First, THANK YOU all so much for your continued support! We are so grateful for all of the love for our Hannah. It truly takes a village, and we are thankful for ours. 

We are gearing up to leave for Duke in a little over a week. Hannah has been dealing with a mild viral illness this week, so we’re hoping that she recovers quickly. (The photo is a very unusual circumstance - Hannah falling asleep in my arms. That usually only happens when she's not feeling well.) And then we’re going to try to avoid new germs (to the extent that we can) so that we can make it through both the stem cell infusion and the g-tube placement. Having to reschedule either or both of these would be very, very difficult. So please pray that all would go smoothly! 

I wanted to share that opening up to encourage financial contributions to our family has been hard for us. We did it because we knew that people wanted to help, and we wanted to give them that opportunity. We also, I think, are still wrapping our minds around what it’s going to take to raise Hannah well and what our limitations are. I recently learned that it takes between $1.4 and $2.4 million to raise a child with disabilities through the age of 18. That is TEN TIMES the amount that it costs to raise a typical child. And, of course, it doesn’t stop at age 18. That amount of money would be every single penny of our salaries (plus some) over the course of those 18 years. That’s obviously not possible. 

We are fortunate to have great healthcare coverage, and we are fortunate to live in a state that supports children with disabilities well. We have gotten pretty good at maximizing our benefits. But there will always be things that we want or need to do that are not covered by our insurance. When we first did a month-long intensive therapy, I applied for and received a grant to offset the cost, which was a help, but a lot was still out of pocket. That was fine. Then that intensive led us down the path to supporting Hannah’s vision more. That was not fully covered by insurance, so we paid the rest out of pocket, which was also fine. We have paid out of pocket for a number of functional medicine tests and supplements and compounded medications and equipment. Also fine.  Then we applied for and won a giveaway contest for another intensive. Then this stem cell treatment opportunity came up. It started to sink in that these would not be one-off events and that continuing to dip into our savings would become untenable at some point. There will always be these kinds of things that we are going to seek out for Hannah. In fact, I have a list of other things that I want to look into at some point. While we aren’t going to travel the globe in search of every obscure treatment or therapy, we will continue to try to make her life better in thoughtful, reasonable ways while also giving her as much of a “normal” childhood as possible. And we have gotten pretty good about finding resources, advocating with insurance, seeking out grants, etc. All of these things will help, and we will continue to seek out these various resources. But we will likely always need support from others to make everything happen. 

I’d like to think that Sean and I are pretty average middle-class folks when it comes to our finances. We’ve done a decent job of saving over the years. Because we are both in ministry positions, our salaries are average, so our savings are modest. Like most people in our socioeconomic class, we have saved for things like major home improvements or unexpected expenditures, new cars every few years, vacations, and a new home down the road. We have an ABLE account for Hannah’s future and some college savings for Cara. We have very common, modest dreams: a nice home, reliable cars, modest family vacations every now and then, a good education for our children. Those haven’t changed. But what has changed is that all of those dreams are now slightly different (and slightly more costly) because of Hannah’s disabilities. Our next home will need some features that help keep Hannah safe. It may need to be in a location that will support Hannah best. Our cars will always need to be large enough to accommodate Hannah’s wheelchair. Our vacation options will be limited based on what Hannah can enjoy and where she’s welcome. And where we stay on those vacations will need to meet her needs. It’s a slight tweak in what our dreams are, but it will take more to make it happen.

And, of course, our long-term goals have changed and will continue to change. We will likely never be empty nesters, at least not truly. Even if Hannah lives outside of our home, we will still be her primary carers and inner circle. We’ll always need to be close to her and care for her – maybe in our home, maybe not, but she will not be able to live independently. And, of course, the big, looming concern is that we need to plan for her future after we’re gone. That’s one that keeps me up at night.

I say all of this to share that while the burden of extra costs is there, the dreams remain the same. Sean and I have never dreamed of fancy cars (okay, Sean does dream of having a Corvette one day, but he’ll only get one if he inherits it!) or vacations at the Ritz in Paris. And we also recognize that we are privileged to have even modest dreams. Many families will never own a home or purchase a new car or take a vacation. While Sean and I have worked hard, we were also blessed to be born into stable, middle-class families and given great opportunities from the start. We want to be able to pass those opportunities on to our children, as well. It’s just that now we will need to depend on others more than we originally imagined to help make that possible. Thank God for the Church and for his command to care for one another. While imagining Hannah’s future after we’re gone does keep me up at night, I take comfort in the fact that the Lord has commanded his Church to love and care for the least of these. I know that someone (or several someones) will take that call seriously, and Hannah will never truly be alone. And I'm grateful that we are being forced into depending on others even more because it will stretch us and grow us more into the people God wants us to be.

Being a good steward of the gifts that we have been given is something for which we truly strive. Whether those gifts are our salaries, our benefits, state resources, grants, contributions from friends, or our children themselves, we seek to steward our gifts wisely and prayerfully. I’m sure that we don’t do so perfectly, but we try. And we will continue to try.

For all of you who given us gifts, whether large or small, thank you. We don't take that lightly, and we hope that you know that we will do our best to steward those gifts well. All of the gifts that we have received recently will go toward Hannah’s immediate needs, which will help us keep our savings in place for some future family dreams. Being able to keep those dreams alive is truly a blessing.