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.

Days 24, 25 & 26 - Changing Course #31Days

Have you figured out that my life isn't quite as simple as maybe I want it to be?  Don't get me wrong.  I LOVE my life.  It's also true that I often fight the feeling that I should be doing more.

Well, I LOVE being a mom.  I have loved being a mom and couldn't imagine a better way to invest my time.  Since that fall 16 years ago when I held that little girl I have been on a mission.....  invest all I am into this little girl so that she can be all she can.

Of course with the addition of Miss Alex that plan seems to have taken off in a new direction.  I am blessed because no matter the crazy direction this path of motherhood has taken I am still a mom investing my whole self into these two girls.  It is an honor every day!

So, what is the change?  Well my life isn't so simple.  I am the mom of a medically fragile child.  Tomorrow Miss Alex and I are headed out to a new and exciting adventure.  What you ask?  Well, wait and see.  I'll try to keep you informed and up to date but the truth is my writing adventure of My Simple Life will not hold exactly true to the title.  We will embark on an adventure that LCHAD is taking us on.  I expect good things.  I also expect to learn a LOT.  I am excited about sharing a bit of our not so simple adventure as we finish out this month.

Days 22 & 23 - Available and Recharge #31Days

Lately I have noticed that my "simple" life that may not seem very big or important has allowed me to be available.  What a joy.

I have been busy and available to help out my daughter's band with the busy contest season this October.  One of the teenage boys told me I was like his school mom.  I took that as a great compliment.

I have been tired and busy.  I have double checked emails and made sure details have been taken care of.  I have missed a few details and been encouraged by the many other parents who volunteer and take care of details too!

I was also available to help with my parents family busy.  This of course followed a busy band parent day.  While I was tired I realized that I was available.  It was good.  You see my brother and I have always been in charge of the new things we have had to make or create for the balloon company.  My brother really didn't need me.  He had things well planned but he wanted my assistance in case we had to create a new solution to an unexpected item.

Today my schedule was surprisingly open.  I must admit my busy schedule caught up to me and I could no longer think about all the things I needed to take care of.  I took a nap.  It wasn't too long but it was deep and hard.  My alarm got me moving to the essential list of things to do today.

I'm glad I can that I was available and that I took a bit of time to recharge.

Day 21 - A Simple Schedule #31Days

I love to think I am a free spirit but the truth is I thrive with a schedule.  Even a loose schedule with holes in it.  Routine works for me.  This summer I kept my outdoor plants alive because I worked watering them into my daily schedule.  It worked.  They are still alive (mostly) and it is half way through October.  This is quite a feat with Texas heat.

Today I moved through my schedule.  There was structure.  There was also room.  I liked my day.  I got things done.  I added a few items and even took a few minutes to relax.  Because there were several things "scheduled" I kept my expectations low and didn't try to accomplish major projects.  Today's simple life felt successful.  

I have often found myself forcing so many chores and activities into my expectations that I have felt let down at the end of the day.  I am glad to know that I am beginning to learn some of these lessons.

Tomorrow may be different.  I may get frustrated or I may not have any expectations but I'm pretty sure my plants will probably get watered.

Day 20 - Waiting Room #31Days

Recently I was sitting in a waiting room and took a moment to look around.  This waiting room was for a doctor but not a pediatric specialist (the places I frequent).  There were few children and my not-so-little one was taking care of herself (with the assistance of her Kindle).  I noticed the different people sitting there waiting.

You could tell some people were good at waiting.  They came prepared.  Others seemed impatient and uncertain.  One pair caught my attention.  Neither were particularly young.  One was obviously older than the other.  After a few minutes I realized the younger woman was the daughter of the gentleman.  They were a well spoken pair.  I enjoyed watching them interact.  It was obvious that she was used to taking care of him at times but also that he was perfectly capable of handling things most of the time.  They were well dressed and well spoken.

I don't know what captured me about this pair but it was beautiful to watch.  The daughter made sure he knew the latest about her young adult children.  He seemed to smile as she talked about his grandchildren.  He did keep checking with her about the time. She continued to assure him that they were right where they were suppose to be.

