I still cringe when I think back on the conversation Scott and I had while driving to the hospital before Ellie was born. We talked and laughed about the impact this little girl of ours was having on our savings account already. The less-than-ideal insurance we had while Scott was in graduate school didn't have maternity coverage so we were paying out of pocket for my pregnancy and delivery. We joked that when the time came for her to go to college and get married we would tell her sorry, but we used your college fund to pay the hospital bills when you were born. The thought never even crossed our mind that she would be anything less than perfect or that there might not be a possibility of college or a wedding in her future. Little did we know that in just a few short hours the perfect life we had envisioned for our daughter would be shattered and that we would give anything in this world to have college and marriage be a part of her life. Also, the joke was on us, because the cost of my delivery that we were making such a big deal about would soon look like pocket change next to all of the medical bills that quite literally made Ellie our million dollar baby.
I have hesitated writing this post for several months now because I feel a little uncomfortable discussing our personal finances on my blog. But, after experiencing such an unbelievable outpouring of help to cover Ellie's medical and funeral expenses, I want to share what that money was used for and to try and convey what a huge blessing everyone's generosity has been for us as we try to move forward.
I've talked a lot about how demanding Ellie's day to day care could be, but if all we had to worry about was just taking care of Ellie it would have been completely manageable. The more challenging and overwhelming part of having a medically complex child was the financial worry. Just to paint a quick picture of how fast things can add up when caring for a trach and feeding tube dependent child, here are a few examples of what Ellie's care cost:
Trach/g-tube supplies and equipment= $4,000/month
Specialized formula (Peptamin Junior) = $30/day
Hospitalization = $100,000/week (that does not include doctor or surgical bills)
Lifeflight = $12,000
Genetic Testing = $10,000
Monthly Synagis Shots (RSV vaccine) = $3,200/month
Chest PT vest = $15,000
Electric Bill while running medical equipment = doubled
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| The month we brought Ellie home with her trach our Electric bill more than doubled. This is how our electric usage changed the month after Ellie died. |
That's what insurance is for, right? Unfortunately, the reality is that even after high deductibles and out of pocket maximums are met (in a matter of days), insurance companies will still do everything in their power to get out of paying these bills. In our case, Ellie was frequently denied necessary equipment and treatments because she didn't fall under one of their approved diagnoses. Guess what, when your child has a rare genetic disorder that no doctor has even heard of, it's not going to be on any of the insurance company's lists. You as a parent then get to spend hours on the phone frustrated and trying to get anyone to listen to you. You fill out stacks of paperwork and write letters of appeal pleading your case. Sometimes it pays off and other times it doesn't. Then you are put in the impossible position of either figuring out how to pay for it on your own or going without a potentially life saving treatment for your child. Every penny spent was completely worth it to watch our daughter be happy and thrive.
Because of the extreme costs associated with caring for these wonderful kids, each state has a waiver program for technologically dependent (trached) children that provides families with the highest level of state resources that include nursing hours, respite care, full medicaid coverage, and other resources to help relieve the strain of their care. When Ellie got her trach we were placed on what we were told would be a two year waiting list for Utah's waiver. In the mean time, we were left to fend for ourselves.
Scott and I have always tried to be financially responsible. We believe in living within our means, paying our tithing (a religious belief of ours), saving before spending, and avoiding debt. We have practiced each of these things for our entire marriage and felt like we were financially prepared. All of these things ended up playing against us after Ellie was born. It felt like we were stuck in a broken system when even when our medical bills exceeded our income, we were unable to qualify for any type of assistance. We were advised by some to quit working, spend down our savings accounts, and finance our cars so that we could qualify for the help we needed, but this went against our core values so we continued to work our hardest to make ends meet. It was discouraging to watch everything we worked so hard for melt away, but we were blessed in countless ways and we are so grateful that through these blessings our family's needs were always met.
