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Friday, June 23, 2017

A Letter to Max - Our First Year Without You

Dear Max,

I can't believe it has been a whole year without you. A year without seeing you, giving you hugs and kisses, telling you secrets and just holding you. Some days it feels like we've been apart for so much longer...other days it feels like it all just happened.  You took a piece of my heart with you when you left, and I'm forever changed.

It has been hard navigating life without you here.  We miss you. We miss planning events and outings with you. We miss creating memories with you here. Every time we go on a family trip or adventure, we try to have fun and make memories but it just isn't the same without you, and it always feels like someone is missing.   We miss playing with you and reading to you and singing to you. We miss dancing with you.  We miss waking up to your wide eyes and messy hair and we miss kissing you goodnight and tucking you in.  We miss talking about you. We still do...we just have to lean on our past memories together - it is hard not being able to share anything new. We miss YOU being here every second of every day.

BUT we don't miss Krabbe...your suffering, questioning if what we were doing was correct, the fear of sleeping through an alarm or causing you any pain. I'm sorry you had to endure it all. You were extremely brave. You taught us a lot about priorities, fighting for what is right, living in the moment, unconditional love and teamwork. We pushed for answers, fought with insurance companies, tried as hard as we could to expedite everything you needed - even when companies were taking their time or not meeting your needs quickly enough. You introduced us to some amazing people and families who we may never have met. You taught us how fragile life can be, but how much can be accomplished in a short amount of time with focus and drive. You gave us a community who still checks on us, writes us, cheers us on, sends us gifts, and supports us. We became a stronger family becuase of you. We individually became better because of you. But we still have a lot of work to do to make the pain you endured...the long days and nights, the uncomfortable times mean something. You've all made us stronger and better, but I'm sorry you had to suffer through it. It isn't fair that you had to endure all of it. It isn't fair that our state chose not to test. It isn't fair that if we had lived in New York or Missouri at the time, that we may still have you. It isn't fair that we didn't even know that Krabbe existed and didn't know what questions to ask. It wasn't fair that the specialists we trusted told us there was no hope and when we did find a doctor who gave us some - we were late in the process. But life works in mysterious ways and through all of the "unfair" moments, you provided us with a lot of insight about ourselves and a lot of insight on how we can help others. You are a hero.

Emma talks about you a lot. She says you are still with her, so thank you for finding a way to keep your memory alive to her. Thank you for helping her not to forget your incredible bond.  She still wants you here. She tells me that she hopes she has dreams with you in them because she is concerned that she hasn't had many. She asked me how long you have been gone. She's told me it isn't fair that you get to be in heaven and we have to stay here. She says it isn't fair that she doesn't have a brother she can play with. She says she can't remember things about you and bursts into tears. She wishes you were still here to play but she's glad that you don't hurt anymore. It's hard to comfort her becuase it breaks me too in those moments, but please keep sending her messages and ways that she will remember you. She needs to remember you.

We celebrated your third birthday this year by taking Emma to the zoo and we sent you some balloons and had a cake in your memory.  We gifted ice cream to a random family to share the joy that you brought to us with them. Emma still says you are two - you will probably always be 2 to her.

You continue to make a difference and your legacy is living on through an amazing art exhibit focused on bringing awareness to rare diseases. It is called Beyond the Diagnosis. You are the only child in the exhibit with Krabbe. The painting was at the FDA building this past spring and will be influential at so many other important locations (especially this fall). It is beautiful and my wish is that we get to see it in person some day. It perfectly captures your spirit beyond Krabbe, and it is bringing awareness to the disease to hopefully help future children.  You've also inspired others to talk about rare. Two people we know, have given presentations at their schools on Krabbe, but more importantly on you...that has resulted in making future nurses and doctors aware of the disease. Getting them to look beyond the disease, and show the impact on a family and on a child. People still wear your wristbands and shirts in hopes that others will ask questions and we can start conversations (and share everything about you). We still have a lot of work to do at the local level but we'll keep moving forward and keep your memory alive.

