Nick does not want to leave Sinai.

Another surgery done. Yesterday Dr. Standard and company put an eight plate in Nicks’s knee, took out the 7 screw plate from the summer and took care of some adhesions that were causing pain for Nick from time to time. I was super happy Nick had nurse Harriet with him. The sight of her is such a comfort to me and Chris Fisher was in surgery with him as well.

Having so many familiar and trusted people taking care of my boy is wonderful. Chris walked me out of the or when I left Nick asleep. It was nice that he did because I might have cried had I walked alone. Chatting a little was a nice distraction. We talked about how violent orthopedic surgery actually is and the fact that the equipment used is similar to what could be found out in our tool shed. Nick use to ask for details on what Dr. Standard was going to do. I never asked for too much info but I am sometimes curious. I imagine it being loud in the or with drills and such going. I guess it’s pretty gross to consider so I’ll stop now.

We are having a pretty nice morning. I am kind of leaning Nick’s way and not wanting to go home. Except I really, really miss my other three children. Other than that we could stay. We’ve got nurses making sure Nick is comfortable and ok and a lovely lunch menu to choose from and it’s quiet and there’s cable and we even slept pretty well last night.

Maybe we are too good at making the most of it? Still we’ve got to go. Nicholas does not need to stay. His pain is under control and his leg looks good (according to Brian one of Dr. Standards new residents). Brian is new to us but may not be terribly new. Hard to tell. He was great with Nick and we had an interesting chat about zombies which has given me a whole new perspective on them and the fact that they are not as altogether impossible as I had thought they were. Despite his sharing that unfortunate zombie info with me I liked him a lot.

Nicholas had asked Dr. Standard Thursday if he would have to do physical therapy and walk right away and Dr. Standard said no so we’re good to go and Nick was so relieved. Dr. S said Nick can continue to do things his own way at his own pace. It is great that Nick has that control and Dr. S knows him enough to know he’ll get moving when he’s ready.

We and a brief visit from a family with an adorable little 15month old in his first fixator. It was nice to get to chat with them. We had met over the summer during the arm break/leg healing phase. I remember so well when Nick was a baby and we were here for his first surgery. Nothing since has ever been as hard as that. I hope that talking to Nick and I helped some. It’s hard to be at the beginning but that little boy was so beautiful and eager to get down and move around! I am sure he’ll do great and god willing his mom and dad will look back like I do and feel that the hardest part is behind them too. The light at the end of the tunnel gets brighter with each surgery behind us and thankfully today it doesn’t feel like an oncoming train (thanks Gretchen for that reference from so many years ago on the yahoo group it’s so fitting I never forget it or the support you and so many others gave me).

50% weight bearing… ??% stressed…100% GRATEFUL

The Bat-mobile at Sinai

Batman arrives at the RIAO. This is after we had the chance to see him in the lobby where he whispered in Nick’s ear “Get better ok”.

Super Hero and Doctor Hero Hugging!

With the summer of the “normal kid break” and the 7 screw plate coming to an end I am realizing just how stressful this has been and continues to be. Nicholas had a great visit with Dr. Standard yesterday. His arm looked well enough to leave the cast off and just get a splint. His leg was healed enough to go to 50% weight bearing. It’s a big step considering he has been hopping for what feels like the whole summer.

We’ve got to pick him up an additional splint to use while swimming! Swimming is going to feel so great. He can 100% weight bear in the pool. I can’t wait to see my boy moving freely and joyfully. Really can’t wait!

Comparing the Nick of this summer to the Nick of last summer I see a completely different kid. He has grown so much in so many ways. Physically he is like 20lbs heavier and so much taller. He’s almost up to my eyeballs! At nine years old that’s pretty tall. Emotionally he has matured as well. Maybe this is all normal. Since he’s my oldest this is all I know of mothering a nine year old.

This summer has stressed us all. Last night Nick started having pain in his arm which he said he felt where the break was. I was helping out on a web chat with Dr. Standard so I was able to let him know right then. Basically he told me to give him ibuprofen round the clock for a few days but if the pain persisted to call him tomorrow (meaning today).It was a hard night. Pain would have been ok I am sure but pain right where the bone broke frightened me. Nick and I were both up past midnight.

