What Does This Mean?

Well we have had a few days of quiet and a little peace.  But it is over.  We have come to expect this and I think I am always on the edge of my seat...not in excitement, but in waiting.  I wrote a few weeks ago about Brooke's MRI.  We had it sent to Dr. B and waited to hear his response.  It came this weekend.  Over the past few days we have learned some things we already knew, and some new things.  At first, I needed clarification from him, and also had a few smart chiari mama friends of mine help me.  Here is what we know....

Brooke's MRI shows that she has a significant Basilar Impression. (Good description here) She has a Grabb's measurement of 8.8mm.  (description here) Not a lot of info on this.  So what does all this mean?  With Brooke's current symptoms and this info, the doc is suggesting a craniocervical fusion. We knew Brooke would need this, but we thought maybe high school.  This is a big surgery.  Brooke will have to follow strict restrictions in order to heal properly.  It could take a year or more in the healing process.  She may be home bound for months.  This is very hard to wrap our minds around.  This is very hard to explain to a 6 year old.  We do not have anything set yet.  In the near future Brooke needs several more tests, she also has to wear her collar more, and we are going to get a second opinion.  Unfortunately all the docs who deal with this kind of surgery and chiari are out of state.  (The one in Ohio is retiring.)  We are looking at a very good doc in Iowa for the second opinion.  We trust Dr B, but just feel that with a decision this big more eyes can be helpful.

This was not a road we were prepared for but trust that it is a road God chose for us.  Read this quote and felt it really applied: "Courage is not the absence of fear, but rather the judgement that something else is more important than fear." Ambrose Redmoon.  I hope you can pray for us as we try to figure out the best thing for Brooke.

Nope I'm Not Perfect!

You are probably saying to yourself....um yes that goes without saying!  But how many times do we actually stop and admit it to ourselves or even others?  I think for many of us women we do not want to even breathe the truth that we fall short sometimes.  (men if you are reading, just humor me...you might learn something about your significant other)  I see it so many times with women...we immediately put up that front- we have it all together.  I am sorry to say I do this very often.  I feel the need to reach some sort of perfectionism in my life.  Most days it is never reached, and I go to bed exhausted for even trying.  Why do we do this to ourselves?  Why is there a driving need to control our lives?

For me, the past few years have changed me in many ways.  I have learned to let many things go in order to survive.  It used to be that I could race against the clock to have a clean house, organized cupboards, meal plan posted on fridge, and clean, well behaved children.  At night, when children were tucked in bed, I would keep going at light speed to scrapbook, sew, prepare meals for week, and prepare home school activities.  During the day, we would run from one play group to the next, meeting friends anytime we could.  Then...Brooke got sick...my life stopped for awhile, and we reevaluated what was important.  Well first her appointments were, and of course our family was.  Everything else had to take a back seat.  I had to turn away from the unorganized clutter in my house, and pack away the mounds of pictures that needed to be scrap booked.  I had to turn down outings because we needed a break.  And with doing this I learned a very important lesson....we are not supposed to run ragged to only appear perfect.  We are supposed to enjoy our family time, and guard our other time.

God has sent me some pretty amazing women who have modeled this for me over the past few years.  Friends who I can just be me with.  I can literally see them with no make up, sweat pants, and children with dirty faces, and these ladies will embrace us.  I have learned this is what true friendship is, someone who will lean down to lift you out of the mess you find yourself in.    These are the people who will not find your flaws and point them out, or will not praise you when you need a good dose of reality.  And this is the kind of person I want to be.  Someone who has an open door policy any day of the week, even when the floor needs swept.

I am honored by the friendships of so many ladies who have held my hand, sat listening, or allowed me to be not perfect!  I am thankful that God created me the way he wanted, and not the way I think is best.  And I am grateful I have learned to embrace this!  Learning to let go has been a process for me, and continues to be.  But I am relieved to say....every day is not perfect and that is ok!  Sometimes dinner is totino pizza rolls because I am so tired.  Sometimes my laundry is so backed up we wear something over!  My house is never perfect with its 70's linoleum and shag carpet.  Sometimes home school is done in the car and in doctor office waiting rooms.  But we always try to have family time at least once per day.  We always say "I love you" every chance we get.  And we have slowed down to notice all the wonderful treasures God has graced us with!  So if you feel like you need to be perfect or prove yourself to anyone, stop and re think what is motivating you.  Remember we are not perfect, and every day we fall short.  And that is ok!  God has given us grace...without it we are chasing a tail that will never be caught.

