Today I’m lost, yesterday I was lost too; and tomorrow, we’ll that’s not looking good either. Quite frankly, I don’t think I want to be found. Being found means I’m ok moving forward without you. But I’m not. I really missed you for Easter. Another holiday of many I’m going to spend without you. Although you had the most ultimate Easter, I still selfishly wish you were here.

I just want to go back to November 29 and all the days before that, to hold you, love you, and kiss you. To try and fix you and make you better. I just want to hold you again. I see your sweet face in photos and I break, every single time.

I can go days were I think I’m ok and but then I endure weeks where I’m frustrated and sad. I’m forced to move forward because time doesn’t stop. I’d do anything to be frozen in time with you.

If I could go back, I’d change it all. I’d work less and hold you more. I’d cry less when you were here and save it for when you’re gone. I’d sleep less and love on you more. I’d do it all different, if only I knew.

My compass keeps spinning, it doesn’t know where to send me or how to move me forward. I’m completely lost without you. I need your love and hugs. I hope you always know how much I love you. To the moon and back, forever!

This is a photo from Zane’s last hospital stay, also my last stay at the Ronald McDonald House.  For the last 3.5 years we had been in and out of the hospital, the Ronald McDonald House has provided our family a place to stay, totally free, while providing us everything we needed and then some.

I had a private apartment room where I could go and relax or cry in private, a place where my family could be together when we were so far from home. We also had meals, activities, laundry room, etc. There really wasn’t a better place to stay while inpatient.

On top of everything being free, we also go to meet other families and hangout in the penthouse during free movie or craft nights.

If it wasn’t for the Ronald McDonald House, Zane would have had less time with his siblings and dad, I would have lost a little more sanity, I would have went more days without eating, our family would have been broken more times than not. I can’t even stress how important it was to be able to have the whole family there, together, during this difficult time. This made it possible!

I want to make sure that the families that are staying there and travel the paths we did, continue to have the resources available at the Ronald McDonald House that we did. I want to pay it forward in memory of Zane and in thanks for us. All of those who are able to help us support them mean a lot to us. I feel like we have a huge family worldwide.

Zane brought strangers together and I want to continue to have you all in my life. He made the world a better place and I want to continue that. Thank you to everyone who continues to send love, support, and for all the genorosity. Days are still tough, but I am tougher!

Here is a letter I received from the last donation we made to the Ronald McDonald House

Here is a link to the current fundraiser for RMH. Keep Zanes memory alive while raising money for others to have a Home away from Home!

https://www.booster.com/ronaldmcdonaldhouse?share=2221458699882997

I love this photo. Not only because it shows the love I have for my son, but because it has me in it. I was so busy documenting Zanes life behind the camera, I forgot to get in front of the camera too. I know that happens with a lot of people, but when you lose someone the guilt and regret start to set in. This photo happened to be taken by my cousin, who’s also a professional photographer, during one of our family events. Thank you Jen!

As I was making posters for Zanes funeral, I was pulling all the photos of Zane and his friends and family. Someone made the comment, where are the ones of you and Zane. It made me want to burst. I was sad and it made me even more sad. We knew Zanes life was going to be short and I made sure to get photos of him with all the people who impacted his life and who’s life he impacted, but I never once thought abo
ut being in the photos.

Today is a hard, but special day. It’s not just St. Patrick’s day, it’s also Trisomy 17 awareness day. Having four people in our family with trisomy 17 makes it extra special. We wish Zane was here with us.

Happy St. Patrick’s Day!

Zane on St. Patrick’s day 2015

Our Three trisomy kiddos

2014

2015

Life is hard without Zane. Terribly hard. When he was born we changed our lives to fit his. Although our lives felt hectic and exhausting at times, I loved every minute of it. I love a challenge and our lives were challenging at times. Although I couldn’t have asked for a better life. Now I’m lost. I got lost on November 29 and I have yet to find my way. I’m still searching.

This month was particularly hard. I started back to work, full time. I didn’t ease myself into it, I just flew into it, not really ready, but I don’t think I would have ever really been, even if I waited.

I added Zanes last butterfly bead to his beads of courage. I plan to write about that later.

I had to take my daughter to an appt at Children’s. Walking into the hospital brought back smells I never thought I’d miss, and made me tear up. The memories were endless and hard. We were seeing a doctor who Zane had seen when he had GI issues. That was rough. Then he asked how Zane was doing. I’m not really sure how I didn’t lose it right there. It was rough. So very rough. And to think, we have to do it all over again in a few weeks.

I visited the RMH to deliver all the wonderful donations we received. Going up the elevators was bitter sweet. We had lots of goodies for rhe families, but the memories were hard. I’d live there if it meant having Zane back.

I attended a support group for Zanes nursing agency by myself. I haven’t attended anything that had to do with Zane by myself since November.

I attended a viewing for another little boy who left too soon. His mommy works for Zanes nursing agency and I had talked to her a few times before when I was visiting the agency. I wanted to try and be strong for them even though it was hard. Instead I cried a lot and hugged his mommy. Her hugs helped me too. I hate seeing another family go through this too. It’s not fair.

I think about Zane 24/7 and everything reminds me of him. He was our life. I get angry a lot. Blame myself and fight with myself a lot. Struggle with guilt on top of my grief. The only thing I want is to make sure Zane continues to be .y super hero and encourages others to give and love with their whole heart.

From the day we had Zane, we had an amazing support system. Family, friends, and even strangers. We always had what we needed. I know that not everyone is that fortunate. So I want to pass on our fortune to others. I want to send care packages to families in need. I want to help places like the Ronald McDonald House and Children’s Hospital who were so generous to us and became our second home. I want to turn my anger into love and support for families who may be struggling now. I want everyone to remember Zane for his courageous acts of kindness and genorosity. He is the reason behind why I do what I do. Be kind to everyone, give to those less fortunate, love others for who they are, do it for you, do it for Zane.

If you would like to help us help those staying at RMH and Children’s Hospital you can send items to
OUR AMAZING ZANE
PO BOX 39
SEWARD PA, 15954

We are looking for travel size items such as:

Dish soap
Laundry pods
Individually packaged snacks
Shampoo
Conditioner
Soap
Anything you may take when you’re going away

Thank you for Remembering Zane and giving back in his memory.

We had exactly 3 years, 5 months and 1 day with you. It was November 29 that you took your last breath in my arms and by your daddy’s side. And this year, we are lucky enough to get an extra 29th to celebrate you and all that you gave us.

I won’t forget the time you gave me. You gave me strength when I felt weak, you gave me love when I was lost. You taught me how to get up when I’ve fallen, and how to love with your whole heart, the whole damn thing!

You loved so unconditionally, and never knew anything else. You could see in that smile how much every person meant to you. Your heart was the biggest and you were the bravest.

I struggle these days with sadness and fear. But then I look at your photos and it reminds to be happy and strong because that’s what you would want and that’s the person you were.

You faced many battles and you always came out on top. You knew just when I needed you and you were always there. These days without you are tough, but I’m learning to be strong for you.

I’ll never forget the days you gave me strength, love, and hope. The days you warmed my soul with your smile. The days that were brighter because of you. I will live for you. I will love for you.  I will be strong for you. I love you my son! To the moon and back, forever!