We learned this week that our next child has not developed legs...and their right arm is only developed to the elbow...and the one hand on the developed left arm...is split. It hit us like bricks. Devastating. Unbelievable.
God did not let it end there. This is only the next chapter of our lives in His story.
-
Our conversation was fixated on whether or not we were going to find out the gender of our next child. We were preparing ourselves for the twenty week ultra-sound. This is the typical decision a couple might need to make at this point. Do we find out? Or not?
We had no clue. Why would we? It seems logical to simply assume. Nobody generally thinks, "is it going to have legs, arms, fingers, etc."And most likely...they never should. God has it all under control. Right? Maybe?
Is the child a boy or a girl? This is what most people should have to worry about.
We left the appointment with nothing. Well...with something. Concern.
The tech explained that she would show the pictures to the doctor and the doctor would call us to discuss what would come next. Nothing was said between us...but I think we both saw. Kristin said it when we arrived at her mom's house to pick up the kids, "I'm just concerned...what if our baby doesn't have legs?" We sort of shrugged it off...but we both recognized that the tech was "having a difficult time" locating the legs of our baby in utero. It's still gotta be normal. Right? They'll find the legs in a stronger ultra sound...the baby is just hiding behind the bladder.
The nurse from the OB/GYN called a few days later to inform us of the appointment. The next appointment. The one the doctor said we needed. This appointment would take place at the perinatal consultants' office. This was the higher powered ultra sound that was going to reveal our child's legs. Right?
The doctor called the next day. The bricks. This was the one that smacked us hard. The one that took us to the edge of fear and doubt. This is also the one that started the journey of hope and strength. It was only the beginning though. Sometimes...the beginning is rough.
Phocomelia. This is what the doctor gave us to help prepare. This is what it might be. This was not pretty...or healthy...or normal. This was gut-wrenching. This was not how our child should be...not how any child should be. Our children come out perfect...we make beautiful kids. Right?
The beginning was tough...it was depressing...but God was there. God was telling us that we had to accept whatever was to come. That this life was one that he was creating for His purposes. That all life was created for His purposes. That He had orchestrated everything along the way. God was saying that this is where he brought and is bringing us. God spoke to us that this was us...facing the challenge. This was us facing it together.
God was telling us that God is God.
Jason woke up a few weeks back. Job was where he was pointed. Job? ...We wondered. Job shook his fist at God...and in the end God was God. He was and is in control of everything. This was Job's greatest revelation in life. This is where God was ultimately glorified.
-
The day after the Doctor called was...a day to wait. A day a little calmer to prepare us for what was to come. Distractions. Focus. Trust. God gave us the peace we needed for that day. We felt the prayers of so many friends. Friends who said they just felt nudged to pray...with no idea of what we were experiencing. We prepared and watched the sun go down on "a day to wait".
The morning of the ultrasound was alive with distractions. Shower. Get the kids ready. Get packed. Breathe.
We had felt the Lord moving us to take some time over the weekend to process whatever was in store. Thankfully, many of our friends and family felt the same prompting.
With the plans arranged we settled into execution. Get ready...get prepared...and go. We dropped our first three blessings (kids) by Grandmas and proceeded to the "office of answers". Maybe. We were hoping and praying. Nerves were there but somewhat at bay. We prayed. We walked. We rode the elevator to the fourth floor. We waited...
They called us in. Before us was the high powered ultra sound that was going to help us begin to make some sense of it all. Right? This is also where we met "Dr. House"...a man seemingly obsessed with finding the answer. It brought the most earthly comfort we had felt yet. We loved him right away...in his awkward sighs...in his abrupt way of sharing information...and in his apparent intelligence. We loved him even more when his dedication met our decision to continue the pregnancy with obsessive enthusiasm.
