This month, we are VERY excited to welcome our very first guest blogger, Katie Wyman, to the Unlimited Tomorrow blog. We hope that this will be the first of many blog posts written by people from our TrueLimb family.
Katie is a “journaler”-turned-blogger and the author of a book called “You Don’t Need 10“. Katie’s daughter, Paisley, recently received a TrueLimb from Unlimited Tomorrow.
As with all of our users, the Unlimited Tomorrow team really enjoyed getting to know Katie and Paisley. In getting to know them, we learned about Katie’s book and website. As a parent of a child with a limb difference, Katie has gifted us with a very unique perspective. Katie’s insights have allowed us to make numerous updates to our TrueLimb process for the better. For that insight, we are extremely grateful. Katie’s feedback also allowed us to better understand some of the emotional elements that can come with receiving a prosthetic arm.
At Unlimited Tomorrow, our first responsibility is to our users, and we recognize that our users are human beings with emotions, and thoughts and feelings. We’d love to be an engine to give voice to what people within the limb different community are thinking and feeling as they receive something that is both technology and limb. We’d like to take this opportunity to acknowledge that receiving a TrueLimb goes beyond simply receiving a medical device; That there is an entire world that the recipient is experiencing that is valid and important. We’re here for all of it – to support you or your loved one, to answers questions, to go at your pace, to create a device that feels and looks perfect, to work with you until we get it right, and to take your feedback and thoughts into account, always. Now, let’s hear from Katie!
Tell us a little bit about you, your family, and your daughter Paisley.
I was born and raised in Williston, ND. Russell was born in Sidney, MT, but raised and graduated from HS in Williston. After High School we moved to the Fargo/Moorhead area where we attended college. We married in 2006 and shortly after moved back to Williston where the job market was, and still is, one of the best. I have made maps for a local land company ever since. Recently starting working for a local financial firm part time as well, my dad owned a financial planning business for many years and the person that had been managing his clients after dad’s retirement has started his own business and some of my dad’s clients including my dad have transferred over. Russell, an electrician by trade, has a few master licenses for our state and the surrounding states. He is an account manager in Williston for an electrical contractor. I have been a volunteer for the Make-A-Wish foundation for over 20 years and am a wish grantor. I am an avid volunteer in our church Our Redeemer’s Lutheran Church in Williston and serve on the women of life board as well as the board of directors for the local bible camp. We have been foster parents for over 6 years where we have cared for many children of all ages. Russell is also a volunteer at church, serves on the board of trustees for church, the hockey board as well as the curling club board and is always willing to help someone somewhere. As a family we enjoy supporting each other in activities, camping, working and spending time at the farm, visiting my parents MN cabin and doing most anything together. I enjoy selling stella & dot jewelry and peddling items on ebay as well as working on youdontneed10 merchandise or blog posts.
In November of 2010 our son Jeten was born and not quite a year later in November of 2011 Paisley was born and in January of 2017 Maverick was born and completed the Wyman family.
Paisley has been very active and curious about life since day one. Everything is on her terms and she never ceases to amaze us. She is currently in the fourth grade and on the pre-comp dance team for a local studio, dances several hours a week. Tap is my favorite of hers. I could watch her tap all day. She is an orange belt in Taekwondo and working towards green, last year she won the indomitable spirit award. She was a member of the swim team for a couple seasons but couldn’t quite fit that in with dance now but maybe this summer she can join the summer team. She is super creative can often be found making something, painting, crafting, lately she’s been into hair and makeup and says she’s going to be a beautician or a lawyer.
How did you find out that Paisley would have a limb difference?
We found out the day she was born.
I checked into the hospital that morning and she was head down and in position she’d been moving around a lot in those last weeks, we even scheduled to have her turned one day but by the time they went to turn her she’d moved back where she was supposed to be. As I was about to get my epidural my water broke, sometime right there after she moved out of position and she became an emergency they were concerned the cord would come out before her and she’d die. Russell was holding her just minutes later. It was fast. I was hysterical I had not wanted a c-section and the whole episode was emotional. I remember they showed her to me in the delivery room and one little hand was peeking out but then they whisked her away Russell followed with her and I was stitched up and sent to recovery. When I awoke, I was in my own room, Russell came in alone and with all the strength he had proceeded to tell me she had been born with only one hand. I thought he was some how kidding I even said “that’s not funny” he said “I’m not kidding she only has one hand.” That is not something that I even thought could be possible I immediately asked to see her and he brought her in and I just cried I felt like somehow I should have known and somehow was responsible.
