WARRIORS

I was running errands the other day and the song "Warriors" by the band Imagine Dragons came on. This song has been used at  sporting events and in video games to elevate the level of intensity, fire and passion that people hold. It is a heavier rock song but the lyrics really stuck with me. Here is a link to the song:www.youtube.com/watch?v=VP9I8ZUwKpc 

As a child you would wait
And watch from far away.
But you always knew that you'd be the one that work while they all play

In youth, you'd lay awake at night and scheme
Of all the things that you would change, but it was just a dream!

Here we are, don't turn away now (don't turn away)
WE are the warriors that built this town.
Here we are, don't turn away now (don't turn away)
We are the warriors that built this town.
From Dust.

Will come, when you'll have to rise
Above the best, improve yourself
Your spirit never dies
Farewell, I've gone, to take my throne
Above, don't weep for me
Cause this will be the labor of my love (my love)

Here we are, don't turn away now (don't turn away)
WE are the warriors that built this town.
Here we are, don't turn away now (don't turn away)
We are the warriors that built this town.
From Dust.

These Krabbe kids are the WARRIORS...warriors battling to get through the day...to see...to hear...to experience life...to breathe.  They battle daily. Their parents are warriors for calling on insurance companies to get them the gear they need, taking them to doctor and specialist appointments to find answers, ER visits, therapies, etc to get them the care they need to thrive...or really...to survive. The community around them is created...with prayer, love and strength. They are warriors for advocating for the next generation of kids who hopefully may never have to experience this horrific disease because it is caught early enough with newborn screening. These Krabbe kids are warriors for leaving a legacy for other children...creating change within their states...their communities - so that one day they can help others survive.

...but it doesn't make the day to day easy.

I can't talk on behalf of the parents who have lost their children to this horrific disease but I can attest to living through the daily emotions and routines or surprises:

• Not wanting to put my child down because I don't know how long I'll actually get to hold him.  
• Running to his aide when he is choking on his own secretions and gasping for air (Max has been gasping lately when he's upset). 
• Keeping a journal of medicines to make sure you don't overlap and give him too many...which could lead to organ failure. 
• Figuring out how much to feed him...how to keep him hydrated...how to adjust if he isn't tolerating it. 
• Counting his diapers to make sure he's functioning properly.  
• Calling on home equipment companies to try and get the equipment he needs (going on 6 months)
• Forwarding medical necessity letters and denial letters to get the coverage needed with insurance
• Questioning everything - why hasn't this been done, how do we get approval, who can I call, how much longer should we wait?
• Learning new equipment and medical terminology (I feel like I can add a few things to my resume)
• Daily appointments, therapy sessions, nursing care
• Keeping his stats to make sure he's hitting his baseline
• Trying to figure out if his baseline still exists or if the disease is progressing

Then trying to achieve the "normal things"

• Cooking dinner 
• Trying to keep up with the housework 
• Entertaining a 3 year old
• Running errands, etc. 

I wouldn't trade my life for anything...but some days by the time the kids go to bed...I'm ready to end my day as well...just to hear Max wailing in pain with another leg spasm. My husband is the one doing all of this at home during the day while I work - he is a rockstar! It isn't easy. I come home and we pass the baton... and he goes to work. We have such opposite schedules to provide the best we can for our kids...

It's hard to watch your child suffer.  Luckily Max doesn't every day yet...but when he is and you try everything you can think of to help him but it doesn't work - you feel helpless.  I posted recently that I feel like we "wing it" often. A lot of doctors and nurses have no idea what to expect, how to help...but we have a few who have been blessings.  We have still been blessed in the fact that he doesn't need oxygen full time and some other things but I always question if I'm missing something....just by virtue of not knowing or not knowing what to even ask. With this disease...things can turn quickly...a lot of his Krabbe friends and special needs friends have recently been battling... they have been in and out of hospitals ...they are fine one minute and battling the next.  While we get to experience fun things with bucket lists and family get-togethers, this disease also becomes very real...very quickly. Plans change, things are cancelled.  My friends know that my new clause is - "we will be there as long as Max is doing ok"...and I appreciate their flexibility and accepting of it all.  It is scary...the unknown...the "what's ahead"... is scary.  We trust we are moving forward the best we know how. We live in the moment with the wisdom and trust that we are doing the best we can...We have to.

Lately, it has been a bit frustrating when we have been advocating and telling people to test their children or themselves for Krabbe and when they try to do so...they get the run around or they get uneducated responses... "It is so rare your child will never get this"... "It doesn't run in your family so why are you testing?" ... "Sorry, we can't help you - we don't know what that is". Luckily, in these instances, these people have pursued and haven't given up. If you do want to test yourself or a child who was born - you can get a kit off of the Hunter's Hope website - it says it is for newborns, but it should work for adults as well.  It will at least show if you have carrier status...then you can get into further genetic testing to confirm if you actually have the disease or not.  I think this is the best place to start.

I sincerely hope that  our state decides to put some funding toward Newborn Screening...they may actually save someone's life.  I hope they also educate the medical field a bit by adding it to the test.  You can't put a price on life but our state is debating that still.

There are many Krabbe Warriors who have made a difference in many states which are including Krabbe in their newborn screening process.  There are many warriors who continue to battle to get it added.

Max will continue to be a warrior. He fights every day.  Josiah and I will continue to advocate and push, and educate...we can't give up - we won't give up. I continue to wear my various "Warrior Shirts" on the weekends representing the Krabbe kids across the country who fight daily and trying to bring attention to this disease.  I'm sure you have seen a few of these shirts on Max's page.  We'll continue to learn and "wing it" the best we know how.  The love we have for our children is unmatched.

We continue to uplift and pray for these families who continue to face their own daily challenges.  We appreciate all of the warriors around us who send their daily love, prayers, words of encouragement, gifts and wonderful spirit.  We couldn't do this without you, and we are grateful to have you by our side as we continue on this journey.

~ Allison