Dad still sees daily butterflies on the tennis court or driving places. He thinks of you often but he's quiet about it. I know he still hurts a lot. He supports Emma and I and helps us through some tough moments. I still see butterflies but not as often. I wish I saw them more. You seem to speak to me through music and I listen to the speech that I gave at your celebration very often because it reminds me of the moments with you and all of the amazing memories we made together. Please keep finding ways to send us messages - we still need to hear from you.

This first year without you was a tough one. But we somehow got through it. We continue to try our best to move forward with life, find laughter and joy, and we hope you are watching from a distance. We'll forever miss you and will continue to talk about you and share what you offered to us. You taught us how to live - so we'll do our best to keep living until we see you again.

Love you always and forever,
Mom

https://vimeo.com/177200220

Saturday, December 31, 2016

Losing Max...he is forever in our hearts

The beginning of this post was written a few weeks before Max passed away. I felt it necessary to share my thoughts and then update on our current status.

You don't realize how many kids and families go through extra challenges in life until you experience it first hand or have a friend or family member who does.  I'm a part of many special and private Facebook groups that basically are there to support you through the process.  Those who have feeding challenges...those with Krabbe...those with other medically complex issues... There are posts daily about kids making through open heart surgery, struggling for their life who need extra prayers, posts of the success of getting enough calories for the day and of course the posts that I dread each day that I open up social media....the loss of a child.

We haven't been down that road yet but have known a lot of families who we have met through social media who have.  I know it is our future...but I can't fathom how we will get through it.  Max has decided to give us continuous scares the past week and we have come to see that it is disease progression...he is having trouble catching his breath when he gets upset and dips into the 30s...20s or 10 and under with oxygen.  Every time it happens I can't help but think...is this it? Am I ready for this? How will I get through this? What will I tell Emma?  How will we get through our day without our sweet Max? Then in an instant he bounces back and we go on with the day.  He smiles with his eyes...settles down and is fine!

I know I shouldn't even go there in my mind. It is a dark place. But with a terminally ill child...how can you avoid it? Everything is put into perspective again.

UPDATE:

...June 24, 2016 we were woken up about 4 am that Max had stopped breathing and we lost him. He had been struggling for the past month and we were terrified he'd struggle in his last moments. We had a night nurse on her shift and suddenly the pulse ox couldn't find a pulse and she thought the equipment was faulty (which it had been before) but he wasn't breathing. All I remember is  Josiah yelling "what!" over and over...we both ran downstairs and I picked him up, held him and started trying to resuscitate him...but he had left. I continued for 35 minutes until hospice got there and confirmed he had passed. We had decided that if Max had taken a breath we would have rushed him to the hospital. The crazy part of it all was he looked so Calm and so normal...like he was sleeping..he had been struggling the last few weeks and turning purple often. He just looked peaceful. Emma was still sleeping so the mortuary came and got Max and Josiah and I both woke up Emma and told her Max went to heaven. She smiled and said "I'm so happy because now Max can do everything I can do."

We tried to get to the mortuary quickly but I was physically sick. It us amazing how your body responds to deep sorrow and uncontrollable stress and grief. We were able to arrange for Max to donate some nerves and brain tissue to help find a cure. While controversial for some...our whole story we've tried to advocate and help others and I truly hope it helps in a cure.

We had a great celebration service for our little boy...something you should never have to plan...but the amount of support we received for all who came out was so appreciated. We ended the service with a balloon release. Emma picked out a Buzz Light year balloon, I picked lightning McQueen and Josiah superheroes. We each wrote messages and released them to the perfect song...I Lived by One Republic...because Max lived and he helped us live in the moment and do our best to look past this horrible disease.

Each day I miss him. I miss his touch and his noises and his smell. I miss everything but Krabbe... I don't miss his suffering or questioning if what we were doing each day was right. I've continued to do my research to try and get this in front of the right people in Arizona for newborn screening but I'm not getting far. I'm not giving up either.

The best daily reminder from Max are the butterflies. They are all around us and fly in front of us in completely obvious ways...when we are at events or doing things as a family...he lets us know he is around...I truly believe that. We continue to do our best to move forward but some days are better than others. We will always hold Max's memory close. He taught us so much and will be on our hearts forever.  As we enter 2017, I am so sad that I'm entering a year without him. It is scary. We will continue our "firsts" without him here and continue navigating through life the best we know how.

