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!
  `
  
  

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!

18 Miles Then The Farm...Phew!

This week was my 18 mile long run week, which I have been nervous about since I first started training for this marathon.  I was a little worried about doing it since last week I had such a hard time with the 12 miles.  I got lucky again with the weather being a perfect, beautiful fall day with temperatures in the 60's.  We went to Dick's on Friday and bought some gel inserts for my heel since it has been a little bit sore since after the 16 mile run I did a couple of weeks ago.  While we were there I got some gel energy/electrolyte packets that I figured would be easier to carry and eat on my run.  I was all prepared and ready to run.  This time I knew from the get go that I could do it.  I did have my coffee so maybe that helped, even if only mentally!

I decided to do the Hilly Hills run again just because I don't have to drive anywhere to do it.  Weird how I am too lazy to drive somewhere to run, but will do the stupid Hilly Hills run for 18 miles.  This run really is beautiful though, I'll give it that... and I think I'll be glad that I trained here come marathon time.  I had a great run just enjoying the day and time outside.  Dom and the kids met me toward the end of my run to refill my Gatorade and bring some Ibuprofen, but Dom forgot the Ibuprofen part (this came back to haunt me in the last two miles, but at the time I just said "Oh, that's okay").  I think the gel energy/electrolyte thing helped me a lot, but was really GROSS.

I ended up meeting them at the Agway in town where they stayed to paint pumpkins.  I was bummed that I missed doing that, but glad that they got some fun time with just Daddy.  That was at about mile 13.  I ran the 3ish miles back to the house then added on the lake run to make an even 18 miles.  I will tell you that I was in pain.  It's always my feet that go first, although that gel thing really helped my heel because it didn't hurt at all. This is the first run that I thought I might not be able to finish.  It was hard, and even though I really don't want to hurt myself, I wanted to do this and aside from my feet, I felt okay.  I haven't had to walk at all yet, so I figure I still have that up my sleeve come marathon time.  I did it and it felt great to be able to cross it off on my training schedule.

Afterward I stretched like crazy, took some Ibuprofen, and showered.  It's amazing how much better I feel after a shower.  I relaxed a bit then Pepere and Oma (my dad and step-mom) along with my brother, Miles, came over to visit.  We were talking about what to do and I mentioned going to the farm to see the animals, and of course Constantine heard and went crazy wanting to go..so we did.  We had a great time at this farm outside Hillsborough that allows you to walk around and check out their cows, goats, emus, llamas, and different birds.  It's a great place and the kids love it.  We even got to take home some peacock feathers.


Now I am trying to plan out my training schedule around our weekend away, which is fast approaching.  We are going to Mass for a wedding on the same weekend as our five year anniversary.  We figured we'd just go as a couple and have grandparents watch the kids (Ahh...I know everything will be FINE, but we never leave them!).  That is the same weekend as my 20 mile training run, so I think I'm going to do it earlier in the week so I won't be sore and tired for our nice weekend.  Two things I am especially excited for:  Getting some really good sleep, and getting dressed up and actually feeling pretty.  Fun, fun!

Fall (way) Back Week

This week was supposed to be a fall back week after the 15 and 16 mile long runs.  My long run was supposed to be 12 miles.  I only did 9 (sort of).  I also missed about 5 miles during the week.  I feel really bad that I missed so much this week, but I guess that's just life and I should get over it.  Here's what happened.  First, Dom got called in for overtime on Wednesday so I wasn't able to run at all and missed my 8 mile run.  I did that run on Thursday instead of the 5 miles I should have done.  In retrospect maybe that wasn't such a great idea because it probably made it harder to do my long run on Saturday.  Earlier Thursday we went to A-Tech to figure out computer stuff for Constantine (which I will tell all about later because it was awesome!) and we were pretty busy.  As for an excuse for not doing the full 12 miles...I've got nothing...I just couldn't do it!

