When the Answer is YES!

Remember as a child having a really important question to ask your parents and just hoping the answer would be yes?  I would get so nervous to ask, think about all the possible scenarios in my mind.  What if they tell me no?  What if they say maybe another time? What if, What if...... so many possibilities.  But as a child we do not think of all the answers as possibilities.  Many times their answer would leave me in a puddle of tears, crying on my bed, sobbing life is not fair!

As we have been preparing to leave for NY, my mind once again, as it did last July, is running various scenarios in my head.  Being this is Brooke's second surgery, I feel we have a better understanding of the procedures.  But there is still so much uncertainity.  I find myself saying to God, "what if this, what if that?"  Not really knowing the answer.  But holding onto Faith knowing the answer is God's decision, no one else's. 

As a family, we have asked many questions over these past few days.  Trying to figure out how to get to NY, how to stay as best we can close to each other while there, and how all my kids can be near to me, as well as Tim.  My mom, who is an angel here on earth, will be traveling with us again to watch over Aidan and Chandler.  Tim will be there for the surgery and a few days after.  Since we all can't stay in the RMH, we needed a hotel.  Without me even asking the question, an unnamed angel paid for a hotel for Tim and Aidan!  Yes!  Then we are taking my mom's van and Tim needed something to drive because his truck needs brakes.  A wonderful family gave us money to pay for a rental car, and gas to get there! Yes!  What to do with our dog?  I was so nervous to leave him again since he was hurt last time.  A family (quite possibly as crazy as my own :)) offered to keep him while we were gone! Yes!  Since I posted about the PT and OT issues, I have had some wonderful people offer to help me learn techniques to help Brooke! Yes!  An awesome friend is dropping off a freezer meal to me, so we have a dinner when we get home! Yes!  Yesterday, Brooke received a package from another Chiari family.  It lifted her spirits! Yes!  Several friends are helping to watch the kids on various days as we prepare to leave. Yes!

The other day when I told Tim about one of these blessings, he said "We have seen so many miracles lately!"  And this is so true.  Please know my heart, we are so thankful for all of your gifts, support, and more importantly prayers!  We are humbled at how God has said Yes in so many ways.  Many of the questions we never even asked out loud!  I also know what a sacrifice many of these gifts were, and thank you for that sacrifice!  As we prepare to leave, my heart is not burdened.  I feel able to cope and deal with what is ahead.  I feel like I can be there for Brooke.  And I know those questions we still need answers to will be answered.

Another answered prayer, Brooke has such a peace about this surgery.  She understands this surgery might help with many things.  She is ready to go and get started.  Brooke can't wait to stay at the Ronald Mcdonald House and play dress up.  She is looking forward to seeing her child life specialist, Michelle.  Brooke already picked out a list of movies to watch at the hospital, and her craft bag is full of things to keep us busy.  She keeps telling me how excited she is to see Dr. B and hear his funny jokes.  I am so proud of this brave girl! 

There is no true answer yet if this surgery will fix what it needs to.  Even if it does, Brooke will still deal with headaches and dizziness from the instability in her neck.  Thankfully she does not mind her princess collar!  One thing I was taught from my parents is the answer is not always yes, in fact many times it is a variation of no, or wait and see.  It is not a lack of Faith when I say I do not know how this will turn out, but submission to God that he has chosen the best answer.  I do not fall into a puddle of tears and scream out that life is not fair.  I need to show Brooke the possibilities in all possible answers.  Remember getting the no answer, or the maybe another time?  Did it ever turn out that your parents were just protecting you?  No matter what, my family is being protected, and so the answer really is "yes". 

