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.
|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.
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
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.
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.
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.
“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.
I can remember four short years ago when my husband and I were searching for a house to buy. We looked for quite sometime and at times I would feel hopeless. We were looking for a small bungalo that we could make our own. We wanted a large yard and had picked out a few different school districts that we wanted to be in.
We spent over a year and half looking on and off. Until one morning we in our eyes struck gold. We noticed a house that had sat empty for sometime but was in a perfect location and had a wonderful backyard. I’ll never forget walking through the house with our realtor at the time. “You like this house?” my husbands mind racing I know this because he is a silent thinker paused: “yes, it has a lot of potential.”
We went home that night and kept looking at the pictures online and my husband began to come up with a list of idea’s of the variety of things he could do to fix up this little old farm house and make it our own.
God was on our side that Thanksgiving as we placed our bid and took a leap of faith buying a house that had all it’s copper plumbing cut out and stolen. We weren’t able to move in right away and we had a lot of work on our hands. With the help of a extremely loving and helpful family on both of our sides we started chipping away at our little old farm house.
first we stripped everything out of this house, demoed walls, drywalled, painted, put in hardwood floors, and new carpets. The upstairs bathroom looked like the color of boogers. We gutted each bathroom and remodeled those. We added a little barn off the garage for Dennis to use as a place where he could work on his carpentry projects. The outside needed a lot of TLC as well and each summer we work on something making improvements and creating it a place for our family.
Throughout this process we have learned a lot about patience, wise spending, and that although we want our house to be completed we need to remember what comes first in the hustle and bustle of life. I can remember on several occasions being a little angry that it wasn’t finished. Complaining to my husband and well being a bit of a demanding wife. I want this finished! It felt hopeless! Dennis always reminded me and still does that it will someday be finished but first and foremost is our relationship with God and secondly family.
“Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house, yet it did not fall, because it’s foundation on the rock. But everyone who hears these words of mine and does not put them into practice is like a foolish man who built his house on sand. The rain came down the streams rose and winds blew and beat against that house and it fell with a great crash. When Jesus finished saying these things, the crowds were amazed at his teaching, because he taught as one authority, and not as their teachers of the law.” Matthew 7:24-29
Dennis has shown me that life is not all about completing tasks but about the delicacy of family. I have never met a person who unconditionally at any moment will leave anything and everything he is doing to go help anyone who is calling on the telephone. He is an incredible example of how we should live our life out for Christ.
“Serve wholeheartedly, as if you were serving The Lord, not people because you know that The Lord will reward each one for whatever good they do, whether slave or free.” Ephesians 6:7-8
We have been cooped up in this little bungalo for six long months. Due to Angelina’s heart condition they recommended we keep her away from sickness to help keep her healthy for surgery. You can read more about our journey with our third daughter in these posts: Angelina’s Journey, Angelina’s Journey, Angelina’s Journey , Angelina’s Journey For almost SIX MONTHS. Yes, we have been COOPED up in this house. It’s been incredibly hard to put our life on hold and I have felt many days of hopelessness.
Until one day as I was sitting in my glider feeding Angelina God blessed me with a new way of thinking about this little bungalo. Angelina has impacted our lives in so many ways. This one particular way I thank her for. All that time I spent feeling hopeless and worrying about things that really aren’t to important in the scheme of things. After that moment it’s like my mind was cleared of this particular way of thinking and a rush of memories flood my mind as I perform the day to day tasks around this little bungalo.
The Simple Things. It’s a little trinket we have had our house for a long time. Dennis and I have always decided that we wanted to live our life out by this motto. Was it true because I know he had been doing it but had I?
Angelina had taught me to begin to learn how to appreciate the simple things in life. Instead of looking around our house and thinking man I wish our kitchen was finished and what the next task at hand is I see what life we have brought this little house.
Pictures filling the walls of Ava as a baby. She was only 18 months when we moved in here. Months later I would become pregnant with Amelia. Spaghetti fingers prints on our white wood work, scratches on the hardwood floor from Ava and Amelia riding their bikes around the house, memories of the long nights Dennis and I would work on the house together talking and enjoying being together, many wrestling matches with the girls before bed, daily squeals when someone is in the driveway for a visit, the pitter patter of tiny footprints on the hardwood floor, and diapers crunching as they headed downstairs in the morning, countless pots of spaghetti sauce splattered all over kitchen burners, packing the whole family and children in our little house for family get togethers, i can recall being in labor with Amelia as I walked thru our kitchen to dinning room and living room for 3-4 hours before heading to the hospital, stories read and craft time, the girls reminding me that it was time to workout, our chickens, campfires, and I could go on.