I had plenty of time in the morning to do the 12 mile run.  I had a good breakfast (with no coffee because we ran out of cream!) then got all stretched out and prepared with my fuel belt and comfy running clothes.  I felt fine and ready to run.  I stepped out the door and started running down the road and was surprised by how hard it was.  I kept going thinking that I just had to warm up, but it just didn't get any easier.  I swear it's because I didn't have any coffee, could that be?!  I didn't feel sick and can't think of any other reason why it was so hard (aside from the 8 miles on Thursday).  I tried to push myself to do the whole 12 miles, but it was like torture just to do 5.  I felt bad so I made up 4 the next day (which was easier, but I didn't want to mess up the next week by doing too much).  I only have one (sometimes two) cups of coffee a day so I can't believe it would effect me so much, but I just could not do it!  We went to my mom's house later that day for my little brother's 15th birthday party.  I wish we had the camera there because it was a beautiful day and we had a great time!  Oh, and yes, I did get my coffee on the way :)

I said earlier that we went to A-Tech to check out computers for Constantine.  We had a whole group of people there for him including our family, his OT, the school OT and PT, and the specialists there.  We tried out different mice (mouses?) for him since the normal ones are too hard for him and he is limited in what he can do on the computer.  We ended up finding one with a ball on the top that he picked up on right away.  It was amazing!  It was like all he needed was this one tool and he just took off learning and playing on the computer.  It was such an awesome moment in our lives to see this click and a whole new world open up to him.  Being able to access the computer is a very big deal for him since it will be a huge part of how he functions at school (and in life).

We bought the mouse and he has been using it a ton.  He is teaching himself to read on a site called starfall.com, and he LOVES it.  He's not even three years old yet and starting to read, pretty awesome!  I've always been a big reader and so has he.  Ever since he was a little baby he has enjoyed reading books.  This is compared to Aurelia, who up until recently would rather throw them or eat them, but now she loves them too.  Constantine constantly is talking and if he isn't saying something to us he is narrating stories that he makes up.  It's really cool, maybe he'll be a writer.  Anyway, books are a big part of our life so I think it will be wonderful for him to be able to read! 

I don't have any pictures of C with his new mouse, but I do have this one of Aurelia abusing our computer.  I love this picture because it is catching her in the act of like five different bad things.

16 Miles of Hilly Hills

Well, I did it.  I ran 16 miles through the hilly hills of Hillsborough and Henniker.  The last time I ran this route was for my 13 mile training run... and it was a killer!  I felt pretty good after doing the 15 mile run in Keene (where it's flat) last week so I wanted to see how it would be doing the distance through all the hills since the marathon will be hilly.  I have yet to actually see the marathon route, but there is no way it could be more hilly than this route (I have been wrong on more than one occasion so I really shouldn't assume this!).  I took my 13 mile run and added on the roads taking me back home instead of into town.  Wow, was it a good run.  It was definitely hard, but this training program must be working well because I felt great. 

It was a cool,crisp air beginning of fall kind of day, which was just what I needed.  The air was great for running, but toward the end it was very enticing to be running toward our bright warm cozy house.  I have a fuel belt for Gatorade and my phone and stuff that I wear on the long runs, but running such long distances I need to refill along the way.  Since a lot of this run is in the country Dom and the kids met me half way through and brought me some more Gatorade and a granola bar (which at first I tried to eat while running....SO not smart!  Just what my family needs is to loose me to a choking accident while running!).  The bar totally saved me and gave me some much needed umph toward the end of the run.  It's also nice to see my family cheering me on, well Aurelia was asleep, but C was excited to see me! 

Another tribute to this being a good training program is that I am never sore after these long runs.  I think sometimes I make it sound easy when I say that I had a good run, but they are VERY challenging.  I guess I always expect to be in way more pain and be crawling on the ground at the end, but it's not like that.  I think that I will need to lay on the couch all day after a run, but really I still play with the kids and do all the normal everyday things (maybe a little slower).  One thing that I am a little worried about is that my heel just started hurting.  It's now a couple of days after my long run and it just started to hurt.  It doesn't hurt a ton, but I just don't want it to get worse...not after all this hard work I've put in!

Things are moving along for Constantine getting ready for school (AAH).  This is definitely not something I am ready for, but he is so excited.  We went to the school to check it out and see the pre-school room and the PT/OT room and meet all the people who will be in contact with him while he is there.  He was in heaven meeting all the people and checking out all the cool toys they have there.  That is a huge difference between PT and OT in our home vs. the school is that they have all the cool tools like swings etc. to use with him.  I just hope it all goes perfectly and he stays healthy (yes, I am knocking on my wooden kitchen table!).

