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.

In Each Other’s Eyes

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Found this little gem on Facebook this morning. It made me smile. People have asked me why I do what I do and this is a big part of it. Trying to translate that feeling into a career seemed natural to me and maybe it is. I am in a Master of Social Work program. I thought I could be a hospital social worker. Maybe I will, who knows. Since starting school I have opened myself up to all possibilities, deciding to go where the work leads and see what happens.

Still I feel a pull toward families, and parents of children with differences in particular. I will never stop supporting fibular hemimelia families but I will have less time to do so when I am employed full time. Even now being in school has changed my availability. I am beginning to feel like I am into too many things. Focusing on Nick’s fibular hemimelia journey is always the priority and right now leg lengthening is the frame work my day is built around. That and meals. Dear god my kids are always hungry.

Monday I start my third class. My second class was really a challenge. Not so much because of the content (although the quantity of content was overwhelming at times) but because of the focus I lacked. With Nick having surgery and me having my small surgery and Monk dying, I could not focus which makes me a little anxious about starting my next course. End of school year is so busy. Nick is in the thick of this lengthening. Life feels like it’s pulling me in 10 different directions at one time.

And still I want to do all of the things I do. I wonder how I will manage. The whole point of this school thing is to actually be employed someday and I wonder how other moms do it. I know in some ways it has been a luxury to have been able to be a stay at home parent for so long (though it certainly does not feel luxurious, nor does it generally afford one actual luxury items). I know it’s a luxury to be able to go to graduate school and choose a path for myself. I also know the only way I will be able to do it, is to stay in the moment and connect regularly to why I am doing it.

Someday I will sit across from a client or in a group and see my reason reflected back at me and thats all the reason I need. That and being able to afford a cleaning person, which is an actual luxury I have always had my eyes on for whatever reason.

TBH

TBH… to be honest. I am usually quite easily honest so I do not use this acronym much. But today I need to.

TBH Nick is feeling down today. I know it will pass. I reminded him of this and of how “normal” it is to feel this way but in the moment it does not make it easier for him necessarily.

Sometimes things are hard for me too. I posted on my personal Facebook page yesterday that things are hard because they are, but that we are not letting it get us down, which we generally are not.

But it is hard. Nick had a big surgery. He has a rod in his leg and we will use a magnet to lengthen it 3x per day for the next 60 something days! That’s kinda crazy. He will not be full weight bearing till maybe August. Maybe. Thats a big deal. He is still on round the clock pain meds. Thankfully at a lower dose but that means more frequent doses so we are waking up at night more. I’ve also added doing laps around the house to his home physical therapy because his leg is really weak. This is normal (I got to ask Dr. Herzenberg about that on the web chat last night. He’s not Nick’s doc but he is brilliant, kind, pretty funny and a fibular hemimeila expert like Dr. Standard). I want to be doing everything we can to help Nicholas gain strength. He is feeling bored and frustrated today at not being able to move his leg. He’s not in the mood to talk about it. He feels like doing whatever it is he can’t do. His emotional health through all this requires attention too and sometimes he just needs space. I get that.

TBH this lengthening will be harder than the others in an important way. Yes it is not an external fixator and yes we are so flipping grateful for that but seriously. Seriously, that does not mean this will be easy. Easier in some ways, yes, but not all ways. This is a femur lengthening which Nick has never done before. Nick’s hip and knee will not like this lengthening. They will want to contract and he will have to work so hard to keep them from doing that. There will be pain. Growing two inches or so in 67 days will do that. We will do everything we can to manage it but that does not mean this is easy.

We are positive people. We are super grateful not to have pin sites. We are super grateful that everything has gone as well as it has. However we still need to be able to say this is hard. I need to be able to say it. Hard does not mean something is wrong. Hard does not even mean bad.

TBH I think we rock the hard times like it’s nobody’s business. I will never forget that. Nicholas has come so far. This journey has strengthened us all. We know how precious every day existence doing what you want is. Every day existence is precious in and of itself of course!!!

There are a multitude of reasons why some people can not live each day doing what they want. Many are far harder seeming than fibular hemimelia. Some things can be overcome and some cannot. Some people keep going even without a light at the end of the tunnel or without the light at the end that they might have originally hoped for. They can become the light.

If fibular hemiemila is the hardest thing Nicholas ever has to go through I would still count him a very fortunate person! I know I am a amazingly fortunate mom. Part of me will always want to make things easier for him but you can’t take away the hard stuff without taking away the light too. TBH I would never want to do that.

