Vanessa's story
Vanessa shares her story about her gorgeous daughter ivy.
Tell me abit about you?
Our family lives in Vancouver, Canada! I met my husband about 7 years ago, and we quickly fell in love and knew we wanted to spend our lives together. We had our first daughter, Elena, in June 2016, and our second daughter Ivy in February of 2019. I have my history degree and hope to be a librarian one day, but for right now, I enjoy my days staying home with my girls, and I work in the evenings in the service industry.
What is your daughters limb difference?
My daughter Ivy was born without forearms and hands, and she also has PFFD (Proximal femoral focal deficiency), which basically means that her left hip is curved and her left femur is curved and shorter than her right.
When did you find out?
We found out when I was 19 weeks pregnant. We had our detailed scan, and heard the results the next day from our midwife. I felt overwhelming feelings of grief, fear, worry, and anxiety… suddenly the future was so unknown and it was terrifying. I felt such fear for the health of my baby girl, as we had so many unanswered questions. We were quickly referred to BC Children’s Hospital where we met with perinatologists, medical geneticists, and genetics councillors, but we ended up with more questions than answers and sadly they were unsupportive in terms of us continuing our pregnancy.
What help and support have you been offered?
Since Ivy was born, I have actively sought resources, support, and a community of families with kids like Ivy… and I have not been disappointed. When Ivy was one week old, she was enrolled in the War Amps of Canada CHAMPS program (for child amputees), and at just two weeks old, we attended our first CHAMPS seminar. It was the first time that my husband and I felt like we had found “home”, and we felt so much hope for Ivy’s future. It was an overwhelming sense of relief. We connected with so many other families in BC who have children with different amputations, and we learned more about what kind of support the War Amps can offer us. They will help with funding for prosthetic devices, they help advocate for government funding for amputees, and offer parents resources for when their child amputee starts school or learns how to drive, etc.
We’ve also connected with The Lucky Fin Project, which is a non-profit located in the states for kids with limb differences. The Lucky Fin community has been absolutely incredible, and I feel grateful to be a part of it. We have connected with so many families who are on a similar, if not the same, journey, and in June 2020 we are actually flying out to Michigan for the Lucky Fin Project Weekend, where we will get to meet so many of the families we’ve connected with online. I hope that Ivy is always proud of her lucky fins, the way I am!
We do receive local support from our Child Development Centre, where Ivy sees an occupational therapist, a physiotherapist, and a paediatrician. They offer home visits, programs like a weekly gym social for kids under 5 who are not yet mobile, where they can play with occupational therapists, and they’ve loaned us equipment for Ivy like a specialized high chair.
There are more resources and support out there— so many more that I can list. I was worried that Ivy’s level of amputation was so rare and that I would feel so alone in this journey, but that has not been the case. We’ve truly made so many incredible connections and I already feel like we’re a part of a whole new family.
What are the positives about your daughters limb difference?
Definitely the community that we’ve been so generously welcomed into. The parents I’ve met are amazing with their support and encouragement, and its an honour to watch their little kids with limb differences as they grow and thrive. The Lucky Fin family is truly a family and I feel lucky to be a part of it. The disability community in general has been such a warm, welcoming community. It has challenged my preconceived notions of what it means to have a disability, and I’m grateful that its changed my perspectives and educated me. I feel like my first daughter made me a mother, but Ivy has made me the mother I was meant to be, and that has been truly magical. I know she is going to teach me so much about determination, resilience, perseverance, and strength. But she’s also just a normal baby who loves to laugh, smile, and be tickled, who hates sleep and hates broccoli. Regardless of her abilities, I love her and she has completed our families beyond my wildest dreams.
What negatives have you encountered?
