Faith Sans Fibula

Lately I have had some moments of fear and frustration trying to figure out how to get Nicholas this life changing brace that requires not one but two trips to Washington and still has uncertainty about whether insurance will pay for it. However I decided he would have it no matter what.  

Thirteen years ago when Steven and I were trying to decide if he should keep his leg, I took finances off the table as a decision making factor. We would make it work. I was not going to let money decide if my son could keep his leg or not. I don’t know if that sounds foolish or immature… maybe it was a matter of faith. I knew we could work that part out. I didn’t know if Sinai would be covered by insurance. I didn’t know if we would have to spend months in Baltimore, like so very many families do. I didn’t know what any of it would be like really. 

What I did know is that I could not decide to amputate my sons limb if it was functional. I am surely more open minded on that front now and I do think amputation can be the best option for many kids. Its not just a last resort. But in Nick’s case, for 12 years his leg certainly functioned as needed. Then last fall he had to start using crutches to walk because of pain and the words symes (amputation) came out of his docs mouth somewhat causally when discussing options. To be clear he didn’t think Nick was there yet and he presented other options but for me there really has been no going back from that moment.

It has made me question the viability of Nick’s foot like never before. Dr. Standard came up with a surgical plan which had about 5 parts and most of that any reader of this blog knows. Nick needed that surgery for various reasons and it was a success except for the fact that he still has pain in his foot (and knee at times). Pain that keeps him from being active. Pain that even happened when he was swimming. He was supposed to be free this summer and it has been anything but.

So again I questioned the viability of Nick’s foot. I refuse to give my son pain medication so he can be active. So he has spent a lot of this summer, way more than I would have liked off his feet and it made me think about the option we did not choose more than ever before. I still think it’s crazy that we even had to make that choice. I don’t regret the choice we made for our beautiful baby but his case of fibular hemimelia is not mild. His foot deformity was not solved with the first super ankle or subsequent corrections. He has had more than double the number of surgeries we were told he would need. That number means nothing to Nick and he has said so. Nick said he would gladly have surgery every few years to keep his foot functional. For him avoiding surgery is not part of the decision… speaking of decisions…

There is a huge difference between today and thirteen years ago. Today the choice is not mine and Stevens. Today the choice belongs to Nicholas. He wants to keep his foot. I have to make that happen. Thats what moms do.

The Exo SYM is where I have placed my hope. Since it has worked so ridiculously well for others I believe my faith is well placed. I can’t do it alone and I wont have to. As stressful as trying to figure it all out has been I have faith. Just like 13 years ago I knew if we made the choice we felt was right the rest would work out. Money will not, and will never decide if my son keeps his leg.

And so as the universe seems to provide what’s needed (or God or love or whatever you like to call the force that so many of us feel in our lives) I have had friends near and far reach out….

“Start a funding page and I’m in.”

“I might be able to help you.”

“I might have friend who can help you.”

“If I can help let me know.”

“I too will help.”

“I have a relative who may be able to help.”

“Go fund me. There are tons of us who would like to see Nick not in pain.”

“Benefit Concert?”

“I have your back.”

“Nick will have what he needs, I promise.”

Do you know what this does to fear and frustration? It neutralizes it. Whether or not these offers are needed, though I feel fairly certain they are. Whether or not they materialize for whatever reason they all create this avalanche of of kindness I feel washing over us. They remind me that as hard as it can seem and as dark as the world itself can get in moments (my Facebook friends know I have had some lately thanks to a political rant I shared), I know, know, know, know, know that Kindness is Everything, that Love Wins that we will make this happen for Nicholas. We have so much love and support behind us and beside us and holding us up. This is why my moments of frustration are moments! Just moments.

Our faith requires no fibula.

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

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.

“Why does everything happen at once?”

That is what Nick asked me last night. I remember asking a friend that same question five years ago when my beloved Aunt Eileen died and Nick had surgery two weeks later. She reminded me that surgery is a good thing. I understand that now more than ever. Nick’s leg lengthening’s are him moving forward. They are progress toward a goal. They are not bad. Hard at times, but not bad.

