Stuck in the Molasses Swamp? Chutes and Ladders? #LCHADadventures

In an effort to help everyone get up to day on things with our Alex I'm posting several blog posts that I have written recently.  I'm not sure why I haven't posted.  I guess I was hoping things would make more since in a day or two.  Well, now I need to post all of these so you can get a better ideal of what has been happening in our work.  So, I'm posting now, but this was written in May 2018...

Recently I have had the words from Isaiah 40 floating in my head.  My daughter needs strength.  Simple things make her weary.  She is weak and needs increased power.  I know we need the hope of the Lord because that will restore her strength (and ours) and I was picturing the day when she will run and walk and not grow tired (admittedly I still see her as a 9 year old doing this).  The weakness and not being able to walk or run have become realities.  While these hard things have become real the words that keep playing over and over are... "those who wait on the Lord..."  wait.  Wait on the Lord!   I realized this ties in with a decent explanation of what has been going on for the past few months and how we have gotten to this point.

Many of you have asked what is happening with Alex.  Glimpses of challenges have made it on social media and the everyday life challenges are evident.  MY challenge has been trying to put all that has been happening into words.

Lately we have felt like we were stuck in the Molasses Swamp!  You remember that place from Candy Land! 

Life is not all bad but it isn't all good either.  Stuck!  Not moving forward.  Uncertain if and when things will move forward... and yet, life is continuing to move forward all around us. 

For a few years it has seemed like we were circling the swamp.  We weren't making it far fast but life with Alex and LCHAD were still plodding forward.  She made it through middle school.  It wasn't pretty but it seemed as though she was still in the game.  Since the beginning of 2018 life with LCHAD seems to have shifted gears and has gotten stuck.  It has taken a few months for us to even figure out what is happening.  When we think we have a handle on things the picture shifts.

Alex's mobility issues (walking around) took a dramatic turn during the Christmas holidays.  Going up and down the stairs at home became more labored (and avoided when possible).  She couldn't stand for very long at all.

Since January Alex has been walking with assistance (walkers, hand rails).  As the weeks and months have gone by she continues to lose muscular functions.  Zippy (her yellow scooter) helps her get most places. 

As I write this I'm realizing that in the last few weeks I'm wondering if we have shifted from the Molasses Swamp to Chutes and Ladders.  It seems like some of our challenges have been a fast slide down but we are seeing opportunity for work ahead to help our girl.

Alex's ability to walk is basically gone. That is a tough thing to say, but it is true.  The good news is there is hope.  ALWAYS hope in the Lord and that is the source of our strength.  We also have hope that the crazy, unknown, unpredictable path of the odd LCHAD means that there is evidence that these "symptoms" can change.  They have changed for some.  It doesn't mean we know what is happening or what will happen.  It does mean that just like when she was little we could never have imagined the full and rich childhood this girl would lead we most-likely can't imagine what will come in her future.

So in the mean time we wait...  on the Lord.  We wait on His timing.  We work hard to do what we know and can and we wait.  Our family is blessed with an amazing support system.  We have a vibrant, involved and active family that care deeply for us.  We have rich and deep relationships with our close friends (many life-long) and church family that hold us up and encourage us.  We belong to a supportive and close-knit community that are stepping into our journey to find ways to encourage and support us.

Now you have a glimpse into our current episode of "Life with LCHAD".  God is walking with us.  YOU are praying for us.  Our medical team is working hard to help us.  All around us we have the most beautiful treasures cheering us on... you!  Thank you!

May 2018

Hope from New Hope Rd. #LCHADadventures

"Zippy" helps Alex enjoy the backyard with Spice.

Thanks to YOU our amazing prayer warrior support team.  We treasure your prayer support on behalf of Alex and our family as she continues to fight to thrive as a patient with LCHAD.

Hebrews 11:1 says "now faith is confidence in what we hope for and assurance about what we do not see.".  This is a fitting theme for today.

After months of watching Alex experience significant mobility decline the past two weeks her function losses have come rather fast and unexpected.

Today we met with her metabolic team to try to understand this journey and brainstorm ways to give her the energy her body needs.