Today it seems that the pain only happens when he bends his arm and it is not only where the break was. His elbow was hurting today and we are thinking some of the pain is in his wrist. That would be normal. He’s not moved his wrist or elbow in like 6 weeks! But nothing about a broken arm feels normal to any of us. Nick is keyed up because one something goes wrong it is easy to imagine wrong stuff will continue!

At least Nick’s leg looked great on the films and it has not caused any pain. My one worry on that front is that when Nick started to put weight on it while using the walker he seems to turn his foot totally out to the side! UGH Not what we want to see. Yesterday it seemed like Dr. Standard had some concerns about Nicks knee but we wont know anything till we can do a standing x-ray at his next appointment in a month. Lengthening is a big strain on the his knee (his super knee surgery was in June ’11) and I imagine all the rest has been a strain as well. I am hoping he wont need another 8 plate or any other kind of intervention for a while but really hoping is silly. It is what it is already. It will be what it will be.

The fact is we planned this last lengthening when we did for 3 reasons. 1. Nick’s foot began to hurt. 2. Steven was loosing his job and we only had insurance for a few more months. 3. We wanted Nick to be done by summer time or at least by midsummer.

Reason number 3 was not so realistic. We did our best to make it happen and then life happened. Nick said to me “Mom you promised this wouldn’t be a bummer summer and it was”. Nothing SUCKS more than hearing that. At least I pointed out that it is not over yet and as home-schoolers our summer can continue!

We’re hoping to move to less stressed and by next month to more weight bearing. As hard as it has all been everything is ok. This all could have been much worse. We still have the best doctor and team looking after Nicks bones! Here we thought it was just the leg!

Yesterday was a great day at the RIAO. Batman was there. Truthfully my kids are not so much into Batman but it created a really fun vibe. Personally it made me happy to see all the happy kids and the hard working RIAO folks watching the happy kids. Nick was glad to get into the cast room for removal but when it came time to do it he was scared. Melinda the tech was so patient with him. She always is and we’ve spent a lot of our RIAO time with her this summer but this was unusual for Nick to be so upset yet she was easy going and got it done.

Then Nick was scared to get off the bed to go to xray and the tech said (I wish I could remember his name he is the least chatty guy but great all the same) “That’s ok I’ll just wheel him over”. Another instance of patience and kindness making all the difference. I was just not feeling calm myself and it was nice to not have to be the one to figure it all out and make it all ok.

So now we make sure Nick is not more than 50% weight bearing. We hope the arm pain goes away. We try to keep the arm safe. Maybe most importantly we try to have fun and find some cool water and swim. And of course focus on how darn lucky we are in so many ways. All this bone business might have made a bummer summer but we tried our best to make the most of it, and it was all fixable, and Nick still grew 6cm of new bone in his right leg. Even when it kind of fell apart he didn’t loose any of the length he worked so hard for.

The truth is Dr. Standard preserved the length. I don’t think that was a guarantee. At least from what I have read of others experiences with other doctors. Perspective is so valuable. I am trying to teach it to Nick in the kindest way possible. Not just to be happy because it could have been worse or because he’s better off than others but to look at how far he’s come. From my perspective it never ceases to amaze and my gratitude is always present (at least to some extent) even during our first and hopefully last bummer summer!

Oscar Pistorius was born with Fibular Hemimelia

Did you know that? Maybe not since most articles I have read don’t mention it. If you google “Oscar Pistorius Fibular Hemimelia” it does come up. I didn’t watch the Olympics so I don’t know if it was mentioned there either.

Some say he had an advantage despite scientific evidence otherwise. Prostetics have not yet advanced passed the ability of the human body. At least as far as my googling shows. If you’ve not got feet, and ankles, and calves you’ll have to use what you’ve got to make up for it, and that is quite a feat, carbon fiber springy legs or not. Still it’s really hard for me to look at this guy and think “disabled”.

When Oscar was born I doubt his family had any other option other than amputation. Even if they had options they might have still chosen amputation as many parents still do. There are kids on the various FH support groups with bilateral FH and prosthetics. I am sure they, and their parents have found a hero in Oscar Pistorius.