15 Miles & Pitcher Mt.

This week started out a little rough for running.  On Tuesday I took Constantine down to Boston Children's for a tube change.  He has to go down every 2-3 months to have his G-J tube replaced so it doesn't get clogged up.  He is such a good sport about being in the car for so long and while we are there he is so brave.  It's pretty uncomfortable to have the tube changed, but we bring Thomas' Hero of the Rails with us and that helps a lot.  On our long car ride we told stories and listened to his FAVORITE song over and over and over.  He loves "Down Down Down" by Jay Sean.  Dom made me a CD for Valentines Day last year and ever since then whenever we are in the car that song is all C wants to hear.  Surprisingly I'm not sick of hearing it, I love to see how much he likes it and watch him sing along.  Now (since we've heard it so much) Aurelia really likes it too and dances when it comes on.

Anyway, when we got back from Boston there was a lot to do (which is actually just my excuse because I was really tired).  I missed my first run of training so far (oh, except for when I was sick), which was only three miles, but I needed the break.  The rest of the week was pretty good and I didn't feel quite so tired.  The mileage is increasing during the week, but it isn't too bad yet.  My body is doing really well though all this running, I just get a general feeling of fatigue with all this lack of sleep (some day I will get sleep and it will be AWESOME).  The weather has been getting cooler too which is great.  I'm glad to be training harder in the fall rather than the summer. 

My long run this week was 15 miles, which I finally did in Keene.  I feel a little like I cheated by doing my long run in Keene.  It was definitely easier than running around Hillsborough.  The marathon is pretty hilly so I am glad that I do most of my training in the hills, but I wanted to take it easy on this run.  Not only is Keene flat, but it is all paved roads, and I know every road very well since I used to run there all the time in high school.  Keene was also a good choice because Dom could take the kids to hang out with family while I ran, which they always love.  It was another great day ( I have been really lucky that every Saturday has been so nice) and my run was awesome.  I felt so good the out there.  It really helps when you know the route. I need to familiarize myself with the marathon route or I am going to be in trouble (although I do know Manchester pretty well).  I was doing great until about mile 13 then it started to get hard, mostly because my feet started to hurt.  I am beginning to think that it was not such a smart idea to take something that I love (running) and take it to the extreme.  I'm hoping that I still like running when this is all over and that it doesn't ruin it for me forever!

He wanted to go up the tower. 
It totally freaked me out but we did it!

At least I'm not usually sore after these runs so we went on a great hike the next day.  I took the kids to meet up with Pepere, Oma, Memere, and Uncle TJ ( my mom, dad, step-mom, and brother) at Pitcher Mt. in Stoddard.  Dom stayed home to watch his favorite team win on opening day. 

We had an awesome time.  My kids are so lucky to have family in their lives and get so excited to spend time with them.  Pitcher Mt. was the perfect place to go for us.  It was a very short hike with such a huge reward.  The views are amazing at the top!  We haven't really gone on any hikes since C's diagnosis that we couldn't bring his chair or the stroller on.  We carried him in the Ergo Baby and he did great.  He had to face toward us which was the only down fall, but it kept his legs in enough so they didn't dangle like in the Baby Bjorn and our hands were free to hold his head from bobbing around (what I was really worried about hiking with him).  This opened up so many opportunities for us in the future. 

He was so excited the whole time, it was great!  Aurelia stayed true to her busy, wild self and was most happy stumbling over the rocks and eating twigs.  She is an explorer with no fear who doesn't like to be told that she can't do something, she definitely makes things interesting! 

And climb all over the rocks

Of course she wanted to go higher!

But she's so cute!

