State of Love

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My stress is gone. I know there are still details that I have concerns about but really and truly I feel ok now. Posting my feelings yesterday and the act of writing the post made me realize that I was resisting and judging myself for the feelings I was having. So to begin with, sharing and accepting helped.

Then there was the response. My heart feels so full right now it’s really hard to describe. The response came in texts, private messages through Facebook and in the Fibular Hemimelia and Limb Lengthening Awareness group.

Opening up my heart and sharing, being vulnerable, that changed everything. a43b0d65c8ae2d1f550fb9d615ad9c12

It’s not he first time I have realized the power of vulnerability. I took Brene Brown’s awesome E-course The Gifts of Imperfection and of course read the book too. I absolutely loved it. Sometimes though, I take in these wonderful lessons only to loose sight of them. Being honest about my feelings is usually instinctual for me. With my experience as a mom of a child with Fibular Hemimelia, it’s a little different. Creating a support group and offering support in general, kinda made me feel like I needed to live up to the “No Fibular No Problem” name. How could I support others and give them hope if I was scared and sad myself?

The group let me know through their replies to my post that it was totally, absolutely, ok for me to share just like they do. They made me see how important it is to let them support me! I don’t have to be strong for them but I can be strong because I am one of them. I can let out my emotions and be completely understood. It is truly an amazing feeling. Having friends and family offer words of support is so uplifting as well. If I had not been honest I would have none of this.

“As you stress accept it. It’s a part of life, give it it’s due. Then remember all the things you have to be grateful for. Also a little chocolate is good for headaches.”

" Hey Jennifer because we found your blog and then this group in a time when we had to no answers, this little leg is an inch or a little more longer, so thank you!!"
” Hey Jennifer because we found your blog and then this group in a time when we had to no answers, this little leg is an inch or a little more longer, so thank you!!”

“Let me tell you a little story, not long ago… I was sitting on a bench in a lovely town near Baltimore, having the worst panic attack and stress EVER, my son was going to have surgery, my favorite aunt past away, my husband and daughter were far from me, and this wonderful lady called Jennifer, took me in, let me vent, and let me say bad words in spanish, took me for a walk with all the kids, and told me that our feelings make us who we are, if we didn’t have times of stress and despair it wouldn’t be natural. I almost cried in her porch, and she just smiled and told me, let it all out! It will get better. And you know what!! It did!!! 

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“Don’t ever feel because you are a “leader” or far into the journey that you can’t have weak, crappy, ticked off moments and know we will all be here to hand you the support you graciously give out all the time!”

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“You have always been OUR shoulder to cry on, and been an incredible supportive person, i think its our time to give a Little back of everything you have given us, and teach us. It is absolutely normal to be stressed, and as Allison Says we are only 1 or 2 surgeries in, this is 14th for you, and each time is different, and it doesn’t matter if it were the 100th time its your boy it will always be stressful.”

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“It’s such a crazy cycle to have to go thru. For some reason, experience seems to help the mind but not the heart.
Praying for peace for you tonight. thank you for sharing with us. I imagine for a great deal of us here it is an honor to be able to support you and your family after everything you have done for us.”

So there you have it, or at least a sampling. A sampling of love, kindness and connection! It was always there I just needed to open my heart and hand.

P.S. Nick is out playing in the snow. He’s relaxed and confident about it all right now. Yesterday he got to see a video of a younger gal using the magnet and lengthening her femur, just like he will. It was great for him to see that it is not painful. He also said being at the hospital with me will be just like “old times”. He has happy memories surrounding surgery. I am so grateful for this. Being positive and finding fun in it for him, is easier when I am able to express the mom parts, that are not necessarily easy parts. For Nick leg lengthening is a good thing! Time to follow his lead! Another reoccurring theme.

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.

The House That Builds Love

This post is actually a reading I gave at the Unitarian Universalist Congregation of the Susquehanna Valley. Their charity of the quarter is the Ronald McDonald House in Danville, PA.

