The More Thankful

We Are More Thankful Than You Are

I love Uncommon Sense. As far as blogs go I think this one is so beyond valuable for families of children who need assistive devices for communication but also for the way the emotions of being a special needs family are communicated. In addition it’s really just an amazing place to learn about communication and advocating for your child. 

Reading the above post this morning reminded me that I do at times feel I am part of the more thankful. I’ve written as much in this blog.  Plus there was the moment not too long ago when I saw Nicholas walk with his new shoe insert, and heard him say it didn’t hurt!!! Walking pain free is something I am certainly more thankful to witness than most. In fact I’ve seen quite a few first steps with Nicholas and I am certainly grateful for all of them. The most recent though might have been the most powerful yet.

Still I don’t think gratitude has a limited quantity or anything. One person having more does not mean someone else has to have less. Most of us could probably stand too look at our lives from a more thankful perspective. Recently I heard Elizabeth Gilbert talking about gratitude on a podcast called You Made It Weird with Pete Holmes. In it she shared some Richard from Texas wisdom which anyone who read Eat Pray Love will love: “A really lame way to feel gratitude is to compare yourself to other peoples suffering. Its lame but it works”.  It is lame. I’ve always gotten a yucky feeling when I suspect someone feels lucky not to be me. And I know it sounds nutty but I have felt it.

Anyway I have tons of thankful moments with my supposedly “typical” children too, as I know most moms do. I mean I am not just thankful for Nicks variety of first step moments…

A few weeks ago Christopher explained multiplication to me so succinctly it took my breath away. Bess will suddenly blurt out sounds and let me know what letter they go with. Charlotte was quite behind in reading just a few years ago and now is on the opposite end of the spectrum. Nicholas participated in a role playing activity at school in which he had to be the victim of bullying. He did great and really enjoyed doing it, which reminds me that no matter what his leg is up to, he has interests and hobbies that he can participate in. I’ve so often measured how well he is doing by what he could or couldn’t do physically but there is so much more to him than that. So. Much. More. 

For that fact and so much more I am so very thankful.

Did I neglect to mention this will be difficult?

Did I? I must have. It’s a thing I don’t always realize because I am such a cheerleader. I think you all need a cheerleader but I don’t want to be that at the expense of sharing the realities.

This is not the only blog on limb lengthening so there are other places to get realities. When I wrote about limb lengthening while it was happening to Nicholas, I was totally realistic and accurate. The thing is, as time passes memories soften around the edges and sometimes they just soften or leave altogether.

When people ask me questions about Nick’s experience in some specific way I often have to search this blog to find the answer. Sometimes I want to suggest others do that instead of asking me things that are here but that’s me being grumpy, or busy, or both.

Anyway despite the fact that it was all hard, it was all do-able (which I always say). Although I feel like I neglect to add that for Nicholas’s first surgery Steven and I were both home. I did also give birth to Charlotte in the middle of that but we were two stay at home parents. For several other surgeries Steven worked from home. It was all a heck of a lot harder when Steven traveled and I was home with all the kids on my own and when Steven worked a regular job that he had to show up at. His working from home made so many things so much easier.

I must also note that just about everyone else seemed to have hard periods to, for a multitude of reasons. I didn’t think everyone else was having an easy time parenting because they didn’t have a fixator on their kids leg. In fact in some ways I think I had an easier time than some because I had real shit to deal with so I did not need to make up problems or stress the small stuff. That might sound awfully judgmental but I can see it in myself, that when I don’t have big shit happening I can obsess about some seriously little shit.

It’s not easy though. There is nothing really actually easy about leg lengthening. Of course I have been quoted as saying “It’s the easy part” but that is in comparison to joint reconstruction.

Lengthening still seems like a miraculous sort of thing to me. Cut a bone, separate it a little each day and it fills in. Super ankle feels less miraculous. Maybe because Nick’s foot has not been an easy fix. Maybe because it is still causing him pain. Nick’s knee is causing him pain too, again. He couldn’t get through more than a 1/2 hour of swimming on Monday night because of it. Swimming was the thing he could do without pain and this knee pain has been reoccurring for a while.

This stuff is difficult. I might have neglected to remind you but I have also neglected to remind me. I feel a little pissed off at times when it’s hard for Nick and I can’t fix it or I don’t want the fix that Dr. Standard can fix it with… surgery. It’s just the mood I am in but I have faith that time will pass, problems will be solved and the memories will soften until I forget and have to come here to remember.

