When I started to think about the article for Exceptional Parent and what I was going to write about, it seemed overwhelming; only because there is so much to write about when we think of Grace. Luckily, Tara and David do not need yet a wheelchair accessible van yet, so I didn’t want to focus the article on that, but more on the struggles from a parent’s perspective having a child with special needs. I figured I would start by sending Tara a few questions and that would spur some creativity. Tara being Tara, she pretty much wrote the article for me – thanks Tara!! Words just pour out of Tara when she talks about Grace and since I can’t put all of those wonderful words in the article, but I can post them here for everyone to read. Here is my interview with Tara:
Monique: When you think back to when Grace was diagnosed and you immersed yourself in research and prognosis, could anything you read about have prepared you for what you now live and breathe everyday? What suggestion/s would you have for someone who has a child who is diagnosed with a disability/disorder?
Tara: A mother knows when something is different in their child. Nothing could have prepared me for a diagnosis of a severe neurological disease with no treatment, no cure and a devastating prognosis of pain, suffering and most likely a shortened life. It felt like a punch in the stomach. Although I knew something was in fact wrong, you are never really prepared for the reality to hit. It’s shocking and at the same time, relieving to finally get the answer. I couldn’t search any longer. Thankfully, I had my faith to get me through it, knowing all the time that God had a special plan for my daughter, Grace.
Monique: What is more difficult for you to deal with, Grace’s physical limitations or the emotional aspects of Grace’s disability?
Tara: The most difficult thing is Grace’s suffering. Rett Syndrome comes with a host of issues and complications that affect every system in the human body. I was told that she would be severely impaired, she would be happy and doctors would work to keep her as comfortable as possible.
Grace has taken a different course. Rett began to manifest itself three years ago and since then, it’s been a relentless and vicious attack on her body. The girls are expected to “plateau” after the initial phase of “rapid destruction”. Grace hasn’t yet reached any plateau and it’s been a continual and progressive three years of heartache, loss, pain and inconsistency. That is the hardest thing. Every day I wake up and wonder what else she lost or what else hurts her. I used to keep track of her losses and multitude of issues, but I finally stopped tracking. It didn’t seem to help me to keep track of it all and looking at all my pages and pages of notes and concerns was overwhelming. Grace has a different body every couple of weeks, so I had to live in the day to day reality of what she needed “now” and stop thinking back to what worked before or what might help in the future. We have learned to truly live day by day and more often, moment to moment.
Monique: How have your and David’s lives changed as parents since Grace’s diagnosis?
Tara: David and I have had to cope with four other children needing things and needing parents. We can only give them what we have left after all the time and care we commit to Grace. They have learned to be so independent, take care of each other, go without, and most importantly, David and I have seen them learn to appreciate life and the basic gifts in life that many of us take for granted. Grace’s body cannot regulate heart rate, body temperature, sleep, digestion, brain activity (she suffers from seizures), movement, speech, communication, etc. etc. There really is only one thing that Grace can do on her own; love. She can love completely and fully and without reservation. She is not judgmental and holds no conditions over who she opens her heart to. I have witnessed over and over how completely and beautifully she responds to people…all people of sizes, shape and color. She loves faces. She loves to gaze upon faces and touch faces and love the person in front of her. It’s an incredible gift and perhaps if we had nothing else that we could do independently but love, we might learn to master that one skill. They say when one sense is dulled, our remaining senses become more fine tuned. Well, in Grace’s case, all of her abilities and senses are dulled and really the only one left for her is to love. Well, she does that with perfection and it is wonderful to behold. My other children are not able to participate in sports activities (unless I can find someone to give them a ride, etc.). Mostly, as a family, we are home together. That isn’t typical in today’s world of soccer fields and hockey rinks. We watch people left and right coming and going and basically, we are home. We eat all our meals together at the kitchen table. Dinner every night and of course in this house, we say Grace! Those are precious gifts that we have received because of Grace and her life and suffering. Would I trade in all her suffering if I could for her sake? Yes, I would. But I would never regret the lessons of faith, hope and love that I have learned from her and her sufferings either.
Monique: Because Grace cannot speak, how do you “communicate” with her?
Tara: In regards to communicating with Grace, it’s simple, yet not simple. When she’s happy, she smiles and laughs. When she’s hungry, she gets fussy and I know by the clock that she needs to eat. When she’s crying, she’s in pain but I don’t know what the pain is or how I can help her. That is by far, the hardest part. We have been through an extensive list of pain killers, mood stabilizers, seizure drugs, calmers, uppers, etc. etc. We haven’t yet come up with a successful drug treatment plan and the reality after three years is that we may never find a perfect mix. It’s all trial and error with Grace and thankfully, we have wonderful doctors who are very willing to try anything and think outside the box.