Loss on the other hand feels bad and that is what we are facing. Our dog, Monk, is dying. We can’t help his suffering so we are ending his life today. We explained this to the kids last night and right away Nicholas said he does not want to keep Monk alive any longer. He can see his struggle. He understands what we need to do. Charlotte clearly does too. Our evening and night involved a lot of tears. Chris and Bess were less verbal about it. Chris seemed to get exceptionally upset about other things and we talked about the fact that maybe it was really about Monk. It’s so hard.

Bess said she was not ok with either option, suffering or death. She voted neither. If only we could.

I don’t know why this is happening now. I don’t know why life piles it on sometimes. We are trying to focus on the fact that Monk has had a good life and been a great pet. He deserves a good death, if that is possible. He started to seem sick right before Nick’s surgery. It was so hard taking him to the vet and not getting many answers. Now as his symptoms have increased the picture is more clear. His vet who at first had encouraged us to look into oncology told me yesterday Monks cancer seems too aggressive for any of that now.

Today is a struggle. There is no way around it. We will bury our pet. We will speak words to honor him. We will remember how crazy lucky we were to have him in our family for nine years. He’s been the easiest dog imaginable. I have never been the most attentive human to him but he’s always seemed ok with that. Still I find myself wishing I had pet him more, and walked him more, and fed him more people food and just appreciated him more.

So leg lengthening keeps going. I will remind Nick that it is a good thing! He’s doing great overall. His leg is growing like he needs it too. His knee is still going to be our focus for a while. But we have to remember to celebrate the good things and appreciate the great moments we are offered daily. Monk’s loss is a reminder to do that. It is painful for us all but we will celebrate his life as best we can today and always.

I tied to talk to Nick this morning about why everything happens at once. I couldn’t really answer him last night.  His response: “Mom it’s ok, I wasn’t looking for an answer. It was a rhetorical question.”

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.

State of Stress

This is where I am today. I do try to be positive here and I do have some other more fun things to write about, and I will, but right now I am just stressed. This stress, I realized today, is making me interpret other things as more negative than they are. I feel ultra sensitive and like a raw nerve.

I know it is normal to feel stress because of surgery. I kind of feel like it’s everything surrounding the surgery that is stressing me, and not surgery itself, but that also makes me wonder if it really is about the surgery.

The one thing I know for sure is that I am thinking too much. Meditation helped some. A snowy walk in solitude helped too. My healthy kale and eggs lunch… not so much! I need a snow day chocolate delivery service. I know it wont fix anything, but the heart wants what it wants. It didn’t help that I started the day with a crazy headache that I can’t seem to shake completely. It’s the weather. I know it is.

Staying in the moment is a remedy I know but it’s just not working right now. I had expectations of my week off from school that are not panning out. Expectations are evil, IMO. Maybe this post is just venting. Maybe I just need to say I feel shitty. I wish this surgery was not happening now. I wish Nick wasn’t up to surgery 14. He’s doing so great but it’s still a lot. Thankfully he remembers only a few surgeries really but some days it feels like it sucks that he has to go through all of it so that he can have two functioning legs for the rest of his life. Sometimes I feel like the whole rest of the world (almost) takes legs for granted. Myself included.

I worry about all the random things that can happen in surgery. I have crazy fears. I don’t care to type them. At some point this will all give way to peace and acceptance. I know it will. This agitation and stress is not my natural state but its my state right now. Maybe just letting it be and not resisting would help… maybe it has.

Surgery Requested

Nicholas has requested femur lengthening as soon as possible. We knew he needed to have this surgery within the next three years but Nick does not want to have it during middle school and he does not want to have it during the summer. His reasoning is that he is very comfortable in his current school, with his teacher and his friends. It’s a really valid argument.

I thought Nick would want as much time as possible between surgeries. Apparently that was my thought and not his. He wants as much of summer free as possible. He doesn’t want surgery during middle school at all if possible.