Butterflies and Tears

Today driving to work I felt so tired and a bit defeated.  Not for any real reason, just so many things going on.  I was alone in my van and just started crying.  I can't explain why, I just feel worn out by so many things right now.  Friday night I was at stat care for my wrist.  I fell a few weeks ago and it has been getting worse ever since.  They gave me a silly brace that I could do nothing in, so off it came.  On Saturday, I twisted my wrist and heard and felt this awful snap.  Then it started feeling better.  It is still swore but better.  Then Tim hurt his back.  He is having a rough time with it.  So as I pulled in to work, I wiped off the tears and just told myself to get over it.  Little did I know this day would just throw some more craziness my way.
Brooke's new collar


I got a call after lunch from Dr. B.  He received the report from the urologist and he wanted to schedule surgery.  He told me he unfortunately did not have this week open.  Umm...good!?  But he had the 30th, 31st and April 7th.  I commented this was so soon.  Then he reminded me we have been waiting for this surgery for 2 years.  I called the medical secretary and left her message requesting the 7th.  Two weeks away!  My stomach is full of knots and I keep thinking I just can't do this again.  I know this surgery is less invasive than brain surgery, but it is still surgery and my baby girl. 
Rapunzel

I leave work and am trying to wrap my mind around what I need to accomplish in 2 weeks.  I get a phone call from the PT from the school district.  If you work with the school district, I am sorry ahead of time.  I am trying to be gracious about this, but it really has me frustrated.  They denied Brooke for PT because she is in a normal range.  But her NS says she needs PT on her neck.  When I first went to them, I just asked if they could show me techniques to help Brooke.  They told me they could not help.  So after we came back from NY I called them again.  The PT said that they only provided care to enhance a school child's learning.  She then told me that even a private PT would probably not see Brooke on a long term basis.  They would just give me exercises.  That is what I wanted all along.  Now, I have to find a private PT and pay for it.  We do not have the resources for this.  I just do not understand why the school PT can not see her for a few times and give me the exercises.  This is another place where Chiari stinks!  People are just not educated on it and think PT and OT do not help.  And yet I read all the time that they do help.  Brooke struggles with so many sensory issues and was also told no for OT.  So here I am trying to be a PT and an OT for her.  And I am sure after spinal surgery even new things will come up.
Chan wanted his pic taken too!

I pick the kids up and we head over to pick up Brooke's collar.  Of course she is excited until she sees the thing.  She knows what they look like because her friend wears one.  But she started crying and screaming the thing is choking her.  Sensory issues here, she will not even wear turtlenecks because she thinks they are choking her.  God Bless the people at Hanger because they were very patient with her.  They left for a little while to adjust the collar.  Brooke was sobbing saying "I just want to go home!" over and over.  I kept telling her she was the bravest girl and that Dr B knew she could do this. I sat there listening to her and thinking of the upcoming surgery.  This poor girl has had a rough year!  When they came back in, Brooke put on her Brave Face.  She put on the collar.  We left and she was even excited to wear it in the car.  When we came home, we bedazzled that collar with stickers.  She wore it all evening, even when she did not need to. 

Tonight, I explained to her and Aidan about the surgery.  Brooke just said, "Will it be as long as my last surgery?" I told her no, and then said but you were asleep, how do you know it was long?  "I just do mommy, I remember."  When I think I do not have the strength to keep it together, I just think about her!  Brooke is my inspiration!  Ah, who needs peace and relaxation.  I will get plenty of that in heaven!

Waiting on the Unexpected

I am constantly reminded about the power of prayer.  It amazes me sometimes how little faith I can have, and then boom, God smacks me up side the head with just what I was praying for.  A few weeks ago at church, the little ones and I were talking about Peter trying to walk on water.  How he was so excited to go out and meet Jesus, but when things got tough he gave up.  He instantly realized in his desperation he needed Jesus.  Jesus...Who very calmly reached out and grabbed him, and scolded Peter for his little faith. 

Life is hard, and very messy.  Most of us would agree, it sometimes just stinks.  I look at recent world events and many of our friend's families suffering for various medical and financial reasons.  It is so easy to be like Peter, and just sink into the water.  Or worse, scream out that God could not possibly exist in all this chaos.  But I must say that in the chaos is where I find him best.  In the chaos, I can lay in his arms and weep, asking for strength to go on. 