PRECICE Preparations

Today Nick had his pre op visit at The Rubin Institute for Advanced Orthopedics (RIAO to the regular readers). Nick had X-rays and photos taken of his leg. We signed consents and answered questions so he could be included in a study on the PRECICE (All caps is the companies thing not mine). We had the chance to connect with all the usual suspects and people we adore such as Ann, Marilyn & Lee. Of course we met with Dr. Standard and Chris his Physician Assistant, and then some Fibular Hemimelia families. In particular we met a family from Ohio who stopped us in the hall to say this blog was the reason they were there! It is WONDERFUL to see the is blog serving it’s first purpose, which is to provide hope for families.

Some Surgery Updates: Nick’s current discrepancy is 5.8cm. We will be aiming for 5cm of length, which will take an estimated 67 days (lengthening 1/4 mm, three times per day). This is more than we thought. I had a feeling things would change as Nick has been growing so much! His predicted femoral difference is 3.6 cm but it’s ok to over-lengthen the right femur. Then Nick will need to do an internal tibia lengthening at age 15-16 of 5.5cm. That means he has 10.5cm left to go as of today. He has lengthened 17cm through his previous surgeries, therefor Nick would have had a discrepancy of 27.5cm at maturity if we had done nothing. That is almost 12 inches.

And knock knee is back. So Nick will get an eight plate or peanut plate in his knee. This is his third one. Talk about ‘chasing the valgus’! That was a surprise too!

Pain management might be treated a little different this time but I will post about that tomorrow and about Nick needing to get an IV before he is under anesthesia. Long story but it sounds like it is for the best.

Next stop Pre-Op Education with Nurse Lee. We received our Teal Book (we have three Purple Book’s from Nick’s external fixator days) and we got to check out this:

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That is the magnet we will use to lengthen Nicks’ leg. Also known as the ERC 2P (according to the manual.  It is the newest version. There are only three in the United States and we will get one. Nick enjoys feeling like guinea pig although I don’t see him as a guinea pig at this point. Just the fact that there are only three of these is neat and there are some differences between this version and the last. This one has a camera in it so we can see that we are positioning it correctly on Nick’s leg. He will have a mark on his leg that we will put the magnet over. The magnet is surprisingly heavy. I am hoping to have Nick do a video about it. I really don’t feel capable of explaining right now. I am still absorbing the details.

Then we got to meet a gal who has the PRECICE in right now and her mom. I have messaged with her mom over the last few weeks and that has been so helpful to me. Connecting with someone who is in the thick of it is huge!

Our next top was lunch and the grocery store to pick up some snacks to share. Then off to Hackerman Patz House where we got to meet Noah and and his dad (from the Fibular Hemimelia and Limb Lengthening Awareness group). Noah is having surgery this week too. This was pretty prefect. The boys played ping pong and video games and the grown ups chatted.

Then we got to meet Kinsey and her family! What a day!!! Connecting and chatting was great. It always is.

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Nick is wearing shorts on his head.

Below is Nicholas talking to his siblings on the phone. Saying goodbye to the kids was so hard this morning. I know they will be fine it’s just hard! Saying goodbye is the moment when everything gets real! Here we go…20150323_193809

Please don’t call me normal.

I didn’t always think I was special. The first time I thought I might be a special mom was the first time I declared I was like any other mom. I was attending Saint Francis College and was sitting in a lounge area of the ladies room. I had been attempting to pump breast milk and feeling sad and frustrated because pumping in the rest room really wasn’t working. Another student must have noticed my upset because she struck up a conversation. She thought what I was trying to do was awesome. I said I was just doing what was best for my kid, which is what any mom would do.

Her response was that no, that was not what any mom would do. She knew plenty of moms who didn’t put their kids needs first on a routine basis. In my mind putting Nick first was the easy part. She made me feel proud of the mother I was.

I can’t remember if we had even gotten to the topic of fibular hemimelia. This interaction happened in September of 2003 so I am not even sure Nicholas had seen the orthopedic doc and gotten a diagnosis yet. Recently I have read a few posts by moms of kids with special needs or differences in which they reject being called a special mom. They claim normalcy like a badge of honor. If that label is what they need then I would never take that from them however I suspect there are many other mothers that get through more than a few sleepless nights thinking they are anything but normal. They are in fact bad-ass-rock-star-moms and I couldn’t agree more.

