Born Special

A blogger with Fibular Hemimelia!

Art by Lydia

Hi. I am Lydia Schroeder. I am twelve years old And I have a twin sister named Eliza and two older brothers. (both in their twenties.) When I was born, I had a lot of problems with my left leg. I had a missing fibula, only four toes, missing knee ligaments, ankle problems, leg length discrepancies, and a very slowly growing leg. My sister, Eliza, doesn’t have my leg problems. This is my story.

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Still

Even kick ass moms struggle. Seriously. I worried my last post might have made folks think that I am not loosing my mind some of the time.

Nick said he had foot pain the other day and my heart sank. I mean it was a moment of despair until he added that is was his left foot! His left foot!!! HA! That food practically means nothing to me. ; ) Still for a moment I freaked.

Chris has been having some emotional ups and downs and every time I think I have a handle on it he proves me wrong. That boy keeps me on my toes. I am still not doing all the therapy things with him that I am supposed to be. Still I am trying.

Charlotte is doing so well in middle school and involved in so many things. I am really conscious of needing to connect with her as the teens approach. Still she needs time to process whats happening in her world and sometimes I don’t recognize that. She’s not the squeaky wheel but she shouldn’t have to be.

Bess, ah Bess. Poor thing just wants me to lay in her bed till she falls asleep. Somedays I can’t believe we are still doing this. I have so much to do at night. I am trying to compromise with her but she’s really very strong willed. I know it’s a wonderful thing but I still can’t help but want my nights back.

And I am still writing, even though there is not much to say about fibular hemimelia. I am STILL grateful for that and for the record I do actually care about Nick’s left foot.

 

What I used to know

I used to know Nicholas by his foot fall. The sound of his step was so distinctive. I could be downstairs and know for certain he was on the move above me. Truthfully with his shoes off I still do, but when they are on I can not tell the difference between him and Steven. It is so strange to me. I think he’s really hitting his stride with his ExoSym.

In another realm I used to know that Nicholas was my “special needs” kid or rather he was who made me a special needs mom, because I did not always feel comfortable characterizing him that way. Now that title belongs to Christopher. He’s got a few things going on or maybe one thing… joint laxity, low tone, some sensory issues etc. Etc. meaning other things mostly related to these things.

Chris is currently doing occupational therapy and speech therapy, he needs to start physical therapy again asap. He does speech in school but might need to do that outside school and does OT outside of school but will hopefully start that soon inside of school. He has a dermatology appointment this week for a bump on his foot that I can’t identify google doctoring. He has an eye appointment this week. He had a wonderful chiropractor visit a few weeks ago which left him feeling really, really good. Our chiropractor is also a doctor of functional medicine and amazing person. She suggested a diagnoses that might bring Christopher’s stuff together. I know the “why” is not what matters but the why can very much inform how we move forward! I have tired to just be the mom that goes to the appointments but I can’t. I am a researcher. I need all the information. I need to know, in as detailed a way as possible, how to help my son.

I have always known that Christopher is marvelous. He is beautiful and smart and sweet and funny, and for the most part has been able to do everything he wants to do, as he wants to do it. I know that is what matters. Since August though I began learning that I don’t know everything I need to about him.

Some of the things I used to know as his quirks have a biological basis and are impacting his learning and body. Maybe they will still end up being quirks and just how he is who he is, but there are things we can do to make some things that challenge him easier. OT, PT, more speech maybe…. so I will make sure he gets what he needs and we do what we can.

I used to know I was the mom of one special needs kid or more recently two. Now I kinda think I am the mom of four, in a way. Each of my children has needs. Each child has challenges I need to focus on in different ways at different times. My number one task is to love them and enjoy them and then to work, fight, research, and do everything I can to make sure they have what they need.

I used to know I was a kick ass fibular hemimelia mom, however I have realized that I am a kick ass mom period.

This does not mean I think I am a perfect mom or that I get everything right. I do not. There is no such thing as the perfect mom. No one gets it right all the time. I give my kids much more in being me and being human and humble.

Thoughts on special needs motherhood inspired by this link. 

 

Commencement

com·mence·ment
kəˈmensmənt
noun
a beginning or start.
“at the commencement of training”
synonyms: beginning, start, opening, outset, onset, launch, initiation, inception, origin;

informalkickoff
“the commencement of the festivities”

Yesterday was an end and a beginning and I suppose all are both in some sense. Nick graduated out of formal PT. He’ll be working out at the Y. He knows what he needs to do. He understands why he needs to do it.

