Monday, July 23, 2018

Lucky Fin Project Weekend

Holy Crap. That is the only way to start this post. What an amazing weekend Jude and I just had up in Troy, Michigan with the Lucky Fin Project. For those of you that haven't heard of it, please go check it out here:



This organization was started by Molly and her daughter Ryan who was born with a limb difference on her hand. When Jude was born I found this organization online through Facebook I believe and as a new mom with a son effected by ABS, it was a lifesaver. It was nice to know that I wasn't alone and that there were other kids out there like him. As Jude got older I kept seeing this thing called Lucky Fin Project Weekend and I always thought how cool it would be to take him. Well this year we got to go! Within 3 weeks, I decided that this would be super beneficial because he is starting VPK this year and I wanted him to know that he wasn't alone, that there were other kids out there like him and that it was ok to be different.

So Friday morning we got up super early and drove to the airport, the whole way there he was so excited to fly on a plane! It was adorable, until he asked me for the 1,000th time, "are we there yet." I finally had to tell him that I promised to let him know as soon as we got to the airport! Well we get there and all goes well and we are sitting by our gate with this young lady walks by who is missing part of her arm and she is wearing pants that say Lucky Fin Project on them. Now, we just drove almost 2 hours to get to the airport so I said, "you must be going to the Lucky Fin Project weekend I assume?" Of course though, why else would she by flying to Michigan?! Either way it started an awesome conversation with her and the young man that was with her who was missing an arm and a leg. They were so sweet to Jude and showed him their "robot" arms and legs and he was in awe. This is where I think it all started to make sense in his little head.

The first night we were there was just a socialization for every parent and child that was going to be part of this weekend. Jude met friends right away and started running around the hotel with the other kids while the parents and I talked. It was amazing to hear their stories and see each childs difference. Not only that but the kids didn't seem to notice but when asked, they all showed you their limb difference. As the kids were running a mom and her daughter came up and started playing and talking to us. We immediately hit it off and hung out the rest of the weekend and the kids became inseparable, it was beyond adorable and we can hear the wedding bells now! We will call her miss lucky fin. We ended up hanging out at the pool with them and Jude got to show off his amazing swimming skills. Really won over his little girlfriend ;)

The next day was the picnic and this is where it hit home for me. There were 500 people registered for this event. 500! So picture this, 500 people there either as part of the family or the person with the limb difference, but here, it was normal. Siblings were used to it, parents talking to other parents about their stories and their lucky fin kid, and kids playing with other kids that were just like them. Unique. It was amazing and I don't have quite the capacity to describe the feeling as a mom. But Jude lite up and would come running back to me and say "mom! There are so many other people like me!" It made me smile and get tears in my eyes. The other cool thing was when the Lucky Fin ambassadors would dote on my child. They entertained him when he wanted to see their "robot" arm and he was fascinated.

Side story: 

We went to Starbucks on our way to the picnic and one of the Lucky Finers was there who we hadn't met the night before. Jude saw her and said "Mommy, she has a cool robot arm, can I go tell her that she's my hero?" I immediately said yes and we walked over to tell her and she was so sweet about it! She came back to our table to talked to us while we all waited for our drinks and she showed Jude her amazing arm and all that she could do with it. She was so amazing with Jude and made such an impact on both of us, I can't thank you enough! You are why he became so comfortable showing his hands and he talks about you still. 


Anyway, so after the park we went back to the hotel to rest and clean up before our Lucky Fin concert that night! Tony Memmel is a one handed guitar player and is amazing! He was playing baseball with the kids earlier and then put on a concert for us later that night. It was so cool to see so many people try to jam into a tiny conference room and to know that everyone had been through roughly the same thing. If you want to see more about Tony his link will be at the bottom of this post! So Tony played and all the kids sang and Jude loved it and said he can't wait to play guitar one day like him! After the concert was over we hung out with little miss lucky fin and her mom, as we had been doing all weekend but this was our last night :( . There were so many people hanging out and playing together as parents continued to talk and share stories. It's just something that can't be forgotten.

The next morning we woke up and met up with miss lucky fin and her mom to have a fair well breakfast as they live in Chicago and we are in Florida. So the kids ate and played and then we sat with some other ambassadors from the Lucky Fin Project and put stickers and gems all over each other with some Stump Kitchen tattoos (see that link below too!!) It was a perfect way to end the trip. To say we were sad to leave is an understatement but to be able to have taken my son and see how much he changed in the matter of a few short days. By the end we would take pictures and they would all show their lucky fins, so proud and happy. It makes me tear up when I think about it and to have seen him grow so much. Not only that but I was able to talk to other parents. I went into this all for him, to make sure he had a good time and knew that even if he was the only one in his school like that, it was ok because there were other kids out there just like him. But I was able to get ideas off other parents, share my story and my struggles with people who understand exactly what I am going through. With that, I was able to see older kids with no problems whatsoever and it gave me hope. Not that I thought Jude wouldn't be able to do anything but it's comforting to see that he is not alone. That we are not alone.

