There is nothing we can do..oh yes there is!

So today I woke up and enjoyed my two girls cuddling in bed, windows open, watching Sprout, could a summer day get any better?  We came out, opened the other windows, ate breakfast and started playing.  How many of us do this and take it for granted? I know I do.  I take for granted sometimes the basic parts of my day, like the fact that my daughters are healthy and able to enjoy my day with me, able to lay on the floor and talk by walkie talkies, able to spin around a dresses just because "it spins", and able to wear my sunglasses and pretend to be a diva!

A few weeks ago I was at East Goshen's preschool entertainment series in the park. Which I must say is fabulous!!  Thanks EG!  We enjoyed our time and came home, for three weeks we enjoyed this series.  I received a message on FB from an acquittance noting she had also been there.  I realized I had seen her and her daughter and was glad to hear of others enjoying the entertainment provided by East Goshen.  I then sat back and realized, she should have been there with 2 girls, not just one.  She gave birth to two beautiful little girls about 7 weeks after Mackenzie was born, and a few short months later, one of her little girls became an  angel after being diagnosed with SMA.

This is a disease that I never had heard of until a friend had shared this heart wrenching story with me.  I to this day, don't understand exactly what SMA is, I am trying to read more and understand more.  I do know that at this point it is a fatal disease to these beautiful babies and their families, but that doesn't mean it is hopeless.  Apparently it is the #1 genetic killer among children, and is also the closest genetic disease to being cured.  It is needs money, funding, needs to spread the word, to get this disease exterminated!

I have found myself over the years, embracing many benefactors, such as American Cancer Society, Red Cross, American Heart Association etc.  I chaired Relay for Life for years, and so many other non profits that in one way or another affected myself or my family personally. 

SMA has not hit my family, and that is why I am pushing to do something about it.  I don't ever want to hear about someone I know having to deal with this. I don't ever want to hear "I am sorry but there is nothing we can do", as so many doctors seem to tell these families.  Why in today's technology does it come down to money...why is it that we can create an ipad, ipod, iphone to talk to people next door, across the world or in space but we can't cure these disease that pull apart families.  Something needs to change.  I hate that fact that so many causes are political, they shouldn't be!

I really want to get involved in this...I want to create a way for all of us to be involved. We can do this, we can stop this disease from taking our children.  There is a run called Zane's Run...the name of the beautiful little angel this family is missing.  It takes place September 25th this year.  I found out the date last week from Zane's mom, and can't believe that it is on Skylar's baptism day....that is quite a coincidence...maybe not.  The day that Skylar will be welcomed into the church of God, blessed and celebrated, a huge group of parents, friends and family will be raising money for other babies to have a day like this too, so they don't have to go too heaven too early!

My first goal is to get 1O runners/walkers signed up for this run.  But deep down I want to work on something bigger for this event.  They have had 35O+ people attend each year, this year, we NEED to double that!!   I want to work with this mom and see how I can help make this something even bigger, something newsworthy, something that will create a buzz and raise TONS of money!  I LOVE working for the good of others, I love seeing something others or myself did affect someone in a positive way. I love seeing a mom or dad smile knowing someone cares and someone wants to help.

Zane's mom messaged me some stats this am....this is Zane's Run third year, in the past two years, they have raised $25K+ for families of SMA.  The funds from this event help purchase  MUST HAVE adaptive carbeds for Type 1 children of SMA.  Each car seat costs $875!!!  Many insurances won't cover it,  SHOCKER!  Have I mentioned how I am truly not found of the USA's insurance options!  Anyway...over the past 2 years, through donations and funds raised, they have purchased 35 beds!!!

So I am asking for 3 things for you to consider today...

1.  Are you a runner or like to walk?  Resister to run the 5k or 5 mile run or resister to walk or run  the 1mile fun run/walk. Early registration fee is $25 for adults and includes an event t shirt.

2. Are you a business owner who could help by sponsoring this event?  Sponsorship starts at $1OO.

3. Are you interested in becoming a member of my team?  We won't be at the event because of Skylar's baptism, but want to help raise as much money as we can...so it's just a team to raise money, super easy!!

4. Are you interested in donating money to help me fund raise for this event?

So as you go through your day today, think of the things you take for granted with your kids....when you get home from work, do they run and give you a hug, do you see what they colored at camp, or have they made you a necklace out of pasta?  Or did you just enjoy dinner at the table together...a family who suffers a lose from SMA won't enjoy any of these things...they miss out on the EVER DAY things so many of us take for granted.

