Unsung Heroes

This blog is dedicated to my little lady Brooke, but I have 2 other amazing kids!  I decided to write about them tonight!  Aidan and Chandler are my 2 little heroes!  God knew exactly which boys this family needed.  Each day I am amazed at both of them.

Chandler.  His name means candle maker.  That might seem like a simple meaning, but it is not.  A candle maker brings light to a dark room.  And that is my Chan!  He can light up any room he is in.  Tim and I tell each other all the time what a happy baby he is!  And he does not mind that in his first 7 months of life he has been carted to numerous doctors appointments, tests, and all over the US.  Chandler was not a bit upset in NY.  He was fine to come up to the hospital to be fed and then go back with Grandma.  Each day I watch him grow and play, and feel so blessed he is my son!

Aidan.  Well if you have ever met this boy, words are hard to find!  Sometimes I think he is a 90 year old in a 6 year old body.  He is my sensitive one, and thank goodness for that!  He is there for his sissy whenever she needs him, and his mom too!  The other day Brooke was having a major meltdown.  I had her, the stroller, and Chandler in the stroller.  I knew I had to carry her, but how?  I did not say anything, trying to work it all out in my head.  Aidan looks up and says, "Don't worry mom, I got the stroller and Chandler.  You get Brooke."  Ok so I have tears just writing this.  Even in a moment where I feel stressed, my 6 year old saves the day!  Aidan has saved many days!  He also offers comic relief.  He really is hilarious.  Not sure if you are just super funny at 6, or what, but he keeps us all laughing.

I know all this is hard on my boys.  It is hard on Tim and me, so I can only imagine.  But they are strong little men, and I am so proud of them.  Each of them bringing their own special gifts to our fam.

Inspired

I can't say how many times I have been inspired by a person with Chiari!  One example is my amazing friend Nicole.  She suffers each day with Chiari and has 3 children who also have it.  She is always trying to better their health and make life a little easier.  While doing all this she counsels people like me who call her with endless questions.  Another is Julie Carter who helped and counseled people out of an old chicken coop.  You may have seen her story on Extreme Makeover.  She too has 3 children with Chiari.  Both these ladies continue to be an inspiration to me.

Just a few short days ago people gathered all over the US for a walk to help teach others about Chiari and raise money for research.  I wanted so bad to go to the walk in Toledo, but with Brooke it was to much this year.  Shortly before the walk 2 women with Chiari earned their angel wings.  I did not know either ladies, but my heart breaks for their families.  I pray that both families are comforted by God's love during this time.  I have put a link below for one of the ladies.  This just shows that more research needs to be done!  So many people still think there is a quick fix.  For some there is, but for many this is a lifelong battle.

Amy's Story 

I am reminded that our stay here is short and undetermined.  It is so important to enjoy each moment and hold loosely to things of this earth.  I was struggling for the past 2 days over my nursery bedding set.  Part of me wanted to let it go the other wanted to cling tightly to it because it reminded me of the joy I felt when I found out I was going to be a mom.  I wanted to pass that joy on to someone, but I was also wanting to be selfish.  I finally posted on facebook that I was getting rid of it.  I was still a little sad, then I heard about these women.  Ugh talk about a slap in the face!  Silly bedding!  I mean really it is the memory not a piece of quilt.  Make the most of your day, and kiss those babies! (Even if they are 25!)

Makeovers, Friends and Answered Prayers

The MRI's came back fine.  So this is good news, right?  Our pediatrician probably wondered by my response today what was wrong with me.  She told me the MRI's looked good, and the they showed no evidence of a Tethered Spinal Cord.  I said, "Oh no!"  OK terrible mom!  But I am just so uncertain as to what is causing all this pain in Brooke's legs, and why she can't potty train, and many other things???  You never want anything to be wrong with your child, the problem is something is wrong.  I just feel like we are not getting all the answers we need to help Brooke.  So now I will wait to hear from the neurosurgeon on the next steps.  In the mean time, we just have to help Brooke cope.

Yesterday Brooke asked me if I wanted a makeover.  I told her sure!  So she gave me a full makeover with pretend hair wash, trim, blow dry, and style.  She even did my makeup.  While she performed the makeover (which I desperately need!), we chatted about life.  It was funny, just like a real salon.  Polite small talk.  Brooke asked me if I had daughter with Chiari.  I told her yes.  She told me she had a daughter with Chiari too.  She said sometimes it was hard for her daughter.  Her daughter was tired a lot.  I told her so was my daughter.  She said, "well maybe sometime they could meet?"  As I sat there I realized what a grown little 4 year old I have.  Brooke is dealing with life situations that most adults can't handle.  I get tired everyday from just normal life stuff, so why would she not be exhausted from normal life stuff!

This conversation also made me realize that she needed a person to connect to with Chiari.  Yesterday we went to a birthday party for another little girl with Chiari.  She is turning 3 and about to face another brain surgery.  She is cute, dainty and as strong as Brooke.  When I look at her, I see Brooke and my heart aches.  I on one hand am so thankful that my daughter has a friend she can share this journey with.  But on the other hand, I am sad for her family that they too have to endure this horrible disease!  Yet they also trust that God will pull our little ladies through this.  That He will make us all stronger and our faith more resilient.

