Impossible is not a Word

The other day I was driving with the kids.  A song was playing on the radio and the it said "Impossible is not a word."  Aidan chimes in, "Wow mom, you were right impossible is not a word!"  I chuckled, and then started to cry.  The past few weeks I have not been taking my own advice.  I felt like the impossible is staring me in the face.  A friend of mine told me the other day it is helpful to share what is going on.  This way others can pray.  I shared a few things in the last post, but it is hard for me to share some things.  I guess it boils down to pride.  Yes I know this is not a good thing.  I think it is also hard to be so public with your life.

Brooke has been one of the key focuses of our family this past year.  She has needed our time, love, and many of our resources.  Our bills have piled up.  Many of them seeming to swallow our paychecks up.  Our mortgage, electric, gas, car payments, have all taken hits.  We are working hard to catch everything up.  I spend so many hours on the phone with one collector after another, pleading for a little more time.  Thankfully so many amazing people have stepped up in the past few days, and the dark tunnel does not seem quite so long!

Many of you know I am guardian for Tim's aunt who is developmentally handicapped.  She stays with us once a month.  But a few weeks ago she had something happen so that she can no longer go to her day service.  We have her coming to our house a few times per week, until we can find a good place for her.  We love having her here but with home schooling and work it is hard.  But this morning, Brooke looks at her and says, "I love you.  You are in my heart everyday!"

Tim's grandparents health has not been good over the past few months.  We have thought several times it was the end.  I have been struggling with how to tell Tim's aunt about her mom.  It makes my heart sad to share this with her.  The other day I went to the hospital and spent time with Granny, and left with a heavy heart.  It is never easy to say good bye.  Thankfully she is still fighting.  Aidan and Tim were able to go and spend time with her yesterday.  She told me on the phone how wonderful it was to talk with Aidan and Tim. I asked Aidan if it was a nice visit.  He said, "Well I do not know if it was nice, it was hard.  But it was good to see her, and I love her so much."

Several months ago we started this new food plan in our house.  It really boils down to preparing everything from scratch.  It is very labor intensive.  And you might ask, "Why???"  Well the answer is simple.  I need more craziness!  No really it was to try and get our family healthy.  Aidan has suffered from asthma for as long as I can remember.  His neubulizer is his best friend Fall, Winter and Spring.  He also has terrible migraines.  Tim has been sick for several years.  Out of the blue he will become violently ill.  We have seen numerous docs.  All say food related but not sure why or what foods.  So I decided to give this a try since friends have had good results with it.  It has been hard but amazing.  Over this past Fall and Winter, Aidan has used his neubulizer 5 times and  had only a few migraines.  Tim has felt much better and says he notices when he does not eat the right foods.  The more amazing thing, we have purchased no antibiotics this winter!

We have struggled before with finding answers at the uroligist.  Somtiems I think I go into the appointments with my own agenda.  I know what I want the doc to say, because I want Brooke to feel better.  When they say they want to wait, I get frustrated.  More time means more time she feels bad.  But I am learning that God will handle this in his time.  I do need to seek out good docs, but then I need to let them do their job.  I need to listen.  I did this at the urologist with Brooke yesterday.  I did not hear what I wanted to hear, but I feel like we communicated well and came up with a feasible plan.  Tough decisions ahead, but not impossible.

I am so thankful for the moments that remind me that nothing is impossible.  God has placed so many amazing people in my life.  They have given support and love in many ways.  I am thrilled for this life I have been given.  It grows me each day.  Each day is another day to love on these little angels in my life.  Another day to live life with my amazing husband.  And another day to see the impossible become possible!

Reality

I have to admit right off that this is not a post that leaves a warm fuzzy feeling.  I was chatting with a girlfriend the other day, and we were talking about the lack of honesty we sometimes have with those around us.  We can put up these fronts that all is ok, when in reality it is not.  Sometimes it is good to do this.  But other times we need to let the reality be seen.
The last two weeks have been difficult for the Crown Fam.  I have struggled with just how i can help Brooke.  I want so much for her to not feel badly.  We had hoped the surgery would help, and in many ways it has. Many of Brooke's issues I do not write about on here.  I want to give her some level of privacy and I know how permanent the Internet can be. 
I have been looking to see if maybe PT or OT therapy would help. We went last week for testing.  They did activities with her and played some games.  She was in a great mood and played all the fun games.  Then they told me she functions at a normal 4-5 range.  This I knew, she is right on target, but she tires so easily.  Plus she has such terrible leg pain, and gets very wobbly at times.  They told me they do not think they can help her.  Needless to say I was frustrated.  As we left, Brooke tripped and fell into the van.  She then got in the car and cried because she was tired.  We made a quick trip to Walmart, where she rode in the back of the cart and whined because her legs hurt.  Once in the car she finally cried herself to sleep.  An almost 5 year old little girl should not be that tired after 20 minutes of playing.
We have decided to go back to having Brooke stay home for things unless she has to go.  Even just spending the afternoon at Grandma's is tiring.  She cries most of the way home and then falls asleep.  The other day I left her screaming at my moms because she did not feel well.  She cried for over an hour.  She finally calmed down, and watched movies.  This just breaks my heart.  It is so hard to see your child hurting and not knowing how to help her.  I worry about her future if the pain should get worse.  Chiari is so unpredictable.
Each time we get home and Brooke is asleep or just to tired to walk in, I carry her up the stairs.  If you have ever been to our house, you know you have to go up a full flight of stairs.  This scares me each time I go up these stairs.  What will I do when she is heavier?  How will I get her in?  What happens when my body just can't carry her anymore?
We are going back to our urologist here one more time.  We will see what happens.  We have an appointment with a urologist in Columbus but not until April.  We go back to NY in February.  I just feel so overwhelmed.  She is ready for more urodynamics tests and MRI's once again. 
This is not a post to complain.  I am not writing this to be reprimanded for a negative attitude.  I still have faith that God will see us through this.  He never fails.  But I am human and some days I just get tired.  I am writing this to tell other moms, dads, families who are in similar situations to hang on!  We all need support and reassurance.  I think that we need to show the Real in all of our lives sometimes.  Not for pity, but to say we are all in this together.  Chiari is a yucky disease, and so many people have not even heard of it.  Surgery can be a great fix, but sometimes it is not.  Some days are great, and others just plain stink.  Some moments Brooke runs around with a smile, the next she is crying in the car because she over did it.  Just a simple thing like a climate change can make her feel worse. 
Thanks for reading my rambling post.  It is an amazing journey to be Brooke's mom.  I would not trade this job for any in the world and that is Reality!