After a bit someone came and let them know they had in fact been sitting in the wrong area and they had been calling for him.  The gentleman never fussed but I watched him graciously move along.  I noticed that even though he obviously needed his daughter with him for some reason (none that were obvious) he still knew what he was about.

I admit I don't always stop to see who else is waiting with us.  I guess I usually have my focus on my girl and the reason we are waiting.  I was reminded that it can be good just to be together.  Smile and catch up.  I'm thankful for the simple little moments we get to wait together.

Day 17, 18, 19 - Fall #31Days

I LOVE the fall.  Living in Texas it seems like the cooling days are a welcome relief from the typically hot summers.  I love the cool air in the mornings and the mist that rises from the pond across the street.  I love the pumpkins and the yellow and red mums I put on my patio.   I tend to feel refreshed and cared for in the fall.

This weekend my husband and I took a quick trip for a business event.  The weather was simply beautiful for the flights and as we landed I saw something I don't think I've seen before....  true fall color.

Oh, the leaves change colors in Texas but usually we have a limited amount of color and suddenly the leaves turn brown and blow off the trees about the time we put Christmas decorations out.

Saturday I saw true fall colors out the window of the airplane.  It was lovely.  It reminded me of the architectural models Deric used to build in college.  The trees were different colors and different shapes.  It was beautiful.

The event we attended was an outdoor dinner.  It was cool and misty.  There were outdoor heaters and a fire pit.  Occasionally someone would apologize for the cooler weather but I simply smiled and thanked them for the sweet breath of fall.  I had my boots on and my sweater wrapped around me and I felt refreshed and alive.  It couldn't have been more perfect.

I think I might like to take a driving trip to see fall colors one day.

Day 16 - Simply Together #31Days

One of the many benefits of being a mom to a medically fragile child is the easy way the two of us can spend time together.  After more than 12 years we have experienced many times where the two of us have had to create our everyday fun.  When she was sick or recovering from illness or simply being protected from the illnesses around her we have been isolated a lot through the years.

We have learned to create "theme" days.  Some days have been puzzle days, some princess days.  Some have been Pixar days.  We have had Star Wars Days...  ok, yes, many of our activities have centered around movies!

Today I got to enjoy another day of sweet togetherness.  She got a nasty bump on her head after running into the restroom stall at school.  My plans weren't too altered.  It was determined that I needed to observe her today to make sure she really was ok.  So we drove.  She came with me on the many errands I had scheduled.

It's amazing to me how the two of us can just shift into a mode of being together.  Sometimes we just sit and read or do what we want.  Sometimes we chat.  Sometimes we don't.  After twelve years I LOVE being with my girl.

Day 15 - A Simple Lunch #31Days

I'm a social person by nature.  In the early days when Miss Alex and I were home A LOT I really struggled with isolation.  This was before the days of social media.  Sure I saw people and spoke to them on the phone occasionally but as time went on I became more and more isolated.  Often illness or the fear of illness would keep us home.  I never made plans for lunch or evenings out with friend. This was a hard place to be.

Since then life has moved on and our lives are rich and full.  My family is getting older and schedules are getting full.  Not to mention that social media has me well connected!

In my recent attempts to simplify things I have learned to enjoy a simple lunch, even alone.  I enjoy time with a book or a list or even that candy game on my tablet.  I like getting to choose how and when I enjoy lunch.  I like the quiet.  Sometimes I even enjoy the noise and people in a restaurant.

Often I work on a Bible study.  Sometimes I menu plan.  Sometimes I make my "to do" list.  I have met some sweet friends for lunch and been encouraged.  It seems like a simple lunch alone wouldn't be a big deal but the truth is I think it is a gift.  A sweet gift of time and space.

Day 14 - Dentist, Driving Lessons and Chicken Soup #31Days

Some days my "simple" life is just perfect.  I get the joy of taking my girls to the dentist.  It seems silly I know but I love taking care of them.  I love making sure things are good in their world and helping them make sure they are learning all they can to take care of themselves.

