The months keep on and Titus has been in our arms for a full 7 plus ten days.
It’s hard to find words for how grateful we are to have him. It’s frustrating for me because I love words, shadows of the Word, and it seems lazy to just shrug off finding the right ones. But, I’m often going blank on words these days and thankfully the Spirit knows just what to do in times like these. I also think that’s why people turn to poetry. Poetry allows us to speak more potently about our pain or joy. It’s like prose on steroids.
I get asked a lot about Titus, so I thought I’d try and answer the more frequent questions a little more fully here. But please feel free to keep asking in person! It blesses me. I’ve hesitated to write in detail about all of this publicly. I think it’s just another level of acknowledgment that I’ve been slow to take. But, here goes. First a pic!
pic by Elianna. One of the few with Titus and me.
1) “How’s Titus doing?”
I think I could answer this three ways and all are true but incomplete. First, he’s well. He had pneumonia a while back, but he’s been in good health for at least a month now. Also he’s growing and beautiful. And he’s progressing in the right direction. He can roll over, he can sit with support in a reclining high chair, he can grab toys and he has 4 teeth. The second way to answer this would be to say, I don’t really know how he’s doing. We still don’t have a diagnosis and I still don’t know what to expect from him. Thirdly, I could say, he’s delayed. He’s not where a 7 m old would normally be. He tested at or below the 1st percentile for most of his developmental testing. Usually I just say, “He’s doing well. He’s progressing and he’s healthy,” because it’s true and there isn’t time for the rest.
2) “What does Titus have again?”
I think people ask this because they know that there’s something potentially serious going on with him, and they assume they forgot what it is. But really, we just don’t know and have never known what his diagnosis is. There is a serious and fatal condition that we are trying to discover if he has. It is called Pontocerebellar Hypoplasia (PCH). It is a degenerative brain condition that affects the pons (part of the brain stem) and the cerebellum. We know via MRI that Titus has a hypoplastic (small) pons. They also were concerned that his cerebellum could be thinning, but didn’t see enough to say whether it is or isn’t.
It will likely be a year or two before we can rule out PCH, which would be ruled out by his good health and continued development. Yes, this is a long haul. I asked the dr. what his diagnosis would be if he doesn’t have PCH and the answer was that he wouldn’t have a specific diagnosis, just descriptive words to show the findings like, congenital hypotonia (low muscle tone) and hypoplastic pons and delayed myelination patterns (the wiring of the brain is delayed) and congenital esotropia (crossed eyes, which have now been helped quite a bit by surgery).
It’s hard to tell people that we don’t know and won’t know for a long time. No one can live in crisis mode for that long. So, I try to set aside the crisis and live day by day. But it is always there and it does creep up in varying degrees. It’s hard to ask people to walk this long road with us. It feels like a huge imposition, a black hole of neediness, but God knows and he is sufficient for this.
3) “So what are the next steps?”
When Titus is a year and three months (one year after his first MRI which he had at three months), he will have a repeat MRI to see what’s happening in his brain and compare it to the first one. The hope is that nothing is shrinking or thinning. MY hope is more than that, that his pons will have actually grown. Also, he’s in weekly therapy to help strengthen his muscles and maximize his progression. He sees his doctors regularly to monitor his progress and eyes.
We are also waiting on genetic testing, which is complicated and may not happen. It has to be pre approved by our insurance and has been rejected twice based on the scope of the tests. Our doctor is trying again, submitting one test at a time. We will see. I am in no rush here as the only news we could get from the tests is bad news. They are not able to rule out PCH with the tests.
4) “He’s progressing in the right direction, so that’s good, right?”
Yes! It is. But it also doesn’t tell us a whole lot in regard to whether he has PCH or not. Our doctor said that if Titus has PCH he would expect him to progress for while, no one could say for how long, then at some point in early childhood he would plateau and decline. Obviously, I don’t even like thinking about that and mainly just want to be happy for heading in the right direction. But, he does ask me to keep an eye out for him to plateau. I hate that.
5) “How are you doing?”
This is a question for me, not Titus, but I’ll address it anyway. It is a kind question, yet hard to answer in under an hour, and even if given an hour, I probably will not make much sense because the question is so broad I can’t figure out how to key in on anything significant. I just start to feel a bunch of stuff and can’t put words to it. I think people want to know that we’re OK. And we are. The Lord is taking care of us, which is usually what I try to say. I don’t mind answering it with a kind of “stock” answer, because it’s true, and it’s much easier than trying to form coherent sentences from the mass of emotions just under the surface. But if you want to know more than the stock answer, asking something pointed, like, “How are feeling about the genetic testing being rejected?” Or, “What’s it like to care for Titus?” Or, “Are you anxious about…” Or, “How has the Lord ministered to you regarding…” Questions like that give me a starting place, something specific to work from.
Also, it’s hard to know whether someone wants the (completely true) stock answer or a longer, deeper one that reveals more pain. So, there have been times when I’ve started in on something longer, only to realize I was talking to someone who was 5 min late for something. And the reverse has been true as well, where I’ve quickly given my stock answer only to stand around and realize they were hoping for more. This is just real life and no one’s fault and we’ll all have to bear with each other in these moments with the grace God supplies. Also, no one should feel guilty for only have time for the short version. There is something very glorious about being able to say, “The Lord is taking care of us,” and nothing else. We haven’t earned it, He’s really just carrying us and it’s good to say that to people.
Hopefully giving this update will help give direction to any of you who are praying for Titus and us. But here’s a list anyway.
1) Pray for Titus to continue to grow and develop and for his brain to grow!
2) Pray for us to be quick studies in helping him in therapy and loving him in every way we can.
3) Pray for our family to lean in to Jesus and His Word and His body during this time. There is a temptation to withdraw that I want to resist and I need God’s help to do it.
4) Pray for our other children to know God through this.
5) Pray that we would befriend faithfulness in our parenting and that physical and emotional fatigue would not lead to selfishness but be overcome by love through Jesus.
6) Pray that our anchor in Jesus would hold in the uncertainty and that it would hold if we face the worst and that it would hold if we face long-term disability.
7) Pray for sleep. We aren’t getting a lot.
So, that’s a lot to pray for and I don’t expect most people to work through the whole list, but maybe one will resonate with you and the Lord will lead you to pray for that. I’ll leave you with our sweet boy, with pillars of sibling love on either side. His life is blessed.