The Daily Challenge & Our Train Park Adventure

This disease is devastating. I got in the car yesterday and looked at Max through my mirror - his eyes were staring off in the distance...they were going different directions...I started crying while my three year old asking me if I was ok.  I think Max's eye sight is very limited. This disease is moving so fast.  Josiah and I have been putting things in front of his face with no real reaction.  He can definitely hear us and occasionally I think he will lock eyes with me - but it is happening less and less.  He's also lost that beautiful smile. The baby who slept through the night at 1 1/2 months and laughed and smiled like no other baby I've ever seen...is now not able to express much.  It is heart breaking.

When I get him dressed each morning - I talk him through it. He gets very jumpy or irritated with certain quick movements so talking him through it and going slowly seems to work.  At the end, I tell him how proud I am of him and that he is so brave for not crying - his eyes always widen...a sense of pride...at least I'm going to interpret it this way. I remember posting quite awhile ago about me singing the ABC's to Max and at the end I'd ask him if he wanted me to sing again - and he'd coo.  I'd give anything to have that moment in time back - to give him back those simple abilities.  Life continues to change and throw obstacles our way...we've learned to adapt and change as needed but when you look back or think back to those early and happy days...it is hard.  It is hard to live in the present and not to grieve the inevitable.

About a month ago we had an amazing Saturday at a local train park with the Jamison Family. I'm sorry I haven't posted this until now but wanted to share that we fulfilled Max's bucket list "Ride a Train" at the park.  Emma loved the carousel, and we walked through an older train car from the 1920s - it was very cool.  Then we all got on a little train and rode it around the park - Max ws very tired for a lot of the day but was soothed by the train ride with the wind in his hair - he really liked it. Thank you to the Jamison Family for the fun Saturday and for spoiling the kids and us - it was so generous of you all and was a great day spending time with you.  I've included some pictures of the train park below - be sure to scroll to the bottom to check them out and I hope to upload the video soon as well.

We are taking each day as it comes.  Suctioning and trying to modify his feeding schedules appropriately so his little body can handle it are our daily battles.  Working to get insurance to cover certain things and working now with the state insurance to get the nursing care we need has been crazy.  Swerving to get to the side of the road because he is choking or me jumping in the back while Josiah continues to drive happens more frequently. It is scary to only have one adult in the car.  I'm sure during rush hour that we upset a lot of people when this happens. Just remember if you get cut off or someone does something on the road that comes out of nowhere - please remember that they could be racing to an emergency or trying to help their child in the backseat.  While we try to be as careful as we can, there are times that we get a little crazy. Luckily the majority of his struggles in the car have come when both of us have been there but we've been alone when it happens and it can be very scary for him and for us.

We have a nurse come out to the house once a week to weigh Max and answer any questions to be sure he is where he needs to be with everything.  We have a therapist come to the home once a week to help massage Max and stretch him - Max LOVES her.  You can tell it has been a good day when "Miss Lisa" has come to our house.

It continues to be a struggle to balance "real life" with all of the medical obstacles but we are getting through it the best we know how.  Emma is now alerting us if he is choking and has the suction machine in hand to help Max out - how many 3 year olds even know what a suction machine is?! :-( She perseveres through it all but some days the "attention" balance is harder than others and she clearly suffers with not as much.

Thank you for your continued support.  Your messages on Max's Facebook page are so loved and each one is read.  We appreciate the questions - I'm happy to help educate the best I know how.  Keep them coming.  We appreciate all of the support around the wristbands, t-shirts, gifts, money and simple notes. Your love surrounds us and helps us through each day.  Thank you for continuing to lift us up and help us out.  We appreciate it more than you know.
~Allison

Anthem Community Support

"I've heard it said

 that people come into our lives for a reason, 

bringing something we must learn,

and we are led to those 

who help us most to grow if we let them

and we help them in return."

 

~Stephen Schwartz, Wicked the Musical

I resonate the best with music. Music is so freeing to the soul.  I have quite a commute from work to my home so I find myself allowing the music to speak to me during these commutes ...some of the lyrics may not have been meant in the way that I interpret them but it helps me none-the-less. Sometimes it can be comforting, heart breaking, eye opening...the list goes on. I've had some good cries to and from work just releasing tension, fear and other things, and I've also had a sense of great joy and strength.  It is a good reflection time for me.

I love Broadway musicals, with WICKED being one of my favorites, especially the music. "For Good" came on in my car the other day with the above lyrics really making me think. I personally don't think that things happen by coincidence or people cross our paths just because...there is a reason and always a chance to learn from another.  I've found that if I allow myself to open up, I can learn.  I can learn more about them, learn a life lesson, learn about myself. I've learned so much in the past year. I've learned how gracious people can be and how many people are willing to stand by our family. I've gained friendships where I never imagined I'd find them, but I am extremely grateful to have them. I've taken the most stressful moments and tried to find a positive light through it all. Max has come into my life for a reason.  He's teaching me so much and I'm growing as a person. We all have a purpose but his is truly special and has brought a lot of good out of a lot of people, me included.  Would I change this purpose... selfishly,  YES of course - it is hard seeing him go through what he does each day, but trying to comprehend this and find a light through it all is the way that helps me get through each day. I'm also trying to help him through all of this, the best that I can.

So many of our family and friends and even complete strangers have been incredibly supportive of Max but we've found that the community of Anthem is unlike any other.  We were contacted through Max's GoFundMe account by the Anthem Country Club who was hosting a 50/50 raffle at their golf tournament and they wanted to support us with 50% of the proceeds that they received.  What an amazingly generous gesture which we greatly appreciated.  On top of that, the person who won, Elaine, decided to donate her winnings to us...so we got 100% of the raffle.  What amazing support that we have received from this community and we are humbled and grateful for love and support.  Thank you for taking the time to support us and continue to help us raise awareness.

A few weekends ago, a tennis tournament at Anthem Community Center was also hosted in Max's honor.  People went out of their way to make posters with his pictures, they had a raffle for prizes, and flyers were handed out to educate about Krabbe.  It was amazing how many kids and adults came out to support us. We were able to bring Max late in the morning to thank everyone in person.  I'm so glad Josiah was there to jump in with a short speech about our thanks because I was choked up - the blessings that continue to present themselves are just incredible.

The Anthem Community comes together to take care of those in their community.  We are so honored that Max was highlighted in their programs.  He's so loved by so many.  Thank you to both the Country Club and Community Center teams for helping us raise awareness and helping us financially with Max as well.

We have been fortunate in the fact that a lot of the money raised has not had to be used yet.  We don't know what is ahead but have been fortunate with our insurance and family support. However some most recent necessary equipment was deemed "comfort items" so we may be tapping into that resource.  I wanted to mention that if we end up not having to use it for expenses for Max's equipment, therapies etc. we look to donate it to help other families or support some of the programs who have supported us.

We did launch a t-shirt booster campaign to raise awareness about Max and Krabbe. If you are interested in getting a T-shirt or Tank Top, you can do so here until June 15th: http://www.booster.com/miracleformax1

As I mentioned to someone recently, we continue to take things a day at a time.  We help Max through the rough moments but we really enjoy the moments of joy and fun, celebrate the little milestones and continue to love him as much as we can.

I will have an update soon on our Train Ride with Max and also our experience at Luke Air Force Base soon. We've continue to tackle his bucket list at a rapid pace - it has provided some great moments and memories for our family.

Thank you as always for your continued love and support.  You help us daily, more than you know.
~Allison