Allison

Tuesday, March 15, 2016

Better Place

Music is something that helps me every day.  While in the hospital with Max, I heard a song from Rachel Platten, "Better Place"...the lyrics are probably about a crush or romance but for me, it expresses how I feel since my children have come into my life. I'm not the best singer but started singing this song to both kids to express how much they mean to me.  It is a better place since they've been in my life, regardless of the struggles and mountains we've faced. I seem to get an expression and reaction from Max each time I sing this to him (audio here https://www.youtube.com/watch?v=50gPTzjhmhA):

I'll tell the world, I'll sing a song
It's a better place since you came along
Since you came along
Your touch is sunlight through the trees
Your kisses are the ocean breeze
Everything's alright when you're with me

And I hold my favorite thing
I hold the love that you bring
But it feels like I've opened my eyes again
And the colors are golden and bright again
There's a song in my heart, I feel like I belong
It's a better place since you came along
It's a better place since you came along

I see the whole world in your eyes
It's like I've known you all my life
We just feel so right
So I pour my heart into your hands
It's like you really understand
You love the way I am

And I hold my favorite thing
I hold the happiness you bring
But it feels like I've opened my eyes again
And the colors are golden and bright again
And the sun paints the skies and the wind sings our song
It's a better place since you came along
It's a better place since you came along

Now I'm alright, now I'm alright
Everything's alright

Cause it feels like I've opened my eyes again
And the colors are golden and bright again
There's a song in my heart, I feel like I belong
It's a better place since you came along
It's a better place since you came along


The month of February was a scary one for us. Just when you think you are doing everything you can to stay out of the hospital and you have all of the equipment needed at home to keep Max comfortable...the unthinkable happens.  Max was rushed to the emergency room on Feb 3rd because he couldn't breathe. His home health nurse saved his life and kept him stable until the paramedics could get there.  We are so grateful she was there that afternoon. Although x-rays never showed that the pneumonia was completely gone, clinically he was doing better and had slowly been able to do more and didn't seem to be in as much pain. We thought we were on the right track.

When I got the emergency call, I was at work and ran out of the office and sped to the hospital. Once at the hospital, Max was put on a ventilator. That was the scariest decision to have ever made - although there wasn't much choice for him.  We weren't sure if he'd ever come off when we made the choice to put him on it. The ER staff was amazing - told us what was going on and what was happening. I had held it together until we made the choice to put him on the vent...in my mind I wasn't ready to lose him and to have to make a choice to keep him on or take him off in my mind was too much. Seeing his lifeless little body on the table was terrifying and I lost it and had to sit down because I thought I was going to pass out - it caught up with me. How did this happen so quickly? It turned out that Max had both bacterial pneumonia AND RSV (which can be a cold to most people but in small children, it can take their life - even kids without Krabbe).

The days to follow were very up and down. Some days he was doing great - other days they couldn't turn the ventilator up much more without harming his lungs. He went into the hospital as a one year old and came out a 2 year old. On his birthday, he had a good day. His stats were good. He got to meet Ironman and we had a small family party celebrating Max. We decorated his room in a superhero theme and everyone who came into his room smiled.  The Monday after his birthday, we didn't know if he'd make it through the night the way the doctor was talking. Somehow this little superhero decided that it wasn't his time and he fought to a point where they thought they could take him of the ventilator. They told us the vent wasn't doing much so they thought they'd try to take him off.  That first 24 hours were very up and down.  Everyone would come racing into his room because his stats would fall so low and then slowly his numbers would return to normal slowly on his own. Since we had been in the hospital, we hadn't had the opportunity to hold Max because there were so many wires and tubes and lines connected to him. It had been a rough night after taking him off of the ventilator and the doctor that morning during rounds asked if we had held him yet - I told him I wanted to. I held Max for 3-4 hours and then Josiah got to do the same.  You could see him relax...his numbers stabilized...the doctor came in and looked at both of us..."I can do a lot of things medically to help him...but I can't do that. Good job, Mom and Dad." Tears filled my eyes.

