Mother Really Does Know Best
Feeling nostalgic, I sat down and watched some home movies I found, including one made 13 days before I was born.
In the movie, my dad is interviewing my mom and one of the first things she says is that she wants a healthy baby. She worked until she delivered so she could spend as much time with me as possible. When asked what she would say to the baby right now she said, “Michael (my dad) and I love you very, very much. There is nothing you could ever do that would ever change that. I couldn’t love you more today if I tried.” My dad (off screen) echoed her sentiments, saying that he hoped the baby was healthy and that they could have the best possible chance it could have at a wonderful life. But the only thing that matters is that the baby is healthy. Twenty-five years later and I can say with absolute certainty that that has never changed.
After watching the home movie, mom and I sat down and had a heart-to-heart. Here’s what she had to say:
You were born on February 27, 1995 at 3:03 in the afternoon. You were delivered by C-section three weeks before your due date. Your father, Michael, and I went to the hospital to have my child turned while still in utero. The baby, we didn’t know the sex, was in a breeched position and would have tried to enter this world feet first. The procedure was supposed to be somewhat routine and would either work fairly easy and I would be induced that day or we would have to schedule a C-section delivery closer to your due date.
We didn’t know if we were parents of a girl or a boy and we still hadn’t picked out names. We brought our baby name book with us to the hospital. We thought we were prepared. Well life had different plans for us. While using ultrasound equipment to help guide the doctor to gently turn my baby, the doctor discovered a possible discrepancy in the growth of the long bones.
That was the first time Daddy and I learned that our baby may possibly have a dysplasia . We did not know what that meant but we soon learned. The procedure was stopped. The doctors and us made the decision to deliver our baby by C-section that afternoon. Though we were told that it was only a 20% chance that the baby had some sort of dwarfism it was better to deliver the baby that day to avoid me going into labor.
At 3:03 P.M. my daughter was born! You were absolutely beautiful. We named you Jillian Ilana. I finally got to hold my baby. However,shortly after Jillian was taken for X-rays and you were placed in the NICU. This was precautionary because you were not actually given the diagnosis of achondroplasia but you definitely had some type of dysplasia.
Five days later we all went home together for the first time as a family. We still did not have an absolute diagnosis.
That was not going to happen until we went to see the geneticist at A.I. DuPont Hospital. Dr. Scott was one of the country’s leading experts on dwarfism. While I was holding my bundle of joy Dr. Scott was telling us about Little People of America for emotional support as well as providing a plethora of medical information. It was during this first visit that we learned that dwarves were weight restricted to only three pounds a year.
Now being certain that you have achondroplasia, my concerns turned into worries and fear. When I was pregnant I, like many expectant moms, began reading What To Expect In The First Five Years. That was going to be my go to guide. After leaving Dr. Scott’s office we knew that the book was not going to help us as all of your milestones were now on a different time schedule.
There was no book about what to expect the first five years raising a little person.
So I worried. A lot. All day. I still enjoyed being your mom every minute of every day but I never ever stopped worrying. I worried about all the things I did not know. I worried about things in the present, in the near future and in the distant future. I did not know what it meant to live with dwarfism and I did not know what it meant to raise this wonderful child with dwarfism. I did not know any adult or child dwarves that I could turn to for advice. I did not know if you would need surgeries or other medical interventions. I certainly did not know how to sew and did not know where the best place was to buy your clothes and shoes. I did not know what adaptations we would need to make the house accessible and safe for you. I did not know how you would learn to drive. I did not know how other children and adults would treat you. I did not know ignorant people would try to hurt your feelings. I did not know if you would face employment discrimination.I simply worried about every thing I did not know.
However, I did know many things that would stop worrying. I did know that Daddy and I loved our sweet child with every fiber of our being. I did know that each day we fell more in love with you even when I thought it was impossible to love any one as much as we loved you. I did know how beautiful you were and how I loved holding you in my arms. I did know how much you loved to fall asleep on Daddy’s chest. I did know that you would smile and laugh when Daddy sang “Hello Jilly” to the tune of “Hello Dolly”. I also knew that you made us a family and I couldn’t have been happier that you were mine!