This past week has been one where I started out sinking.  I knew Brooke's urologist would most likely not say she had a neurogenic bladder.  We had been going round with this for almost 2 years now.  I figured he would tell me to wait until she was a little older.  I called on Monday requesting notes form our last visit a month ago.  Heard nothing.  Called Tuesday....twice...still nothing.  By Wednesday, I felt sure we would be making the 2 hour trip to the urologist in Columbus in April.  I started giving up.  Then Thursday, I pretended that I did not even need this info.  Friday comes, and I think, ok...one more call, then I am done.  I call and the lady faxes the notes right away to my dad, who promptly emails them to me.  I read them....I reread...Wait does her diagnosis really say Chiari I Malformation and NGB???  NGB must mean Neurogenic Bladder!  I quickly dial TCI and get right through to her Nurse.  This rarely happens.  She says is probably does mean that, but the NS needs it written out.  Ok, deep breath, I call back the urologist.  Receptionist transfers me to the Nurse.  She says yes that is what it means.  I ask her if the doc could write it out in the chart.  She says, "why?" I explain.  She tells me to please hold.  Prayers begin, I am neck deep in the water.  The nurse comes back on and tells me it has been written out, would I like a copy. YES!!!  I emailed a copy of the new notes to her NS. 

I never in a million years thought this doc would budge.  He even made one comment that we would worry when she was 14.  And there it was written in the notes for the past month!  The unexpected answer, waiting on me! 

What does this mean?  It means we have the final piece to the tethered cord puzzle.  We can hopefully schedule this surgery.  This surgery should relieve Brooke's terrible leg pain and hopefully help her urinary and bowel issues.  It is not a for sure deal.  She may still have pain and other issues, but it could possibly fix it all.  She will still have the dizziness, nausea and headaches.  And she will still require a collar for some things, and have to avoid many activities. 

So I am in complete bewilderment and awe over the power of prayer, and then the worry sets in.  Another surgery...possibly in the same year as the last.  My little lady has been through so much.  Tears, and confusion.  Is this the right time?  Then I begin to think of our finances.  Surgeries put great strain on finances, especially when you live away from home for them.  We almost lost our house last time.  And we are still struggling to stay afloat, even after so much generous help.  How will we do it?  Then I realize I am sinking once again.  The unexpected is scary.  I just have to reach out and trust.  It really is the only way.  I know that we will be surrounded in prayer once again!

A Little Blue Jetta

Ok we made it back!  1200 miles in 4 days, all done in a little blue jetta.  As I was driving home today, I realized how many emotions flow through you as you travel so many miles.  When there are children, those emotions can sometimes messy!  Our last leg of the journey was not the easiest.  Thank goodness for my mom who kept helping with Chan and Brooke.  Poor Brooke was hurting and crying, and Chandler was hungry and tired of his car seat.  But we made it!  Thank you for all the amazing prayers that lifted us up and carried us home. 

We made it through all the rain on Wednesday, and checked into the hotel.  We were up early on Thursday and made our way to the hospital.  Her test was supposed to start at 9.  They had an emergency, and Brooke got bumped.  Poor little thing had no breakfast and no liquid.  She was a trooper and fell asleep waiting.  Then we got a visit from Michelle, the child life specialist, who helped her through the surgery.  It was so awesome to see her!  She again helped Brooke get ready for the MRI.  Poor girl just hates having the mask put over her face.  But she did!  So proud of her!  And I am so thankful for all the staff at North Shore!  They really help my baby girl feel comfortable!

Friday we went to see Dr. B.  Brooke was tired and ready to go home.  She asked me so many times if we could go home and see her daddy.  After giving all the info over the past few months to the nurse, we saw the doc.  He told us right away that he was pretty confident Brooke needed the surgery to de-tether her spine.  The problem is she does not have the diagnosis of possible neurogenic bladder from her urologist.  She meets all the other criteria, just not this one.  But she is not able to use the potty and the doc has to teach me to cath her.  Dr. B said if we could just get this from the urologist, he feels that the surgery would fix this problem.  He also feels that it would help her severe leg pain.  SOOO I need to get this figured out with her urologist or unfortunately find another one.  How can I just sit back when there is a surgery that could help her overcome this?