It took another 4-5 days until Max was stable enough to go home. The doctor told us that for most kids, they wouldn't be released because he was still on oxygen and other things...but because of his condition and because we basically have a small hospital of equipment at home, we could take him home if we were comfortable to do so. I have to be honest - I was nervous. I didn't want this to happen again but I was so grateful to all be under the same roof again.  No more trips back and forth from the hospital...no more trying to find out who to keep Emma if both of us needed to be at the hospital.  No more worrying from home when it was my turn to be home and Josiah was at the hospital. He did great and slowly we got back into a routine and we were happy to all be home.

In the weeks to follow, Max was assigned a local pulmonologist who has given us a game plan of what to do when he is well, getting sick and sick...so his lungs stay open and clear. It has worked well...I found myself getting the flu shortly after being home - my body shut down with little sleep and finally just being able to be home. Max was starting to get junky again, probably because of my illness - but the treatments helped tremendously and he seems to be back on track.

We are back to our "normal" which to most people is anything but normal. We are grateful to have more time on Earth with our son. It was an emotional rollercoaster but we wanted to thank all of the most amazing nurses at Banner Thunderbird and his doctors in the ICU.  Everyone took care of Max and us.  They helped us all through tough and weak moments but we were able to joke and laugh during the good moments with them.  Thanks to all of our family and friends who helped with Emma, visited the hospital, sent us care packages, sent Max birthday gifts and sent messages, prayers and love.  With such an amazing amount of love surrounding our family - we are able to get through the hard times and come out stronger.  Thank you for your support.  There are never enough words to express our gratitude.

We are looking forward to taking Max out again soon and celebrating each day as a complete family. We are in a "Better Place" and hope to stay here for awhile.

~Allison

Wednesday, January 20, 2016

Diagnosis Day

Shortly after diagnosis
Last night a few people sent me messages and the Krabbe community was buzzing on social media about a child being diagnosed with Krabbe on the show Chicago Med.  I have never personally watched the show, but I was curious how it would be portrayed so I checked the timing and recorded the show. After the kids were in bed, I asked Josiah if he would watch it with me. I had mixed feelings myself about watching it and I could tell he did as well.  But we both sat down and watched it together just to see how it was portrayed.

Overall the portrayal of the disease and treatment options was correct.  We are glad that the awareness of the disease was featured on a popular national show. It was an episode that pulled at the heartstrings...it is our reality in a lot of ways. There were some unrealistic things...timing to get the test results back for Krabbe in the show and being diagnosed so quickly is rare...it takes weeks. The child was a little older than the more common versions of the disease but it isn't unheard of and can happen with late onset. Even having a doctor who knows to test for Krabbe is so rare... That would have been amazing in the real world...so many kids go misdiagnosed for so long (but again it is only a 60 minute show).  The hardest part for the two of us was the scene where the doctor had to tell the parents that their child was terminally ill and there was no treatment unless diagnosed when there were no symptoms present. It brought back diagnosis day....we both remember it vividly.

Max with Josiah - starting to struggle holding his
 head and couldn't sit on his own anymore.
We all went through a month of hospital visits, tests and doctor's appointments to try and figure out what was wrong. December 1st, 2014, we were in the lobby of the neurologist's office for an appointment to talk about additional procedures we could do to try to figure out his diagnosis.  We saw so many children and families with visible disabilities...oxygen machines...machines and monitors I'd never seen before.  Here we had Max in a baby carrier...he was fussy but relatively normal looking on the outside.  He was starting to lose the ability to hold his head up strongly and needed to lean on us.  He could sit up on his own but leaned very far forward and recently was falling over all together. We both looked at each other without words but both asking each other with a simple look...what is wrong with our child...is this our future....will this be Max?  Little did we know he was struggling on the inside. We finally got called back into the room and both were waiting anxiously for the neurologist to enter the room. We were both telling Max how proud we were of him and how all of this was a speed bump and he'd prove the doctor's wrong and get healthy soon so we could get back to our normal routines.  Then it happened.....in walked the main neurologist and her assistant.  In walked Max's genetics doctor...we had been waiting for results from his bloodwork taken 2-3 weeks prior....but why was he here with the other doctors? They work at the same hospital...but they aren't in the same office...and it wasn't planned that he be included in this appointment...

