“Now there are also many other things that Jesus did. Were every one of them to be written, I supposed that the world itself could not contain the books that would be written.”- John 21:25
Parking in the handicap spot always alludes to questions. A few days ago, a woman walked over to me and simply asked, “What’s wrong with the babies?” The questions don’t offend me half as much as they used to; and if we aren’t running low on time, I will take a few minutes to talk about the mutation. This particular day, the woman was not short of many questions, and she asked, “Are they going to get better?” When I responded with, “That depends on what you mean by, “better”.” She replied, rather quickly, “God will heal them”. My response, “He certainly can; and He ultimately will in heaven if not here.”
After her questions were satisfied, we parted ways, and I began thinking about some of her curiosity.
The question I get more often than any is, “How are the girls doing?”
I never know how to answer this, because the response depends greatly on what the person asking means.
I decided it would be appropriate to give a little update on this via the blog because I know that there are many praying and wondering.
Thinking practically, developmentally, the girls are at a very similar place as they have been for over a year now. They do not sit unassisted, cannot hold on to a toy for too terribly long, and are still not using words. They certainly have made some strides in interaction, and become more and more interested in the world around them with every passing day. We have been fitted for wheelchairs and those should be in shortly. From a positional standpoint, I am excited for the girls because I think they will be more comfortable in these than some other seating options. From a practical standpoint, your guess is as good as mine for how we will get out and about with two wheelchairs. I took the girls to the zoo and pushed two strollers for a practice round, and minus a lot of stares and some awkward turns, it wasn’t too challenging. I guess I just assume that the God who wrote this unique story will give us the grace to figure that part out when it comes.
Medically, we are still figuring out seizures and medications for Bailey Grace. She has a seizure basically every night, and continues to have some neurologically-off activity during the day at times. Ally’s seizures are controlled by a medicine that doesn’t cause too many terrible side effects; and for that we are grateful. One out of two ain’t bad, right?
So, will their development improve?
We are still waiting on the case publication for the HECW2 mutation to come out, but from the connections with other parents that we have made, we have realized that because the girls have a different variant than every other child known with the mutation, we are not going to get much more information regardless. We try to not concern ourselves with performance or prognosis, however.
Because we believe Ally and Bailey Grace are fearfully and wonderfully made- uniquely woven by our Creator who makes no mistakes. We do not have expectations that their development will regress or progress. Not because we don’t believe it could happen- simply because our hope lies in something-in Someone- much greater.
“I do not occupy myself with things too great nd too marvelous for me. But I have calmed and quieted my soul…”- Psalm 131:1-2
There is so much our family could focus on that would breed both expectation and frustration. Yet, as the verse in John 21 says so eloquently, why would we fixate on that when there is so much that God is doing in and through the lives of Ally and Bailey Grace?
There is not enough time in the day to write out all the ways we have already seen God’s faithfulness in this journey. Lately, as I have prayed for eyes to see, He has woken me up brimming with gratitude for all the blessings- and I will tell you that many of those things, the world would see as a curse.
It all depends on the lenses we are wearing, doesn’t it?
Our ability to see God in all things has a direct correlation to whether or not we are filling our minds with truth or lies. As we look at the Word of God, it is very clear that some of the greatest trials were often the biggest blessings when filtered through God’s loving and sovereign hands.
So much so that, these days, when obstacles or unpredictables or new hards come up, I smile because I can’t wait to see what God is up to. I’m on pins and needles, expectant not in a change of circumstance or a lifted trial- but expectant in the God who restores and uses all things for His glory and our good.
And, don’t you see?
Whatever brings Him glory always brings His children good.
This is the freedom of the Gospel.
This is what is offered in Christ Jesus.
Saving grace not only for eternity- saving grace that reaches the daily details of each of our lives- from this time forth and forevermore.
What’s not to rejoice in?
Friends, God promises that He will restore to those who claim Him as Lord all the years that the locusts have stolen (Joel 2:25).
What He sent- what He allows- is only purposed for reconciliation and oneness with Him.
This leads Hugh and I to be able to place priority not on the what-ifs or the whys involved with our precious daughters’ lives and instead to focus on the grace of God that is being lavishly poured out all around us and them.
We don’t have to dwell on the unknowns when we know that He’s a good, good Father.
We rejoice not in the suffering but in the One who ultimately conquered all the brokenness of the world at the cross.
And- when our cares are many- His consolations (His comfort) cheers and delights our souls (Psalm 94:19).
Each and every time.
Oh, how I pray and long for this in each of your lives as well.
His grace is enough- enough for all of you, all of me, all of our unimaginables and greatest tribulations and worries come true.
He is enough.
In all things. At all times. In all ways.
6 thoughts on “Update on the Girls.”
I needed to hear this at this exact moment! Thank you Morgan. Thank you for sharing the update on the girls, and for speaking God’s truth to me this morning.
Your girls have blessed me through your spirit of faith. Thank you for sharing your family with me.
What a beautiful message to all parents: to see each of our children as God sees each, fearfully and wonderfully made-His creation, not who we want to create them to be. Prayers continue for you and your precious family.
Love this, Morgan ❤
My son was recently diagnosed with this same thing. I would love to be able to talk with you in regards to our special children.
Jeff- my email is firstname.lastname@example.org. Would love to answer any questions and/or connect!