the Olympics!  We felt it very important to continue this family tradition with our children.  We would just avoid sports at all cost.  The very thought of sitting in the hot sun watching a sports game in the hot sun with screaming people around me in the hot sun.  Yikes!  Oh wait and the rain!  And mud!  Yeah avoid at all cost! 

Sweet cute little Aidan had different ideas.  Right away he wanted to play basketball.  Now I could handle this because of all sports it is my favorite.  Plus it is generally played indoors.  Relief.  But I will be really honest, if Aidan told me he wanted to spin wool I would be on board!  It is funny the things you will endure to watch your child smile and flourish.  I am still not the typical sports mom.  For example, we had pictures done a few weeks ago.  Now this is our 3rd year in basketball.  Aidan wanted to get a small stand up version of himself.  I simply said (in front of photographer), "Yeah I am not going to buy that.  I would rather waste my money on something you need like food or clothes."  Aidan's response, "No problem.  Just thought I would ask." See he gets his mama!  I also am not the mom who jumps off her seat and screams, "Get the Ball!  Get on your Man! Defense! Defense!"  Maybe it was all the years I spent in ballet, but all I can ever manage is clapping and big smiles! 

So as a non-sports mom I sometimes feel bad, perched on my seat next to the big button wearing mama to my right and left.  I am always concerned I stick out with my soft clapping and my quiet "good jobs!"  Should I just let loose and jump off that seat?  Well today I came very close to crazy for my son's team!  I literally drug myself out of bed to take him.  Head pounding and arms dragging on ground, I told myself I needed to be there for him.  I am so thankful I went!  It was the best game he ever played!  The team they played was undefeated.  It was a tough team, heck it was a tough room of parents!  I was literally scared by some of those moms!  Every time our team made a basket, the other team made a basket.  The boys were flying all over the place and working hard.  It was neck in neck the whole game.  I felt myself edging closer and closer to the end of my seat.  As the the clock ticked away they had 24/24.  Only 30 seconds left!  The parents, coaches, and other players were going crazy!  They did it!  They made a basket!  In that moment I felt like a sports mom!  I was so proud of Aidan and how hard he played!  I was so proud of his passion for a game his parents have not taught him much about.  It was one of those moments when you realize you are not your child.  They are a free-thinking independent soul making their way in the world.  As a parent all I can do is cheer them on from the side lines!  So thankful I have the chance to do this every day. 

My Baby you will be...

Chandler turns 3 today!  How is that even possible?  With all my kids time flies, but with him I feel like I just blinked!  I have held on to so many things with him longer.  I tried to keep him my baby forever.  But it is clear as he turns 3 the baby is gone.  As I write this post he is trying to drive both his sister and brother crazy!  He still has the sweetness that makes him my cuddle bug, but oh has the ornery streak set in!

Having Chan has changed us all!  He adds crazy to everything!  He adds smiles to sadness.  He adds charm to chaos.  His sweet chubby hands on my cheek warm my heart.  His weird funny facial expressions leave us all holding our bellies from laughter.  We never know what he will say or do, and that makes life way more exciting!

As he gets older, I hope to share his Welcome to the World story.  For now I am trying to hold on to him being little for at least one more year! 

Motherly Ideas

I am pretty sure most moms have a vision in their head of how they want to parent.  Things they would say or do in certain situations.  Maybe I am the only one who plays scenarios in my head, and how I would react.  I am pretty sure I am not.  I think as moms (and even dads) we want the very best for our kids.  We desire a safe haven for them, understanding for who they are, and deep concern for who they become.  This may even be something causing great heart ache if they stray from what we feel is proper or ok.  The need to even try and control parts of their lives so they are not exposed to bad influences or just plain old evil.  What I have learned is these are all beautiful wonderful ideas, but not always practical.  No matter where we live, how we raise our kids, or the ideals we set forth...the world seeps in.  I think in these moments we teach our children true character or maybe they teach us. 

Once again I am wrestling with the ugly beast of Ehlors Danlos Syndrome.  I am not sure why I am having so many symptoms, or even what the outcome will be.  I am learning with a chronic illness there is no way to predict when you will feel good.  You just have to take those moments and relish in them.  I am learning some days I can push myself but many more I just can't.  I am learning when I figure how to tolerate one symptom another rears its ugly head.  I find myself bargaining with myself and God.  "Please just let me do one more thing and then I promise to rest."  Even though I know what I am asking is normally silly or petty...like a clean bathroom or swept floor. 