These things I hold so dear to my heart these days. This home has been a safe haven for us. I recall the day we got Angelina’s diagnosis and not being able to move from the couch, packing my bags the night before I was induced, fear, anxiety, and heart ace. I can remember how scared I was to bring her home for the first time in fear she would stop breathing, that I would screw up her medications, and that I would not be able to care for her.
I had many moments of feeling like I could not care for her in the beginning. Moments of “How Am I Going to Do This?” Moments of pure hopelessness. It’s as if our lives were in a snowglobe and instead of shaking it up someone has thrown the globe on the ground and the snow globe is completely turned upside down. Everything we once knew in life has been drastically changed.
I think how am I going to do this, God reminds me each time Michelle: “You are doing it and you are going to be ok.”
We have made it through an incredibly tough time in our lives. This little bungalo has become more then a home to me but the place that we are raising and nurturing our family.
The hopelessness I once felt about Angelina and our house being unfishined it has passed. I feel hopeful for the future. For the lives of all our children and what the good Lord has in store for all of us. Caring for Angelina has at times seemed overwhelming; we are doing it and she is thriving. I have a little pocket bible from my first stay at the hospital and I came across the definition of hope: “Confident expectation in the unseen future or happy expectation of good. Hope launches a positive outlook. Without it, lives remain fragmented and broken, personal dreams go unrealized and sick hearts loose capacity to cope. Hope tells you to hold on in anticipation and expectation-because good is just ahead.” -The Bible Promise Book for Women
I thank that little girl each day for the amazing things she has done in her short time on the earth. Relationships that have formed because of her, learning how to thrive in a season of challenge, enjoying the simple things this life has to offer through our relationship with Christ family, and friends. I thank her for bringing my brothers girlfriend into the family 🙂 (they met each other as she was Angelina’s nurse practitioner at the hospital), I thank her for helping me realize that our life is to short here on earth to feel hopeless and worry about things that we can’t even control. I thank her because each part our lives has been designed by Christ for our calling here on earth and to shape, form, and mold us to become more like him.
This last six months is only a very small part of Angelina’s life. A time that we will soon be able to reflect on and see how she has made us appreciate the simple things in life. When we say: “We aren’t really to sure how we made it through that segment of our lives, we are reminded, by the power of Jesus Christ.”
Angelina is about to start the next journey in her life. She will get her new heart on Monday May 5th. We are both excited and scared for this next part of her life to begin. Isn’t it crazy how we finally got comfortable right where we are and we are about to witness our daughter have a major surgery.
To our family, friends, church body who have abundantly taken care of us in ways that we can’t even bring to words your support never goes unoticed, ever.
My prayer this morning is for Angelina to have total healing in her heart and to continue to spread Hope to those around her and to a world full of brokeness.
“The Lord is my portion.” Says my soul, “Therefore I have hope in him.” The Lord is good to those who wait for him, to the person who seeks him. It is good that he waits silently for the salvation of The Lord”.
Today marks our very first World Down Syndrome Day!
What is World Down Syndrome Day?
World Down Syndrome day is a day in which people with down syndrome are celebrated across the world! It’s celebrated on the 21st day of the third month to symbolize the third copy of the 21st chromosome known as trisomy 21.
World Down syndrome day is celebrated across the globe to spread the awareness, support, and to generate the well-being of people with downs syndrome. Many activities and events are planned to help communities understand what down syndrome is and how down syndrome people play such a big part in our lives! It gives people with down syndrome a voice to educate others on how they are uniquely created.
It’s been over six months now since we found out on that hot late August afternoon that Angelina could possibly have down syndrome. I’ll never forget texting my husband Dennis as I sat in our van telling him the news. I was in denial. This could not happen and would not happen to us. I won’t be able to handle this. I am going to have a child that never leaves the nest. These were the selfish thoughts that circled in my mind and kept running over and over those first few weeks. I remember crying on the phone with Dennis while he was on his way home from work that evening. I thought my life had ended. I couldn’t breathe and everything that was once clear now seemed like a fog constantly surrounding my life.
