Thank you for the opportunity to share…..I had an easy life. It
was a comfortable life. It was a life lived in a Christian home with a
mom and dad who lived what they believed. I never had any tragic
things going on around me. Everyone was happy and healthy.
It was
an easy, carefree life. It continued through high school and Christian
college where I received my nursing degree. I didn’t put much effort
into my personal walk with God….because it was an easy life. I didn’t
need to or so I thought.
And the easy carefree life continued as I met and married my
husband who was also a believer and had grown up in a Christian
home with an easy, carefree, comfortable life. He had a family who I
instantly loved and who I am pretty sure instantly loved me back of
course. Our happy life continued together working with blessed
careers, serving God in our church, and welcoming our first baby,
Jacob Lane in July of 1998. As all new parents, we were full of joy
and instantly in love with our special perfect blue eyed blondy. It
wasn’t long, however, before we discovered just how special he was.
At 7 months old he was diagnosed with a rare neurological condition
that we were told by neurologists and google...who knows all… would
likely lead to a life of severe disability.
We were stunned. We were
sad. And we began to grieve for our sweet handsome lovable boy
who would not get to live an easy carefree comfortable life. And to be
perfectly honest we grieved over that same loss for ourselves.
As the first three or four years of Jacob’s story unfolded and I
watched him suffer with seizures and pneumonia and a tracheostomy
that rendered him unable to make the only simple sounds and
laughter he had learned to that point, I started to question many
things about the God of my childhood. Well meaning Christians
would sometimes quote scripture that should have brought comfort
and healing, but instead served to deepen my growing
disillusionment and disappointment with the God of my former easy,
comfortable, carefree life. I hadn’t really developed my own deep and
personal relationship with my God, and I was suffering the
consequences of that I guess. I asked questions such as, “God, how
can you be a good God and allow my child to suffer?” “How can you
really be a loving God and take more ability from my boy who already
has so little abilities?” “How could you be a faithful God and not
answer any of my prayers for healing or for no more seizures or for
no tracheostomy?” When some would share with me how God was
using Jacob’s life to impact others...to help others see their need for a
relationship with God... I distinctly remember thinking “I don’t care
about those people enough to watch my child suffer for it! God can
use anything or anybody He wants to to accomplish His plan! It
doesn’t need to be my child! Why would I care about people I don’t
even know coming to know God when my baby is the one missing out
on living a full and comfortable life?!
It was around this time that I began to have a Bible study with
a few friends one of which is my best friend Aimee. We each had very
different struggles in our lives at the time so it was decided that we
should study the attributes of God. We needed to deepen our
understanding from God’s Word of Who He IS….. and He began to
work in my heart through His Word. It was a start, but these promises
of a loving and sovereign saviour verses my disappointment and
questions were about to get tested in a huge way.
Four years of medical issues and most of the time things didn’t
go smoothly. There were always complications...and rare ones.
When a doctor would say, “ well that’s never happened in my practice
before” we were on alert for it to happen to Jacob. One such
circumstance happened while he was recovering from a surgery to
close his tracheostomy which is a hole in your neck with a plastic
device stuck in it for suctioning out phlegm. It renders most people
unable to make sounds... So anyway….We were delighted and
surprised that this time, things were going just as planned. We were
beyond excited about that and about getting to hear his sweet sounds
again. He was awake and smiling and making little sounds and we
were shedding tears of joy…. And then it happened….the
complication that in the surgeon’s words “ had only happened once
in her years of practice”. This complication caused a team of doctors
and nurses to surround him, put two painful chest tubes in his lungs
to get them reinflated and head back to surgery to repair the damage.
I was devastated and sad and mad at God for allowing my child to
suffer once again. I cried out to Him…”Why couldn’t you just do it
this one time? Why couldn’t he have a complication free event?”
Why do I bother praying if You are just going to do what you are
going to do anyway? Do you REALLY listen and care about my boy?
Yes. It was definately a very low point for me.
He quickly recovered from the second repair and we were once
again able to take him home and to hear his sweet sounds of laughter.
And our study of the attributes of God continued. And as many
of you can relate, learning about who God is moves in deep and
profound ways in ones’ heart...and it sure did in mine. God began to
deepen my understanding of His ways and His heart. God’s truth in
His Word became alive and personal in my life.
You see, God began to show me and is still teaching me today
that if I doubt my Saviour because of the many difficult times we face,
then I would also have to doubt how God has given us glimpses of
His Himself through all of these circumstances.
God is Present Everywhere at all times - I definately struggled with
this when I entered Jacob’s bedroom one day only to see a slithery
earwig bug crawling on his face near his mouth. My initial reaction
was “Really God?!! Really?! Here’s this child who can’t move his
own hand to swipe a bug away and You allow this?!”
