Three Star Thoughtfulness

A while ago, Justin and I invented a ranking system for thoughtfulness. One star is doing something that someone asked you to do, even if you have to go a little bit out of your way. (Like when Justin texted me asking for grape gatorade when I was already at the checkout counter, and I left my spot in line and went back for it.) Two stars is doing something for someone that they didn’t ask for, but you knew they needed you to do. (Like when Justin sees that all of Jacob’s bottles are dirty and washes them before I can get to them.) Three stars is doing something for someone that they didn’t even know they needed.

Yesterday being Memorial Day, I went out shopping and grabbed a purse that I don’t use very often because it doesn’t function very well as a diaper bag. Inside, I found this:

receipt note

Note reads: “Your son will be just fine! Good luck & keep being strong! He needs you both!”

This was written on the back of a receipt for a dinner Justin and I had while Jacob was in the NICU. It was the first time we had eaten a meal together in several days. Jacob’s Mamaw and Papaw had come to sit with him and insisted we get out. We had a good rapport with our server, and we told her about our little boy. At the end of the meal, we found that she had left us these words of encouragement. Three star thoughtfulness.

I am beginning to notice a theme throughout my blog, which is this: There are a lot of wonderful people in the world, and I am fortunate to have connected with many of them in my almost-thirty years, yet somehow I didn’t really notice until Jacob came along.

Gratitude

I have sat down to write this post numerous times, and each time I have been so overwhelmed with the magnitude of what I need to get down in black and what that I have walked away defeated. My words are limited in their capacity to convey the enormity of the love our family has been shown since receiving the devastating news of Jacob’s disorder.

One of the first things that Dr. S told us when we received the news was that this was not going to be easy financially. Jacob would need very expensive medication and formula for his entire life. Putting him in daycare would be risky for his health (at best, downright dangerous at worst), so we were going to have to consider living on one salary. There would be other costs down the road – hospital stays, medical equipment, developmental support. We were counseled to seek support from social services, but our good financial habits (saving money in various IRAs, for example), disqualified us from receiving the majority of them. But none of that matters when you are a parent. You will spend every last dime keeping your child healthy, happy, and safe.

Since we came home, one of the most commonly uttered questions in our household has been “how are we going to afford x?” What is incredible is that every single question, and I mean every single one, has been answered. Not only have our basic needs been provided for, but provided for in such a way that we are living happily, comfortably, and safely – well nourished, in a beautiful and safe neighborhood, and surrounded by family and friends.

Here are just a few of the most striking ways in which our needs have been met:

One of our dearest friends leased us his beautiful rental property, moving us out of the slightly sketchy south St. Pete neighborhood into a charming gated community in Bradenton, not even a 10 minute walk from Jacob’s Papaw and Mamaw. Simply stated, this made it easier for me to stay home with my son, which is a wonderful gift.

The Shorecrest Preparatory School community set up a trust fund for Jacob and solicited donations. We also shared the information about donating on Facebook and at Justin’s company, Savvy Card. The fund to date has earned over $7000.

All Children’s Hospital forgave the $1100 bill we incurred for Jacob’s surgery before he qualified for Medicaid.

The National Organization for Rare Disorders and Hyperion Therapeutics (recently acquired by Horizon Pharma) sent us a nearly two-year supply of Jacob’s medication, which was previous costing us over $250 a month. It cost us nothing.

Two middle school students at Shorecrest chose to put on a benefit concert supporting their family’s favorite charity – Heifer International – and split the proceeds, donating over $500 to Jacob’s fund.

Countless people have shown up at my house with food and baby-holding arms (key to allowing Mommy to get a shower or nap every now and then).

My parents and Justin’s have both cared for us in numerous ways – financial, practical, emotional – demonstrating to us that being a parent never ends, even when your children are in their 30s and have children of their own.

I hope that one day Justin and I will be in a position to repay all of this. Until then, I have to trust that this verse is true: “Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you.” May all of you, every single person who made it possible, at least for the moment, for us to focus on our son rather than financial fears, be blessed in great measure.

An especially happy Mother’s Day

Jacob spent the day at the pool with me, his Daddy, and his Nana. I got to enjoy my first Mother’s Day with this beautiful face and the Florida sunshine, instead of a gloomy and sterile hospital room. This week ended in a completely different place than it began, and I could not be more grateful.

Here’s to all those mothers who are spending Mother’s Day with their precious babies in the PICU or NICU of hospital around the country. Stay strong, mamas. You are heroes to your children.

   
   

The day we were dreading finally arrived.

We were warned. Kids with citrullinemia end up in the hospital multiple times a year. But you can never be prepared for a sudden racking cough at 11:00PM that sends you scrambling to put together a hospital bag. 

(I have learned a few things about hospitals at this point. One is that you are always there longer than you thought you would be, so freeze your breast milk and throw the cloth diapers in the wash if you don’t want to come home to spoiled milk and a stinky disaster. #thingsgranolamomssay)

When we got there, it took two hours to get enough blood for bloodwork and get an IV in. No amount of singing and sweeties could calm the poor baby. Unfortunately, the crack team for hard sticks is on the day shift. Thankfully, ammonia was normal at 39. Still, Jacob was coughing and dehydrated, so he was admitted to the PICU where he is currently passed out in my arms from sheer exhaustion. I am typing this on my phone and on zero sleep, so apologies for formatting weirdness or incoherence.

As it turns out, we probably could have kept him home. But what if we had put him to bed and he had slipped into a coma? With citrullinemia, that danger is real. So instead we dragged our sleepy baby into the scary, germ-ridden hospital in order to be poked at for hours. It’s hard to feel like a good mom when a masked nurse is digging for a nearly invisible vein and you are wiping the tears from your child’s eyes.

Justin has been a trooper. As soon as we arrived I had to send him home for the formula I incorrectly assumed the hospital would provide to us. He is now going home again to let the dog out, so when all is said and done he will have driven 6 hours of the last 24 to and from the hospital.

Jacob is okay. We will be okay. Prayers will help. 

    
Update: Jacob was released from the hospital at 3PM on Tuesday 5/5. His cough seems to have diminished, and he has a great appetite. We are so happy to be on our way home!