When we were considering which job to take after graduation Union Pacific's offer had several financial benefits that would significantly help us get back on our feet, but at the top of that list was the fact that Nebraska's waiver program did not have a waiting list. It took us a couple of months after our move to get all of the paperwork done and approved, but starting in August Ellie was officially on the Katie Beckett Program. We had struggled for a year to make it on our own and miraculously had survived. We finally had access to all of the resources we needed to give Ellie the best care possible and a huge burden was lifted off our shoulders. I felt more optimistic about our future than I had in over a year. It proved to be a short lived victory, though. Ellie died just a few weeks later and then we had all of her funeral expenses to add to the medical bills we were still paying off.
I've learned a lot while being Ellie's mom, but one of the things I've had the opportunity to practice over and over again is humility. I have learned that the Lord most often answers our prayers through other people and he can only help me as much as I am willing to allow others to serve. It's been a tough lesson at times for someone like me who prefers to take care of myself and my own problems. As much as I would have loved for Scott to suddenly get a 50% raise or for a large lump sum to magically appear in our bank account, that's not the way it works. In the days following Ellie's death, my best friend, Stacie, asked if I would be okay with her organizing a fundraiser and donation account to help with expenses. Without thinking much about it I gave her the go ahead. The next few days were a complete blur for me with word of Ellie's Auction swirling around in the mix with everything else.
I didn't fully understand what was going on, but I felt so much love and support that helped carry me through those difficult days. It wasn't until after Ellie's funeral that I even began to comprehend the extent of Ellie's Auction. Honestly, I still don't even have a complete understanding of everyone who contributed and what took place to make it all possible. What I do know is what started out as a single night of selling $2 raffle tickets at a local store turned into a nationwide online raffle with some pretty unbelievable donated prizes. In addition to Ellie's Auction there were others who did their own fund raisers on their etsy shop or selling baked goods to neighbors and sending all of the proceeds to us. Not to mention the many friends, family, and complete strangers who generously donated to Ellie's memorial fund.
This is where I run out of words. What can I possibly say to adequately express my gratitude to all of you out there who gave so selflessly and made it possible for us to pay off Ellie's medical bills and funeral expenses that would otherwise have taken us years to pay off on our own. While there is nothing that anyone can say or do to lessen the constant ache in our hearts for Ellie, by making it so we no longer have a line in our budget and monthly payment to remind us of our loss, you have cleared away the hopeless dark clouds that were left hanging over our heads and allowed us to feel instead the warm rays of sunlight that Ellie filled our life with.
So anyone out there reading this who played a part, big or small, in any of this, please know what a difference you have made in our life. I wish I could thank every single one of you personally, and believe me I'm trying, but there are so many contributors I will never know by name. You know who you are, though, so Thank You!!!
I've learned a lot while being Ellie's mom, but one of the things I've had the opportunity to practice over and over again is humility. I have learned that the Lord most often answers our prayers through other people and he can only help me as much as I am willing to allow others to serve. It's been a tough lesson at times for someone like me who prefers to take care of myself and my own problems. As much as I would have loved for Scott to suddenly get a 50% raise or for a large lump sum to magically appear in our bank account, that's not the way it works. In the days following Ellie's death, my best friend, Stacie, asked if I would be okay with her organizing a fundraiser and donation account to help with expenses. Without thinking much about it I gave her the go ahead. The next few days were a complete blur for me with word of Ellie's Auction swirling around in the mix with everything else.
This is where I run out of words. What can I possibly say to adequately express my gratitude to all of you out there who gave so selflessly and made it possible for us to pay off Ellie's medical bills and funeral expenses that would otherwise have taken us years to pay off on our own. While there is nothing that anyone can say or do to lessen the constant ache in our hearts for Ellie, by making it so we no longer have a line in our budget and monthly payment to remind us of our loss, you have cleared away the hopeless dark clouds that were left hanging over our heads and allowed us to feel instead the warm rays of sunlight that Ellie filled our life with.
So anyone out there reading this who played a part, big or small, in any of this, please know what a difference you have made in our life. I wish I could thank every single one of you personally, and believe me I'm trying, but there are so many contributors I will never know by name. You know who you are, though, so Thank You!!!