Dr. Scott made it very clear to us that weight gain was a very common problem for dwarves of all ages. We learned that the necks and spines of dwarves are delicate. Extra weight on the necks and spines of adult little people often results in the need for walkers and invasive surgeries. I was determined to stay within the doctor’s guidelines. Once you were off baby food I was vigilant. In fact, Dr. Scott had to remind me that babies need natural fats for brain development.
As you grew older I made sure that you kept to my dietary conditions. As a little girl I could control not only what you were fed at home but I also could control what other parents were feeding you. Everyone understood and mostly complied with my requests. When Ben was born, he too ate what you ate. In the house we did not have snacks like other kids had at home. If you shouldn’t eat those snacks then neither would I, Ben, nor Daddy. After all, we were a family, we were a team. That doesn’t mean that we parented you and Ben exactly the same. Every child is unique and special and we did what was best for each of you. But we always supported each other and that includes what we ate at home.
It was always important, and still is, to make sure you were healthy and that you were happy.
As you grew into a young teenager both became harder. At that age all kids want to be like all the other “normal” kids. Normal in this context can be defined as conforming. Being a dwarf makes this difficult. I tried to equate your dietary needs to a child with gluten allergy or that of a diabetic. There are no food exceptions for those kids. You were going to feel sick or need medical intervention if you ate what your friends were eating. Yet, I recognized the desire to fit in or, at the least, not stand out at that age. You looked different from your friends and that couldn’t change so I understood wanting to limit or eliminate the differences that exist mostly by choice. This can be as simple as going for pizza with friends. The beauty of you is that though you stand out because you are a little person. More often than not you embraced the differences. Being different has also given you the gift of acceptance. You always were kind and compassionate to everyone, especially to those who also “don’t fit the norm.”
When you were a young teenager you complained of ankle pain and difficulty walking. After months of doctor visits you underwent an osteotomy to straighten your leg. Your leg was in a fixation and limited your movement. This occurred simultaneously with puberty, a time when your body goes through so much change and growth. It was during this time that you put on more weight than the doctors approved. It was also the time when you, like all teens, started to be more assertive and perhaps a little rebellious. It became increasingly difficult to simply tell you what to do when it came to making personal decisions. I got you a trainer and tried taking you to Weight Watchers. My big mistake was thinking that I could fix the situation. I should have stayed quiet and let you decide how best to lose the weight. I should have taken cooking lessons with you so that you would learn to cook better foods than I was cooking.
When you decided to take control over the issue you became obsessed with food. I should say that you became afraid of food. Then slowly you learned how to balance the need to keep your weight down but to do so in a positive way. You became a Zumba instructor and you learned to cook healthy (and still very tasty) food. Now, I am very happy to see that you live a balanced life. You exercise everyday and you do only eat healthy foods but food and exercise do not control you. It has simply become a mentally and physically healthy lifestyle.
I am so proud of the woman you have become. We don’t have any choice about who we are when we’re born but we do choose what we do with our lives. You are living your best life Jillian Ilana! I am so excited to see what you accomplish in this new chapter.
It goes without saying that my mom is my best friend. I would not be the woman I am today without her endless love and support. But, she is not a little person, and growing up I thought she would could never understand what it meant to be a little person. During my teenage years I felt like she was trying to change my body into something it could never be- tall, thin, ideal. Reflecting on those years I wish I could tell my younger self, “Listen to your mother because you are so, so wrong. She is not being mean. She does not think you are a disappointment. She is watching what you eat, encouraging you to exercise because she wants you to live a long and healthy life. She wants to see you dance at prom, drive a car, walk down the aisle. Shut up and listen because mother really does know best!”
