Marathon Day!

Well, I did it, and it was HARD!

On Saturday my brother came over to help out with finishing our fence and to play with Constantine.  My mom took Aurelia for a sleepover at her house so that I could have a good night sleep before the marathon.  Dom slept in C's room because if I hear him wake up at all then I wake up.  This way I was able to close the door and  turn the fan on and actually have one of the best sleeps that I have had in a long time.  I woke up in the morning and got all ready to be in Manchester to meet my dad at 7:15.  It was great because of the time change it wasn't actually that early.  I sort of forced myself to have a little bit of coffee because I was already pretty jumpy in anticipation of the run, but I didn't want to regret not having coffee later.  I don't know if that was what affected me a couple months ago, but I didn't want to chance it!

I got to Elm St. and got all ready to run with four layers of shirts on since it was freezing out, and I am a huge wimp in the cold!  My dad and father-in-law were there to see me off at the starting line, which was nice.  I was so cold when I first started.  My eyes were watering and my nose was running, it wasn't pretty.  I just kept thinking that the more I run the warmer I'll get.  Eventually I did warm up a little, maybe around mile 3.  I felt really good running though.  I had a lot of energy and my body felt good.  Thanks to the coffee I did have to pee pretty much from the beginning.  I was so happy to see a porta-potty at mile 3.  After that I felt much better and was ready for the long haul.

Aside from still being cold, although not like in the beginning, I was feeling great for the first 13 miles.  I was happy to see my mother and brother-in-law along the way rooting me on and taking pictures.  Constantine's service care coordinator, Beth, found me at around mile 6 on her bike and stuck it out with me until the finish line.  She has run a marathon before and knows how hard they are so she wanted to support me.  I give her a lot of credit too since she was out there for so long in the cold riding her bike!

I was coming up on mile 13 which looped back to Elm St. again when my foot started to hurt.  There is this huge down hill that brings you to Elm St. and going down that hill did something to my foot.  I have been having some pain in the arch of my foot for a little while when I walk around the house, but when I am running it never hurts.  Going down that hill made that same pain hit hard.  The good thing was that when I was running up hill or flat it wasn't as bad.  From that point on I still felt pretty good, but I was definitely favoring that part of my foot.

The next part of the course was luckily mostly flat and up hill so I was doing pretty well.  I was the first woman to pass all the aid stations so everyone was cheering me on.  In truth I was undeserving of all the praise because I did the early start, but it still gave me some added umph.  I think around mile 17 is when the first woman passed me, well she flew by me like all the real racers.  I was pretty amazed that they could be going so fast!  At mile 20 I was definitely wondering if I could make it.  My foot was really hurting and I was compensating for that with the outside of my foot and my other hip which were starting to hurt as well.  There was one huge down hill that I had to walk down and watch everybody else fly by me enjoying the "easy" part.  Once I got to the bottom I started running again and when I got to mile 22 I knew I could do it.

My brother and Dom met me at about mile 24 and finished the run with me.  That was a big help because it kept my mind off the last couple of twisty miles that lead to the finish line.  When we got to Hanover St.  my family was waiting there with Aurelia and Constantine.  I gave Aurelia a big kiss then got Constantine, who had a big flag saying Fight SMA on his chair, and we all ran to the finish line together.  YAY, I did it!  I couldn't walk at all.  It was great to see my family and Beth there supporting me.  We took some pictures and talked a bit, but the mommy part of me kind of freaked out and wanted to get my kids out of the cold, so we packed up and went home.  I was still in the four layers that I started the race in, I was cold too!



I am really happy with all the great things that came out of doing this marathon for Constantine.  I wanted to raise funds for FSMA and Constantine's medical fund as well as raise awareness for SMA.  The total right now that was raised is $2187 for both FSMA and his fund.  We were also in three different papers each with a unique take on our story and all raising awareness for SMA and how it affects our family.  AWESOME.  I couldn't be more pleased!  We have had some incredibly nice people take an interest in our family and offer to help us out, which is above and beyond anything I could have hoped for.  Thank you so much to everyone for taking an interest in our story and for helping to find a cure for this horrible genetic disease, Spinal Muscular Atrophy.  Hopefully in the (near?) future we will have a treatment!
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Another Article!

