“Mom I planned to do active things today.”

“Mom I planned to do active things today.” This is what Nick said to me when I suggested he try improv at our local summer program. He has been loving the outdoor games that he avoided for YEARS. He’s doing whatever he wants now. I still hope he tried improve but damn I am pleased that he gets to CHOOSE!!!!!

I got to see him running yesterday on the 4th of July as our community prepared for our annual Games on the Green. At the start of the games a torch is lit and carried around the village green. Nick ran with the crew and really made my heart so happy and many others as well.

So that’s the Nick update. The ExoSym is still simply amazing.

Nick is doing an awesome job living his life and being Nick.

And I remain beyond grateful.

Check out Beth’s Blog for more info on the ExoSym and the experience! 

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.