As I sit here seven months later. The fog is starting to clear out and our new normal is starting to take focus. Our journey with down syndrome has just begun but my life hasn’t ended and I am pretty much certain we are SO excited to have a little girl by our side who we are going to call our “little Hope” for the rest of our days.
I still have my days were things are really tough, I don’t feel like facing anyone, anything, except my baby girls, a bathrobe, possibly a workout and a cup of coffee. I have my incredibly amazing days with Angelina. Days in which she meets a small milestone (I cry), when she smiles, laughs, being able to watch my incredible husband care and bond with her, our snuggles (oh she is so sweet), we can’t forget that crazy tongue :p and most importantly the time spent as a family together just loving on this little girl.
I know that healing takes time and it seems weird for me to tell you that I am grieving my beautiful baby girl. I am and that’s part of the process while I allow myself time and grace. None of this is normal and extremely far from what we expected on this journey through parenthood. One thing remains certain through the endless doctor appointments, administering of medications, therapy appointments and constant concern for Angelina’s development. God gives our souls rest and he is our fortress, rock and salvation when things seem to big for us to handle on our own shoulders. We realize we need to constantly keep handing it over to him and are reminded of that through this verse:
“My Soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken.” Psalm 62:1-2
The mundane things we used to do as a family seem so much more meaningful. Angelina you have made us appreciate the simple things in life. Our Friday night homemade pizza night, a movie with the girls, and ice cream. How I long for this evening in which we can all relax together and hangout as a family. My girls, oh my triple A’s! Ava your passion for living and how you have to be alongside me every step of the day (sometimes irritating) but we wouldn’t want you any other way. Amelia the perfect middle child who dances to her own tune, brings us constant humor during the really tough days and goes with the flow. God knew the perfect birth order for our family of three girls.
My 6am and 9am coffee date with you little girl is the best. I never know if I am going to get the all star bottle drinker or the tongue slashing wild and crazy bottle drinker. This is usually accompanied by a quick workout in between and two other little girls running around the house. Watching your facial expressions while you drink your bottle and your sisters fight right by your ear cracks me up.The way you study my face and raise your little eye brows melts my heart on a constant basis. I wish I really knew what you were thinking during those crazy sister fights and as you study our faces daily.
Little girl I have such a driving force in me during this season to spread awareness about down syndrome. To stand up and advocate. To share our journey with down syndrome to help the next person who is blessed with a down syndrome child. To help mothers with special needs children find time to take care for themselves through both spritiual and physical fitness to be able to better care for their children and families.
Angelina you are amazing and I thank God each morning for you. I plan on tracking and writing about your journey each month here on the live fit website. The ups and downs. Your milestones and what it took to get you to achieve them. I will write how we will so diligently try our hardest to live out our race that Christ Jesus has set before us. You have left us learning what it truly means to:
“Rejoice in hope, be patient in tribulation, and to continue steadfast in prayer.” Romans 12:12
My prayer today is for all the mothers who sit in a hospital NICU room with their child who has recently been diagnosed with Down Syndrome. My heart aches for you, those three weeks as I sat next to Angelina’s bedside my mind just spun in a million different directions. I pray that they can enjoy the simple mundane things and the moment to moment things in life that are gifted to us by our creator.
Our little Hope we look forward to celebrating World Down Syndrome Day for many countless years with you. Happy 1st World Down Syndrome Day.
I’ll never forget while our stay at the PICU as we left the hospital to get in our car one night we were able to see the air bear land on it’s landing pad. During our over stay at the hospital I had heard it take off multiple times and my husband had saw it land from our window at the Ronald McDonald house. On this particular night it really became real for me. This whole new realm of extremely ill children. I started kissing Ava and Amelia ten times more at night, praying constantly thanking God for such healthy children. We take it for granted, our children’s health. I stood watching as the hospital staff rushed out with a bed to get the Child off the helicopter.
Did you know that Akron Children’s is the home of the air bear the only pediatric helicopter in the state? No, I didn’t either.
It became real, sickness, heartace, and parents who have been through some of the toughest things they have ever endured in their lives. We have never been exposed to this world. The things that we used to worry about in life seem so minute in comparison to the things I have witnessed in the last 3 months. Would I change a thing, absolutely not.
