Personal update: meet the maker
Today I want to share something very personal I have never really talked about before. Not that it’s a secret or anything; I just didn’t really have a reason to share my story. In this blog post you can meet the maker behind wilmade.com!
Born with a tumor
I was born with a benign tumor in my face. For more than 22 years doctors did not know what it was exactly. They had never seen it before and said I was the only one in the world as far as they knew.
I have had surgeries when I was younger but the tumor came back immediately. There is nothing they can do. I’ve had a rough childhood with the tumor growing faster as I got older, but against all odds the last 6 years the growth has been stable. The future remains a big question mark.
Less than a year ago (2017) I did a second opinion. Against all my expectations this new team was able to give me a diagnosis: Facial Infiltrating Lipomatosis, an ultra rare condition with worldwide only a handful of people affected. But still, this meant I wasn’t alone anymore after 22 years!
I immediately started searching online for other people with this rare condition. So far I have found 20 people in the whole wide world. We stay connected through Facebook and share pictures and experiences. It’s amazing how many similarities we have and how much we look alike. I consider them as my new ‘extended family’. Coming years I want to travel around the world to meet many of my new extended family.
Join me on my journey
My life is changing so fast (in a positive way) and it’s all so exciting! All these life changing events also have an impact on my crochet journey, which I will update you on soon!
God bless you. You seem like a very strong young women and getting stronger as you go.
Your story touches my heart, Wilma and more so your generosity in sharing your amazing knowledge and skill of crochet. I will pray for your life to continue to thrive with the condition in remission. You are a prime example of the meaning of a strong woman, someone who is positive in attitude and sharer. I love your crochet style and in particular the picture showing alternately a 3-colour scheme and a neutral scheme. Just beautiful, as you are. Love from Maree
Wilma eres una mujer muy linda y talentosa. Me encantan tus tejidos. Un abrazo desde Colombia
Hi Wilma, My family is from Holland too, (Rotterdam) . I have never been there, hopefully someday! My mom always told me about the tulips in Holland every year when ours came up in our yard when I was a young girl .
I am always happy to see an email from you with your patterns you already feel like family to me. Now I see your beautiful story and wish you all the best, You are such a beautiful talented young lady thank you for sharing with us.
Wilma, you are a lovely and talented young woman. Thank you so much for sharing your beautiful patterns with us. As a novice, I appreciate the detailed guidance that you give. I’m just finishing a Bella Vita shawl now and am anxious to begin Ana Lucia. What a blessing you are!!!
You are a strong gifted woman and thank God you are able to share your story and talents. I am working on the This Is Me Shawl. I love the intricate details of this shawl but I’m stuck on row 28. I have 3 stitches before the ch 2 space and can’t figure it out. Would you be able help me find my error? I ripped it 3x. I would really appreciate your help. I am making this shawl for a woman who worked as an aide for my mom.
I admire your personal courage and tremendous determination that is reflected in the designs of your beautiful shawls and other designs. I have started to design a few shawls at my advanced age (72) but I never thought how a person’s struggle to overcome physical and emotional problems can provide the energy to create something memorable that can be reflected in artistic design of something like a shawl. Thank you for giving me the needed insight and energy needed to go on creating something that I consider beautiful yet practical to wear plus staying warm.
Hi Wilma , it’s very good to know about you. Each of us has our strength and each of us has weaknesses , but very few of us have the courage to expose our real self. You are a wonderful example of that rare courage. May you find the blessings of Jesus everyday and be blessed in every way that your heart desires. I suffer from vasculitis and it has affected my joints and lungs that sometimes affects my daily routine. I’m a mother of two teenagrs. Sometimes in our suffering we don’t get the support and response that we want from those we love. Few years back I suffred from left facial palsy.So in a way I know what you may go through. It’s beautiful to see your crochet work. I too started crochet about 2 months earlier. I hope to make progress in my work. Thank you for being an inspiration to so many of us. This is Leena from India.
Hi Wilma , it’s very good to know about you. Each of us has our strength and each of us has weaknesses , but very few of us have the courage to expose our real self. You are a wonderful example of that rare courage. May you find the blessings of Jesus everyday and be blessed in every way that your heart desires. I suffer from vasculitis and it has affected my joints and lungs that sometimes affects my daily routine. I’m a mother of two teenagrs. Sometimes in our suffering we don’t get the support and response that we want from those we love. Few years back I suffred from left facial palsy.So in a way I know what you may go through. It’s beautiful to see your crochet work. I too started crochet about 2 months earlier. I hope to make progress in my work. Thank you for being an inspiration to so many of us.
