Undone

Recently, I came to a conclusion.  Maybe it was the deep depression I was in; maybe it was the counseling and group therapy I took part in, that sparked some of these thoughts.  Nevertheless,  I came to a conclusion:  I am tired because I am living the same life twice.  WE, as a family, as a couple, are living the same life twice.

The joy, pain, thrills, and agony that came along with Ellie Kate's journey - we are experiencing those again through Lucy Belle.  We knew this would happen when she was diagnosed in-vitro but it is SO much different living it out.  I wouldn't change a thing, and the Lord brought Lucy to us at the perfect time and for His glory.  But, I am human and this is hard, ya'll.

Fighting and advocating for your child is so very difficult.  Ask the parent of any pediatric cancer patient, any pediatric hospice patient, anyone who is parenting through a health crisis; if you ask "how they do it", most will just say, "because I have to; because I want to; because I love my child". And that's the truth.

 As parents, we are Navigators.  We are Warriors.  We are lovers of our children, lovers of our husbands, lovers of our families.  We push, we annoy doctors and nurses with endless questions; we keep on and keep on and keep on because we want what is best for our child.  As parents of severely ill children, we do not have the blessing of planning for our child's wedding.  We get to plan for funerals.  We don't schedule dance classes or baseball; we schedule doctor appointments, therapies and meetings with specialists.  For example, today I called my friend Kristie (whose daughter Emily passed away in last year's big tornado), and asked about shepherd's rods for wind chimes.  I didn't call her about the shoes her daughter was wearing, or where she got that outfit, or where her daughter was taking dance;  I asked about a shepherd's rod so that I could hang a wind chime at my daughter's graveside.  It's just so surreal.

I arrived at Ellie's Spot today to find that all of her beautiful (yet faux) flowers in her vase had been thrown out.  I didn't check the calendar at the cemetery, so I didn't realize that all flowers and items were trashed on March 1st.  My heart sank as I saw that blank little Spot.  The money I had spent on those beautiful flowers; the tears and love that went into them . . . and now they have been trashed.  I know it's the rules, but it still hurts.  I may even find that the wind chime is gone when I visit again.

Tonight, the Lord sent me a reminder through His Word through a precious friend named Angeleigh.  She often encourages me with God's Word via text, and her messages are ALWAYS timely.  Tonight, Angeleigh sent me this:  "Those who sow in tears shall reap with shouts of joy!"Psalm 126:5.  I actually saw that verse twice today, so I know the Lord is encouraging my heart even through my heartache.  This pain is not in vain.  YOUR pain is not in vain.  He brings beauty from ashes.  

LUCY UPDATE:
As you know from my post earlier today, Lucy is still having a hard time with screaming.  It's heart-breaking and we will do whatever it takes to make her comfortable.  Today we were able to visit with Lucy's team of doctors, and we've come up with a plan.  First of all, we will be experimenting by eliminating one of her main NKH meds "cold-turkey".  We've stopped it as of tonight, and we are praying that it will help give Lucy some pain relief.

The downside of this is that Lucy will likely have more seizures.  Do you choose non-stop pain and screaming or seizures???  For now, we feel like we should put up with seizures rather than watch Lucy writhe in pain.  This could also make her more lethargic, and could cause a host of problems.  I'm nervous, to say the least, but I am hopeful.

Thank you for praying and for keeping up with us during this part of our journey.


Completely Undone (which is where God wants me),

Ryan