Today we combined lots of different things that seem simple in and of themselves but they are really sweet works of art.

We used our dentist appointment across town as a good driving lesson.  My oldest is learning to drive and today I watched her confidently (mostly) navigate city traffic.  We did pause our adventure by stopping by my parents house.  This lead to some interesting trips down memory lane as we found some old pictures of both my parents and my brother and I.

I think the supplemental driving lesson my daughter got while taking my dad for a spin around the block was extra special.  I watched her help him to the car with his walker and smile broadly as she sat in the drivers seat.  They had tales to share when they returned of a visit with my aunt a few blocks away.  Apparently my dad is still a good driving instructor and she repeated many of the great things he pointed out in their short trip.  What a cool memory.

As we got home we shared some chicken soup.  A new recipe.  As we evaluated the soup our "girl" family got to talking about boys.  I love the sweet unexpected life lessons that come up from these simple moments.  Hopefully God has equipped us to build into them truths that will help them as they grow up.

What a sweet afternoon of memories collected from a few simple tasks in our day.

Day 13... SLEEP (written LAST #31Days) and not published

Today I found a blog post from LAST YEAR when I wrote about the Unexpected Journey.  It was a good entry.  I'm not sure why I didn't post it.  It's funny.  This very topic has been on my heart off and on for the past few months.  I realize this issue may have been more defining for Miss Alex's health than I ever realized.  I will never know but it is becoming clear that we have done somethings that have made a remarkable difference in her life.  I don't like to take credit for it, really it was God acting in her life.  I still firmly believe that He has a plan for her and He is the one who decided she needs to thrive in this world.  We simply walked one step at a time.  Here is my entry titled "SLEEP".

written October 2013
Ok, confession.  I LIKE sleep.  Really I do!  It also takes me a while to fall asleep at night.  My husband can fall asleep anytime any where (preferably NOT while driving).  

Of course we are typical parents and we expected to get very little sleep with a newborn in our home.  What we didn't expect was how long we wouldn't get a full nights sleep..............  11 YEARS!!!  yep, you read that correctly.

Let me ask you, if a doctor told you that the way to keep your baby safe (after VERY SCARY EVENTS) was to wake up (or stay awake) every night for 11 years, what would your answer be?  I think we all think we would say "yes".  No one ever told us a timeline, just that it was necessary.   

While I would love to tell you that we embraced those feedings with love, compassion, and sweetness I must confess that we didn't.  There have been many bargains made between us loving parents.  Apparently we are not our best with little sleep.  

If I had known the length of time we would be on that routine I don't know if I would have embraced the task.  As a matter of fact one of my most vivid battles with this occurred when she was about five or six months old.  It was a 2:30 am feeding.  I was mad.  Mad at God.  I didn't think I could keep my head up to feed her that night.  I simply didn't want to do this any more.  It was hard and I remember wrestling with God about this.  I KNEW I should be thankful I had a chance to take care of this sweet gift.  I KNEW I should have a better attitude about this.  I didn't.  I couldn't think.  I couldn't move past it.  But the next time I did.  Eventually I made peace with God on this.  He changed my heart about this.  

God taught me a lot about being diligent in those days.  This was what I needed to do.  Whether I did it with a happy heart or a grumbling one I needed to do it.  

The thing was I got to watch her grow.  For many years beyond what most parents get to experience my husband and I have gotten a few extra minutes to cuddle with our girl and feed her.  Her sweaty curls would just stick out from her head.  Her eyes usually stayed closed.  She was precious.  A true gift.  This "midnight snack" was really a gift too.

Things eventually switched around and my hubby got the job.  Sleep comes easily for him and it didn't disrupt him as much as it did me.   I watched with awe as he secretly treasured these times with her.  I know that each time he fed her he became more of a hero to me and her.  This too is a sweet picture along this sleep-deprived journey.

