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