Eating for Three

Hahaha, no I am not pregnant with twins!  I have just been really really hungry lately.  I feel like I am eating for three; my legs, Aurelia (since I am still breastfeeding), and myself.  I feel like I could just keep an endless supply of food coming into my body to keep it energized for all this running.  When I look at it, I don't actually eat that much during the day since I am always running around doing kid stuff, but at night, when the kids are tucked in bed, I seriously eat what must be five pounds of food.  Whatever we have for dinner I pile up on my plate and think there is no way I could eat ALL that food, but I do...and then I have ice cream or cookies for dessert.  I should just eat more throughout the day, but for some reason I don't.  I'm going to try to work on it though so I don't feel so ravenous at the end of the day.  It's not that I don't eat by any means, just apparently not enough.

I had a good week of running this past week.  It was really hot the first part of the week, but not too bad if I ran in the evening.  Actually, my seven mile run I did in the middle of the day while the kids were napping because Dom went in to work overtime that evening.  I think I posted on my facebook; 7 miles. 95 degrees.  Not cool.  Literally.  That sums it up pretty well, definitely not easy.  For some reason I thought that seven miles is easy shmeasy now since I've been running more.  Another not so smart thought on my part, because (especially in 95 degree heat) it was hard.  Duh.  Luckily for me the weather changed and it became cooler for my ten mile long run ( the mileage decreases every couple weeks then increases again).  That run was much better than the seven miler earlier in the week, just a beautiful day and a feel-good sort of run.

On another note; this past week we did add to our family.  Dom dropped me off at Super Cuts for a trim and took the kids to PetSmart.  We do this a lot just to look at the fish and birds and other fun animals, but we always just LOOK.  When they picked me up Constantine had a little critter box on his lap.  Dom had gotten him a pet rat!  I thought they were fooling with me and I would open the box and find some dog treats or something, but no...it was a rat.  You probably think that I was upset because it was a rat, but I actually love rats.  I actually told Dom all the time that if we were to get something I would want to get a rat.  When I was little I had a million pets (maybe more like a hundred...a lot).  I would definitely say that rats are the nicest of the little fury friends.  I was just mad because I am annoyed with our crazy dogs and I didn't want another animal to take care of right now.

Constantine named him Four and he is actually awesome!  If there is anyone out there with a child like Constantine I would one hundred percent recommend getting them a rat.  He sits right on Constantine's tray and just hangs out with him.  He is so nice.  C likes to put toys on his tray like our toy barn and Four goes inside with some toy animals.  He makes Constantine so happy so I have no problem taking care of him....As for the dogs, as sad as it makes me, I think one of them has to go.  I feel like all I do is yell at the dogs for barking and eating things etc. etc. etc. etc. and I don't want to be that person.  I love animals and I want my kids to love them as well, not always see mommy mad at them.

See Four behind C's neck :)

Those were the highlights of this past week.  Now I am just gearing up for a harder week of running and a busy week of planning for C's school.  It is a long process to get him into preschool with the right programs and people.  I want to make sure everything is just right for him before I decide to let him go to school.  This week we have the first meeting with the school to get (and give) a lot of information.  It's kind of overwhelming (mostly because I don't want him to get sick, but also because I am a little bit of a control freak about his care). I think he would love it though so we are checking it out.

Yowza!!

That's all I can say after this weeks long run.  It was only one mile longer than last week, but wow was it hard.  Last week I felt so great out there running the whole time so it was a little bit disheartening to be out there and really feel the challenge.  I think there were a lot of reasons why this run was so much harder.

I haven't been sleeping very well because for some reason both kids have been waking up at night more than usual.  With Constantine I understand that he can't turn himself over so he wakes up a little and calls for me to turn him.  I usually don't get frustrated doing it because I can't imagine not being able to get comfortable on your own.  Lately though it has been more frequent, which gets hard.  Aurelia has just been really restless.  I am trying to figure out a way to get her to sleep better without needing me to help her back to sleep so often.  This isn't really easy (as I'm sure other mom's know) and I am definitely not the cry-it-out kind of mom.

I also switched up my workout schedule since it was raining so hard on Wednesday.  I still ran, but did 3 miles instead of 6.  I actually love running in the rain, but it is hard here because the roads get really bad when they are wet.  So, I ended up doing 6 miles the next day, closer to my long run than usual.  It was also pretty hot and sunny when I did my long run, which definitely makes it harder for me.  The biggest thing was the route that I chose to do.