Today, don't take those things for granted...cherish them!  & Today, find a way to be a runner, walker, team member or sponsor of this event!!!

Thank you for listening again to the many thins that enter my mind.....I look forward to helping this event and hope you will too!!

For More information go to:  www.zanesrun.com or email me crozier1125@aol.com !!

Thanks

xoxo

Joy

Family Vacations

We decided this years trip to Disney will be postponed until October/November because of Skylar's age.  I wanted her to be at least six months old when we went to Disney, so I could use sunscreen on her and not freak out about her being in the FL sun, although I will anyway.   So it's only 3 months away so I am starting to get excited about the trip!!

We have been going to Disney now for years every July or August and I realize now that every year becomes more special for new reasons. The first time I went on vacation with my parents as an adult was the summer I got engaged.  Steve couldn't use his timeshare week due to work constraints and asked my parents if they wanted to go down to FL with me.  It was fabulous, last vacation with Mom and Dad before I would become Mrs. Crozier.  It was a blast and to this day I treasure the time I spent with them alone, which rarely happens anymore. 

After that, we started vacationing together to FL every year.  4 adults traveling to FL, visiting the parks and enjoying dinners out, swimming and each others company.  I remember walking into the parks, no bag lines, no snack packs, no strollers, no anything, just a ticket and a smile on my face.  We loved the parks, enjoyed riding the coasters, just strolling around and watching people.  And to my Dad's dismay,  99% of the time ended up in some type of shopping area, shopping for this person or that, food, clothes, or any other Disney gift we could fill our arms with.  Mom and I LOVE shopping and every year, we go to Downtown Disney and Dad sits on the EXACT same bench outside of the exact same shop, awaiting our return.  Steve has come to enjoy Disney shopping as much as we do.  I remember enjoying a day at the pool, in to shower and head to a nice dinner...awww how I love Bahama Breeze!  The years passed and along came Mackenzie...and our 1st Disney trip as PARENTS!! 

I knew it had changed when my packing and FL trip list became LISTS that never seemed to end.  Diapers, Swim Diapers, wipes, blankets, toys, 14 bathing suits, just enough for 1 a day, sunscreen in 15, 3O and 5O, shoes, sandals, and the list goes on.  Steve asking why can't I just pack her a few outfits since we have a washer and dryer...my answer "She can't wear the same thing during our trip!" LOL  The moment we got out of the car at the airport should have been a tell tale sign of the change...from a couples trip to a FAMILY trip.  The amount of luggage plus car seat, stroller, diaper bag, Kenzies bag, nearly didn't fit.  Thanks to the rental car attendant, we made it to the resort, somehow!!  Our simple no bag lines at Disney became the line that allows bags, cameras, kids, bottles, and anything else attached to our stroller.  So you get past the bag search and you approach the opening of the park...and you see her eyes light up. For the first time your view of Disney changes...you see it in her eyes, you see the Magic of Disney again, you realize all the trips before without her, can't even compare to this one minute of seeing her reaction to seeing the castle, a princess, a high five from Mickey Mouse!  We experienced more in life that first trip with Mackenzie then I ever thought possible.  We remembered what life really is about...it's about being happy, enjoying life each day, it's about smiling just at the sight of a silly character, its about raising your hands on the tea cup ride.  It didn't matter that I couldn't go on the roller coasters anymore...I was more excited to show her It's a Small World, and couldn't wait to catch her first photo of her and Daddy on Dumbo, just like my Daddy and I did years before!  It is about seeing Mackenzie and her grandparents learn more about each other. Poppy & Gram teaching her the Hokey Pokey in the hotel during a relaxing afternoon.  It's magical to see your parents eyes light up when they see their granddaughter experience things for the first time.  

It also reminded me that it isn't all about the fabulous rides, or fireworks or the big magical castle.  It is about stopping to watch the ducks eat while walking through the park, it's about watching her fall asleep on Daddy on the ferryboat leaving Disney at night, and it's about looking back with her on those videos 2 years later to have her jump up and down and say Disney Mommy!!   

When you travel this summer or this year, don't forget to enjoy your family.  Pack like a crazy person, make list after list and research every possible savings online, but remember it's a FAMILY vacation, and your family is what is most important about the whole trip.  This will be Mackenzie's 3rd trip to Disney and Skylar's 1st.  Again, another trip of firsts!  Mackenzie has already planned out Daddy and her on Dumbo and Skylar and Mommy watch and then we rotate.  I love that Mackenzie has memories like this already and asks to watch her videos and photos all the time. These are her memories and no matter how big and bold or quiet and relaxed, they are with her family!  So next time you walk through a Disney Park or any park or vacation for that matter, don't get upset about all the baggage, cameras, stroller parking or prices of food, just enjoy every moment you are there with your kids.  They are experiencing firsts and lasts that you will never see again!  So as for me, I can't wait to experience Skylar's first ride on Dumbo with Daddy....and celebrate Mackenzie's 3rd!!  