I know there are moms that feel like god or the universe chose them to be mother to a special child. That is a beautiful thing and a beautiful way to forge meaning. Things happen that we wouldn’t choose. Some of us rise to the occasion, some do not. For me, to take away the meaning making we are left only with the struggle.

There are also moms (and dads… sorry dads I never write about you) that choose children with differences or medical conditions to adopt. Maybe they like the label normal but I couldn’t ever give it to them.

Normal just isn’t a label I would take for me or for Nick either. I used to worry about people treating him normal, not anymore. Fair, right and good treatment is not always the same treatment as others. In my mind claiming normalcy does not honor the journey we have been on. I can’t say that every other mother would do everything I have. How could I believe that Nick has gone on this journey to be normal. What is wrong with special?

When I first read the “I am not special” type of posts I felt a little bad. I wondered did I have a big ego. Was I wrong to think I was special and Nicholas was special… and what about all our fh friends and the moms with kids with more serious and life threatening conditions. The truth is I think they are way more bad-ass-rock-star than I am. This is not an ego trip.

To be honest I wouldn’t enjoy someone telling me I am just like every other mom. I know I am like many, many moms who put their kids first and do whatever they have to do (and actually have to do some things most moms could never ever imagine) but the fact that other moms are special too does not make me less special. It just means I am in good company.

Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, ‘Who am I to be brilliant, gorgeous, talented, fabulous?’ Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.” Marianne Williamson

Forged Narratives

Personal narratives have been on my mind lately. Mine, your, ours… they influence all of us. What we tell ourselves about what has happened to us and around us influences who we are much more than the events themselves. Sometimes I think we think ourselves into being, and as a person who often feels that I think to much, this can be scary.

In my own life I was reaching for a positive narrative regarding some difficult past events, not related to having a child with fibular hemimelia and I could not find one. During a discussion a friend said something to the effect of “they made you who you are.” I wouldn’t be me without everything that has shaped me. I have had this realization on my own before. It is part of my imaginary learn and relearn life lesson list. I should really write these lessons down instead of having an imaginary list. Might save myself some time and sanity.

This morning I woke up and realized something else. The positive part is not necessarily that the experiences made me who I am, it’s that I like who I am. Wishing my story to be different or even wishing the present moment to be different would be like wishing myself away. I don’t want to do that. What a liberating realization.

The sad narrative can be a tempting one to cling to. Perpetuating it and feeling sorry for yourself can be a form of attention seeking that can feel like a way to get emotional needs met, but it doesn’t work. Being brave enough to forge an identity out of what looks like a sad story at face value can change your life because it changes your mind.

And this brings me back to fibular hemimelia and Nicholas. I realized at some point that I could not wish FH away because that would be like wishing who Nick is away. Years ago I thought parents who said they wouldn’t take their kids fh away if they could were crazy! Hello! Wouldn’t you do anything to keep your child from suffering. Now I am in their camp and able to see this lesson applied more expansively.

Recently in our support group someone was struggling with their choice of treatment for their child. They chose lengthening and wondered if they had chosen amputation would their child’s life be easier. Reading over their post I began to wonder if the struggle was not so much about the choice of treatment but with the reality of fibular hemimelia. Taking away the leg doesn’t make it all go away and neither does reconstruction and lengthening. That is a hard reality. We can’t make everything “all better”. As a parent that is a lesson we all have to face. Regardless of wether a child has limb differences or not.

I have no idea what the last almost 11 years would be like without fibular hemimelia. It molded our whole family. It forged Nicholas in a way that I would not have chosen for him but now I wouldn’t change for anything. I also believe that like me, he likes himself. I don’t think he would wish it away either.

I believe we are all forged, if we are lucky. Seriously lucky. Life will throw things at you that you never wanted and you will use it. You will mold it into meaning. Or you will wish it away, wish you were different, wish your child was different and never find peace. Disclaimer: These are my personal thoughts and opinions. I am sure there are other paths to peace but I am also sure mine was forged in fire and I am grateful for that fire today. I didn’t feel that way yesterday and I might not everyday but I choose it today. Today I am proud to be forged and I am proud to see the forging of my children unfold.

I know how hard this is for new fh parents. I know because I was there but if I can get to here from there, you can too. You wont always want to wish it away and it could open your life up in surprising ways. I never planned to blog and moderate a support group. Having a child with fibular hemimelia brought together my desire to write and my desire to help others.

