My
heart is overcome with gratefulness, spilling over with joy! No, we did not
win the lottery or fall into some lofty inheritance. Mercy who
has brought me to this place, allowing heavy, dark concrete to fall off my
body, mind and spirit at this moment in time. This joy
isn't because of anything I've done, but I am more grateful for these
moments than years of "thank you's" and praises could ever
express!
The Spirit speaks to me so often through song. Some may remember the old ballad of Cat Stevens'
about a breathtaking morning, the peace so tangible, it dances like a mist over
the meadow; the delicate birds begin to sing the songs God placed inside
them.
"Morning has
broken like the first morning
Blackbird
has spoken like the first bird
Praise
for the singing
Praise
for the morning
Praise
for them springing fresh from the world"
- Cat Stevens
For the last thirteen years of our
roller-coaster Journey, one desperate song has continually played in my
mind, body and spirit. God placed words in my
mouth at the beginning, when Ellie Kate was in the PICU as a newborn, as the
doctors told us she would likely die that very night. I had no words
- groanings too deep for words. Some of
you know exactly what I mean. I only remember the chorus, but
maybe that's all I'm supposed to have stamped upon my
heart . . .
"Oh,
Lord Jesus, Come quickly to me!"
But if we hope for what we do not see, we wait
for it with patience. Likewise the Spirit helps us in our weakness. For we do not know
what to pray for as we ought, but the Spirit himself intercedes for us
with groanings too deep for
words. And he
who searches hearts knows what is the mind of the Spirit, because the
Spirit intercedes for the saints according to the will of God.
Romans
8:25-27
At
times in recent years, I've felt empty and broken, as if a piece of me
were missing - a piece I needed to keep going. During
the trials and heartaches of this life, every single one of those feelings is
normal. Every feeling is okay to have, to FEEL. Don't
be ashamed of those feelings - there is nothing to be ashamed of, Dear One.
You are human; God made you with feelings and created you in a way to
express them.
There
are no magic words, no specific Christian book to read or Study to go through; your heart and mind
won't change when you hope or "wish" it away. No, it
comes in the Lord's timing. He may give you this joy and freedom
DURING a struggle, or He may do so in between the seemingly constant trials.
All we can do, all we MUST do as Believers, is SURRENDER - surrender over and
over, our hearts always bent before God.
Your
Father WILL sweep in and show Himself in your life, even in the midst of the
heaviest trial. He
is, "Mighty to save", continually moving mountains on behalf of His
beloved Children (even if we don't see them).
"The Lord your God is in your midst, a mighty one
who will save;
he will rejoice over you
with gladness; he will quiet you by his love;
he will exult over you
with loud singing".
Our God continually
PROMISES to make ALL things work out for YOUR GOOD (and
the good of your children, spouse, family), and for HIS GLORY. As
followers of Christ, what more could we want in this life than for God to be
glorified through our lives and the lives of our children, AND for Christ to
get the glory for everything?!?
For I know the plans I have for you, declares
the Lord, plans for welfare
and not for evil, to give you a
future and a hope.
Jeremiah 29:11 (ESV)
This is God’s Word on the subject: “As
soon as Babylon’s seventy years are up and not a day before,
I’ll show up and take
care of you as I promised and bring you back home.
I know what I’m
doing.
I have it all planned
out—plans to take care of you, not abandon you,
plans to give you
the future you hope for.
Jeremiah 29:11 (MSG)
Oh, Father! Thank you for this glimpse of happiness, joy and sweet expectation! Thank you for relieving my heavy burdens, even if only for a moment! How grateful I am to breathe so lightly, to rest so deeply and freely, knowing I can trust YOU with everything. Life will always be difficult. I will continue to live in survival mode because of our circumstances, however, YOU are there. I find hope and peace, knowing you are using all of this for the good of my children, my family. How humbled I am that YOU would be glorified in me, a broken and sinful human. When I'm next in the darkness; if the heaviness of these trials once again dims my spirit, may I remember the feather-weight of these days.