I often have found myself during this time wanting to make it to the next land marker so to speak. When Angie was born it was (does she have downs syndrome, to oh I hope she can drink her bottle, to her gaining weight, then it was things will be so much easier at home, to I can’t wait to her next appointment(maybe we can have a surgery date in mind), to I hope she has the surgery as soon as possible, so we can start to move on).
I feel like I often have this mentality. Always wishing for the next thing, apparently the grass is always greener when X, Y, Z happens.
This past week we found out some news about Angelina’s heart that was heart wreching. Throughout this process she receives what is called an ECHO. It makes sure her heart is functioning proper with the defect, no leaking in her valves, and helps measure pressures in her heart. With the specific heart defect she has, they like if the babies can make it to have surgery between 4-6 months. They need to be between 8-10 pounds. The longer they wait the better, less risks, less chance for more surgeries down the road. When Angie was in the PICU they added in one more medication for her heart to try and help her heart function so they can prolong her surgery.
Angie’s last ECHO was showing that her heart was still functioning fine with the defect. (In time if the defect is not treated blood can flood the lungs causing permanent lung damage).The ECHO we had last week showed hypertrophy in her left ventricle. Hypertrophy is normal with this type of defect to some degree. Her’s is also moving up in to her septum. The heart a muscle can become enlarged and more muscly when a defect is occurring or it is not working properly. Just like our muscles in our body hypertropy(grow) when we lift weights. This can change the rhythm of the heart and block blood flow.The cardiologist told us that he has never seen this in the fourteen years he has been working with heart patients. He didn’t know if it was caused by her defect, which oftentimes is reversed after surgery or if it was something occurring genetically within her genetic make-up. What really caught him of guard was how fast it occurred between each ECHO. He went back and reviewed the previous ECHO and it wasn’t present.
He told me he was going to present Angie’s case to the 12 other cardiologists and surgeons on staff and call me back after they had a meeting of the minds.
I was sick, I mean when I look at her she is thriving. Eating well, growing slow but steady (it’s hard for them to gain given the amount of calories they burn while eating because the heart has to work extra hard). On I drove home, I was crying calling out to God don’t you dare take this child away from me.
SO, we waited for the phone call. Two days of wondering, analyzing, talking about the tough stuff again. I was enlightened, before I was just wanting to move to the next thing but I didn’t realize then we had a direct diagnosis and plan. It was way easier then moving on. Why can’t I just thrive in this season that I merely want to survive in? Why can’t I be content, with what God’s handed me from each moment to moment. WHY IS THIS SO UNBELIEVABLY HARD, if I could only count how many times I have cried out “GOD PLEASE TAKE THIS.”
The dr.told us that what is occurring one of the 12 other doctors have only seen one other time. Genetic testing needs to be done, because they think Angelina has a metabolic disease. Ya, don’t google it because it doesn’t help me understand it any better. Basically, this is how God has genetically engineered her. The Dr. told us that sometimes they have all the medicine in the world and can’t explain why things happen the way they do. He said that surgery might be completely out of the question because if it continues to grow the surgery might not even help. That the large hole in her heart will actually help them have some time to figure out what is causing this to occur.
I’m not sure how I have been able to move on from that phone call. This time I decided I am SO done wishing my life away. It’s not about survival anymore it’s about thriving. Using this season to grow, to embrace every single second with my children. To show my children the unabundant love of Christ.God has handed this to us for a reason and I refuse to merely survive. I want to glorify his name and thrive in a season that is so painstakingly hard.
I am striving for contentment. Praying that either the doctors find a different route or that on Tuesday her left ventricle hasn’t grown anymore and surgery is still on the table. We named this little girl Angelina Hope for a reason, to sprinkle hope to all of those around her. Hope to thrive when they merely want to just survive.
On Monday at approximately 9:35pm Angelina Hope lived up to her name. Words can’t describe what I felt that moment she looked directly into my eyes and gave me a grin. I can truly say their must have been an angel in the room because I just got a little glimpse of heaven. Then again on Tuesday, except this time it was a little laugh and giggle. She is still figuring out the whole smile thing, but I feel like it’s her way of saying: “hey mom, Jesus ya he’s got this, and just relax and enjoy the itty bitty stuffy you always have over looked.”
