That sound. If I’m driving, trying to sleep, outside or at my sink washing a load full of dishes. What is it about that sound. That sound its debilitating. If you are on the phone and it’s nearby you have to scream a little louder.

There is something about the sound of a helicopter that gets me every time. If I hear it at night or in the early morning. I get instant flashbacks from my time at Akron Children’s Hospital.

Angelina’s room was right under the helicopter pad in the PICU. I remember countless times Dennis and I would be sitting on the patio eating at the Ronald McDonald house trying to eat a meal and talking about Angelina’s progress and we would watch them land and take off.

It was pretty awesome to watch at first…

Until we realized that those helicopters are coming and going a lot. That we weren’t the only ones with a sick child. It started to break my heart. I started praying each time as I  would watch the doctors and nurses run to get the patient off the helicopter.

The Thursday before Angelina passed away Ava came to stay with me. She thought that staying at the Ronald McDonald house was the absolute coolest thing in the world. Ava and I gave Angelina a bath that day, bought a bunch of toys and fake nail stickers in the gift shop and watched helicopters land and take off. If you know my daughter Ava she is strong-willed, determined, extremely protective of Amelia and Angelina and has such a nurturing soul. She insisted on laying in bed with Angelina (which Angelina went from extremely fussy to happy the moment she heard Ava), was present at rounds, and was very happy to be with us at the hospital that day. Ten months later she tells me often: ” Mom remember the helicopters and all the sick babies they bring to the hospital, I want to be a nurse and help those babies, just like Nikki (my brothers girlfriend, remember Angelina’s nurse they met at her bedside:0).” We are very thankful for  the Ronald McDonald house and how they helped us tremendously during our extended stays at the hospital you can read more about this organization here:http://www.rmhc.org/about-us

This memory it’s hard, I want to go back to that time in the hospital. It was the last day Ava spent with her baby sister. That night I remember Ava didn’t want to leave. She wanted to stay another night. She screamed as we buckled her in her car seat. Amelia started screaming also. I cried on my way back into the hospital. I longed for my family to be together. I prayed for total healing for Angelina.

Grief it chokes out all the noise in your life.  It’s always present in your life,  you never know when it’s going to strike, one moment you are fine, the next pretty angry, one moment you can’t even drop a tear while someone may be spilling their heart to you and the next you literally are on a break down of uncontrollable crying and you can’t stop. You are almost hyperventilating gasping for air.

You have let it out. I often tell my husband, that grief it debilitates me. I can’t think, remember, get anxiety, stay organized or on task. Once I let it out, I feel a little bit of relief. I release the bad, the ugly,the extremely dark, and then I am able to focus on the intricate beautiful, purpose driven details of Angelina’s short life. I have seen baby steps in my healing process although some days seem like two steps forward and while other days two steps back.

Over the last ten months we have done a lot of things to remember Angelina. When you lose a child you want to continually celebrate their memory. Talk about them often and especially how they changed you.

I have documented a series of pictures on our journey of celebrating Angelina’s life each day. We look for Angelina through out each moment. Dennis and I constantly talk a lot with Ava and Amelia about her everyday. Last year on this day we were celebrating our first world down syndrome day. We will continue to celebrate this day every year for you our sweet Angelina. We will speak about how amazing that extra chromosome is, educate and spread awareness to the world about down syndrome. You can find out more here about World Down Syndrome day: https://www.worlddownsyndromeday.org

This first picture was a month to the hour and exact minute Angelina passed into our fathers heavenly hands. We were on vacation with my aunt, uncle, and cousins. Walking back from the pool I looked down at my watch and it was like a dagger smashed through my heart. Four weeks since she had been gone I thought. They seemed like an eternity. The girls screamed mom look: I looked up and saw the most beautiful butterfly land on a flower. It spread its wings and Ava and Amelia were able to touch its wings. I felt such a supernatural peace that butterflies would be a symbol of Angelina. It feels like an eternity since I’ve seen her but I get to spend eternity with her. It was yellow and National Down Syndrome colors are blue and yellow. Last summer we saw butterflies every time we were outside. We saw them at dark, on the beach (so windy) and at times when I would be so emotionally low one would fly right in front of me. Angelina truly reminding me she is free and flying amongst heaven, our Angel.

Right before we left for the beach I felt the urge to grab a small amount Angelina’s ashes. We had hoped we would be able to take her to the beach last summer. Before we left we were able to leave a very tiny amount of her ashes at sea. About a month later Ava asked me randomly: “mom when we were at the ocean what did you put into the water.” I told her remember that and some day sweetheart I will explain. On the way to the beach this song came on the radio and it has stuck with me over the last ten months: Thrive: Casting Crowns

My sister-in-law and I decided to run and train for the July 4th race. God bless her heart she made these amazing shirts for our family and friends to wear the day of the race. She surprised me a few days before and it brought tears to my tired eyes. I’ve always been a runner and loved racing but now I truly have a cause to run for. I run for the remembrance of those taken to soon by hypertrophic cardiomyopathy and to spread awareness about down syndrome.

Then there was the tough mudder. Ya, I always said no to into those crazy mud races because I was worried someone would get hurt. I mean don’t get me wrong. I am a farm girl at heart. I love the mud and I’m not for a second afraid to get dirty and push myself to the limit when it comes to working out and  competing. We decided to do it and it was such an incredible bonding experience to do together with family. We had a blast and I think I picked mud out of my hair for weeks. We felt that we could accomplish things even through the pain and sorrow.