Again, like last week, I wanted to take it easy and do something more flat.  I mapped my run to Henniker along a road that I know well, then back to Hillsborough on a road along a river because (here is my genius thinking) I thought it would be more flat.  I was so wrong!  This run was unbelievably beautiful, through countryside, then the town of Henniker, then along the river, but man was it hard.  The road back to Hillsborough was extremely hilly and, since I didn't know it, it felt like it would go on forever.  At first when I came to another hill I found myself laughing out loud at how wrong I was, then later I actually started to get mad at myself.  What was I thinking!  It really was beautiful though so I tried to ignore my pain and enjoy the views.  It is really important to me to not push myself too hard because I want to stay strong and healthy to take care of my kids.  When I do these long runs I go slow and enjoy them, which is why I was annoyed with myself for not planning better and choosing a less hilly run.

Oh well, live and learn.  On the up-side I had Dom and the kids meet me in Hillsborough at the icecream place in town, which was awesome.  I finished my run by running up behind them walking.  Constantine was all excited saying "Mommy have good run?  Long run, Mommy!  Nice job!  Go eat icecream!"  Could he be any more cute?.  They brought Gatorade for me, which I really needed, then we had some delicious icecream.  We give C the tiniest little bites of it to keep his lungs safe, but he still loves it.  It was a great end to my most challenging run yet (by far).

12 Miles

Today was my 12 mile training day.  I was dreading it a little bit more than I would normally dread a 12 mile run for one reason. I was sick earlier in the week.  I actually felt bad that I missed two runs in there, and was almost going to go the first day when I was in denial about getting sick.  Then I threw up and gave up on the idea.  Luckily it was a fast bug because I was only sick for two days.  Constantine and Aurelia got a very mild version of it, then Dominic got it.  He may say that he had it worse than I did, but really we had two different things.  I had wife/mommy-gets-sick-and-pushes-through-like-a-champ syndrome, while he had husband-gets-sick-and-turns-into-big-baby syndrome (sorry Dom, I love you!).  Anyway, there were actually three days in there that I couldn't run, but I made one up on an off day.

My plan was to take it easy on this long run.  I still wanted to do the 12 miles, just maybe not the hilly hills in Hillsborough runs that I usually do.  I was thinking a nice easy 12 miles through Keene or somewhere else nice and flat.  My plans changed though when Pepere and Oma (my dad and step-mom) suggested we go to the trolley museum in Lowell.  When an opportunity arises that has anything to do with trains there is no possible way I could turn it down.  Constantine LOVES (I need a stronger word than that...) LIVES trains.

We had an awesome day going on a trolley ride through the old factories.  Constantine got to sit up front with the engineer and ride on an elevator (he calls an alligator) to his seat since we had his chair.  He was in heaven with all the train noises.  We also saw a huge engine and a caboose which he said looked like Hiro from "Hero of the Rails" the movie and the caboose was like the Little Red Caboose, only BIG.  Then we walked around downtown to get me a coffee ( I didn't sleep well the night before because I have two kids under three and more often than not that's how it goes).  Aurelia is so curious about everything, and is so squrimy and fast, I find myself wanting to get one of those kid leashes to keep her safe as she points and runs after something else new saying "dis? dis?".  We then took them to a skydiving place to watch the airplane and the parachuters.  They both loved that.  I loved watching them.

I just have to add this little story.  We were driving home and Aurelia was upset (she hates car rides) so I was singing to her.  C says, "Mommy sing Twinkle Twinkle Little Star".  So I did, then he starts singing Bah Bah Black Sheep while I was singing.  So I started singing with him.  He immediately switched to Twinkle Twinkle.  He is such a clever little stinker, he was joking with me.  I looked back and he had this sly little grin like "haha, I messed you up, mommy!".  So we kept singing the different songs that have the same tune and then switching.  Unfortunately, Aurelia wasn't too impressed.

We got home at 3:30 and me wanting to get my run in before  the kids bedtime just went with the same old route.  I did my 10 mile run through the hilly hills of Hillsborough then added on a 2 mile lake run.  I actually felt awesome.  I thought it would be grueling, but I really felt great and just enjoyed being out there.  Even the last two miles when I passed my road and kept going around wasn't too bad.  I have to admit that now that I am home with the kids asleep I am starting to feel it.  Maybe someone really nice will proof read my post and get a great idea to give me a nice foot massage. hmm.