I came across this except from Billy Graham in my bible and God truly confirmed that it’s time to pray, wait, to be still, to thrive on what he is trying to teach, and to listen.
“No matter where we are, God is as close as a prayer. He is our support and strength. He will help us make our way up again from whatever depths we have fallen. We don’t consider that sometimes jesus is our strength simply to sit still.
“Be Still, and know that I am God.” Psalm 46:10
Our natural tendency when we have a painful happening in our lives is to go into action-do something. Sometimes it’s wiser to wait and just be still. The answers will come. … We may be sure that God is true to his word and answers all sincere prayers offered in the name of The Lord Jesus Christ. His answers may be yes, or it may be no, or it may be wait. If it is no or wait we cannot say that God has not answered our prayer. It simply means that the answer is different then we expected. When we pray for help in trouble, or for healing in sickness, or for deliverance in persecution, God may not give us what we ask for because that may not be his wise and loving will for us. He will answer our prayer in his own way, and he will not let us down in our hour of need.”
From Hope for the trouble heart By: Billy Graham
I know that God has a plan for little Angie’s life. I see alittle more of his plan as each day unravels and I praise him for finally helping me slowly learn contentment and to thrive in seasons of challenge.
“Not that I speak in regard to need, for I have learned whatever state I am in, to be content: I know how abased, and I know how to abound. Everywhere and in all things I have learned to be both full and hungery, both to abound and to suffer need. I can do all things through Christ who gives me strength.” Phillipians 4:11-13
I hope that if you are traveling through a tough season that you to can be still and know that you can do all things through Christ who gives you strength.
I’ll never forget that cold snowy January morning. It was two short weeks ago but seems so vivid in my memory still. I told Dennis something seems off. Angelina didn’t seem herself. For two days on and off she was acting weird and not eating as well. The dr. Told us it would be a pattern of three days if Angelina were to go into heart failure at home.
I called the cardiologist and rushed Angie to the ER at Akron Children’s. They knew we were coming. The heart center gave them the heads up.
On my way to the hospital I can honestly say I didn’t know how bad it was. Missing my exit because of my nerves and Angie’s cries of distress in the backseat. She never had let out this type of cry.
Getting their I made the mistake of parking in the parking deck. I was on the total opposite end of the hospital. Racing the stairs with the car seat and running down the long tunnels to get to the ER.
The nurse took us directly back she took Angie’s vitals and looked nervous. She called the nurses right away. They took her back to a room. Two different nurses came and and I literally turned to take off my jacket and as I turned around they were all gone.
That moment for the rest of my life I can honestly say I’ll never forget it. Standing there helpless I lost it. A moment were I realized how fragile life really is. I had always knew God was in control. At this moment it became so tangibly real and heart felt.
Angelina was taken back to a room where if I could count maybe if not more 8 dr.s, respiratory therapists, nurses, and staff started accessing her. Big lights, fancy equipment, big terms, and a fast paced environment that would cause any mother to feel total terror.
I kept asking them: did I bring her soon enough, was it my fault, and telling them she has been doing so well at home. Do they get this bad this quick?
A dr. Came up to me and said: you did the right thing bringing her in. You didn’t do anything wrong. They called in a chaplain to offer me support.
Once stabilized and on a vent they took Angie up to the PICU. I forever will never forget my nurse that day. She was something special. I could not hold Angie and she was sedated on the vent. It was so hard to see her like that. My perspective on parents who have experienced this and have much sicker children then Angie had radically changed. My heart literally hurt as I would walk up and down the hallway seeing numerous children on vents.
Tests were done and it turned out that Angie was in acute respiratory failure that morning when we arrived at the hospital. The grunts we thought at first were her trying to poop were her protecting her airway. Crazy enough it was her way of surviving as her lung were filling up with fluid.
The vent was to help her heart know enlarged and lungs have a break, they set her up on lassix’s to get rid of the fluid. They found that Angie had hypothyroidism which could have been a big contributor to why everything happened as it did. The thyroid slows the body down and affects heart function.
That first night Angie was in the PICU Dennis and I left to grab a bite to eat. We went to target and each bought a pair of comfy pants. Why, I’m not sure because if you know us well enough we love our sweatpants and have a million pairs. We were coping, that night was long as we slept next to Angie’s crib with her pulse oxygen count buzzers beeping and the vent machine buzzing as they were trying to keep her settings low so she didn’t become to dependent on the vent.
