Our family of 5 live in Davenport, Iowa. Mike and I (Katy) have 3 girls. Bella just turned 9, Lexi will be 8 next week, and Olivia is 4 ½.We also have a bird Keyko and dog Bandit. At 7 months we found a fracture in Olivia’s left lower leg. After a few months they were finally able to tell us it was from Congenital psudoarthrosis of the fibula. Later we found out it’s a 1 in a million thing. That is why is was so hard to find anyone to even know what it was. Olivia also deals with lots of other things. She has a speech delay, has had 3 sets of ear tubes, had tonsils out, 4 leg surgeries, food and medicine allergies, seasonal allergies, asthma and breathing problems, over active bladder, and her newest thing is a rare condition in her “good” leg called Kolher’s. She goes to PT, pool therapy, speech and starting muscle training for the bladder problems. Olivia is about to start fulltime preschool next week where she loves to play with her friends. Even with everything going on she is a happy go lucky little girl. More info can be found on her facebook page “Leg up for Olivia.”
Miggy: Hi Katy! Thank you so much for being here today and sharing your special needs journey with us. Can you take me back to the day you knew something wasn't quite right with your son/daughter? Was this before birth, immediately after, or sometime after that? If applicable, how long did it take you to get a diagnosis? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Katy: On a normal October day I was changing a diaper. After, I would pull Olivia up to stand when pulling her pants up. This one morning tho she would only stand on her right foot. After two trips to two different ER’s in over three days they found a fracture in her lower left leg. First they thought we hurt her, then it was a tumor and then they just didn’t know. After 6 months they were able to tell us it was congenital psudoarthrosis of the fibula. A one-in-a-million condition. At first I just wanted answers. After a while it was all about getting it to heal. Of course all the while we were dealing with her being sick all the time still. Now that she is healed she is still dealing with many other things. The newest is yet a new rare thing in her other foot--Kohler’s. We are just dealing with everything day-to-day.
Miggy: Please explain how Oliva’s needs affect your day-to-day life?
Katy: We have therapy several times a week. As well as lots of other doctor visits. It’s hard to keep up with everything sometimes. How many different things she now has, if she is sick again or not, all the therapy and doctor appointments. My other two girls sometimes struggle with us having to deal with all Olivia’s stuff as well. The most recent is all the attention she gets. But they also love teaching others about everything Olivia deals with. I find teaching others about everything we have learned helps all of us with all that’s going on.
Miggy: What are the biggest worries you face for Olivia? On the flip side, what are the hopes and dreams for Olivia?
Katy: Biggest worry is how she will deal with everything. She is so strong tho it doesn’t seem to bother her. I hope it’s the same in the long run.
My hopes for her are that she outgrow all her “problems”. That she ends up going into nursing, medical school or be an EMT like she wants. She has seen so much in her little life I’m sure she could help some with dealing everything they might be going through.
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?
Katy: I love when Olivia starts talking about medical stuff. Everyone looks at us like how in the world does she know something like that. She also knows so much about her conditions that when others ask me about something about her she is likely able to answer it for me.
Miggy: How can people best approach or respond to Olivia? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Katy: I think the best thing in dealing with SN is to ask questions. Not everyone might feel this way but for us I love when someone asks. Then I can teach them more about whatever it is. Why does/did she need an AFO, cast or walker. The one thing I don’t like is when a mom tells her child to stop looking at Olivia or asking questions or whatever. I would rather them let the child come up to us and talk with us/ Olivia.
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 Olivia?
Katy: I love that my older girls know so much about what is going on with their sister. They are able to deal with it better I think then if we just told them she was sick. They know a lot about Olivia and what's going on. Even when they were 5 and 6 they were able to tell dad…. “she can’t have that remember, it has peanuts in it.” They watch out for her and help her (and me) as much as they can.
Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Katy: Take things one day at a time! Do your own research and don’t give up when everyone says there is nothing wrong when you know there is. You are the best advocate for your child.
Thank you Katy! One of the things I don't think most people think about when parenting a child who has special needs is time. The first year of Lamp's life was practically consumed with doctor appointments--specialists, clinics, therapy, surgery, follow-ups. The TIME spent trying to get your child they help they need can sometimes be overwhelming. I can understand why it is difficult for your other two children and I hope you get some respite soon. And a giant YES to your advise. Yes to doing your own research and yes to not giving up when you know something is going on. You mama's know more than you think. Thanks again Katy and big hugs to you and your family.
Thanks to everyone who tagged someone on my IG last Friday! I had a great response and am very excited to be sharing more stories in the following weeks. As always, please email me at thislittlemiggy at gmail dot com if you or someone you know would like to participate in the special needs spotlight.
Have a fantastic weekend!