Today I am grateful for:

1. I am grateful today for MD who loaned us a dehumidifier for our basement, which seemed to be growing mold it was soooo humid down there!

2. I am grateful for DL for reminding me about a very special event I want to attend in December.

3. I am grateful today for SC who made a fabulous dinner for us tonight!

4. I am grateful today for HC for allowing my family to have a fabulous vacation every year!!

~~off to Kipp!

xoxo
Joy

Angels Among Us

I have rewritten this paragraph about 1O times this morning already, not really sure how to start it.  So I am just going to get to the point.  My friend Monica, who passed away this winter has been visiting Mackenzie on a regular basis.  Ok so now that I said that, I guess I need to explain some things.  Monica was a very good friend of mine who helped me get through 3 miscarriages before I became pregnant with Mackenzie.  When I was pregnant, Monica checked on me all the time, knowing that this little girl was a miracle from God.  The day I went into labor with Mackenzie was the day after Monica's breast cancer surgery.  I was supposed to go visit Monica in the hospital that morning with my friend Beth, until Beth convinced me the "cramps" I was having were contractions and I better get to the hospital.

So from that day forward, Monica used to tell me she had a special connection to Mackenzie, she always gave her an extra special hug and smile whenever we saw her.  Mackenzie knew her as "Moni".  So as Monica battled cancer, Mackenzie got to see her less and less.  This fall was a very rough time for Monica, and we kept our distance, per her request.  Mackenzie was having her 2nd birthday party with Santa in December and wanted to invite her, so I did.  I thought she would reply No, but wanted to let her know she was being thought of.  I was shocked to get an rsvp of yes!  So that night, Monica got to her party, and sat in a special chair next to Santa all night.  I know it took everything in her to make it to that party that night.  It was the last night I ever saw my friend, she passed a little over a month later. 
But for some reason, after that party, Mackenzie started asking to pray for Monica. She would randomly say Mommy, lets pray for Moni. I can't explain it, and after months of trying to understand how she knew that she needed prayers, I have found no answer.  So we would pray for Moni.  This continued until the week Monica passed away.  That week she was even more persistant about praying and the day Monica passed away, she told me she was really sick and got very upset and cried.  I said it would be ok and God would take care of her, she just wouldn't settle down. Within a few hours of that I got the call from John to tell me she had passed.  Of course it was devastating news, and hit me harder then I ever thought it would.  Mackenzie never asked to pray again, I don't know how she knew that the prayers were answered but somehow she did. 

So the past few months she has talked about Monica and some silly things around the house has happened. She asked for her Moni bear, the bear Monica & John gave her at her party.  I went to the playroom to get it,since I knew I would have to get it out of the big tote and she couldn't reach it. It was right on top, and I know it wasn't the night before.  So little things like that kept happening, and Mackenzie started talking about Monica again like she was a friend she saw all the time.  Until one day when I was driving home from Wegmans and drove down her street.  Mackenzie pointed to her house and said Monica.  I was shocked that she knew that, but in return said Yes,that is where Monica lived.  I made a comment about her not being there anymore, and she said Yes, Monica is here.  I quickly turned around in the car and said what?  She pointed over her shoulder and said Mommy. Moni is right here.  I didn't answer.  I said why do you think that, she said Moni said She is all better now.  I honestly and truly was chilled to the core. She then told me that Monica said it was white and snowing.  I assure you that I try to teach Mackenzie about Jesus and church but there is no way she would have ever known that heaven is described at times by people as being white or the like.  I got home, shaken, and asked her to tell Daddy what she saw.  She repeated that Monica was there and said she was all better now, and it was white and snowing.  Steve's draw dropped too.

I told a few people and I am sure they thought I was crazy.  Over the past few weeks, she has had more encounters with Monica. She had one night where Monica told her she was home making dinner for "the boys", they were downstairs and she was calling them for dinner,then she made them cookies.  Another day Monica came to visit and wanted to go swimming, in her green suit.  Mackenzie said need a swim diaper.  I said hunny Monica doesnt need one, and so matter of factly she said "No Mommy. I do when I go swimming with her" 
I don't know what your beliefs are or how you explain these visits, but I do know that Mackenzie finds NOTHING abnormal about seeing and talking to Monica. She has no barrier to not believe it is possible, and maybe that is why she can talk to her.  I cry thinking about all the things I have missed talking to Monica about.  I wish she had been able to meet Skylar, but now maybe she has.  I miss telling her how amazing her hubby and sons have been, but again I think she has seen it.