Gifts of Friendship

I have to be honest, we have had so many blessings over the past few weeks it is hard to write about everyone!  People's generosity and love have been so amazing to our family!  I feel bad that I do not mention everything...sometimes I am just beyond words!  We have had people bring dinner, send us gifts, take us shopping, loan us things to cook on since we have been without a stove, pay bills for us, and pray for us!  It is amazing how the things we need are provided!

We have had some scary times lately.  In fact, many days I am more scared then I have ever been.  We had a mix up with unemployment back in the summer.  They over paid us, and with the move, new job, and lack of funds we did not realize.  Once they told us, we agreed to pay back.  We were making monthly payments.  Then when we needed it again, they just kept the unemployment for a few weeks until completely paid off.  About 2 weeks ago, they informed us we would not be getting unemployment for 7 more weeks because they were penalizing us!  What!?  I mean yes there was a mistake, but really???  So since the end of December we have had no income.  We have about 3 more weeks until it kicks in.  This is scary!  Thankfully most places have been willing to wait for payment, but they still want to be paid of course.  The good news....Tim has a job!  We have been waiting on details, and they came today!  He will start on the 20th working for a company contracted by GM.  It should be a stable position, and we are so very thankful!!!

This is a long confusing road!  Through it all one thing has remained, He is Faithful!  God pulls us up every time.  He sends someone along who can provide exactly what is needed.  Last Sunday I sat at my kitchen table talking with a girlfriend who  I do not see often, and yet it felt like I had just seen her.  It reminded me how wonderful community is.  How it makes you feel to be surrounded by people who not only love you, but will lift you up in any situation.  They will not judge, they will not tell you what you are doing is wrong or a better way of living, they just love you!  I have felt this so much lately, and it makes the scariest moments a little less scary.

The other day we had the chance to spread a little joy and forget about the scary for awhile!  When we were at the American Girl Doll store Brooke decided she wanted to get a doll for her dear friend Danica.  She decided that Danica needed a Brave Emily like her.  She was so excited to give this gift to her friend.  Monica, Danica's mom, wrote such a beautiful post about it.  Her words were so special, I wanted to share them here.  The day we visited was supposed to be a day of taking joy to them, but like always...they spread joy right back to us!  Their love and understanding make our friendship so very special.  Monica and I can sit and listen to one another, and completely understand.  Her friendship is more valuable than any gift that she would ever give, and yet we continue to try and lift one another up as best we can.  Yesterday, in the midst of the MRI appointment, I get a message from her.  The message...she has ordered a stove for our family!  This beautiful gift that she arranged and her parents made possible, arrived today!  Blessed beyond words!

I know so many of you prayed for Brooke and the MRI.  I have to say it went fairly smooth.  They were running late, so that was tough because Brooke had not eaten.  But once we were in the room and she could watch toonies, she was fine.  Then they came in to talk about the procedure.  She was not happy she needed to use a smoke mask(aka sleeping mask).  But agreed on strawberry smoke. :)  Once she was in the MRI room though she lost it.  Kicking and screaming I struggled to hold on to her.  I looked at the anesthesiologist and said "We need to hold her down and get this done."  Everyone was trying to reason with her, and the anesthesiologist said "Oh I hate to have to do it this way."  Ummm me too!  But it has to get done, so let's get it done!  After holding her down, she fell asleep pretty quickly.  The test went smooth, and when she woke up, she was her pleasant self again.  She was so excited to leave, she asked if she could help take out her IV.  She pulled all the tape off herself, and the IV!  Tough chica!  She told the nurse she did not want a band aid either.  I have to say I was exhausted!

I am not sure how the next month or so will play out.  There are many more uphills before we hopefully get to some down hills.  But I am going to trust and hang on, He is my rock.  Too many times I hear myself question why me?  Then I quickly respond to myself...why not you?  There is no reason why I should have a soft cushy life.  There is no reason why we should not struggle financially.  There is no reason why our health should be perfect.  But there is every reason why I should kneel down every moment, every chance I can and be grateful for what I do have!  There is every reason for me to rejoice in my family, my friendships!  God will provide a roof for my head...it may not be this one.  God will provide the food for my belly...it will sustain.  God will provide a resting place for my head when I just can't go anymore...He has so many times before.  So even though my human fault of being scared creeps in....He saves me from it staying long!

Wishes Can Happen Day Three

Birthday Surprise!

All good things must come to end...right?  Well we had an awesome weekend, but Monday morning Brooke woke up sore and tired.  She kept saying she missed her daddy and her home.  So it was a good day to go home.  We packed everything up and decided to head out for breakfast.  It made me laugh that every time I asked the Concierge service for a kid friendly place to eat they gave me a fancy restaurant.  :)  I mean that is great but sometimes you just want something simple.  We headed out towards the restaurant they suggested.  Said hello to our friendly door man, and Brooke gave him a big Thank You.  As we were one our way we discovered a most wonderful sight.....Chickfila!!!  We were overcome with Joy!  It was big, with nice wide aisles for the adapted stroller.  They were friendly, of course.  And the food, well Yummy!

