My name is Susan Nikolai. My husband and I live just outside of South Bend, Indiana-in the shadow of Notre Dame University! We are parents to three children, Lauren (16), Genevieve (15) and Dean (8). We have learned over the years to take every day as it comes, good or bad. We have a very strong Catholic, Christian faith and I think that has helped us remain strongly married and in love with the life we have been chosen to lead. Our Genevieve has never received a diagnosis, so that is one area of our life that we have struggled with over the years. Lauren also has health issues (Crohn's disease) so that presents a challenge too! Genevieve presented at birth with low tone, dysmorphic features (tall narrow forehead, wide spaced eyes with small, non-reactive pupils, pectis excavatum, high arched palate) and feeding issues. She did not regain her birth weight until about 5 weeks of age. She also was sick at 16 days of age with severe RSV. She has had three genetic evaluations without diagnosis, neurological workups that showed "decreased" white matter on MRI and other workups that have resulted in NO DIAGNOSIS. She crawled at 14 months and walked at 30 months. We never have known what to expect as far as her development, which is incredibly frustrating. We like to call her diagnosis "Genna-syndrome!"
Miggy: Hi Susan--so glad to have you here today. Thank you for sharing your Genevieve with us. Let's start at the beginning. At what age did you first realize something was "off" about Genevieve? And while she doesn't have a diagnosis, do you remember when it was confirmed by a doctor that she does indeed have special needs? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Susan: I remember when they laid Genna on my belly, right after delivery, thinking that she looked "different" and being very concerned about her! She had followed closely after her sister (16 months), so we knew what having a beautiful, healthy baby felt like. At the time, we lived in Toledo, Ohio. I felt like I would never be affirmed in my fears that something wasn't right and spent six months in fear. When we left Ohio and moved to Indiana, within the first week I had contacted early intervention services. They did a large team evaluation and then sat down with me and confirmed my fears about how significant her delay was. I cried and cried and when they asked if they should call someone, I just said, "I finally feel like now Genna will get the help she needs and I'm not crazy!!"
That was the biggest hurdle for me, getting affirmation that I wasn't insane, that there was something wrong with my baby and she needed help. At seven months of age, she couldn't hold her head up, she couldn't roll over, she couldn't look me in the eyes. That really bothered me.
Today, she is a very loving and adorable child, so far from where she started. I have so many fears for her still, but I know she is a person inside now and not trapped and helpless like she was then.
Miggy: Explain how your Genevieve's needs affect your day-to-day life? How have these needs changed over the years?
Susan: Genna has a lot of "autistic-like" behavior. She has a lot of anxiety and fears. Often, we have to slow down so she can process something in her environment that is ordinary to you and me. This has often resulted in the "slow down and smell the roses" affect! She will see a bug or a bird or a flower that we so often overlook. She also has low muscle tone and vision problems (corrected with glasses), so she cannot do many of the things we take for granted. She still doesn't wipe her bottom well, she cannot blow her nose and she cannot ride a bike. We just do what we have to do to make each day work!! We bought an attachment bike for her to sit on, attached to my bike or Tony's bike with a big basket for all of her favorite stuffed animals to ride along. She wears a diaper at night, and while that seems babyish, it isn't to her or to us. It's just one more thing she has to take care of. If we, as a family, want to do something like go kayaking or go to a water park with a lot of big-kid activities, we have to find a sitter to take care of Genna so the other kids can enjoy that activity without being stuck in one area. Maybe if we only had one other child, this would be easier? It's definitely harder to divide and conquer when you're outnumbered as parents.
She only has a few words and is working consistently with a speech therapist at school. I really understand 99% of what she's saying to me, but most other people do not. She will often look to me when she's communicating with someone else, so they have a hard time understanding her. This has actually gotten better since junior high school! She was put in a main-stream choir class and we think music is the key for her.
Miggy: What are the biggest worries you face for Genevieve?
Susan: I worry most about when my husband and I are gone. Whew. How do you prepare siblings and family for an inevitability? How will she live without me? Parents always fear outliving their children. In Genna's case, I fear HER outliving me. It is such a real and present worry for me every day.
I worry about where she will live as adult. Will she always be with us? Will she be able to separate and live in a group home setting? Will she be able to have a job?