Dennis and I decided to get tattoos together. Angelina is forever etched on our lives, our hearts and truly been a catalyst for change in our lives. Getting a tattoo was really never anything I really felt the urge to do until Angelina passed away. Good thing for good friends who help you from chickening out. The thought of something on my body forever kinda freaked me. The fact that some random person was tattooing me was even stranger. Until Dennis walked in and the tattoo artist realized he tattooed Dennis Italian flag eleven  years ago! It was for Angelina and each day when I am feeling discouraged its my outward symbol of  clinging to hope that God will help me navigate through a very tough time in my life. Telling my dad was a different story. After eating Sunday family dinner and him not noticing my tattoo at all Dennis informed him of my new tat (if you know my father he is pretty old-fashioned). He took it like a champ and everyone really valued why we felt the need to do this together.

Angelina spoke from the heaven on Dennis 30th birthday as we sat in the drive way talking about how incredible she was. She gave Dennis this amazing present from the heavens.

The gym that I work and workout at often, bought a tile and an apple tree for us to honor Angelina with.

Angelina’s birthday and Christmas came and passed. It seemed very slow and painful. Over the months I have done a lot of processing. I am going to be honest I am angry. I scream out to God a lot.  I have mentioned something along these line before. I can allow the passing of my daughter to paralyze me. To choke out the noise, life, the good, God, and my family.When I think of how fast a helicopters propeller spins as it flies, I sometimes feel like my head, heart and life are spinning in a hundred different directions at once. I have allowed grief  to spin my life totally out of control at points throughout this process. God picks up my brokeness up off the floor along with my husband, family and close friends.

When I get up off the floor tiny parts of my heart have mended and the scar tissue, it’s still there and will always be but it’s a matter of learning how to navigate amidst the extreme pain. This last week I felt that God was saying: ” Michelle she is at peace and she was a small glimpse of heaven in your life”.

My life for a second stops spinning, and I see that the pain is a catalyst for growth. I can take this experience and use it for good. It doesn’t mask the pain but it allows me to live life fuller than I ever have. It allows me to be reminded of how Angelina changed my heart and how I perceive situations that arise each day throughout my life much differently.

Angelina taught me how to be bold, to love like I have never loved, to not only share my faith but to be more intentional about living it out, to look for the good in every single person I meet, to live out my passions, to not only dream but to go after my dreams even if I fail, to embrace my husband, children, and family here on earth, to be content in life, to  be thankful,to be myself-the unique person Christ created me to be, and not to worry about what people think. Because Christ is the only person I have to impress,to trust, to worry about today and not the next five years, and tell people about Angelina always and the depth of her short little life lived on earth. My friends, I get asked often how many children I have. I have three. One just happens to get raised by Jesus. The author and finisher of our faith.

This is what we can do to heal, to live the way she taught us. Just as Christ lives in our hearts so does, Angelina.

I read a book on grief titled: A Grace Disguised, by Jerry Sittser. Jerry talks about his journey through grief (he lost his wife, wifes mother, and his daughter in a car accident. They were hit by a drunk driver).

I can relate with him on every level in this short few paragraphs from his book: ” Yet the grief I feel is sweet as well as bitter. I still have a sorrowful soul; yet I wake up every morning joyful, eager for what the new day will bring. Never have I felt as much pain as I have in the last three years; yet never have I experienced as much pleasure in simply being alive and living an ordinary life. Never have I felt so broken, yet never have I been so whole. Never have I been so aware of my weakness and vulnerability; yet never have I been so content and felt so strong. Never has my soul been more dead, yet never has my soul been more alive. What I once considered mutually exclusive sorrow, and joy, pain and pleasure, death and life-have become parts of a greater whole. My soul has been stretched.

Above all, I have become aware of the power of God’s grace and my need for it. My soul has grown because it has been awakened to the goodness and love of God. God has been present in my life these past three years, even mysteriously in the accident. God will continue to be present to the end of my life and through eternity. God is growing my soul, making it bigger, and filling it with himself. My life is being transformed. Though I have endured pain, I believe that the outcome is going to be wonderful.  

The supreme challenge to anyone facing catastrophic loss  involves facing the darkness of loss on one hand, and learning to live with renewed vitality and gratitude on the other. This challenge is met when we learn to take the loss into ourselves and to be enlarged by it, so that our capacity to live well and to know God intimately increases. To escape the loss is far less healthy(and far less realistic, considering how devastating loss can be)than to grow from it.

Loss can diminish us, but it can also expand us. It depends, once again, on the choices we make and the grace we receive. Loss can function as a catalyst to transform us. It can lead us to God, the only one who has the desire and power to give us life.” 

As We celebrate World Down Syndrome day, We celebrate Angelina. To the Ma Ma’s I have met on this journey you and your children are amazing! I will stand up and spread awareness for your children and continue to always support and pray for your children, you and your families. The Down Syndrome Community is such an incredible place and I have been blessed to know you all.

As time moves on the painful reminders have turned into gorgeous ways we can allow Angelina’s memory to live in and through us each day. From helicopters, to butterflies, tattoos, road races and mud runs she may not be here in flesh but she is always with us in spirit.

Blessings, Michelle