You might have heard that Ronald McDonald House is “the house that love built”. I believe that’s true, they would not exist without the loving donations of millions of people like you but what you may not have heard is that RMH is also the house that builds love. To be clear we have never stayed at a Ronald McDonald house. When my son Nicholas has had surgery we have stayed at a place called Hackerman Patz house (aka HP). It is right across the street from Sinai of Baltimore where he has had 13 surgeries on his right leg for a birth defect called fibular hemimelia. When HP has been full we have tried to say at RMH but it has always been full as well. Hotel rates when you are facing stressful and expensive surgery for your child are not easy to pay but we have,and many families do, every day.
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I know we are fortunate to have lived within two hours of our son’s surgeon. With Nick’s biggest surgery we were members of this congregation and came home to you and received so many meals and so much support. I can’t express how meaningful and helpful that was to us. We were so lucky to be able to bring Nick home to our community. So many families can’t go home and still get their child the care they need. They move into these community homes tired and scared but soon learn they are not alone. Places like HP and RMH turn strangers into family. Sometimes very quickly. As fortunate as we are not to have needed to say long-term at HP, I know we missed out on the bonding and connection that comes from living with families going through the same type of things you are. Communal meals, movie nights with popcorn, support, celebrations, and yes stress, surgery, treatments, sadness, and sometimes loss but always love. hp
We do go to HP a few times a year to meet up with friends and meet new families who have children with orthopedic conditions. Meeting and connecting with families that know exactly what you are going through is so powerful. These connections offer inspiration, healing and so much compassion. Places like HP and RMH house all of that.
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For the last two years we have gone down to HP for mother’s day to bring the families there a home cooked meal. This has been really special way to spend mother’s day. This year there was a mom there with 5 children, on her own. Some of you know that I am the mother of four (so I think moms of 5 or more are like crazy super hero’s) and other than daily appointments I have never had to bring all my kids with me when Nick needed surgery. This mom was amazing. They were already there for months and not heading home soon. For families like hers without places like RMH and HP her child might not have been able to have the surgery needed to keep her leg. When you need specialized care the likelihood of finding it close to home is rare.
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One of the reasons we chose to move to central PA was its proximity to Baltimore. Most families can’t move for medical care. We built our life around Nick’s needs. We were so lucky to be able to do that. When you have a child with special needs or a medical condition or an orthopedic condition you end up in places your never imagined but you also end up feeling love you never imagined. I am so grateful for the love that builds RMH’s and places like them and even more so for the love that these houses build.
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What we take for granted

Recently a neighbor complimented Nick on his running. Nick was a bit confused but managed a polite reply and kept going. He totally takes it for granted that he can run.

I am grateful for this fact, that he expects his leg to work just fine for him, because it does. I totally understand others being surprised by this. I pointed out that Nicks gait is actually more “normal” running than walking. It’s not what people expect. I also shared the fact that he takes his ability to run for granted and that that is the best possible outcome. I wish all my fibular hemimelia conversations went like this.

Being one of the moderators of Fibular Hemimelia and Limb Lengthening Awareness, the support group I created, was a challenge for me in the last week or so. Someone posted about a 10 year old choosing to have his leg amputated because he didn’t want any more surgery, after having had 9 surgeries to keep his leg already. Of course a declaration like this is not the usual post in our group and it started a discussion that maybe never should have happened.

I got hung up on the details, the amount of expected difference suddenly increased, he would need four more lengthenings, the doc said his ankle could not be fixed. I am not sure how it can be called the child’s choice with those realities in front of him. That sounds impossible to me. But those realities didn’t add up
in my mind and I expressed concern over the child’s ability to know wether he was or was not making an informed choice. I suggested they research the foot on foot AFO’s that seem to be a great way to delay lengthening or delay the whole choice.

The fact that the facts didn’t add up to me really didn’t matter. Every now and again I get too caught up in something in the group. I started the group so families would know that lengtheng was not torture and that it works! I wanted accurate information out there to replace scare tactics I read on other groups.