It’s a beautiful thing for a child to be able to look at their television and watch this amazing man, who is “like” them, run to the cheers of the world. I am thinking there will be kids asking for those amazing cheetah legs like crazy now. Most kids I’ve seen on the support groups don’t get those legs. I doubt most insurance would cover them. Which makes me wonder if Mr.Pistorius might be just the person to help these children get better prosthetics. Couldn’t an olympic athlete raise awareness and fundraise to an extent that most of us do not have the ability to.

Ahh… ability. We’re back at that again.

Oscar is quoted as saying “Being disabled doesnt have to be a disadvantage.” That sounds great and rings true but I can’t help but wish Fibular Hemimelia was mentioned more. I can’t help but wish he would use his fame to benefit children born like him who might never have access to those amazing prosthetics which enabled him to compete at the highest level possible. All kids with cheetah legs won’t all make it to the Olympics. But we’re not all born athletes wether we arrive with all the usual bones or not. He could raise awareness of FH in general and benefit all children born with limb defects.

Oscar Pistorius is an athlete. He is an athlete who was born with Fibular Hemimelia which was treated by amputating his legs below the knees. I suspect that if he was born with his fibulae in tact he would still be an athlete. If you took the time to look at his body beyond his legs I think you would see that this is true. He is an Olympic athlete and an inspiration and to be celebrated as such. He may not have entered the Olympics with an advantage but he sure does have one now and I hope he uses it.

From our families perspective it’s just not been that high on our radar. I don’t think it’s come up that much but last night I started to wonder. Nicholas woke up crying from a bad dream. In his dream he said he had a surgery on his leg but Dr.Standard couldn’t fix it and his leg fell off the operating table and he woke up with a prosthetic. As he told me this he was crying and holding onto his leg.

Nick has known for a long time that amputation was an option and for many the choice treatment for FH. Maybe having to have an extra surgery has made him scared and that influenced the dream. I don’t know really but what I do know is that Nicholas could not imagine a life without his leg. I know that even with an amputation and a cheetah leg Nicholas would not be an olympic athlete. It’s just not who he is.

I had a doctor (a pro lengthening doctor) tell me when we were choosing between amputation and lengthening that Nicholas would never run a marathon with his own leg but he could with a prosthetic. This doc didn’t think that was a reason to amputate. I didn’t either.

Oscar Pistorius is inspiring to me like anyone who is able to overcome and achieve greatness. For him the “No Fibula or rather No Fibulae, No Problem” title fits quite nicely. He’s just not going to be the guy my boy points to and identifies with. Even though he was born with Fibular Hemimelia, which you might not have known until you read this.

“no fibula” google image search results. Nick believes he is the most popular person without a fibula. I hope he’s not upset that Oscar is gaining on him. Kinda funny to see them side by side. Nick is still first though ; )

Its all in the details.

Sometimes it seems like the little details of a hospital stay are the make or break things. Surgery is important and the point of course but during surgery Nick is asleep. Waiting is hard but someone else or rather a whole room full of people are taking care of my boy. The fact that I trust Dr. Standard and his team makes all the difference.

Recovery or the PACU seems to have it’s own series of concerns. The first thing I consider is how Nicholas wakes up. If they let him wake him wake up on his own he does much better. Every time that I know of that they have woken him he ends up so upset! The last few times in recovery have been much calmer. The other recovery factor of course is pain management. That’s probably the most important but when it’s going well it is easy to overlook. Sinai has always done a great job in that department.

The anesthesia department has been great about doing things in a way that works for Nick. He’s gotten a little big for the happy juice to help much and at first they have at times tried to give him an iv before he’s in the operating room. Its not necessary though because thankfully Nick is really calm and even when he’s nervous I am able to help him. That by the way is the best feeling in the world. Knowing I can help. Knowing what he needs and knowing he trusts me. The regular everyday moments of motherhood are often the best and most special things to me but the hard times, the times when I am in the zone. It’s like extreme mothering and so far I have passed the test.