Prayers are answered in so many different ways.  I still may not know what is causing all the problems for Brooke, or even how to fix them.  But day by day we are adjusting to this new normal.  Our makeovers are not in a posh salon, but in our own cozy bedrooms.  Our new friends may also have to endure pain and heart ache, but we will all hold each other up along the way.  So here we go...we are gonna keep on trekking!

Another MRI

So we spent the day at Children's Hospital.  Brooke had to have another MRI.  We have never done an MRI at Children's and wow what an experience.  I know people really love this hospital, and I know they do some great work there, but...man what a day!  Probably one of the worst MRI experiences we have had.

As soon as they took us back to the room Brooke wrapped her legs around the stroller sides.  She started screaming.  It took me and a nurse to pry her from the stroller.  This was at 11:35.  At 11:45 they realized they were going to need to give her some versade (sp.?) to settle her down.  So that then took me and 2 nurses to hold her down while another put the meds in her mouth.  Which she quickly spit out.  She did manage to keep some down.  Then they had us go sit in a waiting room until 1:15.  By this time the meds had started to wear off. So she fought while getting back into bed.  The nurses (who I must say were very nice)  told me to read her a story while they drew blood and put in the IV.  I told them to just take the book, because they would need me to hold her down.  I do not think they believed me.  So they told her they were going to wrap her up like a burrito.  She wiggled loose of that in a matter of moments.  So myself and another nurse held her down, while 2 other nurses put in the IV.  They then commented on how strong she was.

After this they had go back to the MRI room.  Before she was even asleep, they tried to put on the blood pressure cuff, heart monitors and pulse ox.  Again more kicking and screaming.  Finally they put the poor girl to sleep!  Can I just say every other time she has an MRI I hold her down while they quickly put a mask on her.  She is asleep in a few moments and then they attach everything and run the IV line.  So much less traumatic!

Two hours later the procedure was done.  Now we just have to wait.  I do have to say I am even more thankful for Dr. B and all his staff!  Had this been my experience in NY I might have run away screaming.  It is never easy to see your child upset but when it is drawn out over several hours..it becomes almost unbearable!  But she is home and playing Polly's while watching Christmas movies.

Beyond Belief

Ok so this title really has nothing to do with anything, but Aidan is listening to this song in the other room and I am not creative tonight.  We have felt so blessed for all the wonderful meals, and help people have poured out on us.  It really has been a huge help.  After my last post, I think people were worried I was a little down and out.  But I am happy to report my self pity party is over.  Nothing a Dr Pepper and brownie could not fix.

Moving forward though, Brooke's neurosurgeon agreed the behavior is not normal.  So now we have to go get an MRI and Blood work.  She also is now complaining about pain around the incision.  We can no longer put things over the head, unless it can go up her legs.  Plus her leg aches are much worse now.  And just tonight Tim and I were discussing that we have noticed some regression in her behavior.

We have a follow up in NY 3 months after the procedure.  I can't believe on Tuesday a whole month will have gone by.  I am hoping to know more after these next few tests.  It really is Beyond Belief how far we have come!  Well ya knew I had to throw it in there somewhere!  Gotta be a little Cheesy!

The Chikfila Benefit will be September 30- from 5-8 at Dressler Road location.  Hope you can come!

Also September is Chiari Awareness Month!  Help me spread the word about this disease.  We desperately need more research and more health care professionals to understand it!

Thanks for continued Prayers!

Each Day is New

I have not posted in a while because I have been down, blue, depressed, whatever you want to call it.  For some reason I just could not think of a good way to write how I was feeling.  I am still not sure I can.  But I am going to attempt it.  Brooke is doing good physically.  Her head looks great, and some days she runs around like nothing ever happened.  Today was one of those days.  But not every day is this way.  And this is why I have been down.

Ok I am still just sitting staring at the keyboard.  No words.  Basically it is her behavior.  She throws these awful fits.  In fact, a couple have been so bad they leave me in tears.  She hits, kicks and screams with all the power she can come up with.  The fits really have nothing to do with anything.  She is not angry about anything.  And after she throws the fit she returns to normal activity.  When I try to talk to her about it, she says, "Mommy I was not screamin."  What!?  Brooke also just says these random off the wall things.  They really make no sense and she says them at odd times.

So most of you are probably thinking, "Well duh Melinda, she did just have brain surgery."  And I know this.  That is probably why I have not written any of this down.  It is very hard to explain.  But if you go through one of the fits with her, it would be clearer.  I really feel like my daughter is completely not in my control.

All of this has really clarified for me that Chiari is a life long battle.  There is no quick fix for most.  We need more research, more doctors to learn about it.  I as a mom need to educate myself more.  I need to find ways to help my lady cope with her pain and help her learn healthy ways to express she hurts.  I need to just be there for her on the bad days.  And just as important on the good days.  My one friend who has Chiari always tells me each day is different, each day is new.

So if you see us out, and Brooke refuses to talk.  Or she shrugs your hello off, please do not take it personal.  It is probably not a good day.  If she jumps up and down and talks your ear off, her day is shining bright!  As for me, I am gonna pull myself up by the boot straps and move forward.  No time for wallowing here!  Got some cute kids and a hubby to take care of!