In celebration of my birthday today I am going back 25 years with my mom and interviewing her on what it was like to have a daughter born with dwarfism in 1991 before the internet, blogs, and social media!
Hey Mom! Thank you so much for doing this interview with me!
First, let me introduce you! As I have gotten older I have admired my mom, Jennifer, more and more each day! She taught me to be kind, always be brave when trying new things, “keep my knees bent” when life is rough, value family, always work hard, follow my dreams, and love others passionately. She loves God faithfully and has shown me God’s compassionate love and forgiveness over and over. She is patient when I am slow and quick to shower me with support and love when I’m down. She answers every phone call even if it is my third call that day! I am so lucky to call her mom
Now take us back to the beginning… what was going on in your life before you found out you were pregnant with me? Were you hoping to have more kids?
I was a stay at home mom and we were busy with two sweet little girls, ages 4 and 1. We were absolutely hoping for more children and we were thrilled that we were pregnant again!
When/how did you find out about my condition? Do you remember how you felt?
I found out about you having achondroplasia during an ultrasound later in my pregnancy. Back then, ultrasounds were not routine, and I remembered being worried about you for some reason, so my doctor scheduled one. During ultrasounds they measure the femur bone and noticed yours was shorter. The most common reason for a shorter femur is Down’s Syndrome, so they considered that could be the cause at first. Then they sent me to a specialist who did more measuring with more sophisticated technology. I remember seeing the Dr. flipping through a huge medical textbook at his desk, and then coming in later to tell us you had achondroplasia.
I remember being mostly in shock of the diagnosis, because I didn’t know it was even possible for me to have a child that was short statured, so initially it really scared me.
When you found out that I had dwarfism did you have any context about the condition? Did you know anyone that was living with dwarfism or families that had a child with the same diagnosis?
I think this is why it was so hard for me at first. No, I didn’t know anyone with dwarfism, I couldn’t remember even seeing someone in passing with dwarfism.
What resources were available to you back then? How did you get your questions answered?
Well the internet was brand new back then, and not at all the accessible resource that it is today, so I had a few medical textbooks and I can’t remember even where I got them. Somehow we heard about Dr. Kopits in Baltimore as the specialist to see, and if I remember right, we saw him when you were about 6 months old. I also remember waiting for a quarterly newsletter that one mom put together with tips and ideas on adaptations and other helpful hints. It was something I really looked forward to, since it was a lifeline to something I desperately needed information on. At one point I wrote a letter to the author of a medical textbook on achondroplasia who was from Italy! This seems so crazy to me now, but I remember feeling like I didn’t have anything to lose by sending it, and I believe he was a well-respected authority on achondroplasia. To my surprise, he called me on the telephone, and with a thick Italian accent, all I remember is that he tried to reassure me that you would be fine!
If you could go back to the days and weeks after first hearing the diagnosis, what would you tell yourself now?
Oh my goodness, this is the best question ever. I have thought about this a lot, because I wish now looking back, that I wouldn’t have been so concerned and worried. I would have told myself to relax and enjoy this sweet beautiful new gift from God and enjoy the adventure she is about to take us on. I learned so much about myself and I grew so much in my understanding of difference and love and unwavering faith, that I can honestly say that I was the lucky one and I was most blessed and most fortunate to be chosen to be your mom!
What was my birth like? Do you remember being nervous about anything in particular?
I had a c section, which I thought was pretty scary. I remember one thing about it though, that sticks in my mind. As I sat on the wheelchair ready to go to the operating room, the anesthesiologist came in to talk to us. He was very matter of fact and said, I was going into the operating room and was going to deliver an achondroplastic dwarf.
I so wish I would have said, excuse me sir, but what I think you meant to say was that I am going into this operating room to give birth to my third daughter, a beautiful baby girl, a gift from God and one that is to be celebrated!
How did you explain my diagnosis to my sisters? What was their reaction?
Oh, your sisters were too little. I remember Mackenzie coming to the hospital and holding you, and I think she was 5, but old enough to know that something was up but not understanding what it was. Honestly, I have no memory of ever explaining your diagnosis ever to your sisters or brother. You were always just their sister, and I think they learned about your difference little by little as you grew. I sometimes wonder if we should have talked about it more, but interestingly, it just seemed like it wasn’t that important! You were so much more than any diagnosis, and you wanted to do everything that everyone else was doing, so with a few adaptations you went along with everyone else. Snow Skiing, playing softball, water skiing (!), playing violin and piano, ice skating, playing tennis, dance lessons, driving a car. Anything you wanted to do, you did. You were just Kate. Adventurous, outgoing Kate, who never wanted to be left out and who happened to be short. That’s it.
