New Challenges (not for Nick – he’s great)

A few weeks ago Steven’s job security began to come into question. His company is contracted with other companies which are directly linked to the government. Need I say more?

We decided it was time for me to reenter the work force. We believed that even if my husband kept his job, this economy is just to volatile to be totally dependent on one income. The possibility of no income is too much to stomach.

Now it has come to pass that Steven’s job will be ending. We have a few months to get jobs but it does not feel like much time. With four children there is just no way to avoid this stress. I know we’re not much different than other folks faced with these circumstances. We’re not a unique story in this economy. Yet there is an added pressure with regard to health insurance because… I’m sure if your reading this you already know. Fibular Hemimelia.

Finding benefits that will let us take Nicholas to Dr. Standard is hugely important. I’ve been told about the CHIP program in PA for uninsured kids but I have to find out if they will cover Sinai. Many state plans will not let you go out of state! I’m hoping that next year we won’t have to fundraise for Nicks surgeries instead of save a limb! I will do anything I have to so that he can keep seeing Dr. Standard but first and foremost is finding a job with benefits!

Maybe I’m over focused on Nicholas. Maybe there are bigger financial questions but right now it’s where I’m at. It’s my greatest fear. We made choices so that I could be a stay at home mom and be there for him for his surgeries and so we could get Nick to Baltimore and I guess it is a sad reality that some choices get taken away.

I know I’ve been so fortunate to be able to stay home with my kids for the last six years! I wouldn’t change a thing about it. I also know that there are options for childcare around here and as long as the kids are well cared for I could really like working. It has been a while but being president of the board of directors of church and trying to be there for ‘fibula families’ and volunteering with the dying have all helped me remember that there are many things I am good at and like to do. I am lucky to have had opportunities to be active in my community and gotten to meet great people doing great things and getting paid for it. Now I just need to be one of them!

If Fibular Hemimlia has taught me anything it’s that Steven and I are a great team! We have the same goal, to do what is best for our family. This has always been our goal. When we had Nicholas and had to make choices that would change the course of his life we tried to do what was best for him. Now we have four little people to consider.

Many people have offered to help already. While there’s not much anyone else can do, the offer, the kindness matters so much. When someone says I’m here for you and means it, wether offering their bottom floor to live on or top of their shoulder to lean on. Because of you I know we’re not alone.

When Nicholas was born I felt very alone. No one around me had a clue what we were facing. We didn’t even know what we were facing. I guess that feeling is similar to this one. Not knowing what’s to come is hard but at least this time I know we are not alone. I hope any parents reading this, holding your baby and wondering what will be, know that you are not alone either. There is so much support now compared to 8 years ago.

The challenges our family is now facing may give me something more to share. Navigating insurance and paying for Nick’s surgeries has never been an issue for us before. I hope I can share this new experience so some good can come of this stressful situation. Ok more than anything I hope it will not be an issue! But if it is I’ll be here blogging through it!

lost childhood… frail limb… where do they get this stuff!

There are so many orthopedic doctors out the who say these things to parents of newborn babies with FH… They say that kids who have lengthening don’t have childhoods, they spend their lives in hospitals, their limbs are frail, they’ll be in pain all the time, they’ll have long term sided effects from the pain meds and the icing on the cake… They’ll get an infection and have to have an amputation in the end anyway!

NONE OF IT IS TRUE! How is it ethical to try to scare people into having their child’s limb amputated? And if their not liars then where are all the kids who have had limb legthening and have frail limbs and lost childhoods? Good luck finding them!

Seriously, every child that I have met at the RIAO has been amazing! Yes there are hard moments when going through lengthening and surgeries but our children have just as much joy as any other child! Every life has hardship but I would argue that my son is still extrememly fortunate compared to most children in the world. His childhood is intact and his leg is strong!

Nick’s had no long term side effects from pain meds (he was never on them long term) or infections, no psychological trauma from the 10 or so days he has spent in the hospital in the last 8 years! Fibular Hemimelia is part of Nick’s life. It is not who he is. It’s not an everyday issue.

Look my kid is awesome! Really he is. I received the most wonderful email from his teacher therefor I have official documentation of his awesomeness. She basically said he is always doing what he should, if he’s not doing his work he’s helping others or offering to help his teachers! He is a joy to teach.

Nicholas is special because he is himself and accepts himself. He is a confident kid and honestly more so than many kids I know. To say I am proud would be an understatement. Can you see though why I am so angry that doctors tell parents such ridiculous things about kids who have limb lengthening! RIAO kids disprove it all!

Shoe lift my spirits!

This week I brought Nick and his new shoes to Archies in Kulpmont PA to get a lift put on. The last lift we got him was well over $100 and falling apart! We also waited over 2 weeks for it to be ready! This life will be between $15 and $17 and ready by the end of the week. It was a little far to get to but so worth it!

The shoe maker also said that he could make the lift better! Seeing Nick walking in his old one he knew right away what he needed to do. He was so kind and quick. I don’t know if they take mail orders but it could be worth it to find out. Years ago they did a lift for Nick, he was maybe 2 and post first fixator. It was great but we kind of forgot about the place. We’d had a wonderful and inexpensive shoemaker in Sunbury PA who was just gone one day. That was a very sad discovery. Nick still asks about him!

Now we wait for it to be ready. We might just get Nick an 2nd pair of shoes for the first time in a long time!

Teasing

I can’t sleep. Something is on my mind and I am thinking if it is keeping me up I ought to do something about it but there’s nothing to be done at 11:50pm! Except blog.

Nicholas was teased about his leg today. The specifics don’t matter and the child denied it but being in earshot and clear view I saw and heard and it sounded and looked like teasing to me (there was gesturing). I interrupted an argument that followed between Nicholas and the child about wether or not it was teasing by telling Nicholas that if his feelings felt hurt he should say so, which he did. I did no accusing or questioning but I thought even if it had not been teasing if he felt hurt an apology was in order. That did not happen and the child simply walked away.

