Micah's Diagnosis. A Year Later.

Micah's Diagnosis. A Year Later.

We waited three and a half hours to see the Neuro Surgeon that day.

We sat in those hard chairs with a fussy ten month old and took turns walking him around the waiting room. We watched our favorite Peds Surgery nurse take back patients one by one, all the while, waiting on the Neuro nurse to call Micah's name. We kept looking at our watches, because we had a benefit to attend that night and perfectly scheduled grandparents to keep Selah for that appointment and then the benefit. The minutes turned into hours and we knew we weren't making it.

Finally. They called our name.

Micah had been having trouble stabilizing his blood sugar so our pediatrician wanted to take a peek at this pituitary gland on a MRI, just to rule it out. We totally weren't concerned at all about this MRI. But he called me a few days later and asked me if I was sitting down and if Brandon was home. I remember telling him Brandon was upstairs getting ready to go into work (he works night shift), and I told him I couldn't sit down I was cooking supper. (Mom's don't sit down at 5 pm.)

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Sweet Days

The kids are napping. My house is quiet, except for the steady hum of the dish washer. And I felt these keys calling to me. So here I am, filling you in with our summer days.

I can't believe it's already half way through the summer. I walked into Hobby Lobby the other day and was bombarded with Christmas decorations! What in the world?!

Part of me wants summer to last forever, but then again, there's something inviting about a crisp, fall morning with hot coffee and football weekends. But for now, we're living in our bathing suits and puddle jumpers. My hair stays in a messy top knot (not the cute kind on Pinterest) and my yoga pants are worn thin. It's hotter than hades down here in the south. I walk out of our house and my glasses immediately fog from the humidity. But this summer has held sweet days for our family.

Micah is doing so well! He is gaining weight and WALKING everywhere! My baby with Cerebral Palsy is walking. It's truly a miracle. He's started saying a few words, and we'll say, "Raise your hand if you love Mommy." And every time he raises two! It's the cutest thing ever. We haven't been in the hospital since May and every day has been such a blessing. I'm breathing in these baby smells and holding on to every second of this season. It has been such a needed season of rest for us and we couldn't be more thankful.

Selah decided she was ready to potty train last week. Bahahaha!!! I still can't believe her! I am always late with everything, like taking the bottle away, pacis, big girl bed, blah blah blah... I have been in no rush to potty train her because quite frankly, diapers seem easier. Since I'm not going back to work in the fall, I haven't been rushed about it and figured when I was ready, we'd give it a shot. Well last week she came up to me and said, "Mommy, I potty twain now." She took off her diaper and went to the potty. Also, I realized we could save about fifty dollars a month...

So we spent last weekend getting her Elsa panties and M&Ms at Target. Monday she had three accidents and hasn't had one since. I guess she was ready. Today we ventured out and to my surprise, waited to potty until we got home. I took extra panties and shorts because I was positive she would have an accident, but I was wrong! Most of me is so incredibly proud of her. She makes up her mind about something and does it! That's a great quality. The other part of me is so sad she's not a baby anymore. She is looking more like a little girl everyday. But, whether I like it or not, she's growing up and I love the little girl she's becoming.

Brandon booked a trip last October when Micah was so sick. He heard on the radio that people who have something to look forward to in life are much happier. October wasn't a happy time for us. That whole season when we were trying to keep Micah alive was stressful to say the least. We had no idea what our life would look like this summer with him, but we booked the trip anyway. And I'm so thankful we did.

We have a thing for cruises. We like boats. We like all the food. We like the ocean. So we left our babies and every single one of Micah's specialist's number with our favorite nanny ever and went to the Bahamas. She is super responsible and just has a mama heart. She has been with us since the beginning of Micah's story, so she knows his medical needs very well, and loves my babies something fierce. Everyone told me, "I can't believe you're leaving your babies for a week! I could never do that!"

Well, I'm not gonna lie, it was hard, but I promised God my marriage would always be my first ministry. Time alone with my husband, investing in our marriage, is loving our babies well. I spent a whole week eating without being interrupted, drinking fruity umbrella drinks, and reading. Among other things you do with your husband when you don't have kids for a week. (Ahem.) And the sleep! We slept like we haven't slept in several years now. It was so wonderful!

We were able to reconnect. We talked, we dreamed, we planned, but mostly we just enjoyed one another. Father breathed the sweetest love into our marriage that week and made me want to marry that man all over again.