The next thing he told us was Brooke's cerebellum is still in place.  Which is great.  But, we did find out that she does have some instability.  We knew this may happen after surgery.  A ligament that runs in front of the brain stem is enlarged.  Thankfully Dr. B did not have to cut through the C-1 vertebra during surgery.  If he had done this, she would have Cranial Instability and required a fusion.  As it is right now, she just has a wobbly head.  So we have to be very careful.  If she is not, it could lead to Cranial Instability and fusion as a child.  Is hope is that we can wait until she older and her neck does not need to grow anymore.  Then she may need the fusion.  But if we protect her neck this may get better, and it may not.  We received the laundry list of things she can't do- gymnastics, tumbling, bouncy houses, trampoline, and anything that could jar her head.  We have to get a collar for her.  She will use this in various times to protect her neck.  Mostly car rides.  We also purchased her a more supportive booster seat to help protect her neck.  She also needs physical therapy on her neck.

We made a quick detour to NJ to visit family.  What a nice time to sit and chat with fam.  Then back on the road today.  Driving I thought so much about my little lady.  She is such a fighter, and I am so proud of all she has done to get through this.  She is sassy, sweet and wonderful!  I know whatever obstacles come up she will just keep flying over them. 

We could not get through this without prayers and support from all our friends and family.  We love you all! 

Set Backs

I should have known when I crashed my head into the wall while chasing the dog, this day would be interesting!  I guess I just figured the day had to get better, said while seeing stars.  Left the house 30 minutes late and slightly dazed.  Had to drop something at a friend's house, before all the errands.  So I am driving there and Aidan says, "Mom where are you going?"  I had passed their road by ten minutes and was headed toward Sandy Valley!  Second Clue!  As I was driving I passed a church sign that said, "Don't let the trying times make you quit trying."  Ok third clue.

After finding out we had no reservation at the Ronald McDonald House and they were closed for maintenance, I was concerned about our doctor appointment and MRI's.  I had called TCI over the past weeks and left numerous messages, but had never received the times for MRI, just doc appointment.  I called again, and left more messages.  Finally, mid morning I got a human.  I asked and she informed me that we did have the doc appointment on Friday, but no MRI's were scheduled?!  Seriously frustrated, I asked if it was possible to schedule them now, considering I was leaving tomorrow to come.  She told me it was highly unlikely, but she would try.  She promised me she would call me in an hour. 

I went to pick up the rental car.  They informed me they did not have the midsize I ordered, but they had several compacts.  I told them I needed the midsize because of three kids seats.  They said well they did not have any but they would give me a deal on the compact. Umm, I just stood there.  What exactly was I supposed to say?  No that will not work, I really need a midsize and I ordered a midsize.  Blank stares.  Just then another worker walks in with a returned midsize!  Amen!  Could my day be turning around?

I go back to my mom's house waiting for a call from the doc office. 2 1/2 hours has passed.  I call back.  "Is this the lady who keeps calling?"  Ugh yeah that would be me.  "The girl you were talking to stepped out."  Ok, do you think she might get back to me today, since I need to leave in the morning?  "Um not sure." 

So my head is pounding, and I just crash on my mom's couch with Chan.  We take a nap.  I wake up to realize it is 3:30!  Only 30 minutes and the doc office will be closed.  I hurry up and call back.  Thankfully the girl is in and she confirmed they can do the MRI, but she is not sure about sedation.  She says, "Gotta call the hospital to confirm sedation.  I can call you back, or you can hold."  Yeah I will just hold.  So I do and she comes back to inform that it is all set up!!!  Hooray.  "Oh and by the way, you need a letter of clearance from your pediatrician."  But they are going to be closed in 10 minutes, and I leave first thing in the morning. "Oh well I am sure it will be no problem for you to pick it up."  Really??  Thankfully, I am pretty sure our ped can fax a note to the hospital, so I will deal with that tomorrow.

We are packed and ready to go.  Have to stay in a hotel this time, and can I just say I am totally freaked out about the bed bugs!  My mom watched a video on what to look for.  I know, I am probably overreacting, but it is so expensive to get rid of them.  Brooke is sad she will not be able to visit RMH, but she is excited to see her beloved Dr.B. 