But God allowed me to question and He has answered it over the
years many times….IF I doubt the God that allowed this earwig near
Jacob’s mouth, I would have to doubt the God who grants us sleep
giving us assurance that HE never sleeps. I would have to doubt the
God who has promised me from His Word as He promised Hagar
when her heart was broken for her son Ishmael - that God is the El
Roi(EL raw-EE) - The God who sees. Ultimately it His job to watch
over Jacob, and He does a much better job than our family could
humanly do.
Unchanging- Last year my husband and I had to make the most
difficult decision to date regarding whether or not to close the hole in
Jacob’s neck. It took several weeks to discern the best course of
action and to understand how God wanted us to act. We eventually
decided that what was best for Jacob was to have the surgery to
close it. As the surgery date approached my fears grew. I feared that
if things didn’t go as planned I would feel so guilty and responsible
for having made the wrong decision. I remember sharing my heart in
tears with a Godly leader at church who reminded me “If God has led
you to close the hole, He doesn’t change His mind….. Knowing that
my Heavenly Father DOES NOT CHANGE took on such a practical and
deep meaning to me that day.
Sovereign - God is in control. There are many times when it’s easy to
doubt that He really is in control and that He has a plan specifically
lined up. I used to doubt this plan alot. I doubted what on earth He
had planned through this difficult journey of…. No more normal
routines….. No more carefree life….. Limited social activities for our
family…...We lack privacy because of the many caregivers in our
home. Allowing our son to be dependent and so often ill doesn’t
seem to be what we would have planned.
IF I choose to continue to doubt that He is in control I would also have
to doubt the God who has worked in unbelievable ways through
Jacob’s precious life. There are so many people we have been
privileged to come to know and love through this “special needs
world.” For many many months we prayed for a dear friend, a loving
father to a special needs girl. Often as I prayed for his salvation I
would say to the Lord, If you would just allow me to see his salvation
I would just KNOW why you allowed Jacob to struggle so much. I
would just be so thankful to SEE this tangible thing happen...to
witness a life transformed and a pathway changed to heaven. In
January of 2012, as we all wept in the ICU waiting room the day that
Jacob had come very close to death our friend shared the news that
He had accepted Christ as His Saviour!! Since then, God has also
allowed us see two of Jacob’s caregivers accept Him as Saviour and I
am privileged to be used of God to be having a Bible study with both
of them.
God has shown his sovereignty in using Jacob’s life to break my father’s
heart, and in that brokenness has given him a deep and fervent
compassion for lost souls. God has used my dad as an obedient
messenger, and through the power of the Holy Spirit has been privileged to
lead many to Christ.
The sovereignty of God cannot be doubted when that same best friend who
studied God’s Word with me all those years ago became a pediatric nurse.
On several occasions, the insights and caring compassion that she has
learned from loving on Jacob and our family have benefitted those children
and families in her care.
Gracious- If I doubt that God is a gracious God because He has allowed
Countless diaper changes and lost hours of sleep. He has allowed the
burden of needing to be in constant communication with his caregivers and
Scores of doctor’s visits. I could easily doubt that God is a God of grace
when there are unyielding physical and emotional weights that are
heavy on our hearts. But if I doubt, Then I would also need to doubt
this God of grace that loved us enough that He allowed His only
perfect Son to die in my son’s place and my place, and your place. I
would need to doubt the God that has graciously given my husband
and I a strong marriage to be able to face these difficulties together.
God has also granted us the beautiful gift of our daughter Sydney.
She is a happy and healthy almost 13 year old who loves sports with
her Daddy and continues to cultivate her own relationship with her
Lord.
God is All knowing - We could maybe doubt that God is All
Knowing....
when we begged God for the breathing tube to come out so he
wouldn’t need another tracheostomy. He got one anyway. When he
was well enough to have this tracheostomy taken out we were told
that his neck hole would heal up within a couple of days. We were so
excited to hear his voice again…to hear his belly laugh and the way
he called for us when his movie was over. But once again, he was a
rare exception and days turned into weeks which turned into months
and he still had a little hole left over. We still couldn’t hear his voice
and he couldn’t float around in our pool which is one of his favorite
things to do.
BUT then how would we explain that - God KNEW that Jacob would
get a pneumonia several weeks later and NEED this hole to help him
clear up the secretions and get better. Suctioning the hole totally
saved the day and helped him recover without needing another
tracheostomy.
Merciful - I can doubt my Lord of MERCY who allows My innocent
child to suffer...to suffer painful surgeries and illnesses...to suffer
having a tube stuck up his nose, down the back of his throat to his
windpipe making him violently thrash his head in protest and then
violently cough as the tube touches his airway. My son does not
deserve this difficult life. How is this merciful? Why should he and so
many other children suffer?