"We got the results of the bloodwork," the genetics doctor told us.  "It is confirmed to be a leukodystrophy which is what we were testing for."  He had told me at the initial appointment not to google leukodystrophies...just wait until we determined if we were heading down that road...but I needed to know what we were looking at...and what we were facing.  "Max has a leukodystrophy called Krabbe disease."....my heart sank....I had read about so many different leukodystrophies but this one stood out to me as the one I was hoping he didn't have.

"Is that the one the football player's son had...Jim Kelly's son?" I asked.  I had researched a bit about it online.

Almost instantly I received a head nod..."Yes, " he said. I knew that it meant no cure. I knew that it meant short life.  Everyone told me the odds were in our favor and the blood work was precautionary. "There unfortunately is no treatment or cure for the disease."  Tears were welling up in Josiah's eyes - I rarely see him cry.  I on the other hand was in such shock to the point that there weren't any tears that I could release..fight or flight mode...just trying to get information and stay focused enough that I could get the info to help Max.

"Was there anything I did wrong in my pregnancy with him?" I asked.

"No it is completely genetic and nothing you could have done.  You both have the gene that creates Krabbe.  You both have to give that gene to your son.  There is a 1 in 4 chance for each of your children...a chance that neither of you pass the gene, a chance that one of you passes the gene and the other doesn't and vice versa and a chance where you both pass the gene like in Max's case, " he said.

"But it has never run in our families.  We've had no prior knowledge of this," I said.

"You both have to carry the gene for it to even be possible which is very rare," he told us.

We asked if there were treatments, things we can do to make him comfortable.  He told us he'd research it because he didn't get many Krabbe patients and that we should schedule for a follow-up neurology appointment in 2 months...that was it...no other direction.

Max sitting with his friend Abby 1 1/2 months
before diagnosis (end of Oct)
"Do you have any questions?" he asked.  "We are really sorry to have to break this news to you."

We shook our heads no and thanked the doctors for their time.

We both left numb.  We walked through the waiting room and everyone was going about their business...making appointments, answering questions, filling out paperwork, waiting for their turn...yet to us...the world stopped . Our son had just been labelled as terminally ill. We couldn't wrap our heads around it. There is nothing we can do. Where do we go from here? How can the world continue moving?  How can we go on with our daily lives?

We got into the elevator with another person and I started getting tears in my eyes.  We had the long walk back through the hospital to our car.  Somehow we made it without falling over.

We didn't say much - but we both were devastated, shocked and scared.  On the car ride on the way home we vowed once again to stick together and support each other (it was the only way we could get through this) and do everything we can for Max. We called our parents and told them that we needed to meet with them immediately in person. And we gave them the news.  There was a lot of emotion over the course of the next few weeks.

I started doing searches on the internet for any glimmer of hope.  We reached out to Hunter's Hope (The Kelly's Foundation) and were given some direction and support.  They introduced us to a group of families on Facebook who ask questions, vent and support one another. I value this group so much.  We are family by genes.  One of the first people I connected with was Hannah's mom (PA). She suggested us getting to PA immediately to see the Krabbe specialist and find some guidance and help.  Finally...support and direction.

Opening gifts for his first Christmas (shortly after diagnosis)
Shortly after - we consciously made the decision that we needed to stop grieving and rather enjoy Max while he is here on Earth with us. There will be plenty of time to grieve in the future but we wanted to provide him with experiences and moments that he may not get to experience. We've accomplished so much since his diagnosis - more than I've done in my lifetime.  Some of the opportunities presented and the people that we have connected with have truly been amazing and such blessings to us.

We continue to enjoy our son (and our daughter) every day.  Don't get me wrong - some days I don't even want to get out of bed because I go back to diagnosis day. But he's here...he's still physically here AND he is amazing.  I'm going to cherish him for as long as I can.