Grace doesn’t watch TV. She doesn’t play with toys. She has no functional hand use and she has no control over where her body goes or what her hands grab. She’s tons of work. We can’t take our eyes off of her. Safety is a constant concern. I don’t think I’ll ever leave a toilet seat up or leave a knife or coffee cup on the edge of a table for the rest of my life. I’ve spent three years closing covers moving things back and out of Grace’s reach every single day. It’s something that my family and I will probably do forever.
Monique: Why did you start The Race for Grace? What were your goals? Coming up on its 3rd year, have those goals changed?
Tara: Grace was diagnosed in October 2006. We were told there was no treatment, no cure and therefore, no hope for her. We were basically going to sit back helplessly and watch her slowly shrivel up and eventually die. That was our reality. We decided to pray for a miracle anyway. Three months later, researchers in Scotlandannounced to the world that they were able to reverse symptoms in Rett mice. The findings were huge. They not only slowed the progression of Rett Syndrome in these genetic mouse models, but they reversed the disease and literally returned the mice to “normal.” It was shocking news. We knew that night that we were going to push full steam ahead with fund raising and help find the cure for this incurable disease. It was the miracle we prayed for. Race for Grace was born that night. We started with some phone calls and family and friends and three months later, close to 2000 people showed up in our church parking lot and flooded the streets of our neighborhood. It was truly amazing. My husband and I couldn’t believe the sea of humanity that surrounded us and Grace that day and it was clear that God was telling us we are not alone.
Grace quickly became more than our daughter. The community began to claim her as their own. Grace’s website is hit from all corners of the world. It is not just a fundraiser. It is a faith raiser. It raises spirits and hope and yes, funds, but the money is secondary now. People need Grace. They need her to remind them of what matters in life. Her lessons are far reaching and sink down deeply into the hearts of people near and far. You don’t need to meet Grace to know there’s something special about her. You just need to see her picture and hear her story to know there’s something more than just a fundraiser here. Our goal has become more about Grace and faith than money. We don’t even worry about the funds coming anymore. People are generous and they want to be part of the Race for Grace. I don’t have to work hard to raise the money. I have given Grace to the global community in hopes that every person who crosses her path will walk away with something special and I really believe everyone does. The money just comes. God just makes it happen. We will find a cure for Rett Syndrome. I have no doubt about that. Doctors and researches are very close. Clinical trials are beginning soon and the scientific and medical community are just phenomenal in their dedication and efforts to find the cure.
Monique: What are some things you do to keep you household running and functioning as “normal” as possible?
Tara: Our family’s “normal” day is very different from other families. Grace sleeps in a huge hospital bed with high sides and metal rails to keep her in bed and safe. I can’t prepare food normally. I often have to cook with one leg on my counter like a ballet dancer just to keep Grace from coming near me or the stove. It’s bizarre, but I guess normal to me. We spend hours pushing Grace in her wheel chair around and around my house sometimes to keep her from crying. The kids make a game of it because they need to help push her sometimes too, if I am trying to cook dinner. Even the dog gets in on the game. It’s normal for us, but nothing you’d see in a regular house. I have signs on my toilet seats asking people to please put the “toilet seat down when you’re done…because Grace thinks splashing is so much fun.” The list goes on and on. We have visitors every day at our house. Our home is always welcoming people who come to see Grace or drop by for a “Grace Fix” ~ a term I hear a lot. It’s a wonderful house. It’s full of kids and people and Grace…a house full of blessings.
Monique: I know Grace unfortunately has more bad days than good, but describe a Grace having a great day – how is she different?
Tara: Grace’s great day begins with a smile and ends with a smile and has no crying in between. I couldn’t tell you the last time she had one of those days. Grace doesn’t ever cry because she’s cranky. We’ve come to clearly realize that Grace’s needs are very simple. Love her, kiss her lots, blow raspberries on her cheeks and belly and carry her. She loves to be carried and her favorite thing to do of all is play with your face. If I want to give her a real treat, I trim her finger nails real good, put her in my lap face to face and just let her go nuts on my face. She grabs my nose and my chin. She tries to nibble and suck and kiss my face and she giggles and laughs just at the simple pleasure of using my face as a busy board. Looking at faces and touching faces is her way of communicating and connecting with humanity. She’s exploring and showing appreciation and love for the gift of the face that is in front of her. She’s not just partial to my face, either. It could be any face…any color, shape, smell, size, etc. I think I’m one of the few people that she knows how much it means to her and I just want her to have access to her favorite “toy”. Anyone brave enough to take a good raking from Grace and her awkward hands and grabby fingers is more than welcome to join in the fun, but most likely, you will walk away being marked by Grace and I don’t think that’s a bad thing at all.