Winter time in Ohio has never really been my favorite season. Darkness. It almost at times feels like it chokes out the light. The earth around us fallen dormant. Animals retreat to their dens, the earth lacks color, and we are left to power through a cold dark season.
As I tread the treacherous waters of grief I have found myself finding ways to combat depression and grief. To meet the storms head on. To allow it to bring me to my weakest moments on this earth.
It seems like the more I understand grief, depression, and the darkness that closes in the more I want to climb my way out. The more I cling to the strong truths in my life.
I oftentimes feel like a buoy out at sea. Getting tossed around by low and high tides. I use this arsenal to combat the tides and sometimes my friends the storms can be straight wicked.
Why does society tell us to get over it, move on, power through?
In being in the midst of it right now myself. The high tides, the low tides, the moments that I have out on my raft in the sun, moments when the storm hits without any warning and all the moments in between.
I have realized it’s not about powering through. It’s about feeling every part.
How about lean into the waves, allow yourself to be saturated by the waters, embracing the root of sadness, depression and utter brokenness.
It’s in my most weakest moments, clinging to brokenness, seeing my soul straight shattered on the floor, that I see a healing salve being placed on the hole in my heart.
The salve slowly heals one broken area. Then I feel as if I’m in high tide once more. yet again to return to low tide as the next part starts to slowly heal.
Below are a few ways I have learned how to combat the tides and waves of grief
- God. I start each day with a daily devotional and journal afterwards. ” For with God nothing shall be impossible.” -Luke 1:37
- Family and friends. I don’t quite know where to begin. They have always been there and continue to be a support on this voyage. I truly feel closer to them than I ever have. They help in ways in which they may not even know. I have a few close friends that I disclose the tough stuff with, they love me no matter where I am at in any moment, place no judgment of where I should be, and we laugh together. Yes, to be silly and escape the sadness has been so life giving in the midst of all of this.
- Community. I have my church community, my workout community, and my grief community. Each community aids in whatever I may need on a given day or moment. I have been blessed to be able to connect with my grief community through a blog called:http://www.scribblesandcrumbs.com
- My workout. If you know me I love a good sweat pumping workout. It’s my release, it’s where I process and talk to God, and it fuels my day. There is something to be said about the sweet cadence of my shoes hitting the pavement, my lungs burning on a cold winters day that resonates a sense of if I can make it putting one foot forward on this run, then I can make it through grief.
- I want to learn, I want to learn about other people who have walked the lonely road of grief (although my tender heart constantly breaks for them that they to had too experience it). I want to read all I can about it. The more I understand it the more I see hope as others who have gone before me and who have had victory. When they write it’s like they are taking emotions and thoughts right out of my brain. A couple of my favorites to date are: Through the Eyes Of A Lion, By: Levi Lusko, Choosing to See, By: Mary Beth Chapman, Restless, By: Jennie Allen, Battlefield of the mind, By: Joyce Meyer and A Grace Disguised, By Gary Sittser.
- My Counselor. She is one of the most Godly women I have ever met. She has taught me so much about where I am currently at, about how to cope and given me insight of how to move forward.
This is my personal arsenal to combat grief it helps as the tides, waves, ebb and flow. I am just so thankful that I have these things to aid in the healing process.
Today as you are walking through life, I hope wherever you are that this has helped provide you insight if you are experiencing hardship of ways to cope, battle and conquer life’s high and rough waters.
Soon the darkness will give way to much brighter days as the heart becomes more mended.
As I slip off my fuzzy slippers and crawl into bed the moment my head hits the pillow the quietness of the night starts to surround me as my eyes remain wide open.
It’s then that my mind starts to spin like the wheels on a car. With what could have been and what is now.
I think of life while I was pregnant with Angelina, her birth, her beautiful 6 months here with us, her passing and life now.
None of this is what I planned. In my mind I had this plan for our life. I am such a routine person and all these things I had planned. This simple perfect life. This doesn’t seem to line up with my expectation of what was supposed to be my family’s life.
Then in the quietness I lay in bed as the crickets sound like a symphony outside my bedroom window and I think to myself.
This isn’t what I planned, but I wouldn’t change it for a second. It’s not what could have been but so much more. I wouldn’t trade this life God has mapped out for me for our life.