Here is great article from the Manchester Union Leader about us!!!  There wasn't a link online so I just copied it here.


Motivated by a cause:
Luciante Salce is raising money to fight spinal muscular atrophy.
By MELANIE PLENDA
Sunday News Correspondent


HILLSBOROUGH — Constantine Salce watches his sister, Aurelia, twirl and spin in front of his chair. The toddler dances and hurls herself into wild shapes and contortions with an abandon to be envied.
But Constantine, 3, doesn’t envy her.
Afflicted with spinal muscle atrophy, Constantine can’t, and may never, do what Aurelia does. He can only sit in his chair and watch. Yet without a hint of jealousy, he laughs from deep in his belly, enjoying all his sister can do.
“He’s just such a happy, chill guy,” Luciante Salce, the children’s mother, says of her son. “Aurelia dances for him, and she does things he can’t do, and it just makes him laugh and laugh. She moves around enough for the both of them.”
Constantine can’t use his legs, but Luciante can, and she doesn’t take that for granted. Instead, she has trained for months in advance of Sunday’s Manchester City Marathon, hoping to draw attention and funds to an often misunderstood disease.
The Spinal Muscular Atrophy Foundation defines SMA as a “rare, inherited disease characterized by muscle atrophy and loss of motor function, caused by the absence of or defect in the Survival Motor Neuron 1 (SMN1) gene.”
The neurons or cells associated with the gene are critical carriers of electrical and chemical messages to the muscle cells, affecting swallowing, breathing and movement in the limbs. If the neurons don’t work properly, the muscle cells don’t work properly. This causes the muscle cells to become smaller, degenerate and eventually die.
It is estimated the rate of spinal muscular atrophy births is between 1 in 6,000 and 1 in 20,000.
Luciante said Constantine appeared fine when he was born.
“He ate like crazy and was just a really content, really happy baby,” she said.
“I didn’t really notice that he didn’t use his legs very much. He was my first child, so I didn’t really know exactly what was normal.”
When Constantine was about 6 months old, Luciante’s mother pointed out that the boy didn’t use his legs much. A slow, burning panic crept into the back of Luciante’s brain. It wasn’t one big thing that suddenly signaled something was wrong, she recalls, but a million subtle things. As she did research online, she kept seeing SMA come up, but she hoped for the best.
“I would be running at the gym, going back and forth between, ‘He’s fine; he’s just slower than usual; kids go at their own pace’ and being freaked out,” she said.
Luciante and her husband, Dominic, took their son to the doctor, who in turn referred the couple to a neurologist. It took a month to get the results.
“That month was actually harder than actually finding out what was wrong,” she said.
During that time, the Salces learned Luciante was pregnant again. A week later, the neurologist told them their son had a disease with no treatment, no known cure and a grim prognosis.
“He told us (Constantine) probably wouldn’t make it to his second birthday,” Luciante said. “We cried for a day. But then we were, like, ‘OK, he has this.
Now what are we going to do about it?’ That was really the turning point for us.”
Since the diagnosis, the couple has learned to adjust their lives to meet Constantine’s needs. Luciante stays home with him full time. They’ve also discovered treatment techniques to keep Constantine healthy and help prolong his life, which — because he has Type 2 SMA — is expected to be as long as 25 years. The family works with him daily, doing his physical therapy, clearing his lungs and taking him for checkups in Boston.
Luciante said even Aurelia gets involved, helping to push her brother in his chair, picking up his head when he can’t do it himself, or just quietly occupying herself so her mom can take care of Constantine.
With one less salary coming in and regular doctor bills that insurance can’t cover, Luciante said, money is definitely tight. But she doesn’t waste time dwelling on that.
“They are very independent people who never ask for anything from anybody,” said Beth Allen, who works with the family through the Department of Health and Human Services. “I just think it’s amazing and remarkable how the whole family has transformed the situation into a positive. ... They just keep going and do what needs to be done.”
Luciante said that since the diagnosis, the family has also become dedicated to helping find a cure for SMA. Last year, she and a friend held a spin-a-thon at Keene State College. This year, she decided to let her own feet do the work.
A longtime runner, she’s stepped up her training by following an online regimen in preparation to run Manchester City’s 26.2 miles.
“The kind of people they are, I’m sure it’s not easy for them to put themselves and their story out in the public eye like this,” Allen said. “But their goal is to get help for their son and for the bigger cause. And I’m sure they are exhausted most of the time. But they continue to get up every day, do what needs to be done. . . . They are such role models.”
Although it meant coordinating schedules with her husband, who works nights as a corrections officer, Luciante stuck with her training program. She also started a weekly blog to let supporters know she was working hard for their donations.
“They are so close — so, so close to finding a treatment; all they need is the funding to do it,” she said. “I mean, finding a treatment would be huge — not only for us, but for all the families going through this.”
But first and foremost, she’s running for Constantine. “He doesn’t have this huge, long life where there’s time to wait for a cure,” Luciante said. “My hope is that they find it within the next few years so he will be able to really grow up and enjoy his life.”