I Surrender,
Ryan
CONNER is enjoying his freshman year at Westmoore and is
working hard, playing on the soccer team. High school is a whole new
world, but we are incredibly proud of the young man Conner continues to be -
tender-hearted, affectionate, witty, helpful with his sisters and patient with
his brother. His life brings peace, balance and LAUGHTER to our Home. I'm
so grateful for Conner (or, 'Boy' as Bowen calls him).
BIG grin from Henry - looking up to Big Bub
HENRY has been initiating his schoolwork and chores, showing
more and more of the "Real Henry" we know and have missed. He's
growing more responsible and even more affectionate, hanging on to every verbal
affirmation that comes his way. Henry has changed for the BETTER since
his IVIG treatment last fall, and we've seen a HUGE difference in his
life. His life is more calm and steady, without as many highs and
lows. He is able to eat and has gained back the weight lost last summer
due to PANDAS symptoms. Henry's playing soccer again this year and has
played every game in it's entirety (without taking a mental
break , quick walk to calm his mind, not even a break for reassurance
from me! This is HUGE. I hope to update more on Henry soon.
In the meantime, THANK YOU for praying for our Sweet Boy. Thank you for
giving, helping to provide a way for him to go to D.C., paying for his IVIG
treatment - a treatment which has clearly changed his little life for the
better!
Look at the smiles on those faces!
BOWEN is a light and complete JOY! Speaking in
sentences now, we take great delight in hearing her speak, which happens to be
quite often. Bowie is athletic and is now obsessed with our
"mamboleen" (trampoline). She's small for her age, which just
adds to the fun for me, as I want her to stay a baby as long as
possible:). Bowie Jane is just as strong-willed as our
other kids, and has recently said, "Mommy, YOU MUST obey me!",
"Mommy, PLEASE, no talk, no sing (I like to hum and sing
around the house)". She's graduated from "Bubba" to
"Enry" (Henry), although she still goes back and forth
on those. My parent's dog is named, "Duggah" (Sugar) and
Lucy's name is not only "Sissy", but also, "Juicy"
(Lucy). She enjoys singing, "Lucy, My Belle" with me - a
favorite of "Juicy's", which PawPaw Stan would sing to her
often. Mike and I can't imagine life without Bow, and the boys often
say the same.
Joyous Bowen!
LUCY is growing, which is wonderful! A year ago at
this time, Lucy was so still ill and thin; she barely had energy to
move at all on her own, something she loves to do. Now, she's weighing
heavier than ever, which is a MIGHTY blessing!! Her energy level amazes
us, although she still literally falls asleep anytime, in any place, in
any position (she's a flexible pretzel due to the affect NKH has on her
muscle tone). She's moving more and more on her own, pulling herself up
to her knees. We haven't seen Lucy this happy and have not
heard her giggle this much, since she was an infant. It is a
GIFT we don't take for granted.
Happy Day at the Park!
Mike and I have counted
approximately 30 urinary tract infections, which Lucy has had in her seven
short years on earth. This is heartbreaking to us and, through
many tests over the last several years, we know Lucy retains her urine and the
retaining is only worsening, instead of getting better. The
medications we've tried have not worked. Lucy's still often in pain
and at times, in her own way, can show/tell us what's hurting. I know how excruciatingly painful my Intercystial Cystitis can be, and
I fully believe that is how Lucy feels, likely even worse. I
can't imagine a child in such pain.
Even though Lucy is on Palliative
Care, we have decided, with her specialists, it would be best to place a
permanent catheter. Most
of the time, surgery wouldn't be done on someone on Hospice or
Palliative Care, but we all agree this step is a MUST for keeping Lucy as
pain-free and happy as possible. The catheter will allow us to drain Lucy's
urine as needed, preventing retention, which in turn, helps to prevent bacteria
growth, which in turn, eliminates or limits the amount of infections, which in
turn, makes a happy and healthy Lucy Belle! She will have to
go "under" and be placed on a ventilator during the surgery,
something we are extremely nervous about, as there is no assurance Lucy will
wake up from that state. We've never chartered this
territory before; EK never had bladder issues, so it will be a new learning
experience for us all. Surgery is set for the end of
April.
Thank you for praying. Thank you for loving. Thank you for supporting us, in so many ways. We'll keep you posted.