Recovery is mostly waiting. If it’s a fixator surgery there is that first look. Even though it is wrapped up it’s still sometimes hard to see. It’s also an anxious time as a mom because I am mostly hoping Nick stays asleep but also wanting to hear him say he’s ok and tell him I love him. Waiting for all the necessary prices to fit together so Nick can be moved to a room can be tricky. Dr. Standard’s team need to put the orders into the computer. Anesthesia needs to sign him out and they can be hard to find. Then the PACU nurse needs to give a report over the phone to whoever will be his nurse once we are on the pediatric unit. Said nurse has other patients too and needs a few free minutes to take the call. So more waiting.

After that all happens we travel. It’s a bit of a trip at Sinai with the new children’s hospital being a bit far from where surgery happens! This time we were derailed by one of those medicine delivering robots so the trip was even longer.

Arriving in Nicks room is such a relief. I set up our stuff, turn on the tv and answer questions. Likely questions I have answered multiple times already but that’s ok. Once Nick is settled we move on to ordering food! It can take 45min to an hour so we need to be on top of that.

The rest of the important details include the iv. As long as it keeps working as it needs to it’s great. If there is any chance it will need to be replaced I have a plan in my mind to refuse unless it is absolutely necessary. That’s when I will loose my good reputation here at the hospital.

Needing a blood draw can be a problem too. Nick’s veins just don’t cooperate often. Though last night the fabulous superhuman nurse Melissa used Nicks foot and was quick and practically painless. I loved her so much in that moment. Thank you Melissa. I still love you just thinking about it. Melissa was altogether great. But so were the other nurses Nick has had. Sharon was his nurse all day today and she was amazing. Some people just do their job with such ease they put you at ease. That was Sharon.

PT and OT are important details as well. Nick got a reprieve and didn’t have to walk today since he has an epidural but he did have to get out of bed and into a wheelchair and he did not want to. Sometimes I have really just wanted PT and OT to leave him alone but I do try to be compliant and helpful! I think I did pretty good this time. When Lisa told Nick that if he got into the wheelchair he could go to the play room, Nick said he didn’t want to go to the playroom. I knew he was scared and I talked to him about how experienced Lisa and Laura were and how much better it would be for them to help him move as opposed to us moving him later because even if we didn’t go anywhere he had to get in the chair. This kind of convincing does not always work but this time it did.

I do not envy the physical and occupational therapists in what they have to do and the opposition they may face from the child and parents but they do amazing work. I don’t think I could make a crying kid sometimes with a big ex fix on their leg stand up and even walk!. When Nick was a baby I had times where I had to walk away and cry. I don’t think those moments are totally behind me but I realize if I cooperate Nick is easier to bring around too. They have reasons for doing what they do and really trying to make Nick walk for the first time by ourselves would be harder.

Epidural removal and catheter removal are big details too. Sometime the catheter bothers him. This time he wanted to keep it for convenience sake! Of course once it was out he realized he was better off but I think he feared the removal so much he convinced himself he was better off with it. It hurt being removed which everyone says it shouldn’t but it does hurt Nick pretty consistently. The epidural removal however was nothing this time. Even the tape pulling wasn’t too bad! That was it’s own little miracle!

Another potential IV issue is the way it feels when certain meds are pushed in. Apparently some people never feel it. Nick always does and some things burn. In fact I will have to finish this post later cause it’s iv antibiotic time and it’s feeling really cold in Nicks hand. Got to go!

Live From Sinai

So while it was all ok few weeks ago it wasn’t on Monday when I brought Nicholas to see Dr. Standard to check on his leg and arm. As soon as his cast came off Nicholas and I both knew it didn’t look right. And of course the films revealed it wasn’t. I am usually super calm but but I had to go find Dr. Standard. I told him Nicks arm looked wrong and that I was panicking a little. He came in and said he hadn’t seen the films but it could be swollen…

On the leg front there was a bit more of a surprise. I wish I knew how to post a photo from my iPad cause the image was a little freaky. Kind of like rod going one way and bone going another. Stacy the tech who was working with him had trouble finding his knee cap. I could tell it felt funny to her. Maybe Nicks knee is funny but his kneecap was usually not hard to find.