Honestly, there’s really only one negative, which is shocking to me because when I first found out about Ivy’s limb differences, I was terrified. I was worried about her quality of life (thanks to the doctors who told me that she would have no quality of life), I was worried about how she was possibly going to do things like take care of herself, draw, tie her shoes, and live a “normal” life. Now, even though she’s only 11 months old, I can honestly say I’m not worried about any of that. She’ll figure out a way to do things, and it may be different, but she’s perfectly unique and I love that about her. But even if she does run into things that are challenging or that she can’t do, it doesn’t matter. It just doesn’t worry me. I think she’s perfect just as she is, and i don’t know what I was so worried about before!!
That being said, the one thing that does worry me is how other people are going to make her feel. I know that every day for the rest of her life, she will deal with the stares, the comments, questions, kids pointing, and I’m sure that at some point kids will be mean and make fun of her. This is what I dread. I don’t want her to ever doubt herself, I don’t want her to doubt her place in our family or her place in this world. I hope she always knows how perfectly made she is and how loved she is. It terrifies me that someone could potentially have the power to make her doubt any of this. So hopefully as a mother, I can instil in her the confidence and strength that she will need to just shrug off the comments, questions and stares. I will try my best to teach her that it doesn’t matter what others think, but it’s still a reality that she will have to deal with these issues, and I’m sure at times it will become exhausting and frustrating. But I am hopeful that my love will be enough to let her know that she is perfect in every single way, and that she is so so so loved.
Has your daughter needed to have any procedures?
Not at this point. We have met with a paediatric orthopaedic surgeon, and we will continue to have follow-up visits as she grows. The surgeon is hopeful that after weight-bearing on her left leg and learning to walk, her left hip will straighten out on its own, but if not, then she will need surgery around the age of three. At the age of 5, depending on her left femur’s growth, there’s the possibility of leg-lengthening surgery. I’m trying not to worry too much about these options, as they are both in the future and not certain at this point. It all depends on how her legs grow! We are getting her a lifted shoe at the end of the month so that will hopefully help her as she learns to stand and walk!
What is the best advice you could give to a family who are pregnant, or have just had a baby with limb difference?
My best advice would be that its okay to feel all of the emotions. Its okay to grieve— while your baby will never feel “loss” because they were born that way, you as a parent feel that loss quite intensely. The baby you envisioned is in fact quite different. Sometimes I feel guilty for the feelings and emotions I experienced, but I have to be gentle with myself and remind myself that it was all part of the process. It took me months to process those emotions, to heal, to accept, and to start to feel hope. It wasn’t until she was born that I finally started to feel like things would be okay. Now, I wonder what all the worry was for, and I wish it hadn’t been so hard to bear the news of her limb difference, yet it was. It was incredibly hard. It was real, raw, and heartbreaking. I felt fear, sadness, anger, denial. I didn’t understand why this was happening to us. But those months of processing did wonderful things for my heart— it prepared me for her arrival, it strengthened my resolve as a mother, and my love for Ivy increased beyond what I thought possible.
My second piece of advice would be to reach out. Seek those connections with other parents who are on a similar journey, and seek that community. It’s out there, I promise. It may be hard to find at first, because you don’t know where to look, and if you’re like me, you didn’t even know that some babies were born missing limbs. It wasn’t in the realm of possibilities when you imagined your pregnancy and tiny little one. But it is the most inclusive, diverse, kind, accepting community I’ve ever been welcomed into, and I’m honestly happy and grateful that we’re a part of it. I’ve made some incredible connections with other parents, and I can’t wait to meet them in person. I know that over the years, they will become family.
What advice would you give a kid with a limb difference?
I’m not sure that I’m the right person to give advice to someone who is born with a limb difference, because I’ve never walked in their shoes. I don’t know what its like to have a limb difference. I only know what its like to be the parent of a child with a limb difference. But if i could say anything, it would be what I want my daughter to know: that you are absolutely perfect, just as you are. You are whole, you are complete, you are unique, you are perfect. You aren’t missing anything. You have a very important place in this world, and you are here for a reason. And I hope you never feel ashamed of your limb difference and never feel the need to hide, because you are exquisitely, wonderfully made. I wouldn’t change you for the world. <3
instagram: @vanessamcleod_
blog: growlikeivy.com
Our family lives in Vancouver, Canada! I met my husband about 7 years ago, and we quickly fell in love and knew we wanted to spend our lives together. We had our first daughter, Elena, in June 2016, and our second daughter Ivy in February of 2019. I have my history degree and hope to be a librarian one day, but for right now, I enjoy my days staying home with my girls, and I work in the evenings in the service industry.