I knew surgery would happen in middle school so I was looking into getting him a 504plan. I figured Nick would need more accommodations in that environment.

It is hard to imagine this surgery happening soon. I’ve connect with Dr.Standards office and hope to hear back soon. This choice can’t be entirely up to Nicholas. Dr. Standard has to see if his leg is ready. Hopefully I will be posting soon with surgery plans. It’s a strange thing to hope for but I really want to support Nick in taking control of as much of this process as possible. It’s his life and his leg. I’ll make it work as well as I can for my boy.

Sometimes the best advice is the hardest to hear.

I started this blog with what I felt was the most important piece of advice I’d ever received.  “He’s a baby, just enjoy him”, came to me by way of my mother, via telephone when Nicholas was maybe 2 days old. That advice changed my mind in the best possible ways. That advice made me the mother I am.

In the years since I have seen other moms share this advice in various ways and I’ve come to believe it is a universal truth we could all use. Birth defects or not.

Another bit of advice that deeply moved me in my early days as a mother came to me through my Auntie Liz. This one was harder to hear but no less valuable.  In fact this one stung a little. 

My aunt was Nick’s babysitter while I was in college. This worked so well for so many reasons. One thing, that was great for me, was getting to see my Aunt a lot more than I would have. One afternoon we were talking about Nicks surgery and such and I said it would be harder on me than it would be on him. Auntie immediately disagreed. I can’t remember her exact words but she said something to the effect of “This is all happening to Nicholas. He is the one with fibula hemimelia.” 

That truth hit me like a punch in the stomach. Hard and fast I realized I was making it about me. Of course it would not be harder for me than him. Maybe I needed to believe that. I was so scared of him suffering. Maybe in that moment Nicholas having fibular hemimelia was harder for me than it was for him but only because I made it that way. I didn’t totally get all of this at that moment but over time I have realized the importance of putting myself aside and honoring fh as my boys journey.

Of course fibular hemimelia, Nick’s surgeries and my sharing here and in the support group have impacted me. I have been on my own journey as mom and we have journeyed as a family. Ultimately though fibular hemimelia is Nicks. It’s his life and his leg. As hard as it might have been to see him in pain, the reality is, it is much harder for him to actually be in pain.  I believe I was able to handle these situations and support Nicholas through so much because in the moment I was able to put my feeling about what was happening to him aside and do what he needed.

I am not saying it was or is always easy.  I am not even saying I always succeed. I am saying you have to try. You have to realize the difference between supporting your child through something and taking it on as your own. It may not be simple to see our babies as their own people. It’s probably mostly fine that we don’t right away. Fibular hemimelia offers us the chance to learn this parenting lesson, that I believe all parents eventually need to absorb, on the early side.

I remember Nick saying at some point “It’s my leg mom”. I am sure whatever I was doing or saying, in the moment he said that, was not honoring his experience as his own. I know I didn’t and won’t always get it right, I stilI try. I speak so often and write so much about our experience but I have never worn an external fixator. I have never had surgery (other than dental), I don’t live my life with a limb difference. My son does. Believing that any of that would be harder on me than Nicholas might have been easier for me l but it doesn’t serve anyone.

Dr.Standard sometimes says that early surgeries are hardest on the parents because we remember them and our kids don’t, but in the moment it is happening it is our child’s experience. As parents we need to be present to support, encourage, care and sometimes fight for what our children need. I believe we are better able to do all of that when we put ourselves aside. We are better able to put ourselves aside when we take time out to honor our own feelings and experience whether through therapy, talking to a friend, crying, exercising or doing whatever it is we need. 

Taking care of ourselves can’t be last on the list. That advice might be hard to hear for some of you. I’ve spent plenty of time living that way (last on the list) and it comes with a price but that’s another blog post for another day.

I am not saying it’s not hard for us. We deal with parts of the process like choices, daily care, insurance and finances in general that can be so, so hard, and totally our own. But our kids are having surgery, our kids have fibular hemimelia.