Every day with him is a gift and I don't want to waste it.


Thursday, October 22, 2015

Tears, Courage and Rainbows

My heart is aching.  My emotions are high.

Max had a really good weekend and a good Monday and Tuesday.  I typically get up each morning before everyone else and head to work. I posted Wednesday morning without looking through my Facebook newsfeed.  I noted that Max had been having good days.  I got a call about 10:30 - he's struggling.  Our nurse noticed that Max's O2 levels were dropping into the 70s and staying there - his normal is low 90s and dips into the 80s but goes back up.  She administered some O2 and he got back to his baseline and had a good night.  We are watching him to make sure nothing is going on.  I received a note about lunch time yesterday that mentioned what a sad day was for the Krabbe community. We lost two beautiful kids - Addilyn and Nicholas - to this horrible disease. I hadn't seen this - it was a shock...  I closed my office door and cried.  I just couldn't hold back the tears. My heart is aching for their families, and it hurts even more to know what other parents within the community have already gone through and still do but also....what is in our future.  With every loss...I get a flashback to diagnosis day - there is nothing we can do.  Take him home and keep him comfortable. I don't know how we are going to do this...how I will have the strength to continue to move ahead.  I don't know - but I also know I'm not the first to go through it.  Others have survived and live each day the best they know how. I admire their strength, their courage and their grace.  I continue to try to live in the present the best I know how.  But it is easier said than done.

This is not the first time that Max has been having good days and then struggles when we find that another Krabbe child passes -  there is a significant change.  With Hannah, Anna, Parker, Lauren, Addilyn, Nicholas, Maximus...and others. It is as if he can sense it.  Maybe I'm reading too much into it, but it has been consistent.  I think it hurts a piece of him too.  I think he can sense it.

I got it together after crying in my office and went through the rest of my day.  We are having celebrations, games and meetings at work this week.  I hope I played it off and no one recognized my sorrow - I try my best not to bring it with me.  I got into my car on my way home and sobbed.  It was a gloomy day with lots of storms.  I played sappy songs to try and get it out of my system before I got home with my kids. I try to be brave for them and try to carry a positive presence for them...or they will know something is up.  Something that is greater than they can handle.

I have a good 45 min to 1 hour on my commute home, and I was about 15 min from home when the sky parted and the most beautiful rainbow appeared.  There were gray clouds all around and a patch of blue sky with the rainbow in the middle - stretching above the clouds.  It was a sign to me - it's going to be ok.  You have the courage to get through this...to advocate...to take care of your kids...your family...to have strength for others who need it. You will have the courage to get through all of this and to carry on. Then a second rainbow appeared - it was the most vivid rainbow I have ever seen in my life and it stayed with me until I got home - then slowly disappeared.

I don't know what the signs mean or if I am superficial.  But I truly in my heart believe it was a sign - that those who we have lost are ok.  That I'm going to be ok.  That Max, Emma and Josiah will be ok. It certainly doesn't make anything easier or better here on Earth but a hope.

I got home and clung to my kids.  I hugged Max and played with he and Emma. Through all of this, I'm so blessed - to be with an amazing husband who has been through a lot with me already, let alone this.  To my two beautiful kids who I wouldn't trade for anything.  There is so much love and support that continues to surround us.  Friends, family, co-workers and complete strangers who are helping.

But the Krabbe Families all over the world who we have connected with... who continue to push and advocate - no matter how much pain they re-live, they push on to help future kids and families - they are heroes.  They are there to support all of us who are still going through the fight with our children and they stand together and hold strong for those who have lost their children. They are so open to helping others. The strength, courage and grace that is shared is remarkable. We are all family by genes - I would be lost without them and their support and openness. They inspire me to live each day to the fullest and continue to fight for Max. And fight for future kids. Thank you.  I can't always express how much it means - but it means a lot.

I have found that I have the courage to move forward and to live in the moment with my family and friends.  Each and every day I have with everyone is a gift. Each and every day I have with Max is a gift. There is no promise of tomorrow.  But I've found the courage to live for today.


Allison

Monday, August 3, 2015

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 

Wednesday, June 24, 2015

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