The Early Years
Michael and I met on Memorial Day weekend in 2001. We had a whirlwind romance, and were married
in August 2002. We were so happy in our
little life. Mike and I were also extremely
happy at Bridgeway Church, where we still attend to this day. It was a very sweet time in our lives.
We had been married for five months when we found out we
were pregnant with little Conner. What a
surprise! Michael was in law school and
I was working at the same university in admissions and recruitment. We were so excited when Conner was born, our
little “Leader, Who is Like God”. It was
a new adventure in our lives!
It seemed that we had it all figured out. We thought we would be in a position to give
to others financially and emotionally.
Our desire was for Mike to be successful at work, for me to be
successful at home, and for our work to benefit those in need around us. We have a passion for social justice and for
the poor, and we desperately wanted to be able to serve and love others
unconditionally. Little did we know what
God had in store! Through His grace, He
changed our ideas of “success”. He
changed our hearts toward people. He
changed our hearts toward Him.
Our Mission
When Ellie Kate was born, we were thrilled. This gorgeous little girl turned our lives
around. She truly was our “Consecrated Purity”. God used her to give us a mission as a family,
and it wasn’t anything we would have ever dreamed of or even have chosen! Suddenly, we were opened up to the world of
special-needs. These medical situations,
especially those involving children, were right in front of us and we lived the
good, the bad and the ugly. We
saw the great and deep need of these hurting people because we became them! The
hurt, the deep needs emotionally, physically, financially – everything was just
so evident.
You see, God’s mission for you is where you are placed. What is your heart’s cry? Where has God already put you? What types of people is He asking you to love
on through your circumstances? Look around
and ask Him to show you and open your eyes.
You may just find your family mission right in front of you, just like
we did!
More Babies
When Ellie Kate was a little over two, God again began
stirring our hearts. He called us to have
another baby, and I had never before been so sure of something. Before we even tried, we were pregnant with
little Henry.
Although I was extremely nervous about the possibility of
NKH happening again, I had a peace like I’ve never experienced. I knew we would
have a boy and I knew that he would be free of NKH. Since there is a one in
four chance for the disease with each of our pregnancies, we decided to do CVS testing. Mike and I would keep our baby no matter
what, but we did want to have a plan in place in case the baby needed medical
attention because of NKH. We soon found
out that we were having a boy and that he was indeed healthy! God’s promises were true; He is so worthy of
our trust.
It was a complete and absolute surprise when we found out we
were pregnant with Lucy. From the
beginning, I was extremely sick with Lucy, just like I had been with Ellie
Kate. As with Henry, we went to the
high-risk genetic OB for CVS testing.
When I saw Lucy moving in that very first ultrasound, I had a feeling
that she had NKH. Even at twelve weeks,
she was moving continuously, much like her sister did. Lucy also had a twin, just like Ellie Kate,
which made me think that she had NKH. It
wasn’t too much of a surprise when we found out that we were having a precious
girl that also had this terminal disorder.
Although abortion was a choice for us that was even encouraged by some
doctors, we whole-heartedly wanted this baby.
She was a part of us, and through a few dreams, we decided to name her
Lucy Belle which means, “Beautiful Light”.
I had no idea what a salvation, what a true LIGHT, Lucy would be for me
mentally and spiritually.
Heartache and Triumph
I had one short year of being a momma to four children on
this earth. When Ellie was seven years
old, she went to be with Jesus. Conner
was nine, Henry was four and Lucy was one when she passed away. I am so desperately sad that my children didn’t
have more time together in this life. I
would love to see them play and interact today! Trusting Jesus and His plans is hard, isn't it?
Mike and I didn’t dream of having children with severe special
needs. When we married, we weren’t
planning on burying our children. We
didn’t expect, nor did we hope to face the challenges that we have, but I’m guessing
you didn’t either! And truthfully, I am
SO very grateful, so humbled that God has allowed us to face these struggles
because God has taken us deeper with Him through our desperation.
Here’s the thing - God is faithful. No matter what happens, no matter what heartache
you face, He IS with you, He IS for you, and He IS faithful. Whatever trial that comes your way, you can
face it with the Lord Jesus. Now, that
doesn’t mean that it will be easy and it doesn’t mean that it will be okay all
of the time. It also doesn’t mean that all your plans, hopes and dreams will
happen just because you have trusted Jesus as your Savior. What it DOES mean is that you aren’t
alone. It means that there is a greater
purpose that you may not see on this earth.
You will learn more about our Father, more about yourself, more about
God’s heart for the world, more about everything deep and holy, through your heartaches
and your triumphs here on earth.
Life in Christ is a beautiful thing. Beauty for ashes, hope for despair (Isaiah 61:3)!
Our New Normal
As a family, we’ve spent months and months in the hospital
with our girls. We take Lucy to physical
therapy, speech therapy and occupational therapy weekly. There are also doctor visits, trips to
various pharmacies and consulting with doctors around the country. We have counseling for the boys, support
groups for our entire family, house church, and many other things that we are
involved in. Hope Link keeps us busy as well and has become even more of a
life-line since Ellie’s passing. We fight for Lucy's life, we fight for the heart of our boys, and we desperately mourn the life of our Ellie Kate.
Just like yours, ours a busy, busy life, but we are grateful. We are grateful for God’s incredible
provision (oh, the stories I could tell you!).
We are grateful for the community He has placed us in with Bridgeway,
with Hope Link, with our NKH Family. We
are grateful for the mission that He has given us to love on families whose
children suffer from rare, serious and undiagnosed disorders. And more recently, we are grateful for the
mission of loving on those who have also had to bury their children.
If you take anything from our family, know this:
- Jesus is the ONLY way to life eternal and life abundant here on earth. John 14:6, John 10:10
- Life is hard, even for the Believer, but He is faithful – even when it doesn’t feel like it. You can always trust your Father-God. Deut. 7:9, I Thess. 5:24
- God has a mission for you and for your family – ask Him to show it to you!
- Life is beautiful because of what God does in it and through it, and because of the breath-taking things He does in and through our struggles. He redeems what was lost. He restores. He heals the broken-hearted. He’s doing it for us, and He will do it for you! Isaiah 61:3, Psalm 147:3
I love this, Ryan!! The depth of your love and gratitude and trust in God is such an encouragement and inspiration to me. So glad you started this blog! :) Praying that God blesses you and your family, and that He uses this blog to bless and encourage other mothers of special needs children!
ReplyDelete