Hi Wilma. I love your shawl patterns! Making a This is me shawl in Scrumptious Lush Scheepjes Whirl as a Christmas gift at the moment. It’s looking really good. ( Outside in to get the dark chestnut colour as a border + tassels. Just want to mention. I think there may be a translation or printing error in your post about your condition. I thought FIL was a congenital benign ( NON malignant) tumour. Its described as malignant above. Stay well and keep designing beautiful things for us to make!
Hi Janice, thank you so much for letting me know! You’re right, it should be non malignant! I’ve changed it, thanks again for letting me know!! ❤
Hi Wilma, thank you for your patterns…perfect for me as they are in ‘English’ crochet stitches… I get confused with the American patterns 🙁 Glad that you now know what the tumour is and that you are not alone. I wish you well!
Wilma, love your patterns.
We are in Grand Rapids, MI area. I saw a little boy about 4 years old with a large tumor on his face like yours. I said to my husband, I wonder if it can’t be removed. I think he may have the same thing that you do. He was a sweet normal a time little guy.
Thanks for sharing,
I absolutely ADORE you! I am so well known for my love for those who have special features, like yours! I’m instantly drawn to anyone who has a big beautiful birth mark, or any other special thing about them! The differences in each and everyone of us is what sets us apart, makes us unique, and believe it or not, has a MASSIVE part of who we are and why we are. It makes you, shapes you, and turns you into who you are, and I LOVE your beautiful feature!
I envy you, for your strength. I don’t feel that you should be afraid to talk about it, but that’s because I am not in your shoes, and knowing that it’s your tough thing, and you shared it with us anyway, makes me honour you!
I am 30, from Canada, and I was a very very very bad IV drug user. I have scars obviously, and that was my insecurity. More of a shame actually.
Now, I embrace it. I was in a coma, and absolutely beat ALL odds because they were strongly against me as I had a severe blood infection that started in my heart, and spread into my lungs.
Why do I embrace it? I’ll tell you why.
Because it SHAPED me in every way imagineable.
Because of it, I am a better, stronger and more compassionate and loving person. I wasn’t a nice person before. I was hateful, and hated myself. Looking at my life now, how could I regret anything ?
I chose to learn. And to take the negative and turn it into a positive, and try and help anyone who is in the place I was in, give them hope, and just to anyone who needs some love. I love more, work harder, and try and make a difference everywhere I go.
That way, everything I did, all the years I suffered, aren’t all for nothing.
I believe that there is a blessing hidden in every hard time, and everything that may seem like a curse, has a purpose !
You just got to remember that light will always illuminate the dark 😉
I just wanted to share my story, because I was ashamed of myself for so long and I just wish I had the courage and bravery to step out and step up against my own personal hatred, and face it a different way like you have !
Aw I just think you are such a doll!
Seriously gifted crochet artist as well!
Love from Canada 🙂 xox
And thanks so much for sharing your patterns! Your hard work and dedication are not unnoticed !
Wilma, we all have imperfections. Some of us have them on the outside and some on the inside. You have already learned in your young years that we are not our bodies. We are our spirits and souls. And all of us have purposes that we have to find. Some of us fail to find the purpose for which we were born. But you have. And no one can ask for much more than that. Your courage is inspiring and your designs are also truly inspirational! Thank you for graciously sharing them with the rest of us crochet geeks.
I love your artistry! Not only in the designs, but for your heart. You are so sweet and gorgeous! But I totally believe that you are a blessing to the ones who know you. Keeping you in my prayers .
Hi: I substituted at a local Christian school in my area. We had a young boy name Hick who had a similar facial growth. He has already had multiple surgeries but nothing much else could be done. He’s a Happy child
Hi Teresa! Thank you for your reply. Do you maybe know if the boy was born with it, or did it grow later in life? If you happen to know his parents, would it be possible to send them my page or my email address ([email protected]) and ask if they want to reach out to me? I would love to get in touch with them! Hugs from Holland
His name is Huck. Not hick spell check changed my original spelling.
Hi, my name is Barbara and I live in Amarillo, Texas in the USA. 2 yrs ago my niece had a baby who was born with Harlequin Ichthyosis. She was one of a handful of children living with this diagnosis and thru searching on the internet she has been able to meet quite a few of the mothers who have children with this disease. One has written a book that I think will help you in your journey. It is called ” A Different Beautiful” by Courtney Westlake.
So many folks here have said everything I could say, but I just wanted to jump in and say it too because I can’t help myself! You are a rare and beautiful flower, a true gift in this world, especially for the courage and compassion you show.