The reality is this LCHAD journey is unknown and remains a mystery.  While this is hard to process it also presents an opportunity for us to watch God's hand continue to move in our miracle girl!  While hard days are likely ahead and we will have the opportunity to learn how to use various aides to keep her safe and give her improved quality of life we have hope that things could improve for Alex.  The extent and timing is firmly in the Lord's hands.

We are humbled by your care and support.  We likely need more help than we even realize but we are reminded today that we have hope.

As you continue to pray for God's hand to work in the body He created so unique also pray through Romans 15:13 for our family that "the God of hope would fill us with all joy and peace as we trust in him.  That we might overflow with hope by the power of the Holy Spirit".

Early May 2018

Memories And Reality #LCHADadventures

Earlier this week I came face to face with the past.  The heart stopping, hard to breath past.  I went to the same Labor and Delivery unit that Miss Alex was born to welcome a sweet baby into the world.  This was a much sweeter delivery experience than that memorable one more than 13 years ago.  (I won't lie, there were a few moments to pause and remember but not too many.)

The next morning I found out that sweet little one needed some breathing help from the NICU!  The memories flooded in.  Mostly the weight of having to remember to breath.  While I am so thankful that little one is doing great and already getting ready to go home, there were some moments where I had to work hard to get it together to go to my friend (the new mommy).  I knew I had to go because I knew there were no words to describe what she needed.  Just some tears and a hug.  A nod of understanding.

I realized nothing can change what happened all those years ago.  What is amazing is what is happening today!!  Today makes is all worth it.

This evening I was able to take my girls to see Alex's first nurse from this LCHADadventure.

Alex and Nurse Andrea!

I realized something amazing while we were talking.  Those NICU days gave us some much needed skills that would serve us well during this LCHADadventure.  We learned how to communicate with capable doctors and nurses who had no idea how to treat our girl.  We learned how to learn along side them. 

We made every day count.  We had no idea how long we would have our two girls so we made each moment special.  Claire had a great time reminiscing about her memories in the NICU.  She recognized Nurse Andrea.  She asked where the hand wash station was.  We discovered they changed the soap and it doesn't smell the same.  She remembers playing in the waiting room and  realized that she has happy thoughts and feelings while in hospitals.

Nurse Andrea and the sisters (much bigger than those early days)

While yesterday's memories were hard to face, today reminded me that we have come a long way.  God's gracious hand was felt a LOT in those early days.  Today His faithfulness to our little family wraps my heart.

Psalm 21:1-6 says it well....  "The king rejoices in your strength, Lord.  How great is his joy in the victories you give!  You have granted him his heart's desire and have not withheld the request of his lips.  You came to greet him with rich blessings and placed a crown of pure gold on his head.  He asked you for life, and you gave it to him - length of days, for ever and ever.  Through the victories you gave, his glory is great; you have bestowed on him splendor and majesty.  Surely you have granted him unending blessings and made him glad with the joy of your presence."

I can honestly say I never could have imagined this day.  Today I am the mom of two amazing teenage girls.  They are smart, capable young women who love the Lord.  They are loving and kind.  They enjoy the life they are living and are thriving because they are seeking the Lord.

Thank you Nurse Andrea and the NICU staff for setting us off on our LCHAD journey well!

Alex and Nurse Andrea

Dad and Claire scrubbing in!

Big Sis Claire hanging out with Little Sis

Leap Day.... The Face of a Rare Disease #LCHADadventure #rarediseaseday

Leap Day seems to mean a lot of different things these days.  Today my girl asked to get a favorite sweet treat in honor of Rare Disease Awareness Day!!   I love the way she takes on the reality of LCHAD with amazing heart and a big smile.

Can you see it?  This is the face of a rare disease.  She is smart, funny, goofy, and has a mighty powerful sweet tooth.

We spend most of our time working hard for Alex to lead the normal life of a 13 year old girl.  She is also learning to deal with the reality of living every day with a rare disease.

She is learning that the medical professionals she relies on often need us to explain the best treatment plan.  She is learning that no one else will understand what it feels like to walk a day I her body.  She is learning what her limitations are and what her opportunities will be.

Alex's LCHADadventure is a unique path that our family has been on for 13 years.  We are blessed beyond measure to learn a little more each day about the rare disease LCHAD.

