We have nothing in common

Is what I was thinking as I took a walk with Reagan in our neighborhood and met a new neighbor. Other than the fact that she seemed around my same age and had a daughter just two months younger than Reagan, I thought, “well…that’s where the similarities end.”

Her daughter had blonde curly hair like Reagan, but she was walking and running up and down their driveway, playing some game that involved colorful looking cups on the driveway. Things like this are so painful for me…that’s what Reagan would have been doing.

“Say hi…” the mom prompted her daughter.

And her daughter said hi and waved and walked right up to Reagan. Do you know how much is required to wave? It’s not as easy as you think, so if you or your little one can wave, be thankful. Reagan seemed a little put off by the girls invasion into her stroller space so I tried to maneuver it back and forth.

We chit chatted and the mom said, maybe we could have a play date sometime. Meanwhile in my mind I’m thinking, “oh yeah right.” And, “when is the appropriate time to clue this new neighbor into Reagan’s metabolic condition and the checklist my friends and I go through when we get together for play dates. When do I let her know that Reagan lost all of her milestones earlier this year, and how I’m kind of freaking out that her daughter is touching Reagan’s hand…is she sick?” The thoughts were whirling around in my head. So I kind of vomited on her in a short 30 second spiel.

Me: “Reagan’s not quite walking yet.”
Her: “Oh, our daughter just loves to be near people and will walk up to anyone.”
Me: “That’s sweet…we had a bit of a medical thing in April (a medical thing, really Anne-Marie)
Her: “I’m sorry…”
Me: “Yeah, she lost all of her milestones so we’re working to get them all back. She’s trying to walk in her little walker, when we left the hospital she couldn’t hold her head up, so we’ve come a long way.”
Her: “Well she can do it…I’m sure she’s working hard.”

That was basically our conversation in a nutshell. Meeting new people is hard. We’ve had all of our friends and family in our lives for years…sigh. New people…what do I do when I meet new people? And neighbors at that. Neighbors see a side of you that most don’t. At least that’s true for me since I walk our dog in the most ridiculous pajama outfits complete with bed head, boots and no makeup. I keep it real in our little circle.

Even though the last thing this new neighbor said was encouraging…she doesn’t know what we’ve had to endure. Yeah, I think Reagan will get her skills back, but they don’t come at the snap of a finger.

I wish that I didn’t have to do a spiel…maybe I don’t. Maybe I shouldn’t have. But Reagan is different. So I’m in this place of “what do I say or not say…what does this person need to know?” If Reagan was in a walker, the conversation would be more open to it, but in a stroller…was it necessary? I’m not ashamed of my daughter…I’m just talking about her like you’d be talking about your child. My conversations are just different. While you play stacking cups in your driveway, we play in therapy three times a week so that, one day…maybe Reagan can stack cups on the driveway, or play with sidewalk chalk.

As I finished our walk and got home to do a few things…I kept thinking that maybe we do have more in common than I wanted to believe. I met this lady and her daughter for less than five minutes. I don’t know her…but we met for a reason. And while I need to give room for my feelings to breathe…I won’t be satisfied with the quick judgements in my head. So instead of my quick judgements maybe we will have a play date in the future, and we’ll keep widening our circle and widening the people who know Reagan, pray for Reagan and can be clued into the miracles that are happening.  I know that’s the point…I know we’re supposed to shine a light on Reagan and what God is doing in her life. Reagan’s life is part of our ministry and her life’s ministry started super early. God’s using her in ways beyond our knowledge.

Let’s sleep together

What I mean by that title is…as a family, let’s all go to bed at 8:30 p.m. and…SLEEP!

Tuesday Reagan had her Nemours appt. and b/c she’s doing well eating (she has about 150g of food/day) and b/c she’s growing like a weed, and b/c she’s been able to tolerate seven oz. of formula via G-tube at most of her feedings, we requested to increase her food allotment and lower her formula volume by two oz. so we could try to fit all 28 oz. of formula in during the day and eliminate her feeding at night.

Well HALLELUJAH our team at Nemours agreed. They have been so pleased with her progress and so have we. It has been a loooooong road these past eight months. It has been the deepest valley I have ever known in life and I’m pretty sure I can say the same for Rob. So getting the news that we can go to bed at whatever time we want and sleep…is like the best Christmas present ever.

So, on Tuesday night, when I rocked Reagan for what is hopefully the last time while she’s feeding at 10:30 p.m. I got a little sad. Aside from being beyond exhausted for these past eight months and running on fumes I have loved rocking her. She’s still, she’s peaceful, and we fall asleep together rocking. She smells so good. She is so beautiful. I have brushed her hair, rubbed her feet, kissed her forehead and soothed her cries. [Full disclosure: I’ve also been thrown up on].

Our bond was strengthened during those night feedings. I needed them to reconnect, to learn about Reagan again. For the first few months Rob read all the Psalms and all the gospels. And as I type this I am actually getting tears in my eyes b/c those were some of the most special moments as a family. They were quiet, they were deep, it was just us (and Bauer tapping his paws in and out of Reagan’s room).

This last night, Reagan held on to my finger, just like she did when we met for the first time. She rarely does this.

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As she held my finger, I felt her heart beating. I will always remember that. The last week and a half, Reagan’s been sleeping through the night in her crib. She used to wake up about 20-30 minutes before her night feeding so I’d end up rocking her for almost an hour as it would take time for her to calm down and for Rob to get her formula ready. Her feeding would take 20-30 minutes depending on how much she needed to finish out her allotment for the day. Adding to our exhaustion these past few months, Reagan would wake up at 2 or 3 a.m. and cry for an hour and then be up at 5 or 6 a.m., coupled with just a 40 minute nap during the day. But this past week, she’s just been sleeping. It’s like she was letting us know, I’m ready to sleep again. I’m ready to keep growing and becoming a big girl.

I am so proud of her. I am proud of Rob and I. I am so thankful that God has helped us through these last eight months. There is no way we would have made it out alive and still loving each other without God. #prayerworks