Reading about a 10 year old making this choice was heartbreaking. I felt like his doctor copped out by giving vague information, making it sound impossible and then telling the child to choose.

The problem is that this is how the situation read to me based on his mothers posts. I didn’t have all details. Even if I did the truth is some people choose amputation even when it’s not the only option. I don’t think it’s wrong. I just think that in our group we need as much factual information as possible. Parents use what they read in the group to make choices for their kids. Hearing that at age 10 an expected discrepancy can jump 10cm if frightening. Parents needed to know that that is not typical.

In the end I let my quest for clarity cloud my capacity for compassion. This mom just came to the group for encouragement. She didn’t come to be questioned. I could have tried to understand that. I was just too far gone. My suggesting she check out the Amputation Awareness group came too late. Honesty though I am not sure why she chose our group. It wouldn’t take much reading to learn our leanings. Our group name states as much and our description is even more clear.

I guess I took it for granted that people understood this. When the amputation awareness group was first created I thought it was silly to call it “FH and Amputation Awareness”. I likened it to calling a group Cancer and Chemo Awareness, because amputation is the standard treatment for fibular hemimelia.

Ultimately though I was grateful to be able to suggest a group where this mother could be understood. Some members of the lengthening group understood her from the start. Sadly I was not one of them.

In the future I think I need to keep kindness on my radar more often when posting. I took it for granted that I would be compassionate because I know I can but that doesn’t mean I always am.

Defining Nemo

Nicholas and Nemo were both “born” in 2003. Nemo with his little fin. Nick with fibular hemimelia. This could have been a lovely coincidence. A match made in heaven. Except it wasn’t.

One conversation really turned me off the movie (though its not at all fair to the movie). Someone was telling me about why they did not like the movie. They said it was depressing because “all of Marlin’s kids die except for the gimp”. In that moment I froze. Then I changed the subject, and felt awful for not calling this person out on their ignorance. They had actually watched the movie and that is what they took from it. I know cruelty was not the intention. I know this person was not thinking of Nick specifically. Maybe this was a horrifying attempt at humor. It did make me wonder what they thought of my son.

Back to Nemo… The main plot of Finding Nemo is about Marlin finding Nemo, obviously, but it’s also about learning to let go. Finding and letting go. They do seem to go together.

Dory: There, there. It’s all right. It’ll be OK.

Marlin: No. No, it won’t.

Dory: Sure, it will. You’ll see.

Marlin: No. I promised him I’d never let anything happen to him.

Dory: Huh. That’s a funny thing to promise.

Marlin: What?

Dory: Well, you can’t never let anything happen to him. Then, nothing would ever happen to him. [Marlin stares at her] Not much fun for little Harpo.

If we focus too much on preventing the bad things from happening we will prevent the good things from happening as well. That’s a repeat theme from a few blog posts ago. I also think we need to find out who our children are, in order to be able to let them go. Realizing that Nicholas is capable of handling the questions and interactions that come with having fibular hemimelia, on his own, keeps me from being terrified of what might happen every time he is away from me.

Meanwhile Nemo is trying to prove himself to his over protective Dad. Although his fins smallness, seemed small to me, compared to Nicks leg, Nemo still needed to learn that he was able and capable. The difference between Nemo and Nick, is that Nick was always told that he was capable and able. He still needs to live it to really know it. However he will not ever have to prove anything to me. For Nemo, seeing Gills damaged fin helped him believe he could be capable too.

Gill: Nobody touch him! Nobody touch him.

Nemo: Unh! Unh! Unh! Unh! Ah, can you help me?

Gill: No, you get yourself in there, you can go yourself out.

Deb: Ah, Gill!

Gill: I just wanna see him do it, OK?! [Nemo panics a little] Calm down, alternate wiggling your fins and your tail.

Nemo: I can’t! I have a bad fin!

Gill: Never stopped me… [Nemo sees Gill’s scarred fin] just think about what you need to do.