What was the first few days home from the hospital like? If you could give a mother advice for those first few days what would it be?
Oh, they were awful, but that isn’t unlike any new mom’s first day’s home with their third child. I do remember they gave us a heart monitor because some kids with achondroplasia have heart issues, but it was a big hassle and every time you moved the alarm sounded and scared everyone so we just took it off! I knew somehow, that you were fine. My advice to any mom coming home with their third child is to get help for the first few days until everything settles down.
This isn’t part of your question, I know, but another thing I’d like to share is how overwhelmed I was. It’s interesting, because with your sisters, I never felt like I wasn’t equipped for the job of being their mom. I felt capable and pretty confident when they were young. But with you, I remember, feeling way over my head, and I just wasn’t sure I knew what I was doing. Come to find out, it wasn’t much different, but I didn’t know that at the time. What I did though, was completely lift you up to God. I remember it distinctly, the time of day, the heaviness in my heart, the room I was in. I did that because I knew I couldn’t raise you without His help and guidance. I was relying on his help and presence so closely, it was the only source of strength that made sense to me and gave me comfort and assurance that I could do this. Now with years of parenting behind me, I have seen how that experience taught me to trust God with all you kids and put you in his hands rather than just trying to rely on my own strength and confidence. I guess it’s also fair to say that I still wrestle with God a bit on letting go, but I remember this moment as a significant part of my journey with you.
What are the biggest worries you had for me growing up?
My worries were mostly social ones. Would you have friends? Would people make fun of you? Would you be included? Things like that. I think I mostly worried about your teenage years, which again, most people worry about, with just cause. There are a lot of challenging issues in the teen years. I didn’t worry much about you falling in love or getting married for some reason, I just don’t think I thought that far ahead.
Now that I am 25 were those fears ever realized?
Not one. You were very social, and always had friends. I remember you coming home in grade school and telling me that you were popular! You had ups and downs like all kids do, but nothing that your sisters and brother didn’t face also. If anything, even though we had situations where people stared and maybe made fun of you, we just sort of soldiered on and ignored it. I remember thinking lots of times that they were staring because you were so darn cute! Which you were! I should say that even though you have been confronted with your share of rude and uninformed people, I would say you have also had many more people who are very kind and maybe even ‘overly kind’ if you know what I mean. I think you see that a lot. Which comes with the territory, and you handle with grace.
I didn’t worry about your health in the beginning, because I wasn’t sure what to worry about, but that has been the biggest challenge for you in your diagnosis in my opinion, and for me as your mom. Your stenosis and three back surgeries, especially at such a young age were very tough. And something that few of our friends or family could really relate to or understand. Those were all scary times, having to entrust your child to such major surgery. We were most fortunate, however, with excellent medical care, which isn’t lost on me because not everyone can say that. It made it just a little easier to let go knowing that we had excellent surgeons that we trusted. And most importantly, a Heavenly Father, who I knew held you in the palm of his hand.
Is there any other advice or anything you and to share with a mom getting the diagnosis for the first time?
I think most moms would admit how surprised they are with how fierce their love is for their children. Because it’s not like any other love. I like to think of it in the way that God loves all of us. So this fierce love and protectiveness is no different for a child with a diagnosis of some kind, but maybe a bit more noticeable because of the unknown you might face. But really, it’s basically the same, and now we live in a world that is so much more educated and accepting of differences than any other time in history.
Social media has opened doors for more education and connecting, in my days I had to go to the library for help. New moms are blessed to have so much support and information at their fingertips with the internet. I would reach out and find others who have been there and can support and encourage you. And I would say relax and enjoy every minute!
I have also learned that people are only ‘different’ or ‘disabled’ or ‘handicapped’ when you don’t know them. Knowing a person, melts away whatever physical attributes that you first notice. Then if you are lucky enough to get to know a person, their spirit and their essence, that’s what you see and respond to, not their appearance. And don’t we all have differences? It’s just some differences are more noticeable than others. I think it’s important to keep that in mind, because it keeps your perspective realistic on what your child is dealing with. It won’t be long before your child’s difference becomes a very very small part of who they are. And the love and joy and blessing of being this child’s momma is all that matters.