Creating a place to help parents new to fibular hemimelia became a dream. This blog and the Fibular Hemimelia and Limb Lengthening Awareness Facebook Group are the realization of that dream. I had no idea when I started if anyone would find this blog, would read it, would find it helpful. But I wished it to be so. Sharing our family’s journey and at times my personal journey has helped me forge meaning and build identity in a way that, when I am open to it, brings me peace.

“Difficulties we don’t deserve happen to all of us. Yet, when we dream, we begin to make meaning of these challenges. We give ourselves hope, and we can hope that the sorrow and pain we’ve walked through will help lighten someone else’s load.” Whitney Johnson Dare, Dream, Do

If you are interested in forging meaning and building identity check out Andrew Solomon’s TED Talk.

Surprise Surprise

Learning I was pregnant for the first time was a surprise. The calmness I felt in that moment was a surprise too. Pregnancy itself was full of surprises, most too gross to share here. And childbirth was an even bigger surprise. I will leave it at that, in case anyone reading is pregnant. I don’t want to ruin the surprises for you. 

Maybe it’s meant to be this way, but it seems to me that people least often share, the most significant things about life. We have a frame of reference regarding events and share that all over the place (hello twitter and facebook). But really, the real stuff is like a diamond in the rough.

I am often surprised when people enjoy my blog posts. When I reflect on which ones resonate with others, it’s really the ones where I open up the most. Sharing what hurts and what’s real is what others identify with and take interest in. It’s the identifying part that I am most interested in. Realizing I was not alone was a surprise. When I write a post and others say they have felt the same way, it is healing and refreshing.

Sharing my experience as Nick’s mom and Nick’s fibular hemimelia journey has had surprising results. I started writing because I wanted to reach out to families who were trying to decide wether or not to amputate their children’s limbs. I also wanted families going through lengthening and reconstruction to not feel so alone.

To that end I also created the facebook group Fibular Hemimelia and Limb Lengthening Awareness. I had been run out of a fibular hemimelia support group on yahoo, because it had a moderator that believed she knew what was best for everyone (amputation), and she didn’t want me telling parents that lengthening wasn’t torture and that my boy was running and playing and loving life with his own leg.

Awareness of and telling the truth about lengthening was key at the time. It is still important to me but it also surprises me to see just how much of a support group our group has become (over seven hundred members later). It is a place where people are so real. They open up for, and to others, to help them, and themselves. The blog and facebook group have helped me in ways I can hardly express. That wasn’t my intention but it’s a surprise I am grateful for.

I think having a child with a birth defect had a profound effect on my psyche. It dictated the mother I would become. That certainly surprises me. In the beginning it was all about minimizing the effect fibular hemimelia would have. It was about knowing Nick would walk and have a “normal” life. FH would not get in the way.

But what is a normal life? Before I had Nicholas, I think to me a normal life was being married, working, having kids, planning vacations and progress. Something like the american dream, ending with me as a grandma holding a baby rocking on a porch someday. That was success and I was relatively on track. House, husband and baby on the way seemed like a good place to start.

That may make it sound like I was some serious planner, but I wasn’t. I think that trajectory is ingrained in us in a variety of ways. Fibular hemimelia woke me up. Shook up everything I knew and believed.

The biggest surprise of all is that no one told me the progress really doesn’t matter (at least not back then… lots of people say this kind of stuff now). It’s what happens in between that does. Moment by moment living. It’s not about getting Nick’s leg fixed soon and quick. It’s about laughing at my baby joyfully dancing with a crazy hunk of metal on his leg. It’s about hearing his little sister tell him that she can be brave because of him. And for me it’s about connecting. This blog, the facebook group, emails and calls in which I am able to help someone, really help them, that feels like a kind of success I didn’t know existed.

Reaching out to others, opening up and really sharing is a gift. It’s being passed around all the time in the facebook group. For me it is an every day thing. Reading other’s struggles doesn’t get me down. It motivates me to try to think of solutions or to remind the sacred parent that we are here for them. Sometimes that is enough. Just being present in the moment. I can’t help everyone but I try.

Nicholas is as motivated as I am to help others. He loves that reading about him has given others hope. He loves that he has been translated into spanish. He loves that his experience has value beyond what it has been for him. And he loves being what he now calls “world famous”! That’s a surprise. The extreme pride Nicholas feels because of fibular hemimelia.

I didn’t know when I had a baby with a birth defect that that is what was possible. I didn’t know my son would be my hero. At this point though, that’s no big surprise.