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Adult with PFFD
Hello! I was born with PFFD affecting my left leg. I was also born with my left arm ending at the elbow and my right arm ending below the elbow with two fingers. I welcome comments/questions from experienced persons with PFFD as well as youngsters and parents. I do not easily offend and no question is too personal.
I decided to establish a blog after I heard my aunt talk about the evening I was born. I realized that I was oblivious to some of the most significant stress my family had ever faced. My aunt shared how she cried herself to sleep the night I was born and how she just did not know what God was thinking to create a child with so many physical needs. I had never thought about how these first months of my life affected my whole family and not just my mom and dad.
By the time I had memory, I had already shown my family that I was an active and happy child. The family had decided to let me do whatever my non-disabled cousins did and just let me show them what I could and couldn't do for myself. So hearing my aunt tell these memories, as she was introducing me to speak to a group of senior citizens, was somewhat surprising.
You must understand that I was sitting there at age 33 with lots of education, happily married, mother of 3 (now a mother of 10), who can drive and take care of most any task that needs done. I have rarely had a doubt about what I could achieve so to know that others had, had doubts suddenly made God's plan for my life so much more real and precise. We are all "fearfully and wonderfully made". God has a plan for each child to succeed because of who they are, not in spite of their label.
My thought and prayers are with each new parent as I read your stories and I know that someday your adult child will be surprised that you were stressed and you will be most blessed.
BTW-I blog at www.2bcontent.blogspot.com
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I found myself having a
I found myself having a "bad" day today as my worries, fears and a need to understand why would not escape my thoughts. I logged on to find some kind of support and ran across your blog. As tears were running down my face, I suddenly felt a sense of peace. Your message really touched me. Some days are better than others and sometimes I can't seem to stop thinking about my daughter's future. My husband (33) and myself (28) couldn't wait to meet our daughter! We were told my whole pregnancy that everything was moving along just perfectly, so you could imagine our shock when our daughter was born. I hadn't noticed anything wrong with her. She was the most beautiful thing I had ever seen. I heard the doctor tell someone to get the NICU in here and after that all is a big blur! My daughter was born 15 weeks ago with tibial hemimelia and a short femur of the right leg. She is also missing a total of 3 fingers. She will have her right leg amputated at about 10 to 12 months of age. She still is the most beautiful thing I have ever seen and I couldn't imagine my life with out her. She is so much fun! I feel so lucky to have been given the chance to raise her, but like your aunt, sometimes can't seem to understand why God would do this to a child.
I would love to hear more about your childhood and what it was like growing up. I am a first grade teacher and see first hand how loving and accepting children are, but I worry about how others will treat her growing up. I too plan to treat my child as I would any child and let her do all the things any child would do.
I have to admit that I sometimes feel I've already failed at being a good mom to her, because I didn't make her right. Did you ever blame your parents? I appreciate you taking the time to write your blog, like I said earlier, it really gave me a sense a peace to hear how happy you are and to remind me that God has a special plan for all of us!
Blame
I blamed my parents for a lot of things as I grew up....I think most kids and even some adults do. I blamed them when I thought I wasn't as fashionable as the other kids. I blamed them when I had braces on my crooked teeth for 4 years. I blamed them that my nose looked pugged....but I don't remember blaming them for how God designed me. I am sure on some off day when life was cruel or I was in a lot of pain, I may have told them I blamed them, but I don't remember any specific time and I certainly did not feel that way. It was not acceptable in our family to blame others. This rule was more implied, than expressed. However, I was told from an early age that God is the designer of who we are inside and outside.
During my teens, I tried several times to blame God when I feared my peers were leaving me behind with backyard football and youth sports and then with dating and such, but I could soon see the error in my thinking, which was based on fear and not reality. In reality, I was one of the first in my social circle to "date" and eventually I came to understand that I needed to look inside myself for how to use my experiences to be a better person. I came to realize that I too had left lots of classmates behind by simply not including them in my social circle or inviting them to do activities. My teen blame game became a great tool for developing leadership skills, personal strength and maturity.
My parents had plenty of blame and guilt to go around (especially the first year of my life), but luckily I only have the stories of this time. My dad is a vet and questioned chemical exposures in Vietnam. He was in school to be a shop teacher and was determined to find a way to fix me, but by the time I have memories, he had shifted his focus to fixing things in my environment such as my tricycle. My mom took a Tylenol and two Halls cough drops during her pregnancy and was sure these caused it. My mom's guilt was only intensified when even strangers would ask what she took while she was pregnant. Of course, they probably meant illegal drugs, but my conservative Christian mom was sure they were talking about the one Tylenol and 2 cough drops. I laugh about these, but when I was pregnant with my children, I think they relived every possible cause and I didn't dare tell mom that I took more than one Tylenol and even had a cough drop or two.