Our Best Days

Nicholas did not trick or treat last night. Nicholas did not dress up. But Nicholas did walk our dog and that made me pretty happy. I was happy that he could. Walking sans crutches is still feeling fabulous and looking fabulous (to me, Nick is having some leg pain which we assume is from not bearing weight for about 5 weeks).

Trick or treating was rough last year. He was waiting for a new shoe insert and brace (I think that was why he was in pain). Fall seems to be a rough season for his foot (which some theories are brewing on for another post). This year he just didn’t want to. At first I was upset and tried hard to encourage him but then I quit because I realized he really just didn’t want to do it.

Holidays I also realized can be little pressure cookers of stress! We want them to fun and fabulous. How many trick or treating Halloween’s are there in ones life time? Oh the pressure!!!!

This morning I realized, while reading a post on the fibular hemimelia support group that the holidays are not my favorite days. Sometimes I feel like they should be but if I am being honest, they really are not. Another mom was writing about her son having a hard time and not being able to trick or treat. I knew that feeling. I knew the emotions she was having so well and commented:

Nicks had some rough trick or treating years. He didn’t do it this year. He just refused but he’s 12. I could over analyze and wonder if his rough Halloweens have made him less into it but I think he just doesn’t care about it that much. I feel like holidays are a little like summer where I try hard at times to have as much fun as everyone else and make the most of it but my favorite days and our best days as a family are not the holidays anyway! All the pressure for it to be great and memorable isn’t really conductive to joy. For me…

I continued a bit more but I don’t want to share personal information about someone else and their child here. I hoped what I wrote helped this mother see that she is not alone. That these feelings are normal and that our kids really don’t seem to focus on the hard times. Nick does not talk about his hard time trick or treating last year or any other year.

To be honest I was kind of grouchy yesterday. I think I was upset about Nick not wanting to trick or treat, maybe it’s the bittersweet nature of him growing up. I also felt pressure to make it fun, be happy, it’s a holiday… etc. Well then the dog didn’t want to wear her costume, I didn’t know where the kids trick or treat bags were, getting everyone dressed stressed me, we were running late, Steven was not with us, Bess fell within the first 5 minutes…. I could go on. I wish I could stop this kind of spiral when it’s happening but I just smiled and wished I was off somewhere drinking a glass of wine!

A few hugs from neighbors and seeing friends out and about helped but I just prefer regular days. Holiday’s stress me. It’s fine and I don’t think it’s a unique thing to feel this way. Acceptance usually brings some easing of the stress so maybe next year will be better for me. It’s interesting to me though that I can be grouchy and grateful at the same time. I am so grateful for kind neighbors and my children’s happiness.

It was a beautiful night regardless of whether it was the best for not.

Retreat to the Easy Ship!

Earlier this month I was fortunate enough to attend the Being Bold Women and Power Retreat at the Omega Institute in Rhinebeck NY. It was AMAZING. Truly. I feel like a changed person. I have a renewed interest in leadership and a curious peace within myself regarding my path. I was fortunate enough to receive a full scholarship!!! I would count this as one of the greatest blessings of my life. The women I met seemed to be just the people I needed. There were so many messages and moments that touched me. It felt like magic. 

Before the retreat I didn’t want to spend a lot of time researching and analyzing. I knew Elizabeth Gilbert and Elizabeth Lesser would be there but that was it… That was enough. Still I knew the rest would be amazing as well.

And they were! I would love to write a little about each one and I will, at some point, but since this is No Fibula No Problem I must share regarding the speaker that was born with Fibular Hemimelia. Did your jaw drop? Are you as shocked as I was? Bonnie St. John was born with fh, had her leg amputated at age 5, and became an olympic skier. She is a remarkable woman. I wonder how much having been born with fibular hemimelia drives that. She never even said the words fibular hemimelia but when she showed a photo I knew. 

Bonnie talked about needing a new etiquette to talk about differences and she is so right. Bonnie was talking about all kinds of differences and in particular race. She talked about being color-mindful instead of trying to be colorblind, which really does not work. I tried this out and had an amazing experience which I really want to share in another post. Regarding limb differences, so often in our support group we talk about wishing people would just ask questions rather than stare at our kids! I can’t speak for everyone but I know a lot of moms have felt this. Although those who ask questions don’t always do so in a kind or respectful way. I believe it’s possible to ask in a way that is not hurtful. If people could bring curiosity to those moments, instead of judgment, on both sides of the conversation it would be a game changer. 

It would be a life changer.