Nemo was brave and capable. Kids with differences will hopefully identify with that (though hopefully they wont take risks like Nemo did to prove it). It’s also a wonderful way for kids without physical differences to be introduced to a character with physical differences.

Accepting differences is my favorite theme of Finding Nemo. I think it’s illustrated best in Marlin and Dory’s relationship. Dory is different. Dory may not be able to remember short term information, but she has other abilities and gifts. She can read. She can understand a little whale. She is remarkable really despite her mental illness. I don’t know if kids get that but they know Marlin would not have found Nemo without her. What she had, mattered more than what she didn’t have.

And lastly what is called the tao of Nemo “Just keep swimming”. Even if we help our kids to gain confidence and feel able, that doesn’t mean things will be easy. I don’t think life is easy for most of us and I don’t think it’s supposed to be (which I know I have written before). But fibular hemimelia does not have to be the thing that makes it hard.

For Nemo it’s really not the fin, but how he thinks about the fin that matters. I think it’s the same for Nick. It’s not the fibula or lack of fibula. It’s what he thinks about the fibula. This reminded me of Thich Nhat Hahn’s quote “No Mud. No Lotus”. Maybe FH does feel like “the mud” sometimes but the outcome of it so beautiful. And without it, we would view life so differently. Maybe we would have more problems. Maybe we would view the little things as problems, that are just little things.

No Fibula No Problem. The tao of Curley.

The Girl With Two Fibulas

I try to keep the blog topics fibular hemimelia related, so I don’t end up sharing a lot about Nick’s siblings. Charlotte came home with a work sheet called The Back to School Times, same as Nick did (which I may have only shared on the Facebook group and not here) and hers is no less beautiful.

Words that describe her: artist, friend, sister, nice, runs, swims, fun, family… Favorite things to do: art, swim, see my cousins… Things she’s most proud of: Swim trophy, girls on the run, not crying on the first day of school (she is way braver than me) & making friends. Something special about me: I am on a swim team. This is the art work from the back of her paper which she wants to finish when she comes home today. 

Artwork from the back of Charlotte's work sheet

Charlotte is all of those things and more. Right off the top of my head, I would add beautiful and smart… I think I need to tell her these more often so she will list them too. Then again I like that she might not have listed them because she does not see those as the most important things… I may be overanalyzing, just a little bit.

This work sheet is another glaring reminder of how powerful the swim team experience was this summer. It gave Charlotte so much confidence. I still choke up when talking about it. After my last swim team post, which was so well received in our community, I had to cut conversations short, because I really would have cried. I was so proud of my children and grateful to our community and the swim coaches!!! My kids are so proud to be Arden Sharks!!!

While Nick received and earned the trophy for most improved, Charlotte went the farthest emotionally for sure. She would not put her head in the water at the start and by the end she was going off the diving board! She conquered her fears. I was chatting about it with another swim team mom (who supported us a whole lot this summer) just yesterday. I knew I was not the only parent who enjoyed watching my children transform, still it is wonderful to hear.

Charlotte is so compassionate. Apparently having two fibulas does not hinder compassion one bit. I thought Nick had cornered the market there due to his experience having fibular hemimelia. Though that’s not really true. Charlotte has always been empathetic and kind, always thinking of others.

Charlotte asked last night if she could bring two snacks to school each day for afternoon snack because there is a classmate that never has one. She said that she and some other kids share with her but she would like the girl to have something of her own. She also noticed a boy in class only eats two containers of applesauce for lunch and was really worried. It turns out he has a sandwich and chooses not to eat it. Charlotte had really wanted to bring him a sandwich because she believed he didn’t have one.

That’s my girl. I could go on. I will post about her again in the future. I think it actually does help fibular hemimelia families to see that siblings of fh kids do well too. Even in a big family like ours. It might be hard at times (which Charlotte has let me know) but over all, just like with Nick, I believe that fibular hemimelia gives more than it takes.