It’s also funny cause Steven said he thought Nicks legs didn’t look even anymore and Nick was walking in a really kicked out way. I thought he was still walking to accommodate the ex fix or phantom ex fix but when we arrived Dr. Standard saw Nick walking and he knew.

All this knowing going around and then the whammy. Surgery would need to be the next day (yesterday) on both his arm and leg. The arm just needed a little push back into place. Not a big deal and not at all uncommon. I asked Dr. Standard what would make it stay in place this time and he said the bone would now be sticky. We are thankful for that stickiness which made it an easy fix.

Nick’s leg was a little trickier. The way Dr.S explained it to us was that he would use a fixator to put the bone back in place and the put a plate on it to keep it there. No fixator after surgery though. Just in surgery. Nick heard pins and for a moment he looked stricken but was relieved that he wouldn’t see anything sticking out of his leg after surgery.

Sudden surgery was a pretty new experience for us. Part of me was really expecting an awesome report, a short waterproof cast, maybe an Rx for physical therapy to help his walking! But I have been feeling uneasy and worried and just that general something’s going to happen feeling. So I am not totally surprised.

Helping Nicholas not be depressed by this was my first priority. He was already feeling quite unlucky to have broken his arm so soon after leg surgery. I asked him “what are we?” he said “strong” and I said “brave”. Then I asked “what do we do when we’re scared?” and he said “what’s right” and I said “we do it anyway and we make the most of it”. And that’s what we did.

Making the most of it meant enjoying our Mommy/Nick time together. We went shopping, to dinner and stayed at the Raddison. We brought dessert back to our room and watched movies. We got snacks from the vending machine at 10pm. We made silly videos and danced and laughed!

We know how to make the most of it and we know how to be brave. Going into surgery Nick was nervous. He was shaking which is not like him so I had to distract him fast. I suggested his surgery dream be a lego star wars one and asked him what his ship would be. That worked like a charm and before I knew it Nick was asleep and I was on my way back to waiting area.

On the way a man approached me (clearly thinking I worked at Sinai) asked me where the cardiac waiting area was. I told him I didn’t know. It was a funny little moment that broke some of the tension I had building. Going back to the waiting room knowing Steven wasn’t there was hard. Still I did my usual stuff, got coffee and a magazine and waited. Nurse Harriet came out to talk to me twice. The first time to tell me things were going well but taking longer than planned and the second time to say they were about done and Dr. Standard would be out to talk to me soon.

When Dr. S cam out he said everything went great. Arm went right into place and his leg was back on track. Maybe straighter than before. Back on track and great are really all I heard. I was just so relieved. I suppose when things go wrong it makes me wonder if things will keep going wrong. You really can’t take anything for granted so I was preparing myself to hear that he lost length or had some complications but there weren’t any.

Nick is currently as comfortable as a kid who had surgery yesterday and still has lots of wires attached to him can be. Steven came late last night which was just a relief. Even when things are going fine it still helps and I was able to sleep more than if Nick and I were alone.

Last week there was a crazy thread on one of the Fibular Hemimelia facebook groups and some things were upsetting to me. One person who chose amputation for thier child wrote that one thing that influenced their choice was that a doctor said “Kids who have lengthening are patients and kids who have amputations are athletes”. I wrote a long and thoughtful response to that one. I would love to get that doctors name and post it all over so families who want an unbiased and actual fact based assessment can avoid him/her.

Anyway one of the things I wrote was that “the easy ship sailed when Nicholas was born with Fibular Hemimelia”. Maybe the easy ship sailed for me when I became a Mom. If anyone is looking or an easy solution or to make life easier for their child they need to get a clue. FH or no FH life is life and so very much of it is out of our control. Maybe that idiotic doctor should ask the family whose child has had 13 surgeries despite the fact that they chose amputation how he would assess their child. What category would he be placed in? Or check out the kids who have had lengthening and ARE athletes!

Today Nick is a patient. I am hoping he will not be for a few years but I can accept that that is out of our control. I have faith that if something happens to Nick’s leg or any other bone Dr.Standard will be able to fix it. I know that being a patient from time to time is not destroying my boy. He’s a happy, healthy, compassionate and brave kid! I think that trumps athlete any day!