Today was a great day.  My kids are awesome.

Challenge

I did my long run today which was 10 miles.  I thought when I got done it I would be crawling home and dead tired, but I acutally felt really good, like I could almost run some more.  I think that was probably the runners high kicking in, but it was a reasuring feeling to know that I could do it and have some strength left. 

While I was putting my daughter to bed later(which took a LONG time tonight)  I was thinking about how challenging this marathon is going to be.  Then I started thinking about when I gave birth to Constantine and how much of a challenge that was.  When I think about this marathon I can't help but compare, especially since I am running it for Constantine.

When I had Constantine I obviously didn't know what to expect since I was a first time mother.  I was in good shape from running through my pregnancy and I was pretty mentally prepared.  I had him at the Birth Cottage in Milford, New Hampshire and walked around through most of my labor.  When I started to push I got into the birthing tub where I stayed for about four hours.  The first three I pushed. THAT was the hardest thing I have ever done.  I used every muscle in my body and every last ounce of effort that I possibly could.  The room was filled with my closest friends and family and my husband was there in the tub with me, but I was so in the zone that I didn't notice anyone or anything. 

When he finally came out everything came into focus and I saw everyone there and was just amazed that this little person was here.  I think that experience released massive amounts of endorphins becasue I spent a week after his birth just laying in bed staring at him (95% because I was so in love with the little guy and 5% because every inch of my body was sore).

This marathon is a little bit similar in that I am going through this hugh challenge not to bring him into the world, but to do my small part to help sustain him, save him.  The challenge of giving birth to him was mine alone, but this marathon challenge makes me feel like I'm part of this big network of moms and dads and relatives and friends who are each contributing to saving my son's life and their son/daughter/friend's life.

With such a hugh collective effort of each family embarking on their own fundraising challenge I can't help but feel in my heart that there will be a treatment soon.

My plea for donations (As seen on my firstgiving page!)

I am Constantine's mommy, also known as Luciante. As a mommy it is my job to do everything I can to keep my children healthy and happy. That job for Constantine is a little more difficult than usual becuase he was born with a genetic condition called Spinal Muscular Atrophy (SMA). There is currently no cure or treatment for SMA...But that WILL change. They are getting close. Reasearch for SMA is the closest to finding a cure than any other genetic disease and there are countless individuals who are working hard to make a cure a reality. Research for SMA also will benefit other genetic disorders like ALS and Multiple Sclerosis.

It is my goal to run this 26.2 miles for Constantine in the hopes to raise enough money to help fund the vital research for a cure.


Spinal Muscular Atrophy is a disease that affects the motor neurons, which causes muscle weakness of varying degrees. One in 6,000 babies is born with SMA worldwide and one in 40 people are genetic carriers. SMA is the #1 genetic killer of babies under 2.


We had never heard of SMA until Constantine was 8 months old and was diagnosed. We were devastated. We have been dedicated since that day to make Constantine's life the best it can be and to support every effort to END this disease.


Constantine is (sorry, I'm biased) the coolest little boy in the world. He is smart (at 2 1/2 he knows all his letters, shapes, numbers and names of everyone he meets including our chiropractor the "Pretty Nice Guy"). He's funny , sweet, silly and friendly (and the boss of the world). He is so happy despite all his limitations. He loves to collect trains and the cars from the movie CARS ( in which he has 29 and his colletion still grows). He also loves his dogs and his little sister, Aurelia (except when she steals his cars or trians from him). Constantine deserves the best, and we know that with all the research being done for him and all the other amazing kids with SMA -THERE WILL BE A CURE.


My dream of dreams is that Constantine will someday walk and run and play. I will be almost equally elated if he is someday able to eat without a feeding tube, or cough without a cough assist, or not need to wear a Bi-Pap at night to help him breath. He has the most inner strength and perseverance I have ever seen and he deserves a cure.


Please help find that CURE for Constantine! Thank You. Thank You. Thank You.