Fifty Shades of Gray...

...hair. These damn little buggers keep popping up and I don't like it! I got a couple after I had AJ but it was seriously a couple. Two and that was it.

Granted I've been through a lot over the last year but don't I have enough physical reminders? How about that oh-so-lovely 8" scar down my belly? Or the scars from all the IV pokes and blood draws? Do I really need gray hair too? And why is it that it's always those hairs that are extra kinky and don't stay where I put them? They're always the ones sticking straight up and out.

Why don't I pull them you ask? Isn't there a saying if you pull out a gray hair you get three more? I definitely don't need any more!

I have to tell you what a comedian AJ is. The stuff that he comes out with lately, I can't even believe. He hears something once and he remembers it. Then he uses it in the correct context. I find myself asking "where did you learn that?" quite a bit. We haven't had any 4 letter words yet (thank goodness!). We've been really trying to be careful!

One of my favorite things he says lately -- one of his bedtime stories is Moo, Baa, La La La. It goes through the animals sounds. When we get to the horse and I ask him what it says he says "giddy up cowboy". I like it. "Neigh" is over-rated!

And oh how he's been testing us lately. He's been showing his "2-ness". Time outs have become part of our day. Not too often but they're there. I can't complain though he's really good most of the time. He's been playing with other kids a lot more too. I love seeing him talk to other kids. The older girls always seem to like him.

I went to JoAnn Fabric today because they had some good sales on the fleece for the blankets I've been making. I always check the remnant bin when I'm there and I scored big-time! I got a whole bag full of fabric for only $15. I'm going to get so many blankets out of that! Love it!




I love you sweet boy. Forever and a day.

Ryan's Birthday

We had such a beautiful weekend celebrating Ryan's birthday and the March for Babies Walk. I'm grateful that they fall on the same weekend. It really allows us to celebrate an entire weekend.

We all had a wonderful time at the walk. I'll update more on that when I get some pictures uploaded.

On Ryan's actual birthday (5/21) me, Nick and AJ spent the day together. In the morning we went to say thank you to a couple of people that have helped us this last year. One we haven't seen since last May and one is a new friend.

After that we stopped at the store and picked out some balloons to bring to Ryan along with the birthday flag and teddy bear I had picked up a few months ago. We also brought the lantern that Hayden's mom had given us. On the way out of the store Nick was holding the balloons. A butterfly flew and tried to land on the yellow one. Nick moved (he's not a fan on of anything landing on him!) and it tried again. It fluttered around for a few more seconds and went on its way. I smiled. I knew it was him. I knew he was there and I knew he liked the balloons.



The best big brother

The lantern was great. We lit it and it floated like a hot air balloon. After we were sure it had floated high enough and wasn't going to burn Rochester down (!) we watched it soar.

starting to float

there it goes!

glad it kept going and didn't burn anything down!

Happy Birthday Ryan!

an "I'm 1" balloon and of course we had to get a Toy Story balloon!

Later in the afternoon we took AJ to Build A Bear. He had never been. We wanted to take him somewhere special where we would come out with something he could have to remember the day. We looked over the options. They had bears, puppies, monkeys and more. AJ decided that he wanted to make "a froggie". They had the Muppets that you could make. He chose Kermit.

Picking the perfect heart for Froggie

getting a high-five from Daddy after stuffing Froggie

Time for a bath!

All done!

We had a really nice day. It was definitely more happy than sad. I will miss Ryan for the rest of my life, but on this day I got to think about all of the wonderful things that have happened because of him.

I love you sweet boy. Forever and a day. 

Happy Birthday

Dear Ryan,

Happy Birthday Sweet Boy! I can't believe it's been a year. I don't know how it could go so slowly and so quickly all at once. Last May I couldn't think about this day. It seemed like a lifetime away and I didn't know how we were going to make it there.

Well, here we are. We had a fantastic weekend celebrating you. On Saturday we had a big BBQ in your honor. Family from out of state traveled to be here. Friends from the area came too. The weather was 80 degrees and sunny. It was perfection. Nonna took care of cooking and me and daddy got to relax and enjoy the party. AJ had fun with Cole in the pool and Brynn was her smiley self.

Sunday was the March for Babies Walk. Our team came in second place in fundraising for the family teams! We finished at $7,575! A long way from the $1,000 goal we started with. Again the weather was perfect. I got to see Ethan's mom and Hayden's mom there. We all had so much family support. It was really wonderful. Everyone had a great time.

Today we're going to do some special things too. We're going to see someone who helped us so much after you were born and who took such good care of you. We're going to see some new friends who mean a lot to me and daddy. We'll probably go with AJ and make a Build-A-Bear and I'm going to contact the lady to get the blankets I made donated in your name. Of course we're going to stop and bring you some balloons and the special birthday flag and bear we bought. I hope you enjoy all of them.

I didn't think I could make it a year without you here and I owe a lot of that to daddy. When we got married I didn't think I could be more in love with him. Then we had AJ and again, I didn't think I could be more in love with him. Then you were born and I loved him even more, but today I think I love him the most. He's taken such good care of all of us this last year. He's the best teammate anyone could ask for and I'm so glad he's ours.

I want to thank you too. You've done so much for us. Thank you for saving me. I'd give anything to have you back but I know you truly are my angel. Thank you for always looking out for us. I know you do and thank you for the signs you send. I know I ask for them a lot but they mean the world to me. Thank you for helping me get to where I am today. I'm a better mom to AJ and I'm more involved in a wonderful organization. I live life wanting to make you proud and that has made me a better person.