We flew back on Sunday with reluctance. Jude did not want to go and neither did I, we had made such good friends and memories that we are counting down the days until next year! We got on our plane with the pleasant surprise that the young lady and gentleman who were on our flight there, were also on our flight back. Jude was quite excited to see them as we had hung out with them a few times this weekend. As we got off the plane and looked and me and said, "there they are mom! Can I go say goodbye?" And with my yes, he ran up yelling their names to make sure he said goodbye to them.

Lucky Fin Project was a big aspect of our lives before this weekend but since then it has become even bigger. Jude has come back talking about our trip and showing people his fingers and toes and telling him that he is not alone, that there are people like him and that he is super cool! It brings so much joy to see him be so proud. Thank you Lucky Fin.

Here are some pictures from our trip:



Waiting to board our plane! 


This kid had the hook up for the flight over! Finding Nemo pillow included ha! 


Making sure he looked cool in all his new swag


Molly and her daughter Ryan! Can't thank her enough! <3 



Miss Lucky Fin! Melt my heart! 


Jude loved Brian who was a one handed drummer



Ashley, one of the ambassadors who flew there and back with us! 


Rebekah who is also an ambassador! 


This is the lady who runs Stump Kitchen! 


How cute are they?!



Tony Memmel before his concert




Rocking our Lucky Fin gear


Love our new friends! 


Saying goodbye to Molly :( 


Some of the amazing kids Jude met! 



Tony Memmel - http://tonymemmel.com/wp/
Stump Kitchen - https://www.stumpkitchen.com/


Sunday, January 7, 2018

1 Year Later

Wow. I can't believe that it has been a year since I last wrote! There has been so much going on in our lives its hard to think of where to start.


It's been a busy year for the Spenceley family and not always in the best way but I will start with my perfect little lucky fin. (Pardon as this blog might be all over the place trying to catch everyone up!)


My lucky fin had surgery again in August to separate his toes and release the last band around his pinky finger on the right hand. It was supposed to be about 2-3 hours depending on how long the fingers and toes took. They were only supposed to be releasing one toe from the other 2 because of how the toenail continued to grow back and risk infection in the other toes. Well when the surgeon came out he told us that he was able to release all 3 toes and he now had 5 toes! And his finger was nice and simple as well. This was the pinky finger that we thought he would lose the tip of on the last surgery because they weren't sure they could keep it and get blood flow to the tip of the finger where the bad was. Luckily the surgeon was able to release that bad with no complications and our lucky fin did awesome.
 
 

 




(Top two on the left are before surgery. Next 2 are post surgery where he insisted he walk himself out of the hospital. Following pictures are right after the casts came off and then a few weeks after when they are healed)


Next!


We escaped for the crazy hurricane that was trying to run over Florida this year! We went up with my mom to her friends house in Alabama. It took us about 8 hours to go 6 so that's not bad all things considered! But we got there around 11:30 pm and when I opened the door I was greeted by 4 donkeys and a horse. I thought I was seeing things but no, it was for real! And then I got my youngest out of the car and he was petting a donkey and I tried to push him away so we could close the car door and he bit me. Ok, maybe not really bite because they were super sweet animals, but he definitely nibbled my arm and took my sons sock off. Needless to say, my kids had a great time on this mini farm and it was a nice little get away while the weather was bad back home.

 



The oldest (the lucky fin) has been growing into such a little boy over the last year that it's hard to believe that he is 4 years old now. He and his little brother started preschool in October and they absolutely love it and it's awesome to see them grow and learn. One of my favorite things is when they come home with project or art work and they are so excited to tell me all about what they made. I have a huge stack of their artwork in my room and my lucky fin always goes through it and wants to go over every piece of art he's made. Every time he is in my room this happens! His little brother does the same but he is still learning to talk so it can be comical listening to him try and tell me about what he has made. This was their first day of school!



Short funny story: The boys were supposed to be batman and robin for halloween. Their dad got them their costumes and they lived in them the week leading up to halloween. Well come day of and my youngest wants nothing to do with his robin costume... totally refused. So his dad put him in spiderman and here they are! 





The boys also had their first airplane ride up to Virginia! This trip was such a last minute (stressful) trip and when I say last minute I mean super last minute. My parents went up there for a wedding and I didn't have anyone to watch the boys on Friday while I was at work so I had to take off unfortunately. But it worked out because late Thursday night I was on the phone with my mom buying plane tickets to have a weekend getaway with the kids and we flew out Friday morning at 9:30 am! Talk about crazy but they boys had so much fun that it was well worth it in the end. 


                                 


 I think I have hit all the major life updates for this last year. It was a busy one that's for sure (clearly since I didn't post for a year!) but we are now in 2018 and I'm sure this will be a better year to come. The boys are growing up into sweet little boys that have a love/hate relationship. My lucky fin protects his little brother and the youngest does his best to annoy him :) Here are a few more pictures from our year.




We had a girlfriend of mine take some photos of me and the boys




Some good friends got married and I was in the wedding and my lucky fin was the ring bearer! 





They loved seeing Santa! 


After their first school Christmas play



Merry Christmas and Happy New Year from the Spenceley boys!