How has living with a limb difference affected Paisley? How has it affected you and your family?
She’s been affected because she is aware that people are always staring at her and making comments positive, negative or otherwise they are commenting and talking about her. She knows no different so she’s had to teach herself her way of doing things and we’ve had to think of different ways to help her do things. She’s known from a very early age that she was different, as a baby sitting on the floor, I would see her looking at her hands and then looking at mine or someone else’s it wasn’t taught to her it was felt. She feels different, she feels inferior, she feels anxiety and self-conscious about it. We have all been affected in some way if you are a part of our lives and spend any time with us you have had an experience with her, you have a story to tell of something that took place in your presence. We are a very aware family and have done our best to teach that everyone is different in some way everyone has something that they are dealing with some you can see and some you cannot. The boys, Jet especially, has had to deal with situations of people making fun of his sister or talking about her and often he has to watch what he’s doing so not to set a trigger for her, he can’t help her in any way, she is jealous of him and therefore it doesn’t matter what it is the help can’t be from him and that’s hard for him. I would guess he feels like we pay more attention to her, we don’t mean to or do it on purpose it just is what it is. We are doing our best all around. I remember him asking me one time was he was little maybe 6 or 7 if I was ever going to write a book about him, broke my heart.
She processes it the same way you process grief, in stages, she grieves her hand as a loss, as she ages and matures, she re-grieves. The anger phase is usually targeted at me, for multiple reasons. Her therapist, Sarah, works great with both of us, I can take the anger for the most part and I get it. She’s seen the same therapist for several years and as things escalate or slow down, she either sees her weekly, a stage we’re in now or twice a month or occasionally we’ve been able to go down to once a month.
Are there any support organizations or resources you have used that have been helpful?
The most support I have received all around is from Paisley’s therapist. I have found comfort in organizations and people online I follow several on social media. Paisley hasn’t found much yet in her life she turns to. Sarah explained it to me once because people are always telling us to watch this or look at that post or meet this person, etc and she often wants no part of that, Sarah explained until she can fully accept where she is and who she is she doesn’t see much in meeting or seeing someone with the same arm. I find comfort there but she doesn’t, she is not ready to bond with someone else because they both have the same arm, she struggles to see how that helps her and often doesn’t see how it changes her life in any way, at the end of the day she is still the same.
How did you become acquainted with Unlimited Tomorrow?
Apparently, a few years ago while researching online and looking for any resources I could find for my daughter I contacted you, I don’t remember this but I believe it, I was contacting anyone I could find, this past June, Shirley was working for Unlimited Tomorrow and contacted me, she said that when I reached out a few years ago Paisley wasn’t a candidate due to age and wrist function but she thought she may be a candidate now. So, we began the process this past June.
Paisley just recently received her TrueLimb prosthetic arm. What was that process like for you, and for her? What was good about it? What was challenging?
Overall great! I would recommend it. I don’t have much to compare it to but it went well. The first thing I asked in my first phone call with UT was where do we have to travel to accomplish this and the answer was nowhere. It was all handled via google meet and FedEx, zero issues resulted. Once the arm came and was being calibrated and set up, she struggled to sit for some of those meetings and pay attention but we completed it all. Having to pack up and travel somewhere would have been hard so the time taking a bit longer was worth it to me.
What would you tell another parent getting ready to go through Unlimited Tomorrow’s process?
Be patient, it is all worth it.
Ask lots of questions.
The 3D scanner was hard for me, don’t be afraid to have them walk you through it.
Don’t be afraid to speak up and say something isn’t working or you don’t like it or you want something added or changed, they can do it all.
If there was one thing you would want to say to the team at Unlimited Tomorrow, what would it be?