He told us it was definitely not Phocomelia. He also informed us that this meant it could be one of hundreds of different things...conditions...diseases...causes. We both smiled a little when he said it might be in the middle of a flight this weekend...where he may find the exact diagnosis that made sense of it all. Obsessive equaled comfort. We knew that he was going to figure this out...no matter what.
We watched the screen as the doctor sighed repeatedly. We saw what we had seen before. But...we saw answers to what we were unsure of as well. Was the baby's face developing? Were the other organs and brain healthy? Indeed, the doctor confirmed our baby had a healthy developed brain...and that all of the vital organs necessary for life were developing well. Finally...a slight sigh of relief.
The doctor continued to pursue the answers with a quiet exuberance. He told us what we both had come to understand. Our baby only had one developed left arm...and an underdeveloped right arm to the elbow. And our baby was without any developed legs.
He proceeded to leave the room a number of times. Every time he came back...he would instruct the tech to look at this or that. What was he doing when he left the room?
One time...he came back in and said that he needed to look at the hand. He needed to count the fingers. If there was a split hand...he might actually have a diagnosis. What!? It was obvious that he was researching everything...instantaneously...as it was surfacing.
Of course our miracle baby was determined to keep us from viewing the one hand more obviously bringing him comfort...as he had it near his mouth. The tech kept informing us that our baby was a mover. We watched as his little butt wagged up and down. We smiled. It felt good to smile. It felt good to watch the God-created life together...that was still progressing towards whatever plan was in store.
We had it! A picture of the hand. It was split. It was a thumb and two larger fingers. The doctor said this was a "split-hand". He had a diagnosis. He said it was rare. We would find out how rare later in his office. He seemed a little excited. We may not have been excited but something felt different. Knowing. Even if it wasn't a one hundred percent confirmed diagnosis...the doctor sounded fairly confident that this was where he was going to place his bets.
Split hand/foot malformation with long bone deficiency. This was the title of the document he put in front of us. He went on to point out that this had only been "reported" in 5 other families (gene lines) around the world...three of which live in the United Arab Emirates. Huh.
This was weird...but it felt better.
It felt better to know something. It felt better to hear the doctor say our child will have a chance to be born healthy and may have the chance to live. Will our child have any form of legs? Or will the rest of the right arm develop any more? There are still things we'll have to wait for (Was that little bump in the picture a male part?). There are still things with which we'll have to continue relying on our trust in God...and His plan. There are still things that we just won't know.
We still can't wait to meet the person God has created to join our family. We don't deny the challenges that await us...but we are preparing. We are not alone.
And now we're here. We're soaking up the grace, peace, and strength poured over us by the Lord our God. Dillon, Colorado is a beautiful sight when you understand that a Mighty Maker forged it all...the mountains...the trees...and the frozen rain that so elegantly blankets both at this time of year. God is God. We are his creation too. Through His son, Jesus, we can face anything. We can rest and know that by the power of the Holy Spirit...we are courageously enabled.
This is not the beginning...but it is the beginning of this chapter. Praise God for His hand on us all. Praise God for this life. Tomorrow is still a mystery...please join us in prayer.
-
Kristin's Prayer -
(an excerpt)
Thanks, Lord, for creating this beautiful and wonderful miracle. Our little one will have challenges - great challenges - that I can't even begin to understand or think about. I know we'll all struggle together and that my heart will be broken more times than I can count. But that's ok. This is God's plan for us, for our family, and we will learn to rejoice even in the midst of difficulty. We'll learn to tackle the challenges and be together. It's not that I'm not scared. I'm scared to death, actually. But I know we have Christ to see us through. I know we have supportive families that will help in any way they can. I know we have friends that love us and will encourage us. I pray, as I do for all our children, that this child will love the Lord with his whole heart and that he, too, will trust God even in the struggles. I pray for great friendships for my kids, for amazing spouses one day, for fulfilled lives that celebrate what God has given them. I pray that we can all focus on what God has blessed us with, what abilities we have, and not on what we don't have or can't do.