The hard and messy is when we learn to cling and turn to God the most in life.
As I rise because I just have to get these words down on paper because I can’t stop thinking and also because I made homemade double chocolate brownies and didn’t workout today (I never can sleep if I don’t workout). I quietly walk up the stairs to Angelina’s room.
The door it always had a creak and still does. I try to open it just right not to wake the girls who are sleeping. I grab a blanket etched in blue and yellow given to me by a dear friend and slip into my desk chair in my new office.
It’s been about six weeks since we unbolted the baby crib and took the mattress out. It was such a sad day. The place where I rocked all my baby girls. The place where I snuggled them and gave them the nurturing love that a mother gives her child.
Now I sit here clicking away on keyboard in that very same place. With Angelina’s and my other daughters memories sitting all around my desk.
It was hard to make this move in my grieving process but there is truly and never would be the right time to take these tiny steps. You just muster up the strength and do it.
It felt right and I feel so safe and comforted in this tiny nursery, forever Angelina’s room as the girls still call it.
As I sit here in the darkness and stillness of the night I keep having this recurring memory to a visit from my Aunt and Uncle back to when we had been home close to three weeks with Angelina and they stopped to visit. It was after Christmas and a few days before Angelina went into Acute respiratory failure and I rushed her to the hospital.
We were visiting and my Uncle looked at me and said: “ what is normal anyway.” We laughed because he is just a fun-loving guy and he brought a lot of truth to a situation in which we were trying to figure out how to care and do life with Angelina at home.
It’s seems like just when we found a new normal, how to care for Angelina and helped her thrive and accepted we would be faced with the challenge that she could be chronically ill that things again changed and we would be finding ourselves facing a new challenge of life without Angelina.
It seemed like so many people said I would find this new normal and that life will never be the same without her and I think of a brief memory from Angelina’s calling hours, I don’t recall much except my back hurt from hugging people and one women a distant relative told me I’ll never get over this.
I have been waiting for my new normal over the last year. It hasn’t made it’s grand entrance, I’m still trying to make sense of this and yes you are probably right lady, I’ll never get over this.
However in the last passing few months. I have come to this conclusion that normal is a word that I would like to toss out of the dictionary at this point and that healing and redemption could take it’s place.
I am ready to heal and yes I will never get over this because how does any mother who looses a baby she carried in her womb, birthed, nurtured, loved and gave her all to really get over moving through life with empty restless arms.
My arms ache, they ache for my sweet baby, every single day.
Healing not normal is what I am ready for. This last year has been an up and down cycle of highs and lows. As year two begins there is no new normal, it’s truly about meeting grief where I’m at on any given day at any given time.
It’s about embracing this season instead of searching for this normal. It’s about finally unleashing bottled up grief and after a year and a half crying with close friends and family. It’s not about making sense of this situation because I will never understand Why, God took my child away but realizing that through proper healing and restoration that he will continue to use Angelina’s life and story to impact lives every single day.
This summer as corny as this sounds and you can make fun of me for all that matter. I feel like as I wager with God and ask him Why, What, Where do you want me. WHAT DO YOU WANT ME TO DO WITH THIS.
He says, Michelle bloom. Trust me, be still, heal, and bloom right where I have planted you.
If you know me I love flowers, you can find me barefoot in the garden on most afternoons in the summer and I haven’t gardened much in the last two years. I have no energy to can this year which breaks my heart.
But the girls and I planted tiny little flowers and they have flourished and bloomed with little attention and hardly any rain.
When I look at them, I keep hearing God Say : Bloom. Just like these flowers you barely watered there were brittle, weak, and I grew them. Let me water your soul and bring strength to your brittle bones and joy to your heart again.
When I look at my girls I see Angelina, as I tie Ava’s hair in a pony tail the back of her neck looks exactly the same as Angelina’s and Amelia’s abnormally long tongue hangs out while she concentrates as she colors and I chuckle inside. Angelina is here, she is all around us and this is always going to be hard and it’s ok if I never get over this but I can learn how to live with the pain. I am ready to experience joy and the simple things God blesses us with each day to bring beauty to this tough life again.