As I write this, I start to cry because I have had these fears for 15 years! I don't think anyone with a "typical" child really understands. They have worries and fears for their child(ren): Will they go to college? Will they have children? I hope they don't get in a car accident! I pray their friends are good kids! With a special needs child, that focus shifted our whole reality. We went from those questions/concerns to: Will our other children be kind and loving? I hope my kids believe in the same God I am teaching them about! I wish my child had a friend to spend time with. Boy, I'm tired of always playing "pretend" games with this girl, could someone give me a break? Are my other kids going to need professional help because I'm just keeping my head above water?!
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Susan: Often, Genna loves to talk to other children, especially babies. Most little kids (preschool) are absolutely fascinated with her and will ask blunt, awesome questions! My favorite was, "She doesn't say much, how do you know what she is telling you?" I always have said that God made Genna different, not bad, just special how each child should be! This one child said, "God must really love you, then!" That was my favorite!
Miggy: How can people best approach or respond to Genevieve? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Susan: Older adults and children should just talk to her! I wish they could see her everyday, in our household and how caring and compassionate she is. She has more empathy in her little body than 20 adults usually possess. If any of us is hurt or sad or just out of sorts, she can make it all better just with her tears and her "Oh no!"
People just need to be like children, asking if she has special needs and if there is anything special they need to do to communicate with her!
Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other children and their relationship to your son/daughter?
Susan: Our older daughter has always had a soft heart for our Genevieve, she is so kind and loving and tender. When I am busy, I can always count on her to play second-mom. It's a big, big responsibility to put on a child, but she stepped into the role with grace and ease. We have never lied to our children that Genna will someday be their responsibility. That is what has been so special about Lauren. She understands she is needed in a different way with Genna than with Dean. She and Dean have the tight, loving bond of far-spaced siblings (8 1/2 years). She is the awesome teenager he worships; he is the cute, sassy little brother she always wanted!
Dean has a far harder time accepting Genna as a special-needs sibling. He is especially struggling with that currently. She very rarely gets in trouble and she is often spoiled, even by strangers! He sees that and is trying to find where he fits into this situation and how to deal with his jealousy. The beauty is, they also have a "typical" sibling relationship. Where Lauren and Genna never fight and never struggle, Dean and Genna actually hit each other and fight over toys and movies and anything you could expect! I really love that this is happening, it brings normalcy to our household and makes me feel like I don't have "perfect" kids.
Miggy: Tell us something you love about your child. A special story, a personality trait or just something others might not know.
Susan: We just spent five days at Walt Disney World with my mom, just Genna and myself! Genna was so easy to travel with and was in her "dream" place. She is Mickey Mouse's biggest fan. I loved experiencing that with just her and no other worries (besides running the Princess Half Marathon). She spent three days acting as if she had never seen the characters before, never been to the part before and being like a sappy Hallmark commercial. Her enthusiasm and love of life make me cry every time we experience it!
The last night we were there, I had just run the half marathon. She was determined she was wearing my running costume (Anna from Frozen) to dinner and the park. Mind you, I had just RUN A HALF MARATHON in it and spent a day at the park in 85 degree heat wearing it (GROSS!) but she was not going to dinner without that outfit on. LOL! When we got to the bus station, she personally greeted every person sitting there and acted as if she were employed by Walt Disney himself! She even got one little boy to tell her his name and replied, "That nice name! My name Anna!" I was embarrassed, but one mom said, "She just made my whole trip here! If every person had a thimbleful of her enthusiasm, our world would be a better place!"
Miggy: What is the biggest lesson you’ve learned since becoming Genevieve's mom?
Susan: I have learned lessons every day of her life. The most important is, you cannot chose who your children are going to be. They are a gift to you, not a punishment. You can be happy and love them, or you can be sad and never see the beauty around you. I chose to be happy. I chose to love her.
Susan--that was awesome. Thank you so much, what a sweet family you have. I loved hearing about how kind and sweet Genevieve is and what a great support system she has in her family around her. I love that your kids know that one day they will help care for Genevieve--I love that you've been so open about it and help prepare them now. I think what I love most about what you said was your final few words, "You do not choose who your children are going to be. They are a gift to you, not a punishment....I chose to be happy. I chose to love her." I have had that same thought--NO ONE gets to choose their kids (except adoptive parents! ha!) and no matter what they bring to the table--special needs, strong or defiant personality, a knack for trouble making, etc, etc--we love them anyway. Personally I think that tells me a lot about our capacity to love as human beings. Thanks again Susan and big hugs to your family.
As always if you or someone you know would like to participate in the special needs spotlight please email me, or have them email me directly, at this littlemiggy at gmail dot com.
Have a great weekend!