I felt God’s hand on Angie that night he provided us comfort. I had a dream that night envisioning angels alongside her bed easing whatever pain and suffering she felt. As I laid on quite possibly the most uncomfortable pull out bed my face sweating on the plastic sheet covered pillow.
The next few days were rough. I ran the stairs, walked the halls, painted my nails some really rad color as we celebrated New Year’s Eve sleeping next to Angie’s crib on the hospital floor. Dennis was doing a push-up routine with a deck of cards he brought while I was trying to rehab my hips as they have been so sore since Angie’s birth. We were coping the best we could.
My sister in law sent a text: “how are you doing?” That’s when it hit me. I
Told her: ” I have my coping mechanisms. Doing the best I can.” I thought this could be so much worse. We know what the problem is and we are treating it with therapies and medication. I watched countless parents walk the hallways, sit next to their children on their iPhone, or one lady who tried to bum a cigarette off me after I have just did my 8 flights of stairs workout. They were all coping the best way they knew they could.
It strikes me now that we are home hopefully until surgery that everyone has struggles,seasons of pain, sorrow and we all cope some how some way.
My biggest coping mechanisms: being with Dennis and the girls, one point it was food, one point it was shopping,then the working out once I was able, was huge to the coping process, and of course a lot of trips to the coffee cart at Akron children’s. Writing on my blog and my fitness challenge in 2014 which you can find here: 2014 keeping it simple in 2014 fitness challenge . Right now I know going back to my workout regimen will be hard with the season I am in, and just taking small steps to attempt to get back to my healthy lifestyle seems like a simpler less overwhelming goal. After seeing a lot of sickness and health issues at the hospital that are out of many children’s and parents control, a lifestyle I am even more passionate about.
Once home I began praying over Angie all hours of the day and night. It struck me in the middle of a prayer.
The coping mechanisms they are all natural and they do help, but the help is temporary. It seems like the Coping mechanisms they start to fade after a while.
Jesus, his love ENDURES forever. He provides comfort at all hours, he is there to listen, to give us the might to move on through the next minute, he helps some how some way get us through really extremely tough stuff. He forgives us, he never leaves our side, and his mercies are new as we wake each morning.
Jesus is how we cope and the only way we have made it through this season.
“Even when I walk through he darkest valley, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me.” Psalm 23:4
These lyrics from Hillsong “All I need is You Lord”: Keep repeating through my head this week
Left my fear by side of the road
Hear You speak, won’t let go
Fall to my knees as I lift my hands to pray
Got every reason to be here again
Father’s love, that draws me in
And all my eyes wanna see is a glimpse of You
All I need is You
All I need is You Lord, is You Lord
All I need is You
All I need is You lord, is You Lord
One more day and it’s not the same
Your spirit calls my heart to sing
Drawn to the voice of my Savior once again
Where would my soul be without Your Son
Gave His life to save the earth
Rest in the thought that You’re watching over me
All I need is You
All I need is You Lord, is You Lord
All I need is You
All I need is You Lord, is You Lord
You hold the universe
You hold everyone on earth
You hold the universe
You hold, You hold
‘Cos all I need, is You
All I need is You
All I need is You
All I need is You Lord, is You Lord
I’m not sure what this film is on my teeth, oh wait. I need to brush my teeth. Good thing my brother-in-law is a dentist. My hair looks like I took some olive oil to it instead of gel. in this season a shower is liquid gold. Crumbs always stuck to my feet, I’m not sure the last time I saw the bottom of my sink, piles of laundry, and if I nearly break my ankle on a toy one more time in the middle of the night!!
I am just in the newborn season. A season were I feed, change diapers, get the baby swaddled back to sleep and three hours later, Repeat. Countless nights of interrupted sleep has left me with cloudy out of sort thoughts.
What I love about this season: The smell of a new baby, How Angelina looks like a burrito every time I swaddle her, snuggle sessions, sitting on the love seat with my husband and all the girls, the squeals of each of my daughters as they crowd me every time Angelina is awake to see and admire her. They pat her head like she is a small kitten and Amelia is constantly touching her ears. I love the way they nicked named Angelina “Sqeaks” within the first five minutes of us all being home together.