I hope Ethan, Hayden, Anthony and Grandma throw you one heck of a party! Keep an eye out for our lantern :) We'll be sending it your way later.

I love you so much sweet boy. Happy Birthday.

Forever and a day,

Love,
Mom

Ten

I've been spending a lot of time at the cemetery these last two weeks. It's as if something is pulling me there. It feels like it did last year. The weather is beautiful, a slight breeze and shining sun. Often I go and just sit. It gives me a chance to think and my mind usually just wanders from one thing to another.

Last week there was a new baby in the section. Then only 3 days later there was another. It's heartbreaking. Once the temporary markers were placed I learned that it wasn't two babies it was actually three. A set of twins and a singleton.

That makes ten babies that have been buried since Ryan. We're just under a year.

People might think I'm a little over the top with the fundraising and my involvement with the March of Dimes. I walk not only for Ryan but for Ethan, Hayden, Sarah, Colton, Anthony, Ainsley & Evelyn and the ten babies that have joined Ryan in the Christ Child section of Holy Sepulchre Cemetery. Those children are all the motivation I need.

I love you sweet boy. Forever and a day.

Mother's Day

I was not looking forward to Mother's Day this year. I couldn't help but think about what I was doing last year. I had just gotten to the point where I could walk without a walker. I was on a gluten-free diet. My appendix had ruptured about a week before, but we didn't know that's what it was. But I was still pregnant. Ryan was still doing fine, kicking away.

I didn't want to spend the day without him. I don't want to spend any day without him. How do you celebrate being a mom without one of your kids? As usual the anticipation of the day was a lot worse than the day itself. Saturday I was a mess. Plain and simple. A. Freaking. Mess. I was on auto-pilot all day and I was still having trouble.

I woke up this morning and already felt a lot better than I had the day before. There was hope for the day. I was going to do my best to enjoy the day with Nick and AJ. We all had a nice breakfast and took care of a few things around the house before heading to the Lilac Festival. AJ was so excited to take the school bus over.

We had a really nice time while we were there. AJ went on a few rides and got some popcorn. We walked around looking at the crafts and other vendors. It couldn't have been a better day weather-wise either.

After the festival we went to lunch and did a little shopping. The day was wonderful. After spending time with Nick and AJ I wanted to go spend a little time with Ryan. I was just there yesterday but I wanted to go again.

The cemetery was busy, as expected. There wasn't anyone in the section when I got there. As I'm there I realized something didn't look quite right. I thought the same thing yesterday but with my head in such a fog I couldn't figure out what it was. Today it clicked. The ladybug on a stake that we had there for 350+ days was gone. I was crushed. This is the second item that's gone missing from there. Both items are not things that would have blown away. The ladybug was stuck in the ground! Someone had to actually remove it from the ground. It wasn't in the way of anything. There is NO reason it needed to be touched. I looked in the section and didn't see it anywhere. The office will be getting a call from me tomorrow. I know they can't do anything but they need to know what's going on. What kind of person takes something from a cemetery? And the children's section no less?!

I wish the day didn't end the way it did but I did enjoy the morning and afternoon.

To all you moms out there -- whether your children are in your arms or in your heart, I hope you enjoyed the day.

To my sweet boy, I love you with all of my heart. I miss you. Forever and a day.  

Inspirations

I added a new blog to my blog list just a few days ago. I'm sure many of you had heard about it. It's Avery's Bucket List. Avery was born with SMA. Had you heard about SMA before? I already knew what it was. I knew because of a mom who is part of the same on-line community as me. We've been on this website for years and Catherine has been sharing Sophia's story starting with her diagnosis. It was out of this diagnosis that Sophia's Cure was born. This mom (and dad) had just received an awful diagnosis for their sweet baby girl. They didn't let it knock them down, they are fighting back.  They've raised so much awareness about this disease and have done AMAZING things to help get funding for a gene therapy that is being developed.

That brings me back to Avery. Avery was also bringing awareness about SMA to the public. Her story and blog were on numerous news outlets throughout the country. Sadly, Avery lost her battle with SMA very suddenly on April 30th. But the awareness continues. Avery's family asked that donations in Avery's name be made to Sophia's Cure towards the gene therapy research. I just got an update that they've collected more than $89,000 in Avery's name since her passing and that number is growing quickly! And even better is that an anonymous donor who had previously donated $400K to SCF pledged to match all donations made in Avery's name up to $500,000!

Those are huge numbers with huge potential. There are so many kids out there still fighting this disease -- Sophia included, she turned 3 years old earlier this year! This has the potential to save so many lives. I can only hope that seeing all of this money raised in Avery's name brings her family a little bit of peace through all of this. I know for me, seeing that total grow after Ryan was born was one of the things that kept me going.

Everyone has been so generous with helping us raise money for the March for Babies Walk in memory of Ryan. What is probably not known is that it was Catherine and Vinny who inspired me to set something up in Ryan's name after he was born. I couldn't sit and let our situation be in vain. I remembered the courage that they had when Sophia was diagnosed. I wanted the same for us. I wanted to make changes. I'm so proud to report that as of today $10,053 have been raised for the March of Dimes in Ryan's name (between the Preemie Band we set up and out fundraising for the MFB Walk). All of that in just under 1 year. Thank you to each and every one of you -- no matter the size of the donation it all means so much.

It's really amazing how much someone you've never met can inspire you. With that, please be inspired. Please take a minute and learn about SMA. Check out the blogs and make a donation. Great things are happening -- don't you want to be a part of that?