A Regular Kid Break

Nick did something sort of normal yesterday. He broke his arm. He slipped and landed on his hand just right. This could be a long post but I am going to try to be brief. Poor kid broke it well enough to need to be sedated to have it fixed. He handled it all so well the doc’s and nurses were complimenting him left and right. No surprise really. When they cut the cast open (in case of swelling) he was not scared of the cast saw. He told the doctor it was all familiar to him and when the doc said he was the best kid he’d had Nick said “Thanks for the compliment”. Oh my sweet boy was brave and sweet ofcourse. He even thanked me for being there with him! As if I could ever be anywhere else!

I was as calm as I could possibly be and today I am exhausted. It takes a lot of energy to keep it together when you want to scream. My boy just got his fixator off June 22nd. To have a flipping cast right now is awful. I am praying for a waterproof cast when this one comes off. Nick needs to swim and enjoy summer so badly. He had been having a great day at camp and playing with his new pal Conner. Really things were looking up. Nick was being a regular kid and I guess that’s how he did a regular kid thing and broke his arm. I am grateful that he has friends and is having fun. But really I would have rather he have a regular summer break than a regular arm break!

I so wish it hadn’t happened. I wish I could take this away and let him have the rest of his summer fee. I am getting my sad out here so when Nick wakes up from his long nap I am happy cheerleader mom again! This just stinks! I know it could be worse and I know it’s not the end of the world but it stinks! Well it sucks really! We brought that word back in the ER last night. This SUCKS! At least when I said it Nicholas smiled.

PS we are going to Baltimore tomorrow so Dr. Standard can check it out. Nick broke both bones and is still in pain and really I think I will finally be able to exhale when Dr. S says its all ok.

Summers of Surgeries

Some days I really can’t be positive. So I keep quiet. It was a rainy day anyway. No need to venture out into the world which is good because I happen to be pretty annoyed at the world. I am just tired of Nick’s summers being so surgery filled. Last year on June 17th (his baby sisters first birthday) it was the knee. This year on June 22nd (my birthday) it will be fixator removal. I could add previous surgeries to this list but you get the picture.

As much as this is a surgery to be celebrated it is hard because we have no idea how he will feel after it. He might now want to walk for a while. The rod could cause him pain. Who knows! I just want Nick to be able to relax and just be a kid for a while. A really long while!

I also sometimes realize how much it impacts the other kids. We wont be going to amusement parks until Nick can go on rides. Would it be more fair to take the other kids and leave Nick behind? I don’t think so. Is it the end of the world not to go to amusement parks? No but when I think of how few times we really have gone it is kinda sad. There are other things I don’t do because it is hard with 4 kids (and really it’s just hard cause one is in a fixator and one is about to turn 2). The kids also have fifth disease and the rash from it seems to be gone until they are out in the sun and then it is red and itchy for a while after.

I guess we’re home bound and a little stir crazy. I took them to Target yesterday and the best part was that I could get them all in one cart. People found the sight of us quite amusing. Big kids, little kid, baby and stuff all in one cart. I counted pushing it around as a workout for me.

I think the moving factor is changing this summer too. We’re in a kind of limbo and I am tired of it. So really I am just complaining which is a waste of time and energy considering the kids are asleep and I could be asleep. Plus I realize I have much to be grateful for. I just wish this summer was easier for my boy and I guess the rest of us too.

The home stretch… I hope!

So this should be the home stretch. Nick had an appointment with Dr.Standard Thursday and the smile on Dr.Standards face while looking at Nick’s leg really says it all! His right leg seems to be about 1cm longer than his left! This was unplanned and unexpected. It also made the news that Nick’s bone is not consolidating as well as we would like much easier to take. There’s really nothing wrong. It’s not really been that long but we still hoped for more.

The fixator could come off next month as planned but Nick would need a rod put in his bone to protect it. I’ve heard this is often painless and no big deal but sometimes it can lead to painful setbacks. As in the past I am inclined to let Nicholas decide what to do. His options being 1) take off the exfix and have rod inserted or 2) leave the exfix on another month or so and then hope he won’t need rod at removal or 3) just wait till the bone completely consolidates.

