Unless you’re in preschool, making friends after having children is tough. After you have children you have two types of friends, those who have children and those who don’t. You find yourself choosing your friends with children more often because they get you. They understand you and don’t get mad when you need to cancel plans because they woke up on the wrong side of the bed today; but you don’t even need an explanation because they get you. They’ve totally been there.

The same goes for parents of medically complex children, except sometimes there are more times you can’t than you can. Really, the only ones who understand you are those who are walking your path. When you get together no one asks questions or needs to ask what took so long. You develop this special language that doesn’t even require words anymore. A simple nod as your passing in the hall and your heart melts “they totally get me”.

Play dates aren’t planned, they are always spur of the moment and usually disorganized. Or only happen when you end up inpatient together in the hospital.

You don’t mean to shut out your other friends, and they still mean the world to you, but you develop a comfort level with mom’s who totally get you. Besides there aren’t many people who have spare feeding bags and mickey buttons lying around when you’ve forgotten to place your order. Thank you for being my flock!

In memory of Zane: 2012-2015

I had always been the honest, dependable, you can count on me type of person. I want to help people and I love a good challenge. If there’s a way I I’ll find it. I’m still like that, just a little broken; like an old washing machine that still cleans your clothes just fine as long as you kick it between cycles. I kind of feel like that, I run in cycles. Some cycles are good, some are bad, and some are just awful. But I still work. I’m still reliable, I’ll get the job done, but it may take a little longer. All my life I’ve been blessed. I’ve never felt broken, so I used that strength to bless others. To help those who were broken, or needed a minor repair. That was until I was broken.

I never expected to to be here; no one does. I’m blessed because I have my amazing husband, our two other children, I’m blessed to have been welcomed back to two different jobs when others are struggling to find one. I’m blessed to be able to continue to help others, but I’m still broken. My heart is broken, my faith is tested, and my journey is different. I’m still me, just a little broken.

                   Remembering Zane
    June 28, 2012 – November 29, 2015

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!

I have scars and wounds that will never heal. My heart has been broken. I struggle daily. My husband and kids are the glue that hold my heart together. Without them, I’m just broken, completely broken. It’s hard to go on each day when your body is numb. But life keeps going on even when your life has stopped.

I’m battling demons every single day. The anger and the sadness are relentless. They defeat me. I have to physically force myself from bed daily and just to complete daily routine tasks. I have to hide the anger and have to pretend to be someone I’m not. Pretending life is ok and everything is fine. Meanwhile I’m hurting so deeply on the inside. I try to think of what I did to deserve this.
Many people say that time will heal all wounds and life will get easier. How can going on without one of your children get easier. I don’t think it’s going on that gets easier, it’s the pretending that gets easier.

Miss you! Love you to the moon and back forever!

              Happy Valentines Day!

I love holidays, all of them. I will find any reason to celebrate with friends and family. And everyone deserves a cake on their birthday!

Every holiday since Zane was born has been different, but still amazing. The first few holidays were spent being hospitalized, and we thought being split as a family during the holidays was tough. We didn’t realize at the time that we would eventually be temporarily, permanently split.

Once we received a “terminal diagnosis” for Zane, the holidays became harder. (I put terminal diagnosis in quotes because we never received an actual diagnosis, but we’re told his brain was shrinking and we weren’t sure how much time we had left with him.) Zane was also getting sick more often. Most holidays we weren’t able to take Zane out like we used to. Daddy would care for Zane at home while we went to see my family in the morning and I would care for Zane while he spent the rest of the day with his family. We could have had a nurse sit with Zane, but I didn’t believe in making nurses work the holidays. They deserved time with their family and Zane deserved to be with his family.

Each holiday was spent celebrating the fact that we had another one with Zane, but also some grief that it could be his last. For the last two years each holiday was bitter sweet. If Zane was well enough we spent it together with our extended families. If he wasn’t we spent it split up so Zane had at least one of us there with him. As hard as the holidays were while Zane was here, they are even harder now.

This Christmas was the very first holiday we had to spend without Zane. I knew it would be tough, but I was able to keep myself busy and stay strong for our other two children. I really thought Christmas would be the hardest being the first holiday without Zane. However, when New Years Eve night rolled around I lost it. All of it. I cried uncontrollably for a really long time. Going into a new year without Zane was so much harder than any holiday without him has been so far. Just the thought that all 2016 photos would be void of his physical presence and sweet smiling face hurt so much. This year has also had a lot of trying days and days where I wasn’t sure I would make it. But, it’s also has some better days too. I’m still sad alot, but, manage to smile more too.

1,249 tomorrows was all we were given with you. What I wouldn’t do for just one more.

We take tomorrow for granted and always expect it to be there for us. If tomorrow could talk I think it would say, “don’t wait for me, I’ll always be here, but you will not.” Tomorrow is always tomorrow, before it becomes today, and then yesterday. It has this way of always being there for us, until it isn’t. Time is taken for granted and promises are made we can’t always keep.

The photo above is the very last photo of Zane that I took. I knew how sick he was and yet I still said, “there’s always tomorrow.” This photo was taken Friday, November 27 and we got two more tomorrows before we had no more. No matter how many photos I took, I’m always going to wish I had just one more. Just one more photo, one more kiss, one more hug, and one more tomorrow. 1,249 tomorrows wasn’t enough. I’ll always want just one more tomorrow. We love you you to the moon and back, forever!

                Happy Birthday, Daddy!

Today we get to celebrate 11,688 tomorrows with Zane’s daddy. Happy Birthday to the best husband and father. Thank you for being my rock!