Disability Advocacy

Yes, I have a whole page devoted to this because it is a part of me. I want you to know where I am coming from and why I care so much about what I do.

Why I care

There are plenty of things that I have become passionate about in my life and advocate for: Women in ministry, putting an end to human and sex trafficking, food security, just to name a few…However, something that has just been apart of my life, seemingly apart of my being, is individuals with disabilities and their families because I grew up with a brother with significant disabilities, absolutely relate with Glass Child Syndrome, and now have a daughter with Down Syndrome. I was lucky enough to grow up with a coach (my brother) and pro-trainee (my mom) who showed me how to navigate to waters of things like medicaid, SSI, and the public school system. We had an amazing Social Worker in the NICU who helped us get connected with so many government programs and medical equipment we needed for our daughter. We had programs that somehow found us like Rising Kites, and Gigi’s Playhouse and sent us care packages. But all this time I couldn’t help but think, what about the mom that has never interacted with an individual with a disability before? And they get a diagnosis half-way through their pregnancy? What about the sibling that doesn’t feel seen at all and blames their disabled brother or sister? What about the parents that don’t have the luxury of staying close to the hospital to even meet a social worker to hear about any of programs that could be offered to them? Are they scared? Do they feel like they did something wrong?

These questions don’t even begin to scratch the surface. What I do know is that the Lord has placed in my life these amazing teachers again, and again, and again, for the purpose of working with you. The parent, sibling, family member, friend, who are lost as to what life with a loved one with a disability looks like, or how to interact with someone with a disability, or maybe wants to learn more, or needs help finding resources. I am here and I am ready to work with you.

My Brother, Zach

This is my little brother, Zach. He is three years younger than me and was born with something called Agenesis Corpus Callosum. The Corpus Callosum are the fibers that connect the two hemispheres of the brain or is also known as, “the bridge” that helps transfer information from side to side. Agenesis means, “the absence of” so, just for the sake of brevity, Zach was born was part of his brain missing. Along with the diagnosis, he is on the Autism spectrum, and has Dystonia which is a form of Cerebral Palsy (the list continues on from there). Zach declared at a young age that the longer the list of diagnoses you have, the cooler you are and I have to agree. Doctors told my parents prior to Zach’s birth that he would be still born or incapable of functioning on his own and highly suggested abortion. They chose to continue with the pregnancy and when Zach was born, my parents were told that it was a miracle he survived the birth and not to expect a long life. A few years later, they reminded them what a miracle it was that he was alive and functioning as he was and not to expect him to reach the age of 10. This continued until, eventually, the assumed expectations placed on Zach’s life and abilities stopped because Zach kept surpassing them.

This year he turns 30. Unfortunately, I think the unknown is more terrifying than the poor life expectations he had in the beginning because now, we have no clue what will happen. The question of, “what will happen if we lose him?” or even worse, “what will happen if he outlives all of us, who will care for him?” looms daily. All we can do is breathe, and say, “we will cross that bridge when we get to it,” and tackle today.

Zach was my original teacher. He made me grow up very fast. Our family grew up knowing he would be able to live on his own, have a job, go to college. He has met so many people: Scotty Pipen, Lovey Smith, Barack Obama…one time he even snuck away from his group and joined a nice looking stand of people who turned out to be all the family members of The Chicago Bears football team. When we got the pictures developed from that trip, we were a little confused to say the least, but Zach was able to tell us who they were and what they had for dinner the night before.

Unfortunately, as he has gotten older, he has developed some major behavioral issues to the point we aren’t always comfortable taking him out in public. Zach isn’t able to communicate his triggers and has had one too many meltdowns that have resulted in someone getting hit. A couple of times, people have retaliated and punched back. As a family member of someone who is disabled, it is soul crushing to say the least, to have someone you love who you know is the wittiest and most caring person you have the privilege of being in your life, being confined because of their inability to regulate their emotions. On the other hand, I see stories all the time of a disabled individual being killed because someone mistook them as a legitimate threat. The best day of my life was my wedding day when Zach got to celebrate and have the time of his life surrounded by friends and family, and dance his heart out. One of the worst was my rehearsal dinner, when he got triggered and began hitting my mom and cousin in front of our bridal party and their families. The most important people to me, who have heard all about Zach and were so excited to meet him, and saw him at his worst. However, 30 minutes after this meltdown, my cousins son (who was one of my ring bearers and maybe 40 lbs), walked up to Zach (who is about 300 lbs) looks up at him, smiles and says, “It’s okay, man. We all have bad days,” and walks with him inside for the rest of the dinner. Time/space, understanding, and compassion flipped some switch and Zach was back to himself.

I continue to pray that as we continue to work with my brother that he will be able to accomplish everything he has ever wanted, no limitations. Even though things have been a struggle socially, I wouldn’t change him for anything in the world, though. I continue learning from him, and loving him, and excited to see what adventures come his way next.

Friends

Aside from my brother, I have “worked” at a number of different places in the disability community as a camp counselor, “buddy”, AIDE, respite care professional, substitute teacher, general friend. You might be wondering why I put the word “worked” in quotation marks. I don’t see being with these individuals as working, really, and it shouldn’t be labeled as such. It is building relationships. Unfortunately, our society does not know how to do that. That is where I come in.

