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.