Don't be too quick to judge, instead look at the blessings

So, it's been around Facebook. If you're part of the special needs world, I'm sure you've heard about it. Many many others have also blogged about it... the couple who sued for wrongful birth after their child was born with Down Syndrome. (read about it here)

A lot of people have opinions about this story. Many people are judgmental toward this family, and rightfully so. I didn't get a say in Sadie being born with brain damage. If I knew ahead of time, would things have been different? Probably not, but it may have been easier with some of the grieving out of the way and resources already in place. It's hard to know how you would actually feel if you were in this couple's shoes, and that's why it's dangerous to have such strong judgments about them.

I don't want to write about how I understand how they felt because I had this perfect pregnancy and then everything went south at the very end. I don't want to talk about my opinion on terminating a pregnancy if you know ahead of time that child has a disability. I want to give perspective on the financial aspect of raising a child who will need a lifetime of therapies, additional caregivers, special equipment, and eventually an adult living facility.

Right now $3 million dollars sounds like freedom to me.

Let's just use Sadie's wheelchair as an example...

To be accepted to the wheelchair clinic here in Phoenix, Sadie had to be eligible for a program called Child Rehabilitative Services (CRS). It's a division of the state healthcare system and it's like a safety net to catch disabled children who aren't receiving appropriate care/services. Once we were enrolled, we had to make an appointment to see a CRS pediatrician...even though we have an awesome, wonderful, completely capable pediatrician of our own. (We refer to the CRS pediatrician as "the gatekeeper.") The gatekeeper had to see Sadie and establish what she needs and that those needs are being met. The gatekeeper saw that Sadie has everything she needs and a perfectly competent care team in place (with an educated and brave Mama at the head), so she released us and basically said we don't need to come back...but we had to have that appointment to be referred to the wheelchair clinic. The gatekeeper has to authorize and refer all things CRS.

Then we had to make an appointment at the wheelchair clinic. Mind you, these aren't appointments like, "we have an opening tomorrow at 3:00"... we're scheduling up to a month in advance!! When we got to the wheelchair clinic we basically had 3 chairs to choose from. And really, we had kind of made up our mind before we got there, so we just needed to find the right size.

Then it got complicated. Since we have private insurance, as well as state provided insurance, there were authorization forms that had to be submitted and approved before the wheelchair was even ordered. Once our private insurance said they'd pay the 80%, then they had to get authorization from the state that they'd pick up the extra 20%. Then the wheelchair could be ordered, which took up to another 4 weeks.

I saw the price tag. Sadie's wheelchair was $2700. And it took us 2 months (from the time we finally had our appointment at the wheelchair clinic) before we got it.

And we go through a similar process for every piece of equipment or new therapy or medical procedure we need for Sadie.

Now imagine if I had $3 million dollars at my disposal to take care of my child. I could order that wheelchair (or any other wheelchair I wanted that might actually be better) when I wanted it and receive it within normal production time. I could pay for extra therapy, or even private therapy (like music or water or movement) without worrying about it. I could remodel my house as needed to install wheelchair ramps or a roll-in shower. And I could schedule surgery when my child needed it instead of waiting for approval from insurance before anything can be done.

I get it. And I'm not sure if I would, but if there was someone I could sue for Sadie's birth trauma, I might, knowing what I know now about "the system." The system runs our lives. We constantly fight to maintain sanity in our household by receiving the services our children deserve. I see families devastated, scared, and exasperated from the power the state holds over them because they NEED these services and they are being threatened of losing them. It is exhausting to constantly be fighting to maintain what should be considered status quo.

This post isn't about whether that family was or was not given injustice by that test being wrong. I don't judge them, even if I don't agree with their decision. I just hope that it offered you a different perspective on what they're facing and what kind of freedom their daughter (and their family) has gained in being awarded this money.

Be happy for them, because, not only have they been blessed once, with this sweet child of theirs, but they've been blessed twice, with financial freedom.