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.