One of the things I never wanted to compromise on is my kiddos and hubby!   They are my rocks, my laughter, and my joy.  I desperately want to be there for them in every way possible.  Slowly slowly I am learning for our family this is different than for many.  And I am sorry to say my family has understood this way before I have.  They are teaching me, leading me.  Still I try to rebel.  To say "Oh I can do that!"  Knowing full well I can't but refusing to say that to them!

Patiently my family continues to teach me...to give me new ideas of who we are and how we function.  On Friday I was so ill.  My mom came and picked up the kids so I could rest.  Aidan had basketball practice that night.  Our idea was I would rest in the afternoon, then pick up kids at my parent's church fish fry.  We would eat there, and then I could take Aidan to Basketball.  It seemed workable, tiring but workable.  I went to the fish fry and my dad helped me feed everyone.  Of course, Chan was wanting to run all over, and I chased after him to keep him from knocking someone over.  By the time we were loaded in the car I was reduced to tears.  I sat with tears warming my cheeks praying for strength.  Silently, "Please just get me through Aidan's basketball."  In the back seat I hear the sweetest voice say, "Mama just go home.  You need to rest."  My answer!  At first I was so angry at myself for listening to him!  Why did I not just take him?  What kind of a mother just gives up?  The truth...I could not take him and he knew this in his great 9 year old wisdom.  It broke my heart because just the week before I had to have him miss too.  He never complains, only comforts. 

Brooke is finding she has the same personality as me...keep pushing until you can't.  She wanted cheer.  I knew with the program she tried it would be the least amount of jumping.  And we even told the coaches she could not jump.  They were perfectly fine with this.  But sadly even this was too much.  She was in a puddle of tears one night, wanting to cheer but knowing she needed to stop.  As I held her, I told her she had so many wonderful talents!  Cheer was not something she had to do, dance was not something she had to do.  It was ok for her to stop, to admit her head hurt, and move forward.  She dried her tears and asked if she could keep her uniform.  Of course a cute cheer uniform always makes life a little sweeter!  One more reminder for me...my kids do not need me to be super mom.  Just as I only need them to be themselves this is what they need of me. 

I am learning, kicking and screaming I am learning.  We can't always control where our life ends up but we sure can control the attitude we take with us.  This is what I can share with my kids.  This is what they share with me.  Even just reading, talking, cuddling, and sharing is shaping them into the future.  I am seeing God has us right where He wants us.  Our job is to embrace where we are and hold on for what comes next. 

A little clarification

I am back to the drawing board...with a new set of symptoms and some of my long lost old ones.  Sadly these past few weeks I have been trying to figure out if my symptoms warrant a call to the doc.  After asking a few people they all told me a definitive yes.  So with tail between legs I must admit I am not "healed".  Not that I ever truly believed I was 100%, but I sure tried to act like it.  I mean really why is it so hard for a person to admit they need help?  What drives us to keep pushing ourselves even when we know the crash and burn is coming just around the corner?  I so wish I could figure this one out. 

I am not sure how many glasses an average person breaks in a lifetime, but I am pretty sure I have broken that record.  My hands have gone numb.  Sometimes I have a vague sense of them.  I can feel them tingling sometimes.  But for the most part I just rub and rub them hoping to get some feeling.  Needless to say I drop things all the time.  My poor hands are red because I can not feel the hot water I am using to wash dishes, and sewing has become quite the task.  Even typing is hard because I am always hitting the wrong keys.  Honestly I could care less about grammar and spelling at this point.  I have also acquired this weird buzzing feeling in my arm.  Feels like my bones are vibrating.  Super uncomfortable.  Then the other night my leg lost feeling and I tripped and fell.  I have been battling massive headaches and now to cough, sneeze or yawn can make me have an instant headache.  Plus I am having this weird pain in my eyes. 

I gave in called my ortho.  He is trying a med to help with inflammation.  But I also contacted Brooke's neurosurgeon.  He wants to see all my scans.  So I am sending them all to him tomorrow.  I really hope there are some answers at the end of all this.  I would love to have a little clarification on what to do next.  Also nervous a trip to NY may be in my future.