So...will your child blame you? blame God? Most definitely, yes, BUT it might be for their old sweater, bad acne or plump physique and not their Creator's design. God gives each of us everything we need. My option package just happened to include a lot of brains, a great deal of hope, a strong sense of purpose, the ability to type faster than most 10 fingered models (60 wpm-smile) and GREAT Christian parents. Somehow physical "perfection" seems overrated with an option package like mine.
You give me great hope!
I have read your blogs with great interest and hope you don't ming my chipping in. I can relate to much of what you have both said and it is great to be able to share with people who really know what life is like.
I had a very difficult pregnancy as I was extremely sick for the first 16 weeks. I went to see the doctor and in the end I was given anti-sickness drugs during the 7-8th weeks of pregnacy. I asked a friend who was a doctor and she said not to worry so I took them. In reality they didn't make much difference to the sickness so I decided to stop taking them and carry on eating pringles and flat lemonade, I lived on them for weeks! At our 20wk scan we were told there was a problem with the baby's legs. It was more difficult because they couldn't tell us if anything else was wrong or if it was only her legs that were affected. Jess was born with Bilateral PFFD aitken class D, although PFFD was never mentioned until she was 13months old.
At first I found it very difficult to accept that what had happened to Jess was not my fault, having no confirmed diagnosis made it worse. I had taken the drug, but I was supposed to protect her, all the self blame games you can imagine. However alongside that was a strange sense of God's peace. As a christian i know that God made Jess the way she is for a reason and in her struggles and her successes she will glorify Him. She is-as you quoted "Fearfully and wonderfully made". Sometimes I still wonder 'what if?' but when I do, I remind myself that God made her and He never makes mistakes!!
Jess is now almost 3. She is bright and intelligent and has far too many words in her vocabulary for her own good! She had Symes amputation done in January and is now up and about on her prosthetic legs, coasting furniture and reaching all the things she couldn't before. I am waiting for the day she takes her first steps unaided, i well-up at the very thought that it might happen at all.
I hope that one day our Jess can say the same things about us as you said about your parents, to know that we did some things right and made the best choices we could for her. I have read many things recently by people with disabilities and the hate and anger that is entrenched in some of them frightens me. I don't want Jess to be hateful and angry at the world and anyone who'll listen. I want her to have a positive attitude and a hope like yours. I trust God every day for that. Thanks so much. Jo X
Chipping in Comments Appreciated
I am so happy that you chipped into the blog! It is great to hear that you could relate to my family's experiences.
I found your concerns about people with disabilities who have so much hate and anger interesting. Despite my having no interest in the disability field growing up, I have worked in that field for over a decade. First as a caseworker/advocate and later a non-profit CEO. Please be assured that the hate and anger you see has many sources, but most fall into two main categories.
Unfortunately, the first category is from the disability or more specifically being "stuck" in the grief/loss process. In one terrible situation, I worked with a highly accomplished adult who was angry at the world and so was her mother...she and her mom have been stalled in the same place in the grief process for over 30 years. They each got so used to how it felt that they no longer thought it was unusual to feel so angry. It destroyed each of their marriages and was working on the rest of their lives. I felt so helpless when interacting with them and my positive, purpose-driven life was just like sandpaper to their wounds. Ultimately, “sand-paper” me made the daughter's life miserable enough that she went to counseling and later her mom joined her.
The second category is more difficult to explain, but it is one I struggle with from time to time. This is the anger and hatred that comes from being treated differently and becoming aware of society's injustice and inhumanity. This is the anger that I felt when people (often strangers in the grocery store) expressed concern that I might have a baby with a disability like mine. Or when my husband and I adopted our third child (who is blind and hard of hearing) internationally because my disability made adoption through our state child protective services impossible. The realizations of ignorance and intolerance can spark anger and hatred so easily, but I have learned (mainly through my father's example) to be intolerant of the actions, but sympathetic of the offender who has such a narrow understanding of ability.
My children struggle with this one too. My oldest daughter who is typically so passive, almost knocked down her Brownie leader when the leader told her that she was sorry her mom used a wheelchair and she hoped Brownies gave her a break from all that. Well, my daughter was not sure exactly what the leader meant, but she was mad!
This second anger has a good side as well. This is the anger that often pushes me to prove and improve my abilities. I am sure that in my second toddlerhood (typically called the teen years), this anger caused me to loosen apron strings that my mom was not yet ready to loosen and prepared me for life on my own in college. However, if not used in moderation, it can also create the "supercrip". This is the person with a disability who has to prove their worth through extraordinary, obsessive achievements. This is scary since failure is seen as reducing their value as a person and not as a learning experience.
Don't fear, when and if you see anger and even hatred in your child, but be aware of its source. If you know the source, then you will be ready to guide them through it.
