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.

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.

Swimmers Legs

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I don’t think swimmers legs are a thing. It’s just all I could think when I saw this photo. Maybe because he had swimmers ear and that’s been on my mind. When I took this photo Nicholas was diving in and I thought I captured the moment better than this, but then I thought this photo is actually pretty fun.

Tonight was the last home swim meet of the season. Nick swam several events and did it all pain free (to my knowledge). He’s been pain free almost all the time. He’s been doing a wonderful job swimming. He’s been hanging out with friends. He’s been free!

A free summer is what he wanted and I think he is there now. I almost cried watching him swim tonight. I don’t know why it comes over me sometimes and others I don’t think much of it but tonight…

Nicholas has worked hard to have two long legs. Watching him dive and swim really shows off just how long they are.

Overall I love that Nicholas gets to have this amazing team experience. Fibular hemimelia can’t stop a swimmer! The Arden Swim Team is made up of great kids, amazing coaches and dedicated parent volunteers. I don’t understand much about swimming but that doesn’t matter. The kids learn just fine without me being involved in the technical stuff. Though I do try to repeat what I hear the coaches say ….”Chin up! Big arms!”.

So summer is literally moving along swimmingly! My only complaint (and it’s a big one) is that I miss Charlotte terribly! She has been gone for over week already. I am sad she is missing almost all of the swim season. She is also missed by friends which is always sweet to hear, and as sad as I am, I am happy for her to be having her own summer fun with her cousins in PA.

Update:

Here are two cool shots of Nick from yesterday! It looks like the one and only Joe del Tufo captured the moment I tried to. That’s his camera in the corner of my shot! Check out Joe’s gorgeous photography here , we have two of his photographs in our home and I love them! Well two not counting other swim team photos! We are so fortunate to have talented folks in our community willing to share their gifts.

And there’s my boy looking like he’s taking off! I love it and him!!

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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.

Still Fearing the Jinx

Yep, thats me, still fearing the jinx. Things are so uneventful leg lengthening wise, except that the leg is lengthening, which is awesome of course. I will take Nicholas to Baltimore on Monday for his check up. He’s lengthening 4x per day and spasm free for now. At home instruction is happening. Steven was away this week but I didn’t feel trapped. We were in and out and about.

Nick did have a fever on and off this week but a virus has been going around in our house so I am assuming that’s the explanation. Luckily he did not get the gastrointestinal symptoms his brother had! He may really have the stomach of steel he purports to have.

As for me it’s really just been a hard couple months and Monday night I felt myself coming out of it more and more. Ironically it is because I realized that it’s not going to get better. Having stuff to deal with never ends. There will always be something. If I can’t feel ok in the midst of it, than I will be sad and stressed forever.

Part of this little repeat epiphany (because really, I have had this thought before) was a conversation with a friend and the arrival of a journal I ordered from England. It’s amazing. Just the thing I needed to inspire reflection, peace, gratitude and more. If you journal or even if you never have before it’s worth checking out. S. C. Lourie is the artist, poet, author and creator of Butterflies and Pebbles. Her messages just speak to me. Check it out. Maybe they will speak to you too.

Ah well… even writing that I am feeling better feels like a potential jinx but I don’t care. Gotta be real. It’s almost mothers day. Sadly this year we will not be heading to Hackerman Patz House like the previous two years. I guess I just feel like I want to make this mothers day about me and my kids. Loving them is the truest, most real thing in my heart and I want to honor that. No jinx worries there.

Surgery Perspective

I accidentally out-ed myself as Santa. Nick needs a new charger for his computer that “Santa” brought for him and I said I would order it. He offered to bring me the computer so I could order the right one and I said no that I could just check the order. His “gotcha” expression said it all. I could not even speak. I was shocked at myself. When I could speak I said “Did I just do what I think I did?” Nicholas said no, and that he had been questioning for a long time. Something about this still felt so sad to me. I didn’t necessarily think he believed but we all behaved as if he did. Something about keeping up the farce kept it “real”.

Nicholas is growing up. Literally up, up, up but he is also changing in ways I can’t see but I can certainly feel. It is already an emotional week with surgery coming up on the 24th. This Santa business just put me over the emotional edge! I just need a good cry so badly! Nick is also visiting middle school on Wednesday. He has to do an interview for a specific program, which he is really hoping to get into it. It is interesting to have him want something and for me to really not be able to make it happen. Ahh… parenting! Nick, like my other three children, is a joy to parent but parenting comes with such a broad range of experiences and emotions. Minute to minute they change. This is life. I get it. Surgery is the kind of thing that puts it further into perspective. That is a kind of gift in and of itself.

Last night Nicholas also came to me to talk about surgery fears. He knows it is expected to have fears. We talked about the usual discomforts and things that are out of our control. He was happy to learn that he can weight bear some right away. He was worried about getting around within our house.

Nicholas has an amazing perspective for an eleven year old. He decided on the timing of this surgery and I am realizing more and more that he is a part of the team in a new way now. We have to included him in all decisions regarding his care. Being part of the Ethics Committee at our local children’s hospital reminded me of this recently. It’s really easy to think that because he is not eighteen he is not the decision maker but that is just not true and most certainly not ethical.

So Nick is expressing his surgery worries. I have shared some of mine. The rest of the household seems be a little on edge as well. Nick’s siblings worry about him. Their lives are impacted too. Meeting everyone’s needs through it all really has the potential to stress me but I am focusing on one day at a time. Today I had an 8am meeting and later I have a doctor’s appointment but I have dinner in the crock-pot already (Corned Beef…Happy Saint Patrick’s Day!!). If I had more time on my hands I would prep crock-pot meals and freeze for post surgery but I have schoolwork to keep me busy this week. Graduate school and surgery are not the easiest mix but I am taking that one-day at a time too. This weekend I plan to do as much of next weeks work as I possibly can!

I have also accepted the fact that this is simply not going to be an easy season. Limb lengthening is a huge deal. It just is. Even with everything going well it will take over our lives. We will find a new normal for a while. This is ok. We are so lucky that Nicholas has an amazing team at Sinai to care for him; we are lucky that Grandma and Grandpa can come and care for the crew at home, we are also lucky to be so close to Sinai so Steven can go back and forth some.

We are lucky. Surgery has helped me see that. It is a perspective I mostly wouldn’t trade that for anything but of course there are times when I wish Nick didn’t have to go through any of it. No matter how beautifully he does. No matter how freaking awesome he truly is through it all. There is a part of me that just wants to protect him from everything. I think thats just part of being a mom.