Which reminds me of something Elizabeth Gilbert said, that the creative life is living from a place of curiosity instead of fear. 

Which reminds me that I really need to do that right now. 

Nicholas was having knee pain, which is somewhat better, but he’s now having foot pain. It’s the bottom of his foot and not his ankle. It’s the part of his foot that hits the ground really. His foot has a rocker bottom. It’s just so unique and the thing is, there is not a surgical fix. The last time this happened Dr. Standard called it a “flare up”. I am hoping that is all it is, and it will stop. I want Nick to be able to walk pain free. He’s in school with crutches today because using the air cast (boot) he has used in the past makes his knee hurt. 

When he is in pain my mind tends to go straight to fear! I hit the fear bullseye like an expert marksman. What if it the pain does not end? What if his foot really isn’t going to work for him? What will happen as he grows if his foot can’t handle his daily life now? He’s not even terribly active right now!!!! 

Fear spiral. What if’s. It’s all bad news. It’s hard. Part of me wants whatever will make this easier for Nick. Make it better. Moms make it better. Help him. Keep him home. Push him. All these thoughts going round.

Can you feel the fear spiral?

Approaching this from a curious perspective means observing, questioning, but not judging and spiraling.  

Maybe Nick’s insert needs to be replaced? 

Maybe I should bring him to Baltimore to get x-rays and not think beyond that?

Maybe I don’t have to jump to the worst case scenario? 

Maybe I can have faith that things have always worked out in the past and will continue to do so? I can be curious about how exactly that will happen, being fearful about it surely does not serve me or Nicholas.

I try to remember that the easy ship sailed 12 years ago and we were not on it. Fibular hemimelia was never going to be easy.

Maybe the easy ship is an illusion anyway? Is parenting ever easy? No. I don’t really think it is, but I admit to occasionally judging other parents who act like it’s so flipping hard meanwhile they have never had to worry about whether or not their child will walk pain free again… fear spiral includes a judgement spiral at the moment…. it’s just a moment. I know there are a multitude of fears involved in parenting, for more reasons than I can imagine, and some far more serious than fibular hemimelia.

I know we all want to retreat to the easy ship sometimes. 

I want to retreat back to my retreat at Omega. Instead I will review my notebook filled with notes. I will forgive myself for the fear and the judgement. Judging my fear is particularly perplexing and fruitless but forgiving it… 

Maybe I don’t have to go on a retreat to access the magic. Maybe I just did. 

Yesterday, Today, Tomorrow

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Yesterday we participated in Carerra Por El FH for the third time. It was created by an inspiring fibular hemimelia mom I have come to know and love. She and I both appreciate the fact that we would not know each other if we had not had children born with fibular hemimelia. It’s impossible for me to imagine any other life or any other child.

Speaking of that child, Nicholas is twelve years old today. He is an amazing young man. He has always been amazing. I believe he is still who he was the moment I met him, simply a beautiful soul.

I believe the same of all of my children. Motherhood has been the greatest blessing of my life. Some days can be monotonous. Days can run into one another, sometimes they are long and slow and sometimes they are full and fly. There is always someone who needs something.

I was reminded this week though of what a privilege it is to have been there for my kids, in countless ways, over countless days. Some mothers don’t get to have the everydayness of motherhood. Some mothers suffer the absence of their children in a way that my heart can hardly fathom. I attended an amazing event on Friday, the TEDX Wilmington Salon on Second Chances. Each and every talk given had a profound impact on me and made me think about the impact I can make in this world, the impact I have made, and what my second act might really look like. What a gift to even get to ponder such things!

As far as motherhood, my current and always and forever act goes, I sometimes wonder if I am doing enough or being enough, when life is pulling me in all kinds of directions. Especially now as I work to get my MSW and shift energy into dreams that do not include my children, at least at first glance.

This quote by Cheryl Strayed was shared by Elizabeth Gilbert on Facebook this week and I just love it and really needed it at the moment I saw it:

I fully believe that one of the greatest gifts I’ve given my children is the example of a mother who pursues her passions like a motherf***er.

Gilbert and Strayed are both authors that I have found exceptionally inspiring! This quote helped me to feel good about the time and commitment I am giving to what I know will be my life’s work. Motherhood has been my life for twelve years. I wouldn’t change that for anything but I am so glad there are other mothers out there who serve as examples form me of being a mother, (because I do feel it is a matter of being), and working in the world out side the of our homes and families figuratively and literally.