For more information on how to donate to Constantine’s treatment and on finding a cure for SMA, visit Luciante Salce’s blog at http://constantinescure.blogspot.com.

One Week To Go!!

Wow, I can't believe the marathon is on Sunday!  I feel like I have been training forever and it almost feels weird to be running less.  This week's long run was only 8 miles as I taper down before the big day.  This last week of running is very light as well, which is great, but for some reason it feels like slacking.

This is the first week, I think, that it wasn't beautiful out for my long run.  It was a really grey, chilly, windy, about-to-rain sort of day and it was hard for me to get motivated to run.  We met with Pepere and Oma in Concord and got some stuff for Halloween.  Pepere and Oma took the kids to the Audubon Society where they saw an owl and hawk.  Apparently the best part for Constantine was seeing the owl poop, he thought that was pretty funny!  Anyway, when we got home I just wanted to hang out with the family, but I made myself go since it was only 8 miles and I am so close to finishing this challenge.  It actually did start to rain shortly after I started running and I wanted to go home with my good excuse, but I kept going.  The rain stopped after just a little bit and I ended up having a really good run.

The next day was Halloween and we went out to the middle school in town where there were local businesses  set up inside.  This was awesome since it was really cold outside.  Constantine wanted to be Thomas (Of course!) and his costume turned out great in his chair.  Dom made his own costume and dressed up as Thomas' engineer.  Aurelia was a little horse.  She was actually scared of her costume for a while so I was happy to see her put it on and wear it so easily on Halloween.  I went as a cowgirl with my horse.  We went to the middle school then C wanted to trick-or-treat more so we went to the surrounding area for a little while.  He really loved it so it was hard to stop, but it was so cold and late for them to be out.  Last Halloween Constantine was in the hospital, so this was 100 times better than that.

November will mark a year of no hospitalizations for Constantine.  I thought that was going to be our life, going in and out of the hospital, but this has been a great year.  Our whole life is based around keeping our kids healthy and keeping him out of the hospital and I feel like we must be doing something right.  I know I tend to focus on the fun things in our life when I write this blog, I do that because that is what I do in life and that is what gets me through.  This is not easy, it's hard and scary, but we make the very best of it.  We are also very lucky because there are so many families of kids with SMA who have it much worse than us, have kids just as bright as Constantine who are unable to speak for lack of muscle tone.  I hope that my doing this has helped raise some awareness about SMA and hopefully some money to help find a CURE!

I have received donations in the form of checks and cash as well as on the Firstgiving site.  There have also been donations made to Constantine's medical fund.  After the marathon I'll post the total amount that I raised, so don't just go by the bubble thing on the side because that doesn't take everything into account!  Thank you so much for your donations, this money really will bring us closer to a cure!  Thanks for reading our story too, the next time I post I will be a marathoner!!!  Wish me luck!

