This blog post is being written in the afternoon of Monday, July 29, 2019.
“Suffering is not a haphazard thing that comes in. It is all part of the plan. Suffering is part of the road to the eternal glory. It is just as much included in the plan as all the rest. Why should there be this interlude of suffering between the grace and the glory? ‘He himself will make you perfect, establish, strengthen, settle you’ (1 Peter 5:10). He will perfect you. The word here translated ‘perfect’ means ‘to repair’. It is precisely the same word that you find when you read that the disciples were mending their nets, and it means to finish, or to put into repair. There are many little rents in us, and the Lord allows us to go through this little while of suffering so that he may repair the imperfections. There is not here a child of God who is not the richer and the holier for the little while of suffering.”
~ Archibald Brown (1844 – 1922)
It has been many weeks since I updated everyone. I’m so sorry, but life continues to bowl us over, and doing things like writing blog posts is quite challenging. I’ll try to update here without making this too, too long.
Last Wednesday, July 24, Lilyan turned ten. Double digits. A pretty big birthday. She also had her twentieth surgery that day.
This coming Wednesday, day after tomorrow, it will be exactly nineteen weeks since Lilyan’s first surgery, (the night we came so very close to losing her), and it will also be her twenty-first surgery. We are still running into people who were in that crowded, operating room that night, fighting hard to save our girl, and these people continue to remind us of just how close it all was. We never lose sight of what an amazing gift it is that she is still here with us, but life continues to be very, very hard.
The last time I wrote, I shared that Kathryn was fighting her third urinary tract infection (UTI) in as many months; that Roslyn was in the hospital for a serious UTI herself, and on IV antibiotics because the bacteria her body continues to produce is dangerously resistant to antibiotics now; and that Colin was showing great improvement in his seizure activity after starting his new anti-seizure meds.
Well, since that post, Kathryn has had two more UTI’s, making that five in five months, and no one knows what’s causing this except that it’s, in some way, related to her cerebral palsy. She started on a new antibiotic today. Also since that last post, Roslyn has been back in the hospital again and came home with another PICC line in place. That was removed about ten days ago, but she has continued showing some symptoms (mild, but still there) of another infection. To date, her culture isn’t showing an active infection, so we are just watching her for now, but it’s so concerning that she can’t get completely free of these symptoms. And Colin began exhibiting signs of seizure activity again. Our neurologist increased his dosage quite a bit, and we are watching him closely. Things have improved at least some for him.
We are all still dancing to the tune of a surgery every week for Lilyan, and after her surgery two weeks ago, our surgeon explained that her healing seems to have halted a bit. She made it clear that we still are not even in the final stretch of this journey. This was so very discouraging for us to hear, because I think that we had all, on some level, begun to think that we were nearing that place. I hit a very low point again that evening.
We truly have no idea how many more weeks/months this is going to last. Thanks to our careful quarantine strategies, constant use of Juice Plus, and God’s gracious protection, everyone has remained healthy. We are so thankful for this, but we are so very sick of being isolated from the world.
We sometimes start to wonder if we’re being too crazy-overprotective, but every time we start to think that, our surgeon makes it very clear that it’s critical that we continue to live this way. Lilyan must have these surgeries every week, and if she should get even a cold, she would not be able to be put to sleep for the necessary debridement of her wound, and wound VAC dressing changes. So we remain mostly cut off from the world around us. This is not fun and it’s not easy.
On top of this news, there has also been more bad news concerning the hardware in Lilyan’s back. At the base of this large amount of metal in her back, things were anchored to the piece of sacrum that Lilyan was born with (she is missing most of the sacral bones). Sadly, that anchor point fractured through her little sacrum. This loose end is now protruding away from her spine and into the soft tissue in her lower back, putting her at risk for more tissue damage. You can see this in the X-rays below, especially in the profile view.
Her spine surgeon will have to do another surgery to open up her lower back and snip off this end, but everyone is trying to determine the best and safest time to do this surgery. In the meantime, because it’s most prominent in a sitting position, Lilyan has to spend almost all of her time on her stomach. This has been another emotional blow for her, adding to her feelings of helplessness and loss of normal life and independence, but the other kids work so hard to find ways to keep her included in daily life and actively engaged mentally and as physically as possible. Our kids are working so hard to help us care for everyone, and we could not survive with out their loving and unselfish service right now.
Through all of these many, many weeks, Scott and I remain as vigilant as we possibly can in continually sending out our mommy/daddy radar to see how everyone is faring through all of this. Some days are better than others. When needed, we hold family meetings to allow everyone to share their feelings and even weep openly to clear their minds and hearts of the emotions they are carrying. Then we all wipe away our tears, pull together again, and march forward. We often end these exhausting (but critical) family sessions with something fun, like a late-night movie. When ice cream can be part of that conclusion, that’s even better.
God has so lovingly used this time of isolation to draw all of us closer to each other; to refine us each individually and as a family; to build character; and to reveal selfishness, resentment, refusal to surrender to God’s plans for our lives, lack of faith, and fear hiding in each of our hearts.
As my quote above says, “There are many little rents in us, and the Lord allows us to go through this little while of suffering so that he may repair the imperfections.” What a loving and gracious God we have. I’m not always able to proclaim that. I am sometimes groveling on my face or shaking my fists or so very lost in my tears while begging God to bring this season to an end, that I lose sight of this beautiful truth. But He always brings us through those times and back to places where we can see His hand and His love in these clouds.
He has also continued to provide for us in practical ways: gifts of meal cards, or cash to provide for food in the hospital or the many necessary ordering-out meals required right now as we mostly live in survival mode; money to purchase all of the children’s curriculum for this coming school year; and many other things. Thank you so much to all of you who have been His instruments in providing for our family in these ways. And more than we can ever say, thank you for your prayers. They are truly what keeps us going.
And while we haven’t been able to do any more park days because it’s usually too rainy or too hot on any of our appointment-free days, He has provided other ways for us to come up with creative and fun things to do together as a family. Like some days to just relax and swim together in our pool. You may remember that this pool was a Make-a-Wish pool for Lilyan four years ago. She asked for this so that “my family can all swim together in one pool.” How heartbreaking that she is the one unable to be in the pool at all this summer. But, in spite of some periods of crying and expressing sadness, this girl continues to be courageous, and strong, and to rise above the darkness, and to look for the beams of sunlight. She is an amazing example for all of us.
Here are some photos of our past few weeks since my last update, including one of the most exciting and fun things that God provided for us to do. Dear friends sent us a huge box of giant lanterns to light and release into the sky. On one of our most recent hardest days, we chose that night to release them. We all watched the movie “Tangled” to get us even more pumped about our own lanterns, then after the younger ones had slept for a couple of hours, we woke them up just before 10pm and spent the next hour or so eating popcorn and releasing our lanterns. It was a magical night. There’s even a video below that will give you a little feel of what a special time it was for all of us.
Thank you for praying for all of us and especially for our tired-but-strong little Lilyan. We will eventually get through this. We have all discussed how important it is that we not waste one moment of this time. Whatever lessons God has for us in this, whatever things He wants to reveal to us about ourselves, each other, family unity; teach us about how to grieve or how to celebrate or how to be grateful; show us about how to comfort others, express emotions in healthy ways, reach out for help . . . we want to be sure we can look back and know that we drank it all in, embraced it all, and didn’t waste one moment of these months.