Very few would be strong enough to overcome their fear of rejection and put themselves out there this way, and I know what it takes to be that brave. I honour you. I pray that your light shines into a darkness that the world hasn’t even really discovered yet (and we thought we knew it all right?!) and gives your extended family the strength and confidence to shine bright as well.
I adore crochet and your patterns are amazing. I’m astounded everyday at the joy, love and connection the sharing of crochet brings to the world, and hope to do a lot more of that myself! Thank you for being so generous, so brave and the fullness of who you are.
Tam x x
Thank you so much Tam, really appreciate your supportive words. Made me smile <3 Sending you hugs from Holland!
Your words Tam are beautiful. I feel she is the light in the darkest night. Her work is totally amazing and wishing her blessings in helping others to create such beauty!
Hi Wilma. You are a beautiful woman. I am loving this post and will try my (not so practical) hands at this. I will watch the tutorial over and over again until I get it. Thanks for this and best wishes from Ireland. Nevin
Thank you so much for your kind words, really appreciate it <3 I'm sure you can do it, it looks harder than it really is! 🙂 x
Thank you for brave story. It gives inspiration & reaches so many people. I love your blog and all your crafts, but look forward to more stories about your life as you. Blessing on you and stay well. I am looking forward to your your new series coming out:)
Thank you so much for your kind words Janice, really appreciate it 🙂
LOVE YOUR ITEMS, AND YOUR ATTITUDE, STAY STRONG. GOD made you perfect in his eyes, and that is all that matters. Sorry for your struggles.
Your work is beautiful.
Thank you so much dear Cheryl, really appreciate it!
I just love your patterns. I saved the Ana and Pom pom shawls and I’ll wait for that special yarn I will find. You are a lovely young lady. and very brave and strong to share your story. I wish you all the best in the world and I will pray for your health and happiness. I am a retired primary teacher from Buffalo, NY, USA, and I teach crochet in a local store and a library where I also work.
Thank you so much Carole, really appreciate your lovely comment! I really love that you teach crochet lessons and spreading the love for crochet! 🙂
Thank you for being brave and sharing your story. You’re a beautiful girl (woman) and it’s wonderful you’ve found others with the same conditions and now you have friends around the world- and even more friends with your lovely patterns. I love your Ana Lucia and can’t wait to try and make it.
You are so talented and brave! Thank you for sharing your story and your beautiful patterns. Last month I made your Bella Vita shawl for charity. It ended up being presented to a 92 year old lady for her birthday who feels she had a “ beautiful life”.
I love your crochet work on the blue circular shawl. I like to crochet very much and it is nice to have a simple one for TV watching and relaxing.
I will give this one a try, I also wish you health and happiness. You are a brave and lovely young woman.
Thank you so much dear Kaye, really appreciate it <3
Hi Wilma. You are a so beautiful lady. Thank you for sharing your personal story. I really support you and your extended family.
I have a facial tumor as well. Started at the age of 5. Insane inseen this and found you. You’re so brave. Feel free to email me.
Hi Wilma, I know someone that I have known for, eeewwww more years than I thought and it just shocked me how long… : /
Anyway, back to the important message. I know someone that has had a tumor on her face at her lower jawline. I would say it showed its self when she was around 19 or so. I believe it is the same thing but I believe it took her like 20+ years to even put a name to it. I think it is the same thing. She is a darling lady. I really never notice that she has this tumor. It is just not what people look for or notice when they are enjoying the company of a wonderful person,.
I think it is great that you shared. I hope she has found you and that the two of you get to compare and become great friends. I have not talk to or seen this nice lady in like 20 years. Her name is Sandy. I am going to look in on you every once in a while and see if I can put Sandy in touch with you…that is …if you and Sandy have not already come in contact.
I love your site and and your work is so nice. You are a darling little lady; do not ever be shy !
I wish you the very best in all that you do and want to do.
Hi Caramia, thank you for your comment! Wow, I’m glad they finally have a name for it after all those years! Many people tell me the same, about noticing it. They say after 5 minutes they don’t notice it anymore 🙂
I don’t know her, but I would love to get in touch! Does she have Instagram? She can also email me if she prefers. Or I can contact her if she gives her email. Thank you for connecting us! 😀
You’re beautiful! So glad you finally have a diagnoses and are able to connect with your new extended family! ❤️
Thank you so much Destiny <3
Wow sometimes the internet can be such a great thing! So glad your research has brought you a new found confidence and that you can help others, you are gorgeous and thank you for sharing this and free patterns!
Thank you dear Rhonda, really appreciate it <3
Hi Wilma ~ thank you for your tutorials. I did the double brim hat. BTW you are beautiful!
Hi Eva, you’re very welcome! Thank you so much for your kind comment, really appreciate it <3