I find myself wondering why?  Why did she choose Mackenzie to talk to, Why didn't she choose an adult, Why is it random times?  And I have come to realize that 1. what adult would be open enough to accept it, 2. Random times..how would an angel really schedule a visit? 3. And maybe Mackenzie because she truly did have a connection that would last through longer then either ever knew possible.

So today I leave you with the thought of...do you believe in angels among us?  I don't think I ever thought about it as much as I do now. I wonder what Monica is thinking, and wonder how wide she is smiling when she sees her sons being so successful in all they do.  I do know one thing...that I realized that she truly is here watching down on us, and maybe just maybe she has access to the internet and can read this blog, ha!  Although she was never good at emailing back lol  She was definitely a more in person friend.

And as for John, Matt, Andrew and Cara....don't you doubt for a minute that you have a guardian angel....remember it was right outside of your house that Mackenzie saw her.  That I know for sure wasn't an accident.  And John, no doubt she is swimming in that pool whenever she can!

Quick note... Today I saw a post on FB from an old friend about her blog...so being ever so curious about everyones blogs, I clicked it.  It has truly changed my day...the whole idea about the blog is to "be a part of an email gratitude list with these guidelines: list 5 things I’m feeling gratitude for today, leave names out - initials only, and conclude with a prayer for the day"   As she states,  "One side effect of these gratitude lists is that I find myself going through the day, trying to find things that I feel gratitude for. It's a fabulous way to go through a day". I so agree, So at the end of every blog I will sign my blog with 5 things I am grateful for that day and a mini prayer.

My Gratitude List...
1. Thankful to JJ for showing me this awesome idea!
2. Thankful for Malvern Fire Co for hosting such a fabulous fair for local families!
3. Thankful for my 9O Day Weight Loss Group...you guys have inspired me!
4. Thankful for SC, who goes to work every day and finds a way to love and cherish us every night.
5. Thankful for MA, reminding me that friends are important and to make sure to enjoy them and take time for them.

Dear God: Today I ask that you take care of all the guys and girls working the fair this week in the heat.  I ask that you take special care of my Mom who is spending the week at my sisters house sitting. I worry about her while she is away.  I also pray that my little Skylar girl's belly aches and digestive issues go away.  Amen

What Would I Do?

So here we go. I always feel like I have so much to say, so I figured what better way to get it out then a blog. A few warnings before you go any further. I might have typos, might write about a few things that only a few would understand, might write when tired, might complain, might be boring, might contradict myself, and might be totally not worth reading some days, but I will always be honest and will always be me. So read on if you want, or close the window now, your choice...you have been warned.
So today like most days have had these awesome little highs, seeing Skylar, who is now 11 weeks old smile when I sing Well Hello Dolly, or seeing her learn and try to grab her cute little piggy toes, or watching Dylan and Mackenzie play like nothing else matters in the world. But then I read a story about a 5 year old little girl named Gabby, who has without all the medical terms, brain cancer, I will never understand why these things happen. I sat and cried and watched three healthy kids playing as this little girl prepared for treatments that could save her or kill her. I sat questioning how to help, how to get more involved and how to spread the word about a little girl I don't know. This family had a healthy little girl on Mothers Day and within a few weeks found out she had this life altering problem that could end her life in weeks. I truly don't know why I was meant to see her story today and maybe it was just to make me be more thankful for those little moments and realize those moments are truly the biggest. As a mom, I hurt when my children hurt, and I smile when they do, but I cant help but hurt for this little girl and wander what would I do if it were me? Would I grab her and hug her and kiss her and never let go, would I cry uncontrollably, would I scream at God "Why my baby girl?", or would I be so in shock I couldn't do anything. I looked at this little girls video of photos of her so alive and I see recent ones at CHOP with other kids, sisters in her hospital bed loving each other and making memories. Maybe that is why I saw this, to realize that those moments that we so easily shrug off...playing school, brushing Daddy's hair, gazing out the window in hopes to see a bird, or even the annoying Mom, Mom, Mom, Mommy nagging....I would rather hear that all day every day then never again. Take a minute to remind yourself..time passes by, too fast and sometimes without even a chance to cherish it until its gone.