Nick and I talked a bit after that about kids and their comments and questions and he mentioned how his friend Zachary sometimes helps him answer questions about his shoe lift and such. He said that that is helping and not teasing at all. That is exactly what I wanted for Nicholas and what I want for every child, friends who will stand with them and accept them.

Nicholas said the child was being mean and he felt hurt but he speedily moved on so I tried to as well. I am grateful I was there to help and talk to Nick and I am grateful that it did not destroy him and he was not mean in return! It is so important to me to raise kids who are kind. So far I think I have.

So where to go from here… Seek out the parent to talk about it and maybe Nick will get an apology… Let it go since Nick seems to be ok? I worry that if I say nothing it will happen again. I would want to know if the shoe were on the other foot (literally)!

Oh well, nothing to be done at midnight either now that the blogging’s done.

“Did you know I’m part chameleon?”

That’s a question Nicholas has been asking people these days. Apparently chameleons have fused toes like his mommy-Nicholas toe (the two that are together). So obviously he’s part chameleon! How could I not have known that.

Clearly Nick is in a good place right now. He’s been talking about how he likes that his foot is different. There were times in the past when he was really sad that Dr. Standard could not give him more toes but for now that has passed.

I am so proud of my boy! He amazes and so do his 3 younger siblings. I heard that at church on Sunday kids were asking Nick about his leg and Chris told them that Nick had stitches on the inside and the outside of his leg. I guess the stitches have left an impression on Chris. Who knows what other fun stuff Charlotte could share.

Silly stuff aside I think it is great for my kids to have this experience together. Nick knows he has a team behind him. If he’s part chameleon then the rest of us must be too and while we may not all have fused toes we are all pretty good at changing and adapting to what life throws at us. Call us the Curley Chameleons. Is that great a team name or what!

There’s still time to donate to the No Fibula No Problem Save-A-Limb page! Please pass this blog on so that others might be inspired by Nicholas and consider donating. I didnt write a lot on the donation page itself so please share the blog. Plus raising awareness regarding FH would be awesome! Most people have NEVER heard of it. Most orthopedic docs never encounter FH! Your donation need not be big $5 would be so appreciated! If you happen to ave been born with all the bones you need, as most of us have, then you have no idea what these kids go through. If you’ve never had a child born with a birth defect then you have no idea what parents like Steven and I go through but this knowledge is why I fundraise. I would love to make things easier for these children and their parents. I want them all to have access to the care their child needs but that just not reality. Save-A-Limb literally saves limbs! Show your appreciation for the body you were born with and donate to help others who are not so lucky.

Link Donate to No Fibula No Problem

http://savealimbride.kintera.org/faf/search/searchTeamPart.asp?ievent=477952&lis=0&kntae477952=3EA7521B2A4349E7914D7E5429DDE0E9&team=4196374

Most of us are quite fortunate never to seed the specialized care Nicholas receives. Please support those who are not by donating. Nick will be riding again this year and many of us will be walking. The save a limb ride is one of the most special days for our family. We’ve been there every year to show our gratitude to Dr. Standard, Nurse Lee and the whole RIAO team and to pay it forward so more people can have access to the best care in the world!

I don’t hide that one leg is smaller.

Nick began 2nd grade last week. We got him a simpler brace to wear to school thinking both recess and gym probably warrant some extra protection. For a boy without much interest in organized sports he does play hard! Kick ball was big last year and he obviously kicks with his right leg. Thank goodness he had surgery early in summer. He is currently free of limitations.

On the way home from school today he said “Everyone knows me because of my leg. I don’t hide that one leg is smaller than the other. It makes me famous. I am the only kid in my school with Fibular Hemimelia”. Charlotte then told him that he might not be and that there was a kid with a cast on her arm. Nick’s response was something like ‘seriously, that’s not the same at all’. It was a fun conversation mostly between them but of course it made me smile. I do worry though that at some point someone will tell him that he is not famous. We’ll have to deal with that if it happens. For now he’s willing to sign autographs anytime after school… Just kidding!

On a serious note, while we have had some fabulous family support in the fundraising department, we’ve not had much success otherwise. Giving shirts away for donations has not helped. I’ve got a lot if t-shirts! Nick is so into fundraising this year. He understands that some kids don’t have the option of keeping their leg because they dint have insurance or enough money. It probably helps that I took the kids to a rally against needless health insurance cost increases for low income and special needs folks! Nicholas held up a sign about how families need affordable health care. Maybe I wrote about this already but I am so proud that we were there. We were maybe 1/2 the rally but that’s not important. It taught the kids that we need to stand up for others and that we can make a difference.

So please consider donating to the No Fibula No Problem team! I’ll be posting a link. Please share it! Donations don’t have to be big!! Show your support for Nick and all kids with limb differences. It is not easy to be different. Nick has his down moments but they are just moments because he has received such great care at Sinai because we have insurance that covers his surgeries. He gets what he needs physically. We’re better able to support him because we don’t have looming hospital bills!

I am so proud of Nicholas! So lucky to be his mom! My life is beautiful because of him and my soul is stronger because of what we have gone through together. Fibula Hemimelia is his journey but I’m doing my best to be beside him and make sure he has what he needs and has the best chance to live his life how he chooses. I wish all those with limb differences had options! Even if amputation is the best road to take, kids still need access to experienced doctors. Parents need to be able to explore options so they know they’ve made the best informed choice for their child. Donating to save a limb will help that happen and so much more! It’s been a hard year for many but please consider sharing the link and giving a little. Skip the morning latte and save a limb instead!