12 Miles, 2 Weeks To Go!

This was a good week for running because I was able to get in all the miles that I was supposed to and felt pretty good.  The miles are decreasing in preparation for the marathon, which is in TWO weeks.  My long run on Saturday was 12 miles and next week it's only 8, yay!  I feel pretty ready to do this, but still a little nervous.  When I ran the 20 miles in Manchester my feet felt fine, but when I did the 12 miles this week here in Hillsborough they really hurt again.  I think that is what I am most worried about.  I don't usually live by this philosophy, but I will probably bring some Ibuprofen so my feet don't hurt so much during the marathon.  I have worked too hard to have my feet stop me!  I'll just give them some special attention after, maybe a nice soak.

My 12 mile long run went pretty well.  I must be a little more fatigued than last week because I was more tired and sore than after the 20 mile run (not horribly bad though), and my feet hurt.  It is getting more chilly out now, which at first I thought was great to get rid of the heat and humidity, but now I'm not so sure I like it.  Once I get running it's nice, but to get motivated to go for a long run is really hard.  When it's cold out I like to hibernate inside where it's warm and cozy.  I am always glad once I get out there, but it is definitely a challenge to get started.  When I went out for the long run it was really windy and I wanted to turn around and go home, but after a mile I was warmed up and was able to enjoy the day...because really it was (haha, again) a beautiful day...just cold.

It isn't even that cold yet, I am just a big wimp when it comes to cold.  I'll complain some more...Now that it is cold it takes forever to go outside with the kids.  Gone are the days of heading outside whenever we felt like it, walking to the beach with hardly anything on.  Now we have to put on layers and socks and shoes and hats etc. just to go outside.  It takes a lot of motivation on my part, since again, I don't like the cold...but I DO like to be outside.  The real bummer is that when we are so bundled up it is hard for Constantine to play using his arms.  It adds a lot of weight to his arms which makes it a lot harder to move them to play, even on his tray.  We are looking into options for clothes that are warm, lightweight, and thin to make it easier to play outside with out getting cold (or getting sick!).

 

C doing his famous art.  See it at angleboyart.org :)

Aurelia gardening

We had a pretty low key weekend just playing staying close to home.  We had a nice visit from Memere and Uncle TJ and did "projects", which C is really into now since we have been going to the library and doing craft projects there.  We made a really cute felt birdhouse with lots of details which C directed and glued.  He is a guy who knows what he wants and luckily good at telling us what that is.  We actually had our meeting with the school this past week to go over results of their testing they did on him to determine his eligibility for pre-school.  Like we sort of expected, he tested above average in his expressive and receptive language.  Little smarty.  He tested average for how he speaks, which is great because SMA can affect how he talks, but right now he is right on target.  Everyone at the school seems really excited to have him and are really going above and beyond getting everything ready for him to fit right in.  It makes me more excited and relaxed to have him go to school knowing that it will be such a great experience with people who really want what is best for him (health wise, socially, and academically).  Only one more month till school!.......
   And TWO weeks till marathon day!!

Two Awesome Newspaper Articles!

Click on the links below to view two articles that were written about us.

http://www.server-jbmultimedia.net/VillagerNewspaper/sitebase/index.aspx?area=doublepage&adgroupid=192994&pagenumber=1&view=double&FH=635

http://www.concordmonitor.com/article/221402/happiness-and-sadness

Both articles came out really well!  One thing I will say is that Constantine IS able to sit by himself and is very proud of that,  but otherwise great articles!

