Smarties, it is my pleasure to introduce you to Smarty Mom, Kris Shields. Kris and I go all the way back to 1990 when I was but a lowly KD pledge. Kris became my big sister and a journey began. She gave me this incredible sorority family that was carefully watched over by matriarch Cathy, MicMac, Dana and Kris. These women were the guiding forces of my early college career and they continue to be strong leaders in their own families today. (They also know way too many stories about me, so first names only!)
Kris and I have reconnected and as I heard what she had been up to over the past several years, I was amazed. She and husband, Barry went through infertility and then opened their hearts and home to a child with special medical needs. They soon adopted and then were able to have two other children. Along the way, they made a move back to Charlotte.
For Kris’s 40th birthday she invited many friends and sorority sisters to reunite and walk with her family in the United Mitochondrial Disease Energy for Life Walk. Her son, had been diagnosed and Kris has become an advocate for awareness, research and funding. She is tireless in her efforts in advocating for all of her children and sharing the information. Kris is a good friend with a heart that has room for all. She lights up the room with her smile and giggle and will forever be our Lucy! I am proud to call her sister and friend.
Let’s get to know Kris.
Smarty Mom Stats:
Hubby: Barry Shields – married 15 years
Children: Cindy (13), Hadley (9), and Zander (7)
‘Hood: SE Charlotte – We’ve lived here for 7 years now, but I feel like I’m back home because I graduated from Queens College (that long ago!) and I feel like I grew up in Charlotte.
Your path to becoming a mom was not easy, share how you were blessed by Cindy’s arrival?
We went through several years of infertility and infertility treatments. We did 3 IUI and 2 IVF cycles with no success. We were quite young and were very surprised at our response to IVF. Our doctors recommended we consider using donor eggs. I met a woman in an online support group for women who was experiencing fertility issues. She and her husband were a couple who were facing male factor infertility and needed multiple interventions to get pregnant, but they were even younger than us and without insurance coverage for fertility treatment. We went to our physicians and asked if she could be an egg donor for us and if we could compensate her by giving half the eggs retrieved back for her to use in her own IVF attempt with her husband. The most expensive part of IVF is stimulation and retrieval, and we had insurance that would cover our egg donor for that. We were thrilled when we got the go ahead to try, but unfortunately she found out during the attempted cycle that she had endometriosis and the cycle was cancelled. All of this ended up being such a blessing for all of us though. This wonderful couple went on to explore other paths to becoming parents, and they had 2 successful pregnancies. In the midst of this cycle being cancelled, we received a call from a couple at our church. We had signed up to provide respite care for a missionary program that brought children to the US for surgeries. The children stayed with foster families while getting medical treatment, and they always returned home after surgery. We kept Cindy over Thanksgiving weekend, and we fell immediately in love. We kept Cindy every weekend until we found out the week of Christmas that her birth mother had terminated her rights in the hopes that Cindy could stay and continue to receive medical treatment. We immediately began a home study, and Cindy came home with us permanently just a few months later in February. We went on to become pregnant and lost that baby to early miscarriage. At that point, we discovered that I had a blood clotting disorder, AntiPhospholipid Syndrome. I was started on a blood thinner, Heparin, and we quickly became pregnant with Hadley. When she was only 16 months old, we became pregnant with Zander. Again with the help of just the blood thinner Heparin. After a very long journey through infertility, we went from no children to three children in three years!
You are also very active in the Mitochondrial Disease community, how did you first become aware and then involved?
We first became aware of Mitochondrial Disease through another Charlotte family who had a child with Mito. We were friends because we both had children with special needs. If we had not adopted Cindy our paths would have never crossed. Her daughter was the same age as my middle daughter and both of our girls participated in Girl Scouts, but in different troops. I was our Brownie troop leader and volunteered to have our Brownie troop hand out water at the First Annual Energy for Life walk to raise money and awareness for Mitochondrial Disease. I had no idea at the time that my son had mito.
It was this mom, Christy Maney Koury, who spoke with me after Zander’s occupational therapist recommended we take him to see a neurologist. She recognized possible red flags for mito in the symptoms I describe adnd was instrumental in supporting me and holding my hand while helping us get to the right local physicians. You see, we were originally terrified to even consider that his symptoms could possibly be the result of mitochondrial disease and I wasn’t even open to seeing a mito specialist. Christy wisely suggested I just write down his symptoms from birth to five and take those to a local neurologist who understood mitochondrial disease. This doctor would be able to tell us if this was something we should be concerned about or not. This I could handle. That visit happened a few weeks before Zander was scheduled for a tonsillectomy and because of that visit, we were told to take mitochondrial precautions with anesthesia during any surgeries until we knew more. That decision saved Zander’s life. Even with the proper precautions, it took him 10 1/2 hours to wake up from a 30 minute procedure. He then had a metabolic stroke like episode two weeks later that damaged his autonomic nervous system. It took 2 years to get him back to his baseline. The day of the First Mito walk he had just been discharged from the hospital and had not yet had the stroke like episode. After we were through volunteering at the walk, I walked over to the physician tent where they had a Mitochondrial disease expert. I introduced myself and pulled out a pocketful of lab work and started explaining that I didn’t know yet what questions to ask, but I felt like I was at least asking the right person. That was the beginning of finding our answers. One more example of God putting us exactly where we needed to be.
You homeschool Cindy, have two others in school and manage all activities and medical needs – How do you do it all?
Prayer, a wonderful husband, an incredibly supportive charter school, and an amazing community of special needs moms who are always there for support and encouragement. Oh, and the recognition that I’m never going to be able to do it all, that no one can, and being happy when I can do enough.
What advice would you give any parent who just senses that something may not be “right”?