The day they came home after being separated from them for twenty three days they ran in the house to the pack in play where Angelina was laying and they were staring as she was grunting and wiggling around, she made a loud squeal.
Amelia mimicked her, laughed and said: baby “Sqeaks”. Angelina’s nickname was born. You see in our family we all have nicknames. Dennis is Len, Den, or Lenape. My nickname is Ralph. Ya, my father-in-law even calls me Ralph. God bless my niece who was learning how to talk six years ago and when trying to say my name Ralph just came out and it stuck. Ava goes by Av, peanut ( she was a premie) and Stinky. Amelia has an array of nicknames. She is your typical middle child beating to her own drum. Her names are: MOO MOO, Mooski, Moo Moo monster, moody moo, and millie.
I love being in my robe and slippers all day, I love that it’s winter and peppermint mocha’s.
What I don’t love is the endless phone calls. Calls to doctors, various appointments, figuring odds and ends that I never thought I would ever have to face with any of my children and a feeling of uneasiness about how Angelina’s condition could change quickly. Right know she is doing extremely well. She has wowed the doctors. Taking a bottle has been huge for her. Children with Downs Syndrome and who require open heart surgery often are unable to drink bottles and go home on a feeding tube. Our little Angelina continues to show such positive signs for both her current heart condition and her downs syndrome. The drugs she is taking are working. They are helping her to be able to grow and become stronger before surgery. When we saw the cardiologist last week he was extremely happy with how we are caring for her and the weight she has gained. He would like to wait as long as possible to have her open heart surgery because her being bigger and stronger is best for her recovery.
I met with a program called “Help Me Grow” that helps montior and set up therapies for Down Syndrome children. Her evaluation went well, she is picking her head up and turning her heads toward sounds.
I remind myself that with each child we have gone through a season of change. Eventually it gets easier, they grow up, and life becomes a new normal for us. The memories of Ava and Amelia being infants seem so long ago, distant. The third time around it’s just a little different, a little more involved and it’s ok if it takes us a little longer to fall into the swing of this new phase of life. This new normal for us is just beginning and like with the other children we aren’t quite sure what is in store for us. Am i angry, somedays yes. Am I sad, somedays yes. Am I scared, absolutely. Do I get down, because I have a lot of strange feelings and feel guilty because I have this beautiful child God has blessed me with, yes. When I look around my house everything reminds me of our life before Angelina and I often get upset because things seemed so simple and easy then. Am I Excited for her life, yes. I am excited to see how she develops and grows. I am excited to see how God uses her to perform “Hope” in people’s lives and just little miracles. She makes me have more of a love for simple moments and just the little things in life that I took for granted. I love that about her. Well really I love everything about that little grunting, farting sweet Angel of ours. It’s those moments of “hope” that I cling to in this season. When the phone calls, sleepless nights, dr. appointments, and stresses seem to overwhelm me I am comforted by this verse:
” To everything there is a season, A time for a purpose under heaven: A time to be born, and a time to die; A time to plant, and a time to pluck what is planted; a time to kill, and a time to heal; a time to break down, and a time to build up; a time to weep, and a time to laugh; a time to mourn, and a time to dance; a time to cast away stones, and a time to gather stones; a time to embrace, and a time to refrain from embracing; a time to gain, and a time to lose; a time to keep, and a time to throw away; a time to tear, and a time to sew; a time to keep silence, and a time to speak; a time to love, and a time to hate; a time of war, and a time of peace.
In this season I am going to hang onto not I worrying about tomorrow for it has problems of it’s own. I am just taking it moment to moment. One step at a time. Clinging to Jesus, my family and friends, and embracing every single moment. Thanking God for all the good he has blessed us with.
“For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope.”
To the countless people who have messaged me in some way, sent cards, gift cards, money, dinners, offered time and support. Thank you truly isn’t enough. You have helped us along the journey and we are forever grateful. Even If I haven’t gotten back to you please know that nothing goes unnoticed .To our families you truly are amazing. I feel closer then ever to our families. To my sister-in-laws I would truly be lost with out each of you. You don’t know how much you have helped me on this journey. I wish I could repay you but know that I will always be by your side in this life. The same way you have come alongside of me during this time. We love all of you and again are so appreciative and thankful we are blessed.
PS: On a lighter note, Live Fit Women’s Fitness is getting a 2014 challenge together. Who is coming with us? stay tuned 😛