I do think he was a bit sad to be finished. Sad not to see his therapist every week anymore. She really is a remarkable person and such a wonderful support for Nick to have Pre and Post ExoSym. He only started seeing her in September or so but I think she has had a remarkable impact on him and me. I think I have a better understanding of Nick’s leg and body than I have ever had. She also listened to all my Christopher talk and questions when I think many people would have shut me down. She Reeneeified Nick’s last brace to make him more comfortable. She massaged his scars. She made great use of her time with him even when there wasn’t much he could do. Maybe most touching for me is the joy I saw in her eyes when he came back with his ExoSym and got stronger and stronger each week.

 

Reenee and Dr. Nichols are a formidable team. Two kind and brilliant kick ass women, experts at what they do, thinking outside the box and doing whatever it takes for the kids they see. Whether whatever it takes is rubbing scar tissue or filling out papers and BELIEVING or talking down a scared and stressed mom. That last bit is vital IMO.

Nick saw Dr. Nichols last Friday and he has NO SURGERY ON THE HORIZON. I thought he’d need plates out but he does not. She prescribed being a kid. Not surgery kid. Not FH kid. Just a kid.

So it’s a commencement. A new beginning. No, it’s not surgery never again, but it’s possible (and I am trying so hard not to believe in jinxing right now) that surgery in childhood is over for Nick. He’s graduated from the school of FH. 15 amazing surgeries and so much hard work with Dr. Standard and his team in Baltimore. The most amazing brace thanks to Ryan and his team at Hanger, and so much love and support from so many.

Nick and I may start sharing in a new format in the new year but I will update here and let you know where on the web to find us. He has some ideas and I am happy to let him take the lead. He’s a natural leader. He’s so many things that I have probably not even ever written here. I love him so much and I am so proud and so grateful that he can move through life without pain. It’s what I wanted most for him 13 years ago and I am so glad that is where he is beginning today.

New Leg Same Life

I have not had much to write about since returning from Washington with Nick and his Exo Sym. I don’t think either one of us is used to his leg not limiting him just yet. He has had a couple instances where his knee has hyper extended but Ryan says he needs to develop the muscles in his leg in order to control that because controlling it via the brace will interfere with every day activity. Nick and Chris will both be seeing Dr. Nichols in a few weeks so we will discuss it further with her then.

Other than the knee pain he’s had some soreness in his right thigh but I am pretty sure that’s the good kind… like his leg saying “hey you are using me so effectively that I am sore”.

This week we attended a meeting of the Scholars Gild which is part of the Arden Club. Here is what is was about:

“Everyday life activities with a physical disability can be difficult. The November Scholars Gild discussion will be lead by Dr. Michele Lobo, assistant professor in the Department of Physical Therapy at the University of Delaware. Dr. Lobo will discuss how advances in fashion/apparel studies, engineering, and rehabilitation can be used to design clothing that improves independence, function, and quality of life for people with disabilities, particularly for those with physical disabilities. She will highlight innovations from her Super Suits FUNctional Fashion and Wearable Technology Program at the University of Delaware. Those innovations range from lower-tech adaptive clothing designs through exoskeletal garments and smart garments that allow users to control gadgets in their environment.
Bio
Dr. Michele Lobo received her Masters in Physical Therapy from Hahnemann University and her Movement Science PhD from the University of Delaware. She has been a visiting researcher at The Free University, Amsterdam, and the University of California, Berkeley. Her research focuses on developing and testing early interventions and devices to maximize participation, play, and learning. Her NIH- and DOE-funded group has members from rehabilitation, developmental psychology, engineering, and fashion and recently developed the first exoskeletal garment for rehabilitation.  Her current work includes a multi-site early intervention study and developing and testing a range of low- to high-tech clothing aimed at increasing independence and function.”

Interestingly Nick’s physical therapist Reenee was listed as a contributor. It is fun when worlds connect. What was also fun was Nick’s willingness to talk to the group about his Exo Sym and his experience. He never stops impressing me!

What also struck me about this talk was how awesome it is that there are people in the world so devoted to helping others achieve and get what they need. Dr. Lobo was quite impressive but her caring is what really touched me. We have encountered many people like this on Nick’s Fibular Hemimelia Journey and for that I am so grateful!

Maybe I will try to write about them now that there is much less to say about Nicholas. His leg works. He’s still Nick but Nick without limits. Once he absorbs this I might have some sort of activity post to share but truth be told I will be perfectly happy if he never does anything new with his leg other than live his life and walk though his days without pain. He’s more than his old leg or new leg or any leg or any part of him. We all are.

*** Special thanks to Steven Threefoot for letting me know about the Scholars Gild event! We live in a remarkable community and Steven represents the best of it for sure.