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Monday, February 23, 2015

It is not about what is lost ~ it is about what still remains

It has been awhile since I've written - life has gotten in the way - which is a very wonderful thing. We've had lots of cherished visits from friends, weekend trips to the park or have been out front playing with the neighbors over the past few weeks. Josiah and I have recently faced some tough things emotionally but are moving forward and have leaned on each other for support.

Max had a rough few days not keeping his bottles down and has just been a bit more fussy than usual all weekend.  I remind myself - wouldn't you be grumpy if you weren't feeling well either?!? Hopefully this was just a small stomach bug that will pass and we will get "Max" back soon.

We've unfortunately both noticed some decline in Max since our trip to Pittsburgh - which was already a month ago.  It is harder for him to smile - when we get a laugh, coo or smile - it is the greatest moment, because we don't experience this as often - Max was the most smiley and happiest baby so this one is so tough. I read one of my first blog posts with me singing the alphabet to Max and at the end asking if he wanted me to sing again and he'd coo in response - I haven't gotten that in awhile from him - yesterday I tried it and didn't get any response. It's heartbreaking how fast he continues to lose certain things - this disease affects both the brain and the nerves - his brain is the most affected right now - he has moderate damage (mild, moderate, extreme scale) and I'm starting to notice he can't comprehend as much as he once could...OR maybe he just can't express what he still understands.  A few months ago he had a bit more physical strength; he was really aware of things and would follow things with his eyes - he could comprehend somewhat; he loved Mickey Mouse cartoons - they caught his attention with the music, colors and fun shapes. Now we cherish the days - moments - where he gives any kind of response.  Different positions are very uncomfortable for him...he also is more intrigued with lights and fans...more so than his favorite shows where he could learn more - he also looks past things...tougher to focus. We were able to borrow a kid cart (medical stroller) which in the beginning worked well - now it is hit and miss with him.  He just likes being held, comforted and consoled - I have to admit while it does a number on my back and there are moments I want to put him down to cook dinner or clean the house - I'm enjoying these moments to be able to hold him close and other things can wait at this point in time.  When I get trapped in these moments where I am sad about what he is missing out on...catching myself focusing on what he can't do and what has been lost, I think of something that I heard a few days ago on a reality show (yes I admit - I'm a reality junkie - a guilty pleasure)...the Celebrity Apprentice...Leeza Gibbons was talking about her charity Leeza's Care Connection which honors her mom who faced Alzheimer's. Her charity helps families who are dealing with Alzheimer's Disease.  She made a comment that stuck with me...something along the lines of: "We have to remind the families that it's not about what is lost, but what is still there.  You have to embrace what they still have and enjoy those moments"....I'm trying...I'm really trying...

I am also still very confident that there is a greater purpose for all of matter how hard it is to believe.  He is in our lives for a reason.  He is our amazing son - and we love him unconditionally
just the way he is.

We also just recently watched The Theory of Everything with highlights the life of Stephen Hawking - what an amazingly brilliant person who has lost so much to ALS but is determined to make a difference and push forward and he has lived past what anyone could have ever predicted.  It was a difficult movie for Josiah and I to watch - ALS seems very similar to Krabbe in that so many functions are lost - however the brain remains in tact...not so much the case in Krabbe. How I hope that Krabbe gets added to our Newborn Screening tests here in AZ and all across the country - it is really the only hope any family has with these kids.

Max loves being outside.  Yesterday he was so upset in the morning and we just couldn't calm him but we still took him to an amazing event organized by our family: Yoga in the Park (last Sunday of every month we get together).  He instantly calmed down the moment he was held and outside.  He loves to look at the sky and the clouds.  Always looking at the sky... He became fussy later in the day and so we went out in our backyard and again instantly calmed down - got to touch the leaves, feel the breeze...enjoy nature. And just gazing at that sky.

Emma absolutely loves her brother - we were at a Valentine's themed play date a few weeks ago and Emma was making sure that Max had Valentine's cards, that he got candy too, that he got to experience everything that she did and she made sure that no one left him out.  She continues to amaze me every day and helps us so much when we can't grab things - she helps. In her eyes - Max is perfect, normal and her brother - she protects him and loves him unconditionally.  I continue to learn a lot from their bond and their love every day.  When she gives him a kiss - while Max doesn't always smile and can't express as much any more - you can see the smile in his eyes - he loves her as well. 

We did get some good news after testing Emma - she doesn't have Krabbe- but she is a carrier of the disease (much like Josiah and myself).  If she has kids one day, she would have to get her partner tested - if he also is a carrier, they would have to be careful because they would have a 1 in 4 shot in giving their children Krabbe...if her partner isn't a carrier then their kids will be fine...but she could pass the gene to her kids and they may also be carriers.  In the grand scheme of things - this is great news and we are happy that she only carries it...doesn't have it.

Josiah and I have decided to make a bucket list for Max.  We want him to experience as much as he can. He already has done a lot - Been to Disneyland and met Mickey Mouse (one of our favorite family places well before kids), he has been to the local aquarium, been on an airplane etc. etc. It's a little difficult to come up with ideas for a one year old - but we are doing our best to start this list and hopefully continue to build amazing family memories together while we have the time with him on this Earth.  If you have any ideas - please let me know.

Music has been a therapy to me lately.  It is amazing how the "right" songs with messages that I need to hear keep finding their way to me. With my long commute to work and back - it actually helps me get focused for the day and control my emotions a bit - the car is where I release a lot so I can move forward.  Music is good for the soul - it is for mine.

We continue to get amazing donations, cards and well wishes.  I apologize for not getting our thank you's out personally - but we hope you understand that the time we have is devoted to our children and we are trying to make the most of the time we all have together as a family - it is so precious. If we haven't reached out - we will...we will be sure to contact all of you individually - we appreciate all that you've done, more than you know.

February 28th is Rare Disease Day.  Our goal is to spread awareness - have more people learn and understand this disease.  While there isn't a cure today, there may be one in the future and there are treatment options today if caught early enough. Awareness is key.  Thanks for the support on the 28th to help raise awareness for Krabbe to help others going forward.
I love someone rare - he is my world.

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