I am ready to begin to heal. With that still comes the grieving, depression, extremely hard days and I think Mary Beth Chapman says it best in her book: Choosing to See:
“Even in this free fall of pain, I’ve landed on a solid foundation and my faith has held…..on most days. I have learned That God is good….always. Hope is real. I have found even in the awful pain of tears and grief so intense you think it will kill you that my family and I can do hard. We’ll never get over our loss, but wer’re getting through it. And so I have prayed that our journey through the shadows of loss might be of some help to those who have experienced similar pain.”
Today I decided I am ready to bloom right here in the mist of my grief, and my prayer is for those who are struggling with life’s hardships that you to can bloom right where God has planted you.
God he keeps reminding me of his almighty power. He has the ability to heal me if I allow him to and to completely surrender the unbearable to him. A mothers love has kept me from that surrender, it has kept me from wanting to let go. My stubborn heart has shown how deep that love flows for our children and over the last month God has shown me that in surrender I will find healing and peace. That I can turn the pain into sweet memories. That God’s purpose is greater than my pain. That my continual hope is in heaven when I will see God and be reunited with Angelina again.
For those who walk the road of miscarriage, infant and child-loss October 15 is a day to bring awareness, for the 1 in 4 women affected by pregnancy and infant loss, this post is dedicated to all of the sweet babies and children who left this earth entirely to soon. Sweet friends as my knee’s hit the floor often and I cry out to God to take this my heart is breaking with you. Continue to look up. When your strength fails you God will carry you.
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.
We have met the homestretch of this challenge! This is the final week and I am feeling so encouraged by this memory verse from the Good Morning Girls:Intentionally Focused online bible study that I have decided to use it for this week’s memory verse.
Do you have an accountability partner? Someone that you can share your goals with? Someone that will cheer you on and tell you the tough stuff when you need to hear it?
Two are totally better then one in every walk of life and especially on our health journey!
Now that you have accomplished these two short term goals. Examine what you want to do next! Maybe it’s going to remain the same or maybe you are ready to tackle something bigger! We are all different. Long term goals provide you with a bigger picture and represent what is important to you in accomplishing on your health journey. They provide direction in your exercise program and reflect what you want.
Don’t forget these two closing thoughts. Stay positive! If you feel like you failed start fresh, right know! Keep a journal, it will help you become aware of unhealthy behaviors, why you do them and the consequences they have on your health.
Good Luck, thank you for joining this challenge it has really helped me learn a lot about the season of life I am in and how to adapt fitness into each new phase of life. The Sky is the limit! #livefitin2014
Bad habits die hard. It takes time, patience, endurance and perseverance. Be patient with yourself. Two weeks in, the end is in sight. Keep your eyes on those two short-term goals. Great work! #livefitin2014
(Don’t forget to jot this memory verse down and your short term goals and place them where they are visible to you)
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.
Week 2 scripture verse: “apply your heart to discipline and your ears to words of knowledge.”-proverbs 23:12
How did week 1 go? The first week of any new change is difficult. Set backs often pop up and this is how we learn how to get back on track (instead of giving up or thinking you can’t do it, BECAUSE YOU CAN!) Creating a healthy lifestyle for yourself at first isn’t going to be easy but over time it will become routine and your will thank yourself three months from know!
Think small victories this week. Last week was all and all rough for me. Things came up, my plans often altered and I had to adapt quickly. I was still able to squeeze in 4 workouts and I am slowly eliminating my sweet tooth. Don’t be overly hard on yourself. I often clung to last weeks memory verse, looking for The Lord for help when things were spiraling out of my control.
Small victories could include: cutting back on the coffee(tough for me, but creamer has a lot of sugar), taking the stairs instead of the elevator(with a baby car seat is pretty intense:), drinking 8 glasses of water, eating the color of her rainbow and fitting in 3-4 days a week of cardio.
Lifestyle change takes time and to make these healthy habits part of our daily routine focus on the small victories.
Physical and spiritual fitness requires discipline. We can all understand that we need discipline but to actually put it into practice is hard. I found this quote in Food, Fitness and Faith: ” life’s greatest rewards usually require lots of work, which is perfectly fine with God. After all, he knows that we’re up to the task, and he has big plans for us.”
Challenge on challengers, I have loved hearing about your progress. Don’t forget to put this verse somewhere were you can see it along with your two goals for this month. #livefitin2014