Praising Him in the Hallway

I took both of my daughters to the doctor for check-ups today.

That's right. BOTH of my daughters.

One of them is still in-utero, but I got a good peek at her via ultrasound! And let me tell you: she is just perfect.

Megan had her two-year well visit appointment scheduled for this morning. Ben has been holding his daddy hostage and under tight surveillance over the past few days, so I had a feeling he'd be alright with me being gone for a little bit. Meg looked so cute. Her little ringlet curls, pink bow, pink Crocs with a two-tone flower and her randomly matched (and self-chosen) outfit with polka dots and stripes. Pretty much as cute as a two-year-old could get.

We went into the exam room and it didn't take long for her to remember the shots she received last time. Amazingly, though, the nurse was able to record her statistics to report that she was right on track with her development.

There's something about going to the doctor now - even for a routine visit - that will never ever be the same. Not for me anyway. Hearing the words "normal" and "healthy" aren't just words on a check-off list. They are reasons to exhale. Be incredibly grateful. And still, very emotional.

It didn't all hit me until the nurse asked me to strip her down to her diaper and then offered me a hospital gown for her to wear to keep her warm until the doctor came in. Megan was interested in wearing the "dress" and as I started slipping her arms into the open slots, the tears flowed.

A hospital gown. My baby is wearing a hospital gown.

As much as our ten-day whirlwind experience with Ben at Children's Hospital seems like ages ago, it has only been more than two months. The wounds are still open. The emotions are still raw. I can still describe the smells we encountered, the dry taste in my mouth. There are visions that won't leave my mind. Episodes that replay in slow-motion in my memory. Seeing Megan in that tiny little hospital unexpectantly brought them all back.

The only thing harder was when the nurse came in with the needles. Meg would need a finger prick and a shot in her arm. I sat her down in my lap as the nurse prepped the supplies and told her what was coming. She understood. Her bottom lip curled under as she started saying, "All done? All done? All done!" She didn't need to be held down hard, but was anxious for when I'd say, "Meg, that's it. You're all done." I didn't cry in front of the nurse. But I wanted to.

I hadn't planned on her short visit being emotional. But I suppose that's just how it is, being 19 weeks pregnant and caring for a son with a (perhaps not to uncertain?) future.

Ben was still comfortable with his daddy when I returned, so I called my OB to see if they could take me for a check-up, last minute. How wonderful they've been, allowing me to call when I'm in the area or whenever I suspect it'd be a good day for me to be away for a bit. Such a blessing. This is the office where I first discovered my belly was housing two blessings. Over the past five years, I've shared the joy of that good news, the sadness of a miscarriage, the joyful birth of our Megan Joy and then the triumphant news of another strong heartbeat in Baby #4 earlier in January. They have been nothing but supportive, crying with me through Ben's diagnosis. And thankfully, they said I could come in an hour.

What a wonderful privilege, to be able to house and nurture one of God's greatest miracles. Seeing that little baby move, her legs tightly squeezed and her arms over her face, it is easy to be overcome with emotion. God did this. My God is a God of Life. A God of Miracles. And He delights in His creation. What a gift He has given, allowing me to be part of it.

There is no such thing as a "routine" visit anymore. We've always been grateful for good reports from our health care providers. My husband especially gets excited about the percentiles, learning how much our kids have grown since the last visit and how they compare with other kids on the bell curve. And even this new life that I'm carrying. It doesn't feel like I'm doing much to support her. But even through my exhaustion, my pain, God is nurturing and growing this life into a tiny human. What an honor. We've always been grateful. But our experience over the past few months makes us feel especially grateful. Unworthy. Humble. And reminds us never to take anything for granted.

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The past few days have been hard for Ben. Especially today. His back is so uncomfortable, with frequent back spasms making it very difficult for him to move at all. Andy and I have had numerous discussions about the steroids, the medicine that helps keep the swelling in his brain down. The majority of Ben's side effects right now appear to be a direct result of the steroids: back pain, muscle deterioration, dry mouth, and anxiety. We haven't heard him complain about his head in a really long time. Would it be possible to lessen the steroids, with the hopes that the side effects would subside, while still maintain the effectiveness of its purpose?

Andy talked with Ben's oncologist a few days ago, who gave us permission to experiment if we felt comfortable. As a medical professional, though, she couldn't explicitly recommend it. We had initially been prescribed a four-hour dosage schedule, but we had been extending it to six, sometimes seven hours without too much discomfort. We are currently administering slightly less as experimentation, seeing if it makes any difference at all. But I've got to be honest, I am very scared about him even hinting at a headache. Because those headaches aren't normal headaches (and this is coming from a girl who gets a pretty good one every once in a while.) Those headaches are mind-blowing. Literally.

This is unchartered territory. To be honest, I don't think anyone ever expected Ben to even live this long. If you saw that MRI, with the tumor tripling in size in a matter of just three weeks, you would have been surprised, too. When they said they expected him to survive a few weeks, they were thinking 2-3 weeks. There would have been no reason not to think that it wouldn't have continued to expand at that same aggressive rate.

Except it hasn't been three weeks. It's been more than seven. He is too scared to walk because of his back pain. But he has been eating, peeing, pooping, talking and remembering. As much as it doesn't look like the complete healing I've been praying for, that really is something of a miracle. The tumor, by all intents and purposes, should have taken over by now.

The steroids were prescribed to keep the swelling of the tumor down. To keep him comfortable. But as a result, he also has to deal with the weight gain in his face and trunk, the backpain, muscle weakness, etc. We are hoping that our dosage experiment might help alleviate some of his discomfort while still working to keep the swelling down. And the oncologist will be sending a physical therapist to the house to give us ideas on how to keep his muscles loose and flexible, plus the suggestion of a heating blanket and muscle relaxers to alleviate some pressure.

There are many possibilities still open, all of which we painstakingly consider daily. This is an awkward road that we have been asked to walk. Neither of us are healthcare professionals; we are just regular parents that want the best for our kids. We are praying for wisdom and are praying for God's best. We know that God will show us what to do when it is time. And that He will continue to give us enough grace for every single day, one day at a time.

For the immediate future, our goal is to continue offering Ben "Fatter Spatter" silly string, provide a colorful menu that satisfies his cravings (that are worse than a pregnant woman's cravings, by the way,) and watch his siblings explode in laughter when he says "poopies" as much as his little heart desires. It is very difficult to live day-by-day. As if every week could be our last together. It's exhausting. Draining. But we know that our time is precious. And every moment that we're able to keep Ben comfortable at home, in the presence of his most trusted family members, is a really really good thing.

I remember seeing a picture passed around Facebook a while back that has been on my mind a lot lately.

"Until God opens the next door for you, praise Him in the hallway."

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And that is precisely what we plan to do. Because He really has been so good to us. Much more than we deserve.