Not only was I able to fall in love with my husband again, but I did the same with Jesus. Everywhere I looked, He was so beautiful. He spoke so much truth into my heart that week. At one point, I was sitting in a beach chair, laying out in the sun, feeling the ocean breeze blow against my face and I started sobbing. I'm not much of a crier. I always end up with a headache later and it feels like it takes up so much energy. But it was as if all of the hard we have walked through in this year, just released.

And I let it.

I let myself feel the weight of watching him turn blue all those times. I let myself feel the fear of every hospital stay, every surgery, and every diagnosis. For the past year, I have lived in a constant state of panic. And to be able to release that was so freeing. I remembered every piece of the hard and thanked Papa for being right there through it all. He was so faithful then.

There will be more hard days ahead, but He'll be there again, right beside me. Loving me, drawing me to Himself, and inviting me to come in closer. But these sweet days of rest are so lovely. I'm finding Him here too. Lots of Him. Parts of Him I never knew existed. These days feel normal. And normal isn't something we've felt in a while. I'm soaking it all in over here.

I just can't thank you enough for following along with me in this journey. So many of you have emailed the perfect encouragement when I feel my voice is just another in all the noise. You, friends, have prayed for my baby and for my family. You've invested eternally into our lives and for that I am so thankful.

I'm excited to share with you that pretty soon things will look a little different around here. But it'll still be the same me behind these keys, typing away in my not so cute top knot and thin yoga pants. Sharing with you the sometimes ugly parts of me, hard and beautiful parts of following Jesus.

I love you, friends. I'm honored you meet me here. Praying for you today. That today would be one filled with warm coffee, belly laughs, and joy no matter what circumstances you find yourself in.

-Jessica

Micah's First Birthday

One whole year. Hospital stays, surgeries, G tube, GJ tube, cerebral palsy, hours and hours of therapy, all of these things happened in one year. There were several moments throughout this past year, Brandon and I looked at one another and weren't sure Micah would make it. When he was aspirating and we would find him blue. When his sugar would drop so low so fast. When small viruses that are nothing to us, turn into week long hospital stays with complications. Today we celebrated this sweet boy and all he has overcome. He's a fighter, my son. And everyone should be celebrated on their birthday, but he fought extra hard for it.

It was a beautiful day.

I decided to make cupcakes instead of buying them like we normally do. They're not the prettiest things I've ever seen, but boy, were they good! My hubby liked them too because making them saved us about 60 dollars. I'm not going to lie, they were yellow box cake. But my mom gave me the recipe to the best ever lemon icing:

Cream 1/4 cup softened butter with 2 cups of powered sugar. Scrap the sides of the bowl and then add 2 tablespoons of lemon juice. Mix again. Makes enough icing for 12 cupcakes. Seriously it's the best icing you'll ever have!

We have TONS of formula cans around here because Micah has to use a special hypoallergenic formula for his tube feeds. So I started saving them a while back because I saw some potential in them. I tied some twine around them, put some grocery store daisies in them, and they just make my heart so happy. I thought they went along perfectly with the woodland friends theme.

And while I'm sharing recipes, you can never go wrong with Hawaiian Punch, pineapple juice, and Sprite.

If I'm being honest, it is so much easier for me to share my heart with you, than to share things like this. Mainly because I'm sure someone out there has done this better. Their house is more perfectly decorated, their ideas actually turn out like their Pinterest boards, and their photos are perfectly edited. For heaven's sake, half of my friends are photographers. Not me.

But that's just the thing. I had all of this pressure on making his first birthday perfect. We look at our Facebook and Instagram feeds and feel inadequate and start the compare thing. But WE are the ones that put pressure on ourselves.

What really mattered were the ones around this table. The precious friends who have watched us fight through this first year. The ones who have cleaned my house, brought us meals, babysat, fed the dog, and listened to me when it all was just too much.They are the ones who really knew what a celebration this day was!

They are the ones that mattered.

He is what mattered.

Micah's sugar dropped really low right in the middle of the party. So we rushed to get a cupcake in front of him. And everyone stared knowing that this kid eats NOTHING by mouth. A few months ago, he wouldn't even let you touch the area around his mouth because of his severe oral aversion.

Then he did this.

And the Father reminded us all again that He is faithful and His ways are perfect. What HE says about Micah, is what matters. We were honored to celebrate Micah yesterday. But really we were celebrating a very faithful Father who has carried us through a year of hard, really really hard. And today we are up on the mountain top shouting of His goodness and thanking Him that He brings beauty from ashes.