I am so grateful for yesterday, today and tomorrow. All the moments that make up my motherhood journey, all the moments yet to come, and all that is the boy who made me a mom.

If only I had…

This has been a busy week. It started on a rough note because Nicholas had an ear infection. This has been a totally new experience for him and the pain was beyond any leg pain he experienced during this 4th lengthening process.

Before the ear pain even started he had been having leg pain. Pain enough that he put himself back on crutches full time. When I wrote to the RIAO they said going back to crutches and easing back into activity made sense but Sunday the pain really seemed to be getting worse. My plan was to call Monday morning and get Nick seen as soon as possible. I was panicking a little.

Sunday night in the wee hours was when Nicks ear pain was at it’s worst. Monday morning all I could think of was getting him to the doctor for that. His leg was largely ignored till much later the day when I finally reached out to the RIAO.

The reply was that Nick should come in on Thursday. Although Dr. Standard didn’t think his rod would fail he needed to check Nicholas out to figure out what was causing the pain. At this point I was really upset with myself for not calling earlier. For not remembering first thing. For letting the ear infection, a pretty common thing overshadow his leg, which felt like a big deal at the time.

“If only I had called earlier”…

In truth things worked out exactly as they needed to. Why was I so inclined to blame myself? Like I have control of everything in the entire universe! Monday would have been a terrible day to go to the RIAO. Dr. Standard saw 38 patients! Being in the mix of that would have been rough! We would have been there ALL DAY. Mostly we don’t mind being there actually, but still an all day visit, which I likely would have had to bring Christopher and Bess to would have be hard. Nick’s ear still hurt, we were tired from a long day traveling the day before.

Thursday turned out to be the perfect day to see Dr. Standard. It was super quiet at the RIAO. We waited some but it didn’t feel like much time at all. Nicholas and I were both feeling pretty relaxed. Marilyn came and chatted for a while. And as I wrote in my previous post we got to meet Liam and his family!

Obviously Thursday was the day we needed to be there! Everything was fine with Nicks leg. Trying to rush in Monday wouldn’t have changed anything and I knew Thursday that no matter what happened we had the silver lining of visiting with friends to look forward to. I certainly wouldn’t trade meeting Bonnie for a Monday visit!!!

Now the “if only” I have in my mind is “if only I had stopped to breath and relax” (which I eventually did). As moms I think it’s common for us to assume we are in control, everything is our fault, it’s all on us! It’s not and it’s not healthy to think that way. From the little things to the big things so little is actually in our control. Sometimes I try too hard to control what I think I can because I know there is so much I really can’t control but really… really… this is not helping me at all. It seems confusing even typing it.

A few things popped up this week to remind me that when it comes to parenting connection is the thing. I don’t need to get it all right. I will never be the perfect parent but I don’t need to make everything my fault in my mind either, which really is a way of making it all about me isn’t it? I just need to focus on staying connected to my kids. I can best do that by being present in the moment with them. There is nothing more important than that.

Ease

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So it seems Nick needs to ease back into full activity. He’s had some pain since beginning to fully weight bear. I checked in with Allison and this is normal. Knowing that Allison said it’s ok seems to have put Nick’s mind at ease. He remembers the third lengthening’s drama and worried about his bone collapsing. Even though that lengthening ended traumatically with him breaking his arm and his leg crashing too it was still super successful. Dr. Standard was abel to save his 6cm and make his leg even straighter than it had been.

In addition to finding out that Nicholas could bear weight on Monday, we also found out that he needs another 8 plate, this one in his femur. We are hoping it can wait till the PRECICE rod comes out but it might need to be sooner. His leg just wants to kick out to the side… again and again and again. If it has to be it’s own surgery so be it.

Above you can see Nicholas’s amazing new bone! He needs to focus on hip strengthening exercises pt wise and Dr. Standard also prescribed gait training so I think we need to have a session at the RIAO so Steven can learn what to do or go back to formal therapy close to home. Nick did well at duPont previously. We will work it out.

Of course I am resisting stressing this leg pain myself although I can’t help but feel like I wont be fully at ease till he is walking pain free. I have to knock that thought out. This is a process and I have to let it be what it is. A friend shared the wonderful quote below yesterday and I am trying to let there be room for whatever feelings are present. To acknowledge them and not try to knock the out, but also not stress them. That’s a process too! I also shared this in the support group and it resonated with others as well. Thanks Scott!

“We think that the point is to pass the test or overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy. (10)”
― Pema Chödrön, When Things Fall Apart: Heartfelt Advice for Hard Times