What is your daughters limb difference?
My daughter Ivy was born without forearms and hands, and she also has PFFD (Proximal femoral focal deficiency), which basically means that her left hip is curved and her left femur is curved and shorter than her right.
When did you find out?
We found out when I was 19 weeks pregnant. We had our detailed scan, and heard the results the next day from our midwife. I felt overwhelming feelings of grief, fear, worry, and anxiety… suddenly the future was so unknown and it was terrifying. I felt such fear for the health of my baby girl, as we had so many unanswered questions. We were quickly referred to BC Children’s Hospital where we met with perinatologists, medical geneticists, and genetics councillors, but we ended up with more questions than answers and sadly they were unsupportive in terms of us continuing our pregnancy.
What help and support have you been offered?
Since Ivy was born, I have actively sought resources, support, and a community of families with kids like Ivy… and I have not been disappointed. When Ivy was one week old, she was enrolled in the War Amps of Canada CHAMPS program (for child amputees), and at just two weeks old, we attended our first CHAMPS seminar. It was the first time that my husband and I felt like we had found “home”, and we felt so much hope for Ivy’s future. It was an overwhelming sense of relief. We connected with so many other families in BC who have children with different amputations, and we learned more about what kind of support the War Amps can offer us. They will help with funding for prosthetic devices, they help advocate for government funding for amputees, and offer parents resources for when their child amputee starts school or learns how to drive, etc.
We’ve also connected with The Lucky Fin Project, which is a non-profit located in the states for kids with limb differences. The Lucky Fin community has been absolutely incredible, and I feel grateful to be a part of it. We have connected with so many families who are on a similar, if not the same, journey, and in June 2020 we are actually flying out to Michigan for the Lucky Fin Project Weekend, where we will get to meet so many of the families we’ve connected with online. I hope that Ivy is always proud of her lucky fins, the way I am!
We do receive local support from our Child Development Centre, where Ivy sees an occupational therapist, a physiotherapist, and a paediatrician. They offer home visits, programs like a weekly gym social for kids under 5 who are not yet mobile, where they can play with occupational therapists, and they’ve loaned us equipment for Ivy like a specialized high chair.
There are more resources and support out there— so many more that I can list. I was worried that Ivy’s level of amputation was so rare and that I would feel so alone in this journey, but that has not been the case. We’ve truly made so many incredible connections and I already feel like we’re a part of a whole new family.
What are the positives about your daughters limb difference?
Definitely the community that we’ve been so generously welcomed into. The parents I’ve met are amazing with their support and encouragement, and its an honour to watch their little kids with limb differences as they grow and thrive. The Lucky Fin family is truly a family and I feel lucky to be a part of it. The disability community in general has been such a warm, welcoming community. It has challenged my preconceived notions of what it means to have a disability, and I’m grateful that its changed my perspectives and educated me. I feel like my first daughter made me a mother, but Ivy has made me the mother I was meant to be, and that has been truly magical. I know she is going to teach me so much about determination, resilience, perseverance, and strength. But she’s also just a normal baby who loves to laugh, smile, and be tickled, who hates sleep and hates broccoli. Regardless of her abilities, I love her and she has completed our families beyond my wildest dreams.
What negatives have you encountered?
Honestly, there’s really only one negative, which is shocking to me because when I first found out about Ivy’s limb differences, I was terrified. I was worried about her quality of life (thanks to the doctors who told me that she would have no quality of life), I was worried about how she was possibly going to do things like take care of herself, draw, tie her shoes, and live a “normal” life. Now, even though she’s only 11 months old, I can honestly say I’m not worried about any of that. She’ll figure out a way to do things, and it may be different, but she’s perfectly unique and I love that about her. But even if she does run into things that are challenging or that she can’t do, it doesn’t matter. It just doesn’t worry me. I think she’s perfect just as she is, and i don’t know what I was so worried about before!!