The video highlighted here are two of my favorite beings that have ever graced the earth: my dog, Harper, and my friend, Sarah. Sarah’s story is an insane one, to say the least. She and I met at a school I worked at as an AIDE and substitute teacher in her classroom. Her mom asked if there was anyone available for respite care work and the rest is history. Of course, she loved Harper way more than me (as everyone did and should-Harper was the best) and any time Sarah had, “sleep over at Jones’s!” her and harper would commandeer my bed while I got exiled to the couch. When it was time to wake her up, Harper would be snuggled up to Sarah, keeping watch and making sure she was safe. I loved their relationship.

The most exciting and heartbreaking thing was when Sarah got accepted to move into a disability assisted living facility. She got her own apartment, community trips, regular respite care, and her family moved close by so they could see her regularly. She gets to have her mom, “come over have coffee?!” at her apartment and spend holidays with her family as well.

There are so many other friends I have like Sarah that have found a significant place in my mind and heart. All of them I have learned from in ways I never could from a classroom or text book. Like Lucio advocating for himself to get a braille copy of the US Citizenship Test when they denied him, questioning if he was actually blind. Merida who was able to come up with her own form of tactile sign we branded “Merida sign” so she could communicate with us since she was blind, deaf, and non-vocal. Or Chad, who called me out when I was in high school saying that I talked to him like he was a baby. “I’m 25 years old, stop talking to me like I am 5.” That was the slap in the face I needed to realize how patronizing I was being to so many people. Yikes.

I know I will never stop learning from this community. I know that the world continues to limit them and their voices. I know that I have the opportunity to speak for those who are not able to, and make space for those who would not be given a platform otherwise.

(I Love) Lucy

This is my daughter, Lucy. At 24 weeks we were told that she was at a 99% risk for Trisomy 21, also known as Down Syndrome. Though I have been a part of the disability community my whole life, I still mourned the child I thought I would have. I want to be clear: I did not mourn because I was not going to have a typical child. I mourned because I know how hard life is, how hard other people make life for individuals with disabilities.

To say Lucy is a miracle is an understatement. She fought long and hard for her life, so I know she is going to do more great things than I could even dream for her. Her story is already long, and difficult, but it is just starting. Each day she brings us more and more joy, like her first word being “duck” and growling when she says, “mama” and figuring out how to do everything with her toes, like her dad. Her smile alone is contagious and I can’t believe I get to call her my daughter.

The NICU

The purpose of this section is just to say that it happened and if you are a NICU parent, I see you, I’m proud of you, you are doing a good job, and they do know you are there.

This can be a triggering to those who have experienced similar situations. I did my best to be brief. Read with caution.

I was going to put pictures. I was going to. And then, I decided not to, because I can’t bring myself to do it. Maybe some day I will be able to look at them and be in awe of how far she has come, but for now, they will stay where they are.

I am going to do my best to summarize here because I can’t bring myself to share all of it with you right this moment. I promise the full story will be coming soon, I just want to get it down in the right way and in good timing for my mental health.

Lucy was a planned c-section that turned into a crash c-section the morning she was to be delivered because she lost oxygen. I don’t remember much, other than asking if she was out yet, where she was, and why I couldn’t hear her. No one answered me. Eventually I saw them wheel her past me as she went to the NICU to be in isolation and I was sent to recovery.

I met my daughter about 13 hours after I delivered her. She was hooked up to so many machines, I couldn’t reach her. Within a few hours, we were told they could not care for her and she would be emergency transferred to another hospital in the city of Chicago. My husband went with Lucy and I stayed until they discharged me.

When I arrived in the NICU, I got to see Lucy right away. Within 30 minutes of being there, medical staff rushed to the bedside of her pod mate, the curtain was closed, and we were asked to step out of the pod. When we got back, Lucy’s pod mate was gone and they didn’t come back.

We moved into the Ronald McDonald House just a few blocks away from the hospital, completely unaware of how long we would be there. Some families had been there only a week or so, some had been there since the previous May (by this time it was February). At first we wanted to make friends, see if we could build some sort of community, but it’s hard to be around other parents who are scared and mourning when you are also scared and mourning. So, we eventually just stayed in our room.

All the days blended together. We would go in and sit next to our daughter who was essentially in a coma and just stare at her. Each day would bring a new issue and a new possible solution. Since we were at a teaching hospital, we had a million eyes on Lucy at all times and I liked it that way.

There were some moments where we almost lost her again. Her primary care nurse, Pam, just held me in the thresh hold of the door way to the pod to keep me from collapsing, seeing all of the medical staff surrounding her little body.

And then the moment of her going into surgery at only a month old.

And a second surgery a few weeks after that.

And all of the tests and x-rays and wires…

Eventually, she got stronger, and more stubborn, and eager.

We witnessed miracles, built incredible and lasting relationships with people who saved our daughters life and love her as if she were their child, and saw this foundation that the Lord provided of people who loved us giving of themselves to care of us in anyway they could. It was humbling. My husband, Justin, and I have never been closer than we were during our time when Lucy was in the NICU. We are so grateful and never ever want to go back there again.

Our daughter came home with us on April 24th, 2023, which was my brothers 29th birthday. We took it as a special sign and are excited to celebrate both Zach’s birthday and Lucy’s coming home day this year.

My Goals

We, as a society, will be able to accept and adapt to any and all persons regardless of their ability. Or, you know, treat everyone as a human being. That would be a great start. We will start there 😉