So far my boy has chosen option one. He’s seemed a little down lately and I think loosing this hunk of metal would help! He also still has pain in his foot when he walks, which the weight of the fixator could be contributing to. His new shoe insert helped with the pain in the bottom of his foot but now his heal hurts because it makes his shoe a little too small! I’d really like this insert to work out! Nick needs to walk pain free! And considering it was over $400 and not covered by insurance it would be a pretty penny to have spent!

On the home front the specifics of our move are still not settled and Steven is obviously still traveling and I’ve been unraveling just a little bit. I think I jinxed myself with my mental health post. I’ve gone back to therapy and even just one session was helpful. I needed to hear that all my stress and feeling’s about surgery/moving were ok. Why do I need professional to tell me this I do not know. Maybe it is too darn hard to admit to those I’m closest to that I am struggling (well some of you know and now anyone who bothers to read this knows). I often think I should be able to handle this or I just don’t want to ask for help. I hate asking for help. Maybe that’s reason alone to go to therapy.

So right now I am doing my best to simplify and say no to anything that will add stress or items to my to do list that are not necessary. The definition of necessary at the moment is “what my family needs” and of course friends if they are in crisis. Otherwise I am not available.

I’ve even taken a Facebook hiatus. I have Steven checking in on Fibula Hemimelia and Limb Lengthening Awareness. I feel a sense of responsibility for the group I created and I want to make sure folks are getting what they need. The group has over 540 members! Its awesome and seems to really be helping families connect and face the future.

My tenure as board president of our church is ending just in time and I’ve not been called in to the nursing home, where I am a companion for dying folks, in a while. I’ll hate to say no to that if they call but the times I go are usually at night and I need to sleep more! Plus there are others in the program they can call on. I am so grateful for the time I’ve spent as a companion. I hope to find similar volunteer opportunities in Delaware.

So while much of our future is unknown I am comforted by many things, including the cute little boy next to me who needs me to help him play Mario vs. Donkey Kong on his Nintendo DS. Time to get to what’s necessary!

Amputation Versus Lengthening Again

Lives of great men all remind us
We can make our lives sublime,
And, departing, leave behind us
Footprints on the sands of time;
Footprints, that perhaps another,
Sailing o’er life’s solemn main,
A forlorn and shipwrecked brother,
Seeing, shall take heart again.
Let us, then, be up and doing,
With a heart for any fate;
Still achieving, still pursuing,
Learn to labor and to wait.

A Psalm of Life has struck me today as pure brilliance. In that Oprah ah-ha moment sort of way! I guess I always like a footprints image. Maybe because of Nicholas’s unique foot prints. I do like to imagine that others will have an easier time on this particularly unique road through fibular hemimelia becaus we have shared and left our footprints behind.

There’s a conversation on the Facebook Fibular Hemimelia and Limb Lengthening Awareness page that’s taken on a life of it’s own. It’s the amputation versus lengthening question. It’s awful to read some comments which are neither personal experience nor fact based but it is what it is.

What it really is, is a very emotional question. When you have doctors tell you that there is no right choice, it really does not make the decision easier. I’ve said before that this is a choice parents should never have to make. To keep or amputate their childs limb. Never mind that there are likely doctors strongly advocating one option or the other. While they say it’s your choice.

Really, what happened to “there’s no right choice”? Of course a doctor is likely to think the treatment they are familiar with is better. First of all its what they can do. Secondly they have seen their patients thrive. They’ve watched the two year old with her first prosthetic leg taking her first steps or the two year old after her first super ankle surgery and lengthening doing much of the same. Really as hard as it is to believe kids really will be ok either way. They will find their way, accept their difference and live their lives. Thank god for that! It’s not easy but children are amazingly adaptable.

Still there will be moments when as a parent you will have to explain your choice. “You were born this way” or “God made you this way” will only fly for so long. One day you will have to face your child and say “We chose this for you because…”. You will owe them the truth. You can’t make a choice like this about another persons body and not explain it. I’ve had this conversation with Nicholas. He knows that amputation was the alternative. So far he feels we made the right choice. Had we chose amputation would he feel the same way? I think so and hope so.