Breakfast at Chickfila!

After a nice breakfast, we headed back to wait for our ride to the airport.  Unfortunately there was some confusion at check out and the van almost left without us!  But we caught her just in time.  I could tell Brooke was on a downward spiral.  She cried in the van because everything hurt, the seat, the belt, the noises.  I cringed just knowing what was ahead.  I rubbed her temples gently hoping to calm her.  We got to the airport and checked in- no problems.

Then we headed off to the security checkpoint.  Oh this is where it all unraveled!  Brooke was in the stroller and did not want to budge out.  The one lady decided to not be nice and reprimand me for how I was handling the situation.  Like this makes a little girl any more cooperative!  Then the nice lady approached.  She helped me get Brooke out and through the scanner.  As I walked through, the nice lady said Brooke's collar was setting off alarms.  It needed to be tested.  Sigh!  we walked over to the testing area, and she rubbed a paper on Brooke's hands and the collar.  It was positive(for what I am not sure).  Brooke slid back into her stroller clutching McKenna.  They called in a supervisor.  She also was very kind.  She tried to coax Brooke out of stroller to do a pat down.  She also informed me to not touch Brooke. This made Brooke even more nervous and she hid behind her doll.  No amount of coaxing would work, so they called in a lady who had a daughter Brooke's age.  She talked to Brooke for a long time, still no budging.  When I say my girl is stubborn, I mean every word!  They both told me in all there years they never encountered a child who would not cooperate. I told them she had been through so much and was just scared.  I then said we were going to just have to lift her out of the stroller, I would hold her and they could pat her down.  They gave me a funny look and the one said, "Well we do not like to force children."  I then calmly told them if we were going to board the plane it had to be done.  They then told me I would have to be patted down because I touched her.  Oh why not!  I mean really the day was not exciting enough!  So I held her up and they patted her down.  She wriggled and kicked in my arms, screaming the whole time.  Hot tears rolled down my face.  I think the most horrible part... as I looked up for a moment from holding her thrashing body, people (employees) stood and stared, mouths open.  In my mind I thought, if you only knew!  As we walked away my little man looked at me with tears in his eyes and asked why they had done that.  I then had to explain that there are horrible people in this world who would use a child to do very bad things to hurt others.  Those ladies were doing their job to keep us safe, even if it did not feel that way.  It is a necessary thing we have to do.

Thankfully Brooke could rest in the stroller after this.  Our flight was delayed by an hour, so we waited.  The plane ride home was a little bumpy but otherwise uneventful!  Thankfully!  Brooke of course kept my hands over her ears for the flight.  What a wonderful site to see the limo!  What a wonderful company, and men who drove us!  So thankful for their service.  I truly am grateful to Thomas Limousine Service!

We had a wonderful time!  Brooke loves her dolls and made memories she will never forget!  Although some days seem like an uphill battle, we are so blessed!  Thank you Wishes Can Happen for the wonderful bike, trip, AG shopping Spree, Aquarium, and so very much more!  Thank You Lisa, Madelyn, and Cyndi!  Without you all Brooke's Wishes would not have happened!  Thank you Miss Jessica for sending in Brooke's name!  And thank you to all who have donated to this wonderful organization!

Wishes Can Happen Day Two

This day started off awesome!  It was my ladybug's 6th birthday!!!  There are so many reasons why I rejoice on her birthday!!!  My bug is beyond measure one of the bravest girls I know!  I am proud of her, I am amazed by her, and of course I love her beyond words!  So to know that she would get this amazing birthday gift...I was super excited and so was she!

We headed from the hotel to American Girl Doll Store.  The door man was very helpful in telling us where to grab a bite to eat.  He spotted Brooke's Birthday ribbon, and was busy talking with her.  He found out why we were there, and kept saying things like..."oooh my buddy brooke!" and "oooh my little buddy!"  He had a thick accent and it was so sweet how he kept going on and on to her.  :)  He encouraged us to eat at a little cafe in the Water Tower Mall which is where the AG store is.  We headed off, and had a very yummy breakfast.  With bellies full, we started a full day of shopping!  Poor Aidan was not sure about this, but knew the Lego store awaited him if he was good.