Well, if I doubt this about my Lord then I would have to also doubt the
God who doesn’t give us what we do deserve. As a result of a sin
nature, everyone of us and yes even sweet and seemingly pure Jacob
deserves death and hell. WOW. Believe it or not, this is the attribute
of Himself that He has used most powerfully in my heart over the
years. Countless times He has whispered - “even though he is
suffering right now, I have called Him to spend eternity whole and
healthy with me. He will be spared from eternal death and hell.”
He has also been merciful enough to spare Jacob’s life through a
couple of severe illnesses. He has chosen to allow Jacob sight to see
his family and friends that he loves. He has allowed Jacob hearing to hear his favorite fun Bible songs being sung in his ear by his
Grammy when he’s sick.. He allows him a content and jovial spirit
with huge smiles and belly laughs when his sister plays basketball
with him or crawls in bed with him to watch a favorite show. He
allows him sensation on his skin so he can enjoy his Grandma
rubbing lotion on him.
Loving and Good - I could doubt that God is loving and good when He
created our son in my womb to be unable to walk or talk...to be
completely dependent on others to care for his every need for a
lifetime. It might be easy to doubt that God is loving and good when
He allows Jacob to become allergic to his beloved dog Ned and be
forced to relocate him with family. It may seem that God is not loving
and good when He does not allow Jacob’s voice to return after his
most recent tracheostomy.
But God’s Word promises that God is Love and He is Good. He
created Jacob and He loves Him more than we do. There are many
things that our family will never know the answer to the question
“Why?” But because He has promised He is love and has promised
to be LOVE to Jacob through these circumstances that may not seem
loving and good we trust in that love and goodness. Psalm 100:5 For
the LORD is good and his love endures forever; his
faithfulness continues through all generations.go
Faithful -How is that this God is a faithful God when he has allowed so
many tough things to happen to Jacob?
Well if I doubt that God is faithful I would also have to doubt the God
who has provided Loving caregivers, many of which are close
personal Christian friends who have walked through this journey
faithfully with us..Countless times God has used them to show us His
faithfulness as they care for him to allow us time to maintain a
balance in our care and nurture of our daughter.
God has shown himself faithful through the sacrificial loving care of
my mother as she has learned how to care for him so well. There are
so many other families who do not have the support that we do and
especially don’t have a non medical Grammy who willingly takes on
so much responsibility….and does it as well if not better than any
trained nurse!
Also, In recent weeks, He has miraculously provided for our financial
needs in ways we would have never imagined.
The following scripture passage has been very dear to us since Jacob
was a baby. This is the passage that was used on his prayer cards as
they bring such comfort and stir a place very deep in my heart each
time - Remember ladies this is the God of the Universe speaking!!
May it encourage and revive your desire to deepen your relationship
with Him
Isaiah 43
But now, this is what the LORD says—
he who created you, Jacob,
he who formed you, Israel:
“Do not fear, for I have redeemed you;
I have summoned you by name; you are mine.
2
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
3
For I am the LORD your God,
the Holy One of Israel, your Savior;
4
Since you are precious and honored in my sight,
and because I love you,
I will give people in exchange for you,
nations in exchange for your life.
5
Do not be afraid, for I am with you;
I will bring your children from the east
and gather you from the west.
7
everyone who is called by my name,
whom I created for my glory,
whom I formed and made.”
8
Lead out those who have eyes but are blind,
who have ears but are deaf.
9
All the nations gather together
and the peoples assemble.
Which of their gods foretold this
and proclaimed to us the former things?
Let them bring in their witnesses to prove they were right,
so that others may hear and say, “It is true.”
10
“You are my witnesses,” declares the LORD,
“and my servant whom I have chosen,
so that you may know and believe me
and understand that I am he.
Before me no god was formed,
nor will there be one after me.
11
I, even I, am the LORD,
and apart from me there is no savior.
12
I have revealed and saved and proclaimed—
I, and not some foreign god among you.
You are my witnesses,” declares the LORD, “that I am God.
The comfortable, carefree, easy life was not intended to continue
for my husband and I. This new path God led us on almost 16
years ago is the path He always had intended. He has used it to
reveal Himself and to be an ever present reminder that this world,
this earthly life we live, is not our home and should not hold our
treasures and our heart. We are each here to bring glory to our
Saviour, Jesus Christ.
Because this is the plan our Sovereign God has had all along, our
family can attest to the truth in Scripture of the power of his grace,
the sweetness of his comforts, the tenderness of his providence,
and the truth of his promises.
Psalm 115:1 Not to us, LORD, not to us
but to your name be the glory,
because of your love and faithfulness.