So today we celebrate Rare Disease Awareness with a sweet treat and our own personal rare disease hero.  Today's LCHADadventure is a little sweeter because of my girl and her smile.

Update on Miss Alex (another step) #31Days #1stepatatime #LCHADadventures

First, THANK  YOU to all our dear friends and family for your kind words, love, and support.  Many of you have been with us on this journey for years and some of you are new.  You are all so important to our family.  THANK you.  We know that your prayer support and your personal encouragement are keeping us fueled up and going forward.

I want to take a moment and update you on Alex and what has been happening for the past six months.

In April we broke our almost two and a half year streak of hospital-free life for Alex.  At the time the hospitalization didn't make much sense.  Three weeks later we admitted her again.  Three weeks later the same situation developed but we were able to stay out of the hospital!  Then three weeks later it all started again...  at this point we were identifying different parts of a pattern.  Then three weeks later we were at it again!

 

So, what is happening, you ask?  It appears that my 13 year old LCHAD girl is living up to her age.  She is in the adolescent stage and is rapidly growing!  (Seriously, you should she her growth chart and all the clothes that I have pulled out of her closet!)

It appears that we are in a stage of high growth and probably lots of fun, fun hormones.  One of these alone would probably be enough to cause trouble with LCHAD but the combination - WOW!

Every 21 days she wakes up and it's like only half of her is working.  Her eyes are dim, her muscles hurt, sometimes her speech is slurred.  She even struggles with her mental clarity.  These "episodes" have lasted a full seven days (with or without the iv) and then she returns to normal for two weeks.  Then it all starts again!  This is a difficult thing to watch.  She is trying to be her normal positive self but is struggling at times.  We are trying to continue to go about life normally around her.  It is hard but we keep going. 

As the summer continued with the same patterns we knew we would need to figure out how to deal with school.  Our AMAZING school worked diligently to find a plan so Alex would be able to keep some level of her normal life as her body would allow.  We have always known our school was special.  It continues to provide the most normal life for her that she can ask for and they are working hard to keep her safe as well as teach her Algebra!

Through all of this it is clear that Alex has AMAZING friends.  They have entertained her at the hospital, "Alex sat" her at different events when she just wasn't herself but we drug her there anyway, they have sent messages and cards, they have brought LOTS of slushies.  They MISS her when she isn't at the usual events.  They have been amazing.  My daughter is blessed in abundance with friends.

I keep pointing out to her that while things are not easy her body is really trying to grow up normally.  Her labs show NO problems.  She eats well and has been great at working at all our nutritional attempts to manage this.  Most adults would not have been as cooperative.  It is hard to process that God continues to answer our prayers for her to grow and develop.  Her body seems to be needing help along the way.

Changes ahead....  (we hope)

She was able to start school with two strong weeks....  THEN a three week long period of time where she could not snap out of it.  This time the iv did the trick.

Now what???  Well we have a new idea.  We are in uncharted waters and has reinforced the idea that we need to keep moving forward just one step at a time.


   

Paddling Upstream #31Days #1stepatatime #LCHADadventures

So, this raising a kid with LCHAD is tough.  There are no models to follow.  There is no research to help.  There simply aren't kids like her.

Next add in puberty!  WHEW!  I knew it might be tough but suddenly we have found ourselves in unexplored territory and I feel like I am paddling upstream with out a paddle.

I know that I don't have answers.  I never have.  It just seems that the stakes are higher because we have helped her to believe that she is mostly "normal".  Now that she is not feeling "normal" at all and just wants to be normal (6 months later) and we seem no closer to having answers for her I am at a loss.  Sometimes I have to fight the feeling that I have mislead her.  Maybe I shouldn't have helped to live her life to the fullest (seriously, if you have ever met her you would know that she is taking that charge all on her own, we just hope we are guiding her well).

I fight the fear that soon our time with her could be over.  I know there are no guarantees.  There never were.  But it is strange for things to be going along well.  I mean WELL.  Like the best ever in her life for the longest time in her life and suddenly to change it all in one morning.

I like rules.  We had gotten good at living by the rules we had found helpful for so long.  The rules seem to have changed (or are changing) and no one told us where to find out what the new ones are.  It is unsettling.