14 Miles, 20 Miles, and a Wedding!

This post will cover the past two weeks since I couldn't find the time to write last week.  Well, it's not really that I didn't have ANY time, but at night when the kids went to sleep I was too sleepy to write.  My week of running wasn't too exciting anyway.  I did a 14 mile long run and again it was a perfect fall day.  I did a part of my hilly hills run and included some roads that I had never been on before.  It was a great run.  There was one hill that was HUGE.  I usually don't mind running up hills, but this was just so long and steep...kind of more like running up a mountain.  I am so glad that I've been training on all these hills though.  I missed some miles in the middle of the week again.  It is getting harder to do all the miles, not physically harder, just finding the time to do it.  When it is 3-5 miles I can squeeze it in easily, but now that it is up to 9-10  miles on a Wednesday and Dom has to go in for overtime so I can't always do it.

  

We had a really fun fall weekend though with the family.  We went apple picking at a beautiful farm north of Concord.  They had goats, horses and chickens and platform to enjoy the amazing view.  Aurelia was very happy holding and eating two little apples she picked and Constantine enjoyed some licks off my apple (he is so easily pleased).  We also went to the pumpkin festival in Milford with Pepere and Oma.  They got to see the pumpkin launch into the river, which C loved.  They got balloons and saw the fire truck and just enjoyed all the people and activities.  We also carved our pumpkin and painted pumpkins and made applesauce, which Constantine could actually eat a little bit of.

This past week I switched up my running schedule so I wouldn't have to run over the weekend.  I did 5 miles on Tuesday then did my 20 MILES on Thursday.  Constantine has his feeding and swallowing appointment and aqua-therapy in Manchester on Thursday mornings so we all went in to Manchester and Dom took the kids to his appointments while I did my run on the marathon route.  I feel a little redundant saying this, but it was again a great day for a run.  My hilly hills training definitely paid off because, while Manchester is definitely hilly, Hillsborough is more so.  The run was challenging, but I felt awesome when I was done.  It was almost weird how good I felt.  Maybe I expected to be much worse off, but even my feet felt okay.  I was a little frustrated because there was a bridge that was closed to pedestrians and I waited for a little bit to cross on the shuttle bus to finish the marathon route, but instead I stretched out while waiting then decided to do the remaining miles by backtracking the route.  When I was done Dom and the kids met me and we went to the mall to get my dress and shoes for the wedding (and of course to see the animals in the pet store).

Now the wedding stuff!  On Friday Pepere and Oma came over to hang out with Constantine for the weekend.  My mom (Memere) came over to pick up Aurelia to take her to Vermont for the weekend.  I am so thankful to them for watching them and making me feel comfortable leaving for so long.  My dad has been learning the ins and outs of caring for Constantine for months now.  Every week he comes over to go through the routine of his care so he was prepared to do it without me there.  I'm sure it was a challenge to wake up during the night to turn him over.  I know they both had a great time which allowed Dom and I to have a great 5 year anniversary/ wedding weekend away. Bryan and Alyssa, whose wedding we went to were so kind to make a donation to Constantine's medical fund in honor of their guests instead of wedding favors.  We are so thankful to them for that!!  It was a great weekend.

Us with the bride at the rehearsal dinner

The Adventures of Fizz the Fish!!!

Here is C's room.  You can see Fizz by the bed :)

I am so excited about this!!  My sister-in-law came up with this great idea to make a book together to benefit Constantine and SMA research.  I wrote the story about our Chinese Fighting Fish, Fizz.  At night while we are doing Constantine's routine before bedtime we make up stories about Fizz escaping and doing crazy things then coming back to his house.  Fizz lives in a tank on a shelf right next to where Constantine sleeps so he gets to watch him as he goes to bed.  We have made up many stories about Fizz including one Dom made up where Fizz goes down the toilet and explores the water treatment facility.  I chose to write a big adventure where he goes to see all the things that Constantine loves.  I thought it would be fun to read to him because he always gets excited when he sees things like tractors and trains in books.  It worked because he does LOVE it!

Kim did such an amazing job illustrating and getting it together on blurb.com.  I am so thankful to her for thinking of this.  I am not very creative in general so it feels pretty cool to have my name on something so wonderful.  I hope everyone else likes it too and hopefully it will raise some money for Constantine and SMA research.  There is a link to the book to the right where you can preview the whole book. Let me know what you think and tell your friends and family about it!