For all of you who love our fam, please be patient with us right now.  We may cancel many things.  It is not that we do not want to spend time with you, but honestly I am back to only doing the basics.  We are hopeful as always!  We know this path is not for the weary of heart, and since we are weary we clutch to our God to pull us through.  As always prayers are amazing!!!

A different way to learn

I know this post will hit up some disagreement but ruffling feathers is not always a bad thing!  This is just a little tale of our journey with learning in our house.  Take it or leave it...it is what works for us.  And I wanted to share because others may be in the same place I was last year.  I wanted them to know these feelings are normal for some of us. Sometimes we live in fear or worry of what others will think.  So in the spirit of being open and honest, I thought I would just share.

When I was a little girl I was not a big fan of school.  I would like to say this had no weight on the rest of my life, but sadly it did.  I had a few years I did not mind.  For the most part I detested school.  It was not the learning, so much as the petty junk going on in so many classrooms.  I was painfully shy, and was so not athletic.  On a paper we found from second grade the 2 subjects I disliked the most were recess and gym.  When I started home schooling in High School, I really found myself!  It was like a wonderful door opened up and I no longer felt trapped.  I flourished, and went on to college where I did just fine.

As I approached having children, Hubby and I would discuss what we would do.  We really went back and forth.  Not in disagreement.  We just were not sure.  I truly believe every child is different.  Some excel in a classroom, where others grow better at home.  We decided to give school a try.  We loved the kindergarten class A was in.  The teacher was awesome.  I did have to get past the nausea I felt when entering the school.  I believe the smell of glue and cafeteria food will always make me ill, but then I was pregnant at the time.  As the year went on we all just decided as a family we wanted to give home schooling a try.  So we did.

Home School seemed a great fit for us.  And for awhile all was smooth and peaceful.  For the most part I did not use a set curriculum.  I used bits and pieces from different places.  Then last year, A was getting older and B was starting kindergarten.  So we thought it might be time for a full on curriculum.  Yikes!  The year started off ok, but soon school time turned into crying time, melt down time, yelling time, and mommy feeling like it was back to school time!  I seriously knew this was not working!  No one was learning.  It was torture for all involved.  I was so sad!  The kids were so sad!  We all wanted it to work...reality was it was not working.

Around this time we moved home.  I figured we would muddle through the rest of the year, and start school in the fall.  This made me nervous for B because I was not sure with her medical issues if school was a good fit.  Then I talked to a friend.  She explained to me their fam was trying unschooling.  The idea intrigued me.  I started reading more about it.  I was amazed!  It was exactly how I felt.  It reminded me of a Montessori type philosophy.  Which I have always been a fan of.  The idea is learning is very self directed.  I figured it was worth a try.  It is suggested that you take a break from all learning to clear minds and refocus.  I agreed.  We needed time to regroup, and figure out what this all meant for our family.

I can say with pure enthusiasm...a year later and we love it!  The kids are more relaxed, and actually ask to learn.  I love that it is not a 9-3 kind of day.  Learning takes place all day every day.  It never stops!  It happens in our car, in the waiting room at the doc, and in the coziness of the couch.  One question from A could possibly lead to a week long discussion and fact finding mission.  Now I will say we are probably not considered radical unschoolers.  Honestly all the labels drive me a bit batty.  I just want my kiddos to learn in a comfortable environment.  I want them to feel safe when asking questions and seeking out the answers.  And this is what is happening.  I am excited that the learning never turns off now.  They are seeking out ways to learn more and expand their minds.  It is a fun adventure, and we are totally loving it!

I know many may not understand this, and that is ok.  Many do not understand why I nursed until my kids quit themselves, or why we co-sleep.  Why we sometimes stay up until midnight to finish a good book or watch a movie.  Why schedules are not terribly important to us right now. I saw a quote on facebook today which made so much sense to me.  Another mom posted how every parent makes different choices- choices to nurse or bottle feed, choices to discipline one way or another, and on and on.  In the end, most parents are making these choices with their child's best interest in mind.  And that is what is important!  Not that we all agree, but we support one another in the decisions we make for our fams.  I am blessed to have the support and so our my kiddos!