Once you make the choice you have to make it right for your child. I am sure most people do just that. But we all then become attached to our choice. It’s impossible not to get defensive when I feel someone is suggesting parents who choose lengthening are choosing hell or torture. I try not to. Sadly reading that a child with an over 20cm difference, needing multiple ankle surgeries, and a super knee and an eight plate, who has two toes, etc… reading that this child, my child, could be doing great makes people who chose amputation for a similar or lesser level of deformity get defensive. I get it. Doctors told them it wasn’t possible. But it is.

Just because it’s possible does not mean I think parents who choose amputation are making the wrong choice. Just don’t come to a support group and say lengthening is not an option in such a case. If you were told it wasn’t an option for your child say that share your family’s story. Maybe your footprints will help someone else take heart again!

Back to School?

Yesterday I asked Nicholas if he felt ready to go back to school. His response didn’t surprise me much “Yeah Mom I’ve only been waiting for you to ask me”. I’ve made an appointment for him to get fitted for his shoe insert on Thursday and I think Friday he’ll go back.

Nick is ready. I am not. I am so happy having him at home. Aside from it being hard to get out and about. I suppose I will be able to get more done during the day. Still I will worry! To be honest Nicks at home instruction experience has been one of the reasons I have decided to homeschool, or at least to try it for a year. It sounded a little crazy to me at first. Even felt crazy to be considering it but the more I research the more I want to do it. I don’t think public school is evil or anything. I do think it’s an awfully long day considering Nick could learn everything he needed in an hour or less. It’s just not the only way to learn. Once you start thinking outside the box it’s hard to get back in!

I would also love for my kids to have some choice in what they learn. I would love to have more time with them. Being gone seven hours a day five days a week changes things. I am often sad that Charlotte is in school while the rest of us are at home together. I know it suits many people just fine but it’s never sat well with me. I never look forward to the end of summer. I don’t think it’s as easy as people say it is to have your kids in school. I know I have taught them many things, I fell confident we can learn together. I know I will have to work hard and be disciplined. I believe it’s worth it.

This is not to say that I don’t love and respect teachers. I know what they do is takes it’s own skill and education. It’s just not the only way to learn. I don’t compare myself to teachers at all. My kids have had amazing teachers. Really! I have loved them. Nicholas’s current teacher has literally been perfect. She was the turning point when Nick came home from surgery and wasn’t himself. She makes schoolwork fun. She is a beautiful, smart and kind person. All you could ever ask for.

Sadly she and many other teachers in our district are either loosing their jobs or being shifted around. Like many areas, central PA schools are suffering financially. My children have a wonderful school. I respect the principal and pretty much all the staff I have encountered. They have all been kind and helpful in handling Nicholas’s surgeries and anything that has come up. But with these cuts I know the school will suffer. They will be loosing some amazing educators. How could the school not suffer?

Many experts say our education system is broken. I’m not going to worry about quoting anyone here. You can google yourself. When my husband and I tell people we’ll be homeschooling the only real argument against it we get is “what about socialization?”. If socialization is the best thing a kid can get from public school there’s more wrong than I thought.

All I know is it feels right to us. We’re moving to an area of Delaware with so many amazing homeschooler activities and groups. There’s a coop, there are weekly playground dates, monthly roller skating, and many other group classes and activities. We’ve received invites to a beach day, canoeing classes, a family farm day and more. We won’t be sitting at home reading textbooks. We’ll be living and learning together and in community with others. There’s even a yoga and meditation class this month for 6-9 year olds! In addition to a class at the Apple store on Garage Band. I wish we were there already to take these! Really there are so many different things. I am sure we won’t be able to do everything because of time and/or money but there are options.

So hopefully Friday Nick will go back to school. At least for a few weeks. School here ends in the beginning of June. He’ll likely have his fixator till after the end of school which could work out since removal would have been more missed school!

I am so nervous but if he feels ready I have to be ready to. When we told Charlotte she hugged him so hard she could have knocked him over! Still as happy as she is going to be is comparable to how sad Christopher will be when his big bro is gone all day. He and I can comfort each other!