Waiting in the Parlor

Brooke's "Very Nice to Meet You!" courtesy

When we got to the store they took us into a waiting Parlor.  Brooke's personal shopper, Kenya, joined us there.  Now I know these ladies get paid to make the day special, but Kenya was awesome!!!  Loved talking to her and getting to know her.  She was helpful, sweet, and fun!  We started by touring the historical dolls.  We learned a little about each one.  For us Addy is kinda the family fav.  We read her books as a fam, and I was excited to see her up close.  Another fav for us is Kit because of course we have seen her movie!  Brooke talks endlessly about Julie, because her Godmother is Julie.  Ah but to my surprise Brooke had other ideas on who she wanted to bring home.  I told her to pick her top 4 and then we would narrow it down.  Kenya went and got the top four picks and we lined them up in front of Brooke- Josefina, Emily (molly's friend), Addy, and Kaya.  She eliminated Kaya since she was worried about her hair getting tangled, and she learned she could buy her blue dancing dress separate.  Brooke had to eliminate one more doll as we decided to only choose 2.  Her first choice hands down was Josefina.  She was not sure then, but we showed her how Emily was called Brave Emily.  This did it!  She wanted a doll who was brave like her. (but I still think Addy is pretty darn brave!)  Kenya took charge of the new dolls, and we set off to look for outfits and accessories.

Josefina (Brooke thinks she is lovely, and I agree!)

Brave Emily

Brooke had a great time trying on clothes, picking out outfits, books, mini dolls, paper dolls, and movies!  I can not tell you how amazing and generous Wishes Can Happen truly is!!!!  It was awesome!  Then Brooke kept lingering around the Girl of the Year Doll- McKenna.  She liked McKenna because she looked like her (in fact their hair is exactly the same color!), because her last name is Brooks, and because she overcame a disability!  So Kenya said, "Would you like to get McKenna, because you can?"  Of course Brooke's eyes lit up, and she said Yes!!!  McKenna then needed her ears pierced and hair done, of course! So we headed off to the doll salon!  Can I just say...Super Cute!  I mean there is a whole little lane of stores within the store- Cafe, restaurant, Hair salon, doll hospital.  People actually have the job of putting the doll in the salon chair, with a cape, and then styling the hair.  You can even choose what style you want for the doll from a book!  Umm only in America. :)  

Sweet McKenna!

Hair Salon

After McKenna had been beautified we headed to the photo studio for the photo shoot.  Brooke and McKenna had their pic taken and Brooke now has an 8x10 memory on her wall!  So feeling tired and a bit hungry (yes it is only 12:30!) we headed to the restaurant.  Brooke was super tired, so we just pushed the adapted stroller under the table and she ate in comfort!  What a fun lunch!  A chair made just for the doll with her own cup and saucer.  We had first course- cinnamon rolls. Second Course- pretzel bites, cheese, strawberries, and veggies w/ranch.  Third course- Brooke and Aidan picked the picnic lunch: mini hot dog, mini burger, and mini mac n cheese.  My mom and I had the quiche and salad! Yum! Fourth course- sugar cookie, heart shaped cake, and chocolate mousse!  They also sang Happy Birthday to Brooke.  

Aidan is ready for the food!

Brooke and McKenna are ready for lunch!

Birthday Dessert!  The flower is in a little pot that has Chocolate Mousse inside!

Aidan was beyond good, so his reward...the Lego Store!  Fun!  After a trip to lego land, we headed back to AG for one last item....which I can't talk about now. ;)  More to come on this.  We were beat!  We headed back to hotel, and saw our friend the door man.  He was so excited to see Brooke and said he was sending a special surprise for her later!  We headed upstairs to take a much needed rest!  After resting, the kids wanted to check out the pool!  What fun.  It was nice and warm and not to deep.  Everyone had a very good time.  I let Brooke swim without her collar.  Which she paid for later, sad to say.  I think we need 2 collars for times like these.  She told me that night that her head felt like it was on backwards, and she could not hold it up anymore. :(  Lesson learned!

Lego Woody and Aidan

Outside Store

After swimming, we headed out for dinner.  Unfortunately, the restaurant we picked was not wheelchair accessible.  So we decided to order pizza at Gino's East(yum!) and ice cream from Ghirardelli.  With food in hand we headed back.  Poor Brooke fell asleep as soon as her PJ's were on.  Then a knock came on the door.  The kitchen had sent up a piece of Chocolate Cake with Raspberry topping, and 2 cream sodas!  Happy Birthday was written in chocolate on the plate.  Compliments of her dear door man friend!  Brooke was sound asleep, so we took a pic and stuck in fridge.  What could be better than chocolate cake for breakfast anyways?!

Brooke and Josefina ready for bed.

Birthday Treat from a friend!

Day two was over and it was beyond words!  Brooke had an wonderful time, and we met some truly awesome people!  How grateful we are!