I'm the mom.  I'm suppose to take care of it all.  I'm suppose to help her.  I'm suppose to keep big sister's life moving along well.  I'm suppose to help our family thrive.  I'm suppose to help everyone else know how to help her.

It's hard.  Very hard.  I fight crying so I won't "loose control" and not be ready for what is next.  I guess I have always worried that once I start I won't be able to stop.  I also don't want the rest of our family and friends "worrying" too much.  I don't want my doubts and fears to leak out onto them.  I want them to enjoy her life and theirs to the fullest.  One day I tried to workout.  Things were bad and I knew it but I was trying to do the right thing and workout anyway.  I LOST it.  You know, the ugly cry kind.  I attempted to join the group and just keep going.  Well I couldn't continue and it was yoga, my least disliked form of exercise (seriously, I like yoga day.  I needed yoga day).

I have days where I get all the basics done (dishes, laundry, food for her, and even the family) with the hopes of really getting on top of things.  Then I have days were I just collapse (yep, I've skipped working out a few times too).

The truth is....  it is stressful.  I don't always know how to cope.  Yes I have a wonderful husband who does try.  Sadly this is a mom-heavy gig.  I can bounce ideas off of him and ask his opinion but he is operating with less information than I do and he's off working hard just to make sure our family can pay for all the needs and have health insurance.  I also have a great family and friend support base.  It is hard to talk to them sometimes because there is less info and more worry to pass along than anything.  I don't have answers.

I guess that's it isn't it.  I don't have answers.  For her, for the doctors, for the sweet people in our lives that want to know how to help.

YES, some things are easier.  Nothing can compare to the hard times of those early days with a toddler and a preschooler in the hospital.  My girl (a teenager now) is amazingly good at entertaining herself in the hospital.  Technology helps.  When we can't find a dvd to watch or a channel with anything on we find something on Netflix.  She can text and call friends.  She can play video games on her phone or Kindle.   She can manage just fine while I take a shower or run to grab some food from downstairs.  There are less fears of the everyday things in the hospital.  She knows as much or more than the staff about how things should be done and who should do them.

The problem is HER questions are growing up too.  She doesn't understand (what 13-year-old does) and to add LCHAD on top where there are no answers is hard.

I would love to tell you I was good at telling her how to hold on to the Lord in all the right ways.  I'm not.  Often I'm too tired or too numb to say anything.  I often answer with the same truth that I have always answered with but she isn't probably old enough to really, truly understand.  I'm 45 and I'm not sure I am.  It also seems like there is a lot at stake.  This is a crucial time in her growing up.  I want to keep the amazing, spunky, fire-ball that has always taken her life by storm and help her keep her positive attitude in tact for the long haul.

There are no answers and no guarantees.

I keep saying over and over.... "just take today one step at a time".   Looking back it is hard to imagine that we have come so far.  I do wonder what is ahead....

1 Step at A Time #31Days

"Step by step you lead me, and I will follow you all of my days..."  Rich Mullins

I hear this song over and over again in my head.  I have always loved this song.  It has a great sound.  It reminds me that I have a different perspective than God and His will always lead me in the right direction.

Lately I have said, "one step at a time" more times than I can count.  I use it to communicate how I am doing.  I remind myself that that is ALL I can do, it doesn't help much to get farther than that.  I encourage my daughters to take the tough things happening in their lives "one step at a time."

This seems to be a significant theme for myself and my family these days.

What's happening you ask?  Well a LOT.  The best part is that I continue to be the mom of two amazing TEENAGE girls.  They are great.  They are amazing.  They have challenges.  They have victories.  I am their mom and I am carefully choosing the words I give them to walk each day. 

During the next 31 days I am going to take the challenge to write about taking life "1 Step At A Time".  I will update you on the latest and greatest (hang on things have been intense).  I will share some of the amazing steps we have taken over the past year (some really neat things have happened).  I want to be open and honest so you will have insight into the real life challenge we face and the amazing steps we are taking.

This is the third year I am attempting to participate in the 31 Day Writing Challenge.  I hope you enjoy these steps we are about to start taking.