I cant stop crying
I am trying to put myself together to write this to you. Your story is so similar to ours...My baby was born 3 months ago. she is my only. She was born with pffd in both femars and fibular hemimelia in both legs and has 4 toes on each foot. she is the most beautfil thing that i have ever saw in my life. During my pregnancy i was told everything was great until 8 months. i was told she was going to be a dwarf...then she only has a broken left leg.. once she was born they took her right from me and i didnt get to hold her for 3 days since they thought that she may have brittle bone syndrome. it was the most horrible but most wonderfull experience of my husbands and myself's life. After her 9 day stay in ICU she has had several dr. visits to UC Davis ahd Shriners. They both have been great but nothing anyone tells me can make me feel any better. I dont understand why any child is born with problems. SHe is my angel and I cant do anything to make her better. I blamed myself for so long and even though they tell me that it is a genetic disorder I cant help blame myself. My husband 37 (I am 28) is great but he just tries to not think about it and it is all that I can think about. The bigger that she gets the more I worry about her life. She goes back to Shriners in 09/06 and they will take more X-Rays to see how her hips are.
I was just soo touched my your story. I could not stop crying. Is horrible as this may sound I am so happy to talk to someone who is going through the same thing. Please look at my blog from today and see my little one's pictures. I would love to see a picture of your baby.
Sincerely,
Heather Cords
Crying
You have a beautiful baby! I will scan some photos from my baby book tonight and post them. However, your baby will win the cutest baby contest. If you would like to see more photos just let me know. I was a first child so my parents filled many photo albums! You are also welcome to pictures of my children so I will post a family photo. Two of my children are by birth and I have one by adoption (she is the one with her eyes closed in our family photo--she is blind and hard of hearing). We are currently adopting two more children.
You mentioned in your blog about having more children. My parents did not and adopted my brother. I obviously did have children. I would strongly recommend waiting a year or two before making a decision. My parents (especially my mom) had such a rough first year.
As an adult, I find it hard to believe that I was anything other than a typical child with very ordinary parents. However, in reality my folks struggled, but they did it with enough dignity and grace to make my husband and I chose to adopt a child with a disability. I strongly believe that a child with a disability strengthens a family and builds character in siblings and classmates. My children have an extraordinarily broad view of ability that makes me very proud!
Feel free to ask me specific questions or just write me when things seem overwhelming.
Hi Heather! I just finished
Hi Heather!
I just finished responding to your blog, your daughter is beautiful!! I know what you mean about being happy to be able to talk with someone else going through the same thing! Even though I have many supportive friends and family, I feel that sometimes they just won't understand. I saw that you put your email address at the end of your blog. I'm going to email you some pictures of Emma.
Take care and I hope to talk with you soon,
Courtney
another adult with pffd
I find the PFFD info on your blog interesting. When I arrived little was known about Pffd. I did receive medical evaluation from an orthopedic doctor who continued to treat me for 23 years. I decided at an early age to enter the medical field. I had a symes amputation at age 14 after years of discomfort from wearing poorly fitted prosthetic devices. The amputation made my life much much better and pain free. I have always been able to walk about for most all activities. I married, had children and many grandchildren.I was a therapist for 45 years while caring for my family.Now in my seventies, i still walk free of any pain. I have never had a back problem. I donot use any assistive device for walking.
Just want you younger persons with pffd to know that if you continue to be active you may live a very normal and happy life. My pffd would be a class D according to the classification. I also have right arm shortness with malformed fingers but have minimal limitations.
So just view pffd a minor inconvience and go on with life. I feel an amputation changed my life for the better. I have never once regretted opting for the surgery. lmf
Thank you
I do appreciate your comments. My surgeries (22 total) on my left hip and leg have not aged well. Childbirth (one of my children being 9lbs.4oz.) only added to the already stressed metal plates and screw. My last surgeries (from age 16 to 22)were for the purpose of trying to heal/attach where bone had been removed and put back together. It never healed and I have severe osteoarthritis....I am in constant pain that varies from almost unnoticeable (after over a decade) to unbearable. I don't like taking medications so I avoid them until the pain is unbearable. I have not worn a prosthesis since I was 16 and alternate between a manual wheelchair and crutches for mobility. I am completely independent using these methods and actually fall less with the crutches than I did when I wore prosthesis. Plus I am very active!
Recently I learned of a procedure, which can replace most of the femur (my problem is at the top). I just went to the doctor yesterday to start the planning process. (Like most people with PFFD) I have a great stump from the amputation, which has never and probably will never need revision. I don't want to give this up, but the procedure was designed to end at the knee not the ankle and my knee was removed decades ago. Plus I am losing bone density at an alarming rate on that leg despite weight exercise. SO I am reluctantly considering surgery again.
We have three girls (ages 10, 6 and 6) and we are adopting two more (a BOY and a girl) from Haiti. We will travel to get them (ages 4 and 3) in 4 to 6 months and I want them settled before I have this surgery. I never thought I would consider surgery again, but the opportunity to get back in prosthesis is too tempting. I wore one successfully from my amputation at age 7 until I was 16.