Trust your instinct. Seek information from your child’s physician. If you don’t get answers that make sense to you, ask more questions. Ask your doctor, ask your friends, listen to the stories that other mothers all around you are telling. Reach out to moms groups, go online. Maintain a healthy sense of skepticism when you are online, but reach out. No matter what challenges your child is facing, there is a group of moms out there facing the same challenges. Our oldest daughter has a rare, undiagnosed genetic condition. We can’t find other children with her same exact diagnosis. That doesn’t matter. What I need is to find moms who are experiencing similar challenges who have found solutions. We aren’t looking for a diagnosis necessarily. Don’t get me wrong, that would be nice. But what I’m searching for is to find out how I can help my child. Sometimes it is a doctor. Sometimes a therapist. Sometimes it’s a different parenting solution. Trust yourself and then reach out for help.
The 3rd Annual UMDF Walk was just held at Freedom Park, what are some other ways that we can be involved and help raise awareness for Mito?
You can go take a look at our walk page and learn about Mitochondrial Disease. You can also still make a contribution and help get us closer to a cure! We would love to have you volunteer next year for the walk, and we are always looking for flagship corporate sponsors.
Mitochondrial diseases result from failures of the mitochondria. Mitochondrial cells are found in every cell of the body except for red blood cells. They are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common. Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection. Complicating matters is that your child may look very typical and yet have all of this going on inside his or her body. And the specialists are very clear that if we aggressively manage fatigue and illness we can keep the current level of functioning that our child has. But if we don’t follow our protocol, whole systems can crash and fail. And once you lose a system, it doesn’t just get fixed. But sometimes when you show up to a facility or a physician who has not had a lot of experience with kids with mito, they think that because our kids look typical, they don’t need any special interventions. But that is exactly the kind of thinking that can cause our children to lose whole systems. Through the work of the United Mitochondrial Disease Foundation, and local mothers whose children have Mitochondrial disease, we have had multiple grand rounds in Charlotte to provide physician education. We now have specialists and pediatricians who do understand and are working hard with us to keep our children safe. Mitochondrial diseases are as common as Cystic Fibrosis, yet most people and a lot of physicians are unfamiliar with it. Current statistics indicate that every 30 minutes a child is born who will develop a Mitochondrial disease by the age of 10. You can learn more here.
Zander looks like a typically developing child now that we are supporting him appropriately. However, he takes two medications every day to help him regulate his blood pressure and heart rate, uses a non-invasive vent at night with a back up rate (for when he’s too tired to breath deeply enough), and uses oxygen for 5 hours a day every day. He will need these medical interventions every day until there is a cure. Before we knew what was going on and how to support him he was dropping his oxygen levels below 88% oxygen for hours at a time, walking around with a blood pressure at 60/30, and having heart rates wildly fluctuating from above 200 to below 40 while he was sleeping. He was having serious memory and learning issues because of this. Now, he is in a typical first grade classroom, reading on grade level, and becoming fluent in a 2nd language!
What is something that most people don’t know about you?
I used to drive a tiny Fiat hard top convertible. Bright yellow. 🙂
What is the most important lesson you have learned since becoming a mom?
To not sweat the small stuff. And that it’s all small stuff. No matter what you are facing as a mom, there is a mom somewhere who is facing something even more difficult. It doesn’t make my journey any less difficult, but there is someone out there that I can learn from. And I’ve also learned that I can do nothing on my own. First I rely on my faith, then my husband, then other mothers who are walking similar walks. To have a community of women that you can reach out and learn from is amazing. But the feeling you have when you can reach out and help another woman because of the help you were willing to accept is indescribable. I am forever grateful to other mothers who have literally helped me save my children.
SUV or mini-van?
Mini van. I don’t know how I would manage without my automatic doors!
Where do you see yourself in ten years?
I can’t look that far ahead right now. But I’m okay with that. It took me a while to get to a place where I could be okay with that, but I can honestly say I am good with it. We have a plan for the year. At the end of the year we evaluate how everything is working, what we like and what we need to change. Then we make adjustments and set a plan for the following year. We do have to make adjustments during the year sometimes, but I at least have a plan for the year that I’m aiming for.
Favorite place to go as a family?
We love exploring new areas! We are not a hiking or camping family, but we love to go to new cities and just immerse ourselves in what that city has to offer.
Favorite date night spot in Charlotte?
We are so tired, when we have a minute for a date it’s usually dinner and a movie!
What is your favorite kid-friendly restaurant?
We are gluten free, so we love Red Robin, Mama Fu’s, and Brixx Pizza. Our favorite dining out experience though is Greg’s Barbecue on Monroe Road. I feel like we are coming home when we go there to eat. The owners are wonderful, lovely people and they love my kids and we love them!
What are your favorite activities to do with your kids?
Watching them play sports (cheerleading, hockey, and swimming), taking them to enjoy a day at the lake with family, watching movies, cooking together, and taking family trips.
What is your favorite “girls night out” spot?
Seriously, did you read this interview? 🙂 I do love to get out for a girls night out though. Usually it’s a quick dinner somewhere fun. Cantina 1511 is probably one of my favorite places. You can sit in the fishbowl and be loud and not worry too much about bothering others.
Who is your celebrity crush?
No celebrity crush. Just madly in love with my husband!
Favorite thing about being a mother?
Snuggles. Seeing my children do something someone said they’d never be able to do. Watching the love that they have for one another and for others. Seeing my son save every sticker he got at his doctor’s visits so that he could pass them out to other kids with mito at the mito walk.
Could not live without my…
iPhone. (It’s understood that it’s my sweet family then iPhone, right?) I have my calendar, all of my children’s doctor and therapist information, sports events, practices, friends (mine and theirs), etc. It’s all in there and it’s not written down anywhere. Oh my, I’m getting nervous now! 🙂