Ohh man, I’ve said the things to the people working directly with us but thank you just isn’t enough, I need a new word for thank you times a million. You are changing the lives of children and adults and mothers all over the world. You deserve all the credit for the smiles she’s had on her face. We are so grateful you were able to give our baby fingers that move, something she has been asking for since she could speak. Thank you for everything you have done for us.
What made you want to write a book/become a blogger?
I did not set out or desire to do either. I have always journaled, since I was a young teen and still today, I write a lot. Sometimes a little something every day or week or once a month it goes in phases but I’ve always done it and have always found comfort and peace in doing it. After Paisley was born, I realized that a lot of the journal entries were about her or something we’d been though with her. I felt compelled in early 2016 to turn them into story format not sure why but it felt good and by that summer I wondered what I was doing and why. I felt driven to move forward still not really sure why. Eventually I saw something about publishing a book, contacted a few different people talked to many that were interested ended up going with a small firm that had probably too many projects going and ultimately went bankrupt so the first release in 2016 that turned out well, sold many books ultimately didn’t amount to anything for me except debt and essentially died as the publisher closed. I was obviously sad and frustrated but realized that I hadn’t done all this work to let it die now and even if I didn’t sell as many books as the first time and no one wanted the second one I couldn’t let it die, so I started over with a new publisher, new cover, same book, some different pictures and more chapters added to the back, changed a few words around and the second edition was released in the Fall of 2019. Early 2020 I started a website where I could sell the book myself as well as other merchandise and try to connect with other people. I did a couple blog posts in the beginning of the website but never kept it up until this past Fall. As Paisley’s emotions and struggles escalated and were becoming more noticeable and more involved, I felt they should be known to people for some reason I feel like people want to hear what’s going on in her world especially if they know her and encounter her. I started off the school year with a weekly blog post and some weeks as Tuesday comes around I have no clue what to write about but I’ll sit down and something will come to me or even a couple Tuesdays an event has happened that day that becomes the weekly post. Haven’t missed one so far, 25 in, hopefully I can keep it up. I enjoy it and the feedback appears to be genuinely real and supportive. I have appreciated all of the comments, likes, shares and support immensely. I can’t really explain why I have done this but I’m glad I followed my feelings and accomplished it. I have found great joy and peace in doing so. One of my husband’s great aunts asked if I’d take the blog posts and put them into a book for her so I did a couple up. Found some things I didn’t love about my formatting so I am re-doing it before I add that for sale on the website.
If you could control the interaction when new people meet Paisley, what would that look like?
Sometimes I have been able to get to someone before they meet her and I will tell them she doesn’t have a right hand to alleviate shock to them that takes place in front of her. Anyone having an immediate reaction to seeing her I want to avoid if at all possible. There have been far too many that were rude and inappropriate and upsetting. I am doing everything I can to make her feel good about who she is and the way God made her. God doesn’t make mistakes and he has a specific plan and a purpose for her.
Are there certain types of situations that make Paisley uncomfortable?
Almost anything new makes her uncomfortable and you will often find her hiding her arm somewhere or somehow so people don’t see her. Every room she walks in she hides her arm either in her coat or behind her back. Through stores, parks, airports, everywhere she goes. She has been at the same elementary school for 5 years and every year as school gears up her anxiety is through the roof over who her teacher will be and what they will say and if she will have patience with her and like her and if there will be a new student, etc, etc.
Is there anything that has been frustrating over the years with regard to prosthetics?
We only have one other experience, with Shriners in Minneapolis and it was also great. Didn’t work out for us as their case plan at the time was very rigid with no room for gray area or adaptations. She received a passive arm that had attachments that could screw onto the end. You would unscrew the hand part that didn’t move just a palm hand for cosmetic purposed only. You would unscrew that and switch it out depending on what you were doing we only had one other one, the lego hand we called it. She would occasionally wear the passive hand in public to alleviate some stares or function with the lego hand around home but it didn’t improve the quality of her life, in some way was a hinderance to her and didn’t work out. She had to commit to that arm for a year before she could progress through the program to get something more, myoelectric or anything else. It wasn’t going to work for her.
How can people learn more about your journey?
If you or your loved one is ready to start your journey, or if you are a TrueLimb user that would like to be a guest blogger, you can contact us here! Many thanks to Katie and Paisley for sharing their story!