What is my conclusion?  We still like sleep.  After 11 years no one is complaining that the schedule has changed.  I still REALLY like sleep.  I may also still be a tad anxious on some nights thinking she might need extra (and I'm certain there will be some "midnight snacks" ahead when her body needs them).

.... Another year later we still like our SLEEP.  We are thankful for all of us to be able to sleep through the night.  We do not take this simple act lightly in our house.

Day 10, 11, & 12 - Good Tired #31Days

I guess won't win any awards for writing each day but that is fine.  The aim for this writing challenge is to try.  I will continue to try.

The past few days have been "simply" BUSY.  It was a busy weekend with homecoming activities and hosting a marching contest at our school.  WHEW!

Yes, it was tiring but it was also good.  It is good to be a part of a community that works together for community spirit and great events.  It is good to mark time with my teenage daughter to see her growing into a beautiful young woman.  It is good to work along side my family for a worthy event.  It is good to be in a press box all day working along side my daughter and seeing her serving others and LOVING it.

It is a good tired.  One thing I realized with my "simple" life I haven't put myself into such committed situations in a L O N G time.  Often I have worked to keep my younger daughter "safe" and keep things moving along smoothly.  I haven't stretched myself in a long time.  I have lived in fear of letting others down if she got sick and took me away from the "important event".

I have come a long way and without even realizing it I took this event one step at a time.  I didn't really stress over her health or make a back-up plan if she got sick.  I simply moved forward.

At the end of this busy weekend I am tired.  My house is a mess.  The laundry isn't done.  There aren't a lot of food choices for the week.  My family is a bit grumpy and tired.  BUT my life is good.  I allowed myself to stretch and grow a little.

Tonight I am a good tired.  With that I think I'll work on getting my tired family to bed a little earlier.

Day 9 - List #31Days

Today I was a busy mom.  (Who isn't really?)  Well I NEEDED a list to get make sure I stayed on track and took care of details that needed to be done.

This is a busy month for us and this weekend is FULL.  I realized how helpful my lists was.  I could focus on each item and was certain I was taking care of each item.

Today I realized that my list helped me simplify my crazy thoughts that kept running away.  I'm thankful for my simple lists today.

Day 8 - Simple Opportunities #31Days

My busy life is often consumed by being a mom and taking care of my family.  Today I had lunch with a young, dear sweet sister in Christ.  I've had the joy of watching her grow up for many years and now I sat across the table and saw the amazing, beautiful woman of God that she has become.

JOY, SWEET, TEARS, STORIES, HISTORY
These words all describe our lunch.  She is stepping out in faith and following the unique path that God has been laying out for her.  I can remember when she was the age of my youngest daughter.  She needed an extra hug and care on Summer day.  I had that joy then.  Today I had the joy of praying with her.

I am in awe of her.  Today I experienced a true joy of my simple life....  time....

Day 7 - Good #31Days

The truth is my life really isn't simple.  I am the mom to a medically fragile daughter.  There have been a myriad of days over the past 12+ years.  Some very hard.  Some amazingly good.  Some long.  Some have flown by.  They all add together and make for the life that I live.

I love being her mom.  She has transformed me in so many ways.  Much of what I wrote about last October 31 Days talks about that journey.

Today was her check up at her "smart doctor" (as we used to call him).  The appointment went well and routine.  Most of these appointments have gone that way.  Today I did my job well.  I was prepared.  I asked the questions I intended to.  We updated them on the past year.

She and I make going to the doctor an event.  She always has her "things" with her that will entertain her and distract her from the events of the visit (labs).  I was looking at her as we waited today and realized that our routines have made these complicated and concerning visits pretty simple.  I remember being the mom of a new born wondering how I would ever do this alone.  I watched another mom of a small infant manage all of her stuff (stroller, blankets, bottles, paperwork) and realized how far I have come.

I may not be making a very big mark on the world at large but what I do as her mom is important.  Reviewing the events of the past 12 years I realize the efforts we have gone through and many of the sacrifices we have chosen to make have probably made a real difference to the quality of her life.