Tonight while packing, she comes up to me in a play voice and says, "Taking your daughter to New York?"  Yeah I say, she has a check up, but no surgery.  "Oh that is good, she is kinda sad she still has that scar though."  I say- You know what, when I see that scar it reminds me she is one of the bravest little girls.  Big smiles and a kiss on my cheek.  Then Brooke bounces off, comes back with her own voice, "Mom, I just met this girl who said I was brave like a super hero because I have this scar!"  Man I will take all these set backs and hundreds of days like this to spend even a second more with this girl!!!! 

Thanks for the prayers and love, we are feeling it!

Scuffed Shoes

A few weeks ago, I was leaving a friend's house and slipped on the ice.  I felt my self hit the sidewalk hard.  My poor leg and wrist received most of the damage.  I sat back on the curb, and fought back tears as I looked at my cute, black flats....scuffed toes.  I sat there for only a moment, but felt deep sadness over my silly shoes.  Yes, you are probably thinking, good grief girl get a grip.  And I did.  I marched back to the car and headed off to the next destination. 

I pulled those shoes out the other day, my only pair of black flats.  I stared at my shoes, scuff mark and all.  Years ago, I would have tossed those shoes and bought a new pair.  Those days are long gone, major changes to budget do not include new shoes.  In fact, these shoes I bought on sale right before Christmas.  Only $5.50.  I knew these shoes needed to last. 

I stood there looking down at my feet, and realized that I was more messed up then these shoes.  I have fallen so many times, and had to be dragged back up.  Each time, a new scuff mark shows up.  And yet, my friends, my family, and God keep reaching down to keep picking me back up.  Never once have they given up on me.  Never once have they tossed me aside like an old shoe. I have to say I kinda like my scuffed shoes now.  They remind me to be humble and not prideful.  They remind me to be thankful for all the blessings I do have.

We are headed out this week for a check up with the Neurosurgeon.  This is a time when I have been dragging my feet, creating "deep" scuff marks.  I, of course want to get answers, but am more nervous of not getting any answers.  Brooke will be sedated for the MRI on Thursday.  She will be having a brain, thoracic and lower lumbar MRI.  They will be checking to see if she has any herniation in her cerebellum.  They will also be looking at cerebral spinal flow.  And they will be checking for a tethered spinal cord.  We will see our wonderful Dr. B on Friday.  I called to make sure we had a spot at the Ronald McDonald House and found out they never received our reservation from the doctor office.  They then told me that they are closed for 2 weeks for maintenance.  ????   So we are scrambling to figure out plan b. 

With all this ahead, I am trying to focus on the concerns I need to go over with the doc: severe headaches, dizziness, falling down stairs, extreme fatigue, sensitivity to light and sound, nausea, vomiting, feeling ill after eating, severe leg pain, back pain, extreme temperature changes, urine and bowel issues.  How can a little girl be playing and ok one minute, and 20 minutes later, in horrible pain?  What can I do to help her deal with this?  What can I do to educate people?  How can I explain to people this is life long?

As I think and pray over this, I am encouraged!  I am encouraged by so many people.  I had a friend sit with me today.  She listened, and never once questioned my intentions for my child.  She offered her love and support, but never once did she criticize me for how I am handling all this.  I have another BFF who just pulls me up so many times.  Mostly by caffeinating me :), but also by love and listening.  I have others who have walked this walk or are walking this walk, who just get it.  Then there are those 100's of people who are praying each day!  I do not know each prayer, but I am encouraged by everyone. 

So I wore those scuffed shoes the other day to work, and found encouragement right outside my door.  A young man at our church started doing some volunteer work at the church.  I knew of him, but had never met him.  Since he is going to be working with me on some projects, we were introduced.  He stuck out his hand for me to shake, and there was one of Brooke's Lovely Little Ladybug bracelets on his wrist.  My heart was filled.  This young man, who did not even know Brooke, was praying for her.  And more than that, he was supporting her!  I can not possibly tell you the immense emotion that gave me!  I am crying just typing this.  Knowing that my daughter is cared for and loved is a wonderful feeling!  I looked down at my shoes, and knew that I was being pulled up from the fall!