That being said, the one thing that does worry me is how other people are going to make her feel. I know that every day for the rest of her life, she will deal with the stares, the comments, questions, kids pointing, and I’m sure that at some point kids will be mean and make fun of her. This is what I dread. I don’t want her to ever doubt herself, I don’t want her to doubt her place in our family or her place in this world. I hope she always knows how perfectly made she is and how loved she is. It terrifies me that someone could potentially have the power to make her doubt any of this. So hopefully as a mother, I can instil in her the confidence and strength that she will need to just shrug off the comments, questions and stares. I will try my best to teach her that it doesn’t matter what others think, but it’s still a reality that she will have to deal with these issues, and I’m sure at times it will become exhausting and frustrating. But I am hopeful that my love will be enough to let her know that she is perfect in every single way, and that she is so so so loved.
Has your daughter needed to have any procedures?
Not at this point. We have met with a paediatric orthopaedic surgeon, and we will continue to have follow-up visits as she grows. The surgeon is hopeful that after weight-bearing on her left leg and learning to walk, her left hip will straighten out on its own, but if not, then she will need surgery around the age of three. At the age of 5, depending on her left femur’s growth, there’s the possibility of leg-lengthening surgery. I’m trying not to worry too much about these options, as they are both in the future and not certain at this point. It all depends on how her legs grow! We are getting her a lifted shoe at the end of the month so that will hopefully help her as she learns to stand and walk!
What is the best advice you could give to a family who are pregnant, or have just had a baby with limb difference?
My best advice would be that its okay to feel all of the emotions. Its okay to grieve— while your baby will never feel “loss” because they were born that way, you as a parent feel that loss quite intensely. The baby you envisioned is in fact quite different. Sometimes I feel guilty for the feelings and emotions I experienced, but I have to be gentle with myself and remind myself that it was all part of the process. It took me months to process those emotions, to heal, to accept, and to start to feel hope. It wasn’t until she was born that I finally started to feel like things would be okay. Now, I wonder what all the worry was for, and I wish it hadn’t been so hard to bear the news of her limb difference, yet it was. It was incredibly hard. It was real, raw, and heartbreaking. I felt fear, sadness, anger, denial. I didn’t understand why this was happening to us. But those months of processing did wonderful things for my heart— it prepared me for her arrival, it strengthened my resolve as a mother, and my love for Ivy increased beyond what I thought possible.
My second piece of advice would be to reach out. Seek those connections with other parents who are on a similar journey, and seek that community. It’s out there, I promise. It may be hard to find at first, because you don’t know where to look, and if you’re like me, you didn’t even know that some babies were born missing limbs. It wasn’t in the realm of possibilities when you imagined your pregnancy and tiny little one. But it is the most inclusive, diverse, kind, accepting community I’ve ever been welcomed into, and I’m honestly happy and grateful that we’re a part of it. I’ve made some incredible connections with other parents, and I can’t wait to meet them in person. I know that over the years, they will become family.
What advice would you give a kid with a limb difference?
I’m not sure that I’m the right person to give advice to someone who is born with a limb difference, because I’ve never walked in their shoes. I don’t know what its like to have a limb difference. I only know what its like to be the parent of a child with a limb difference. But if i could say anything, it would be what I want my daughter to know: that you are absolutely perfect, just as you are. You are whole, you are complete, you are unique, you are perfect. You aren’t missing anything. You have a very important place in this world, and you are here for a reason. And I hope you never feel ashamed of your limb difference and never feel the need to hide, because you are exquisitely, wonderfully made. I wouldn’t change you for the world. <3
instagram: @vanessamcleod_
blog: growlikeivy.com
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