Beauty in the Ashes

 

To all of those who have supported us and followed our journey on my fitness website and social media with our sweet and precious daughter Angelina Hope, I am saddened to share that she has passed into the loving arms of Jesus on May 25th, 2014.(Due to heart complications with her hypertrophic cardiomyopathy ) I was hesitant about sharing this journey, God has boldly placed this on my heart over the last year, and am overjoyed as I have finally opened up my computer to find a small story on Angelina’s life.  A story that we can continue to share, to bring hope, to have for Ava and Amelia as they get older to read and to reflect on during the healing process. The texts, e-mails, and messages have helped carry us through these past 5 months and are appreciated beyond words. To the nurses who cared for Angelina, thank you isn’t enough. We have received countless messages about how Angelina’s story has impacted lives, mended relationships, and brought people closer to our Lord Jesus Christ.Here is what’s been on my heart this month.I can’t believe it’s November.With every falling leaf, deep blue October sky and for some reason those extremely strong scented pine cones that giant eagle and Marc’s put out two months before Christmas I am reminded constantly of our dear sweet Angelina. It was this time last year that I was heading to the Doctor every 2-3 days. We knew of Angelina’s congenital heart defects and possible down syndrome diagnosis. I remember last fall as if it was just yesterday. The memories bring a flood of constant emotion that I can’t explain. I remember canning 20 jars of salsa, tomato soup, yellow peppers and pizza sauce saying to myself. “We can do this, God wouldn’t give us anything we can’t handle.” It’s how I got through, constant prayer and faith. I asked God to protect Angelina in the womb and after she was born. I asked him to give us all strength, for our path was uncertain with our sweet baby.

We were beyond thrilled to meet our little bundle of joy. I remember the first time Angelina locked eyes with me. Angelina had the most incredible deep blue eyes with tiny white spots around the outer part of her iris ( called brushfield spots which can be seen in children with down syndrome). It was as if she looked deep into my soul and just knew me (something my mom would also often say as well as a special friend of mine). Angelina had a way about her, she could speak without even saying a word.

NICU November 2013

NICU November 2013

The first night in the hospital as we laid on our hospital beds learning of Angelina’s diagnosis. I remember Dennis looking at me and saying: ” I know we prayed for Angelina to be healed, but I truly believe she came to heal us.”

I remember really struggling that first night. I wanted Angelina to be in our hospital room and not in the NICU. I wanted to be able to snuggle her and nurse her. I was unable to. It was in that moment that I went and stayed with her and fed her through a little syringe while she was in an incubator. It was those first moments with her in the middle of the night, after a 12 hour labor and walking the halls of the hospital during my induction (refusing an epidural because I wanted to be there for her after labor) and the most tired and emotional state of my life that Angelina taught me how to love. A love that runs so deep, a love that is unconditional, and a love that is everlasting. This type of love exhibits how Christ loves us.

“So that Christ may dwell in your hearts through faith; that you being rooted and grounded in love, may be able to comprehend with all the saints what is the width and length and depth and height. To know the love of Christ which passes knowledge; that you may be filled with all the fullness of God.” -Ephesians 3:17-19

NICU November 2013

NICU November 2013

We loved on Angelina as we began to get to know her. We never allowed her extra chromosome to define her and will continue to take a stance to share her story and spread awareness. She was our daughter that happened to have one amazing extra chromosome.  She had the cutest chubbiest neck, a crazy toe (two conjoined toes), a sweet little tongue that always was sticking out at us(which we LOVED and miss so much) and was the most incredible snuggler. She was the most pleasant little baby to be around. Amidst the storms during her life, her countless doctors appointments, an urgent hospital stay, a rare and complex diagnosis that was unexpected and an open heart surgery reflecting back Dennis and I constantly say to each other that this was Angelina’s journey “ You formed me in my inward parts; you covered me in my mother’s womb. I will praise you, for I am fearfully and wonderfully made; marvelous are your works and that my soul knows very well. My frame was not hidden from you, when I was made in secret, and skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed. And in your book they all were written, the days fashioned for me, when as yet there were none of them.” -Psalm 139:13-16, how God intricately formed her and she brought so much joy to our lives and continues to do so. This is part of our family’s story. Which is part of God’s plans for our life which is a part of something so much bigger.

