“Therefore let us go to Him outside the camp and bear the reproach He endured. For here we have no lasting city, but we seek the city that is to come. Through Him then, let us continually offer up a sacrifice of praise to God, that is, the fruit of lips that acknowledge His name.”- Hebrews 13:13-14
We were undiagnosed and unaware.
I remember begging God- begging Him with all the faith I could muster up within me- to give us answers.
I thought a diagnosis would give me what I needed to press on.
Isn’t it what we all do, really?
Envision the next thing as the thing that is necessary?
“For you have not come to what may be touched…”- Hebrews 12:18a
I pictured the meeting. Those of you in the genetics world know exactly what I mean. The one where, after getting the call that they have the answer, you go in and your doctor spends hours talking to you about the ins and outs of whatever is going on with your child/spouse/parent/loved one. I envisioned tissue boxes and sighs of both relief and disbelief.
July 19, 2016.
The case publication for the mutation the girls carry came out earlier this month. It’s funny how interested the medical community becomes whenever you have twins with a rare genetic disorder. I had fully anticipated that this case publication would be vague, futile, and probably not that helpful for our lives moving forward. In fact, I didn’t even read it when we first got the word that it was out. I got the email to schedule the meeting and didn’t even recognize it as such.
God had different plans. (Story of our lives, right?)
God gave me the meeting that I had desperately wanted for almost three years.
“Things shall not remain as they are.”- Ezekiel 21:26
I am treading very, very lightly here.
Very lightly because we now carry educated estimations-not facts-that are both personal and, in some ways, appropriately private.
Very lightly because this information does not necessarily apply to all (all seven of us, ha!) of the families with this mutation but rather for some specific variants of it.
Very lightly because I do not think that there is much benefit to airing out all the ins and outs at this time.
Very lightly because ultimately, as Psalm 139:16 so eloquently states,
“In your book were written, every one of them, the days that were formed for me, when as yet there was none of them.”
Yet, there are vague things that need to be shared simply because we refuse to not let God get the full glory that He deserves in this story.
After all, things are most radiant in the Light.
So, as we sat in this blessing of a meeting where many if not all of Hugh and my thoughts were both appropriated and encouraged, a handful of things became clear:
The HECW2 mutation affects all major organs.
It gives the girls an inability to regenerate adult brain cells and has the potential to kill the ones that are already present.
Ally and Bailey Grace’s time on earth is going to be shorter than any parent would prefer.
I typed and re-typed the sentence above; the words feeling both unnatural and dramatic.
The truth is, no one knows what is going to happen to any of us. This is certainly factual- yet, for our girls, it is not a possibility but an assumption. The ins and outs of that statement are not going to be shared even within our immediate circles. God determines each of our days and the boundaries and lines are drawn by Him- and they are good.
Yet, this question that we have wondered but not even had the strength to ask was not answered but addressed in the meeting– and I am forever grateful for this particular physician and the respect that he showed us by bringing this unsaid to the table.
So, now what?
As we have been processing many things that were discussed that day, God’s Word has been as alive to me as maybe ever before- so much so that I almost want to simply type out about a hundred verses that would sum up how I feel.
To put it simply and bluntly: I do not fear the day of death that has been determined for our girls.
I know this may be extremely heavy for many of you. But I need you to hear me say that I do not fear not because of anything to do with this earth but because I know Who awaits them in heaven. Did you see that? Not what awaits them in heaven, but Who. Do I love the thought of our girls sitting and walking and running and jumping? Of course. Do I desire no more pain and no more suffering? A resounding yes. Last night, as Bailey Grace was having a seizure, I continued to whisper the story of the redemption of our bodies to her- the reality that one day, she won’t have to take seizure medications because she won’t have any more seizures. I long for this day for her. Yet- the thing I long for most is for Ally and Bailey Grace and all of us to be with our Maker because it is then we will be truly and fully and wholly free.
It is Who is in heaven that makes it heaven- not what will be gone or what will be present.
As I become more and more intimate with this Savior of ours, I long for the day that we all will be face-to-face with the Lord of lords and King of kings.
“For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.”- 1 Corinthians 13:12
Face-to-face with the Creator and Sustainer and Redeemer of the entire universe- knowing fully the One who fully knows us.
This is what we have to look forward to.
Friends, there are so many lessons and verses and encouragements I look forward to sharing as we continue on in this journey, but today, I really just want to confidently tell you that an intimate relationship with God- made possible only through the One who went outside the gate and shed His blood for us so that this relationship could be possible- is all that matters. It really is. He is giving us peace and joy and passion in the middle of a beautifully painful story He is writing- and I smile knowing how big His plans truly are.
“But as it is written, “What no eye has seen, nor ear heard, nor the heart of man imagined, what God has prepared for those who love Him.”- 1 Corinthians 2:9
His plans for us are good. His plans for Ally and Bailey Grace are good. His plans for you are good if yet you would place your trust in Him.
We do not know how long we will have our precious girls with us, but we do know that only God determines that.
We do not live every day in fear of those days, for we know the One who holds our hearts and will carry us through whatever He allows and ordains.
The truth is, this meeting on July 19,2016 is not the meeting that really matters- this meeting God Himself face-to-face- that is all this life is truly about.
Simply put: we have a good, good Father who we know can be trusted.
At all times.
In all things.
No matter what.
To Him be the glory forever and ever.