“But the plans of the lord stand firm forever. The purposes of his heart through all generations.” -Psalm 33:11

When I think about our family and how close Angelina has brought all of us, it truly brings me to my knees in a utter state of emotion. Helping us, being there for us, and supporting our every step. They loved on Angelina in such a remarkable way. That little girl is so loved and will continued to always be loved. I chuckle as I recall a time that my sister-in-law came to the hospital and stayed with me in the NICU. I was going on 20 days of not a lot of sleep, never recovering from childbirth and we both slept in Angelina’s room” well tried at least”. Monitors buzzing, pumping, the squeaky chairs, a crazy floor, constant commotion, and Angelina topped it off with pulling out her feeding tube at 2am. We laughed together most of the night as we come to a point of over tiredness. She was such a feisty little thing that night. I chuckle when I remember Dennis famous last words. “She’s a VOLPE, SHE DOESN’T NEED A FEEDING TUBE.” She indeed learned to eat a bottle on her own with lots of patience and help from amazing therapists.

NICU November 2013

NICU November 2013

Which brings me to my next thought. Ava and Amelia shared a bond with Angelina that I can’t describe. The last week of Angelina’s life she was extremely fussy and uncomfortable. My mom was able to see Angelina completely change her mood the moment Ava and Amelia entered the room at the hospital. She stopped crying the moment she heard their voices and completely turned her body around reaching for Ava. Ava was able to get in bed with Angelina and bring her so much comfort that day. These are the moments that we cherish. These and countless other memories are how we remember our sweet baby girl.

Ava and Angelina in the PICU 2014

Ava and Angelina in the PICU 2014

In Angelina’s final days I came to a realization that hope isn’t how we want  situation and circumstances to turn out. Hope is placing your total trust in Jesus. Hope is trusting that his hand is upon any trial, suffering or situation in our lives. Life in this world is tough and by hoping in Christ and being in constant relation with him, we are able to find the strength no matter what hardship comes our way to venture the  path he has laid before us and our final stop is heaven.

“Our soul waits for the Lord. He is our help and our shield. For our heart shall rejoice in him. Because we have trusted in his holy name. Let your mercy, O Lord, be upon us, just as we hope in you”. Psalm 33:20-22

For the rest of my days I will never ever forget what Dennis brother said to us the night Angelina gained her wings and entered the gates of heaven. “She did in 6 months what it takes most people to accomplish in a lifetime.” “Honor her memory by how she changed you.” We will spend our days honoring Angelina’s life by how she indeed radically changed our lens of thinking. Seeing life with such a different perspective.

Appreciating the beauty and hardship in life. I have come to a conclusion that we all will suffer. At some point we all will endure difficulties in life. We can either allow them to slowly kill our soul and become bitter or we can allow them to transform us. To grow us and to find joy in life’s hardest circumstances. I found this scribbled on a piece of paper and I have no idea where I found it: “take your deepest sorrow and weave it into a pattern for good.” Through our healing we will become refined and  help others heal and overcome obstacles. God reminded me weeks after Angelina passed to continue to press forward: “I press toward the goal for the prize of the upward call of God in Christ Jesus.”-Philippians 3:14

I recently have been on a reading kick during this season and am reading a book called: Restless By: Jennie Allen.

Jennie writes this: ” Sure our stories lead us toward our purposes, but they also make us into people strong enough to fulfill our purposes. To build a picture of your story-the events that have shaped you-is a powerful and beautiful thing”.

This is Angelina Hope’s story.

Our Angel April 2014

Our Angel April 2014

“This hope we have as an anchor of the soul, both sure and steadfast….” -Hebrews 6:19

When we reflect and look back on Angelina’s life there was so much purpose, strength and beauty in her life. Each day we think about you every moment little girl, and will continue to, until we join you and hold you again in heaven. Little girl your life was filled with so much beauty. You left such beauty in your ashes. We miss you more than words can describe. We are trying to figure out what our new normal looks like without you. We love you so much.

Words can’t describe how thankful I am for my beautiful friend Nicole who captured this image and many more with our sweet baby girl

 

 

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