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 😛
It’s been three weeks and counting since our stay at the NICU. It’s been a little over four months since we knew Angelina’s birth was going to be a little different from our last two daughters. Looking back God has truly prepared us and our family for each step of this journey he has had us on.
We had to be at the hospital around 7am the morning of my induction. I was a little nervous because with my last two births I barely made it in time to the hospital and had very short Labors. My expectation was that once they started the induction that I would progress quickly and it would be similar to my other labors. I was wrong. As I paced the hallway trying to walk and get the baby to come out, Dennis was working out in our hospital room to pass time. We looked like quite the pair. I made him put on some gloves while he did push-ups on the hospital floor followed by a resistant band workout. He really cracked me up sitting at a small table eating his meals In our room. He was coping the only way any Italian could in this situation: eating and working out.
A nurse told me: “don’t wear yourself out walking.” Inside I laughed because to me that was a challenge. I came in and told Dennis watch me I’m going to have this baby natural just like the other 2. It’s that competitive spirit that kept me going that day. If you know me well enough I always have loved a challenge, I felt like giving up that day many times. The prior two months hadn’t been easy and knowing that our road ahead would be bumpy. I wasn’t sure how to stay positive. By the grace of God I just kept walking and it’s the only thing that kept me going. I wanted to be able to get right up after delivery to be with Angelina. I was trying to stay strong for her. I was continually asking God to sustain me.
As I walked up and down the hallway it became clear to me. I had spent most of my last two months in waiting rooms and at doctor appointments. The anticipation of this day had been more then I really ever could have thought. Life had started to feel like a waiting room and has continued to feel like one over the course of the last 22 days.
After bouncing on an exercise ball and a few pretty intense hours and of course my doctor missing my labor, just like what happened with Amelia. Angelina was brought into the world. It was scary as her heart rate plummeted and I was fully dilated and my doctor had gone home to eat dinner thinking I had about 3 hours left to labor. I never have been textbook. I am not someone who Labors long. I dilate from 7 to 10 usually pretty quick. The on call doctor ended up delivering me. I loved my doctor I was bummed she missed my labor!
I heard that cry, We praised Jesus she was alive. We had made it but little did I know how the next few minutes would be some of the most joyful, yet hard news Dennis and I would have been given.
I finally got to hold our little Angelina maybe for a few seconds before a doctor told me that Angelina had all the signs of a Down’s syndrome baby.
We went from thinking we could loose our baby, to seeing her alive, to hearing she was born with a disability in the course of 15 minutes. A lot for anyone to handle in a short time.
We loved on her and looked at how she was intricately and wonderfully made by our father in heaven. Then they took her to the NICU. It was hard for me. I didn’t get to take her back to my room and do normal mommy things with her. I was able to nurse her a few times but I knew in my heart it was to much for her little heart to handle.
“For you formed 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.”
That night as I laid in the bed praying and processing: this picture came to mind. God’s hands coming around Dennis, Angelina and I holding us up.
That next morning Dennis looked at me and said ” I know my mom said God was going to perform a miracle in Angelina but, she is the miracle that is going to transform our family.”
He couldn’t have said it any clearer. God spoke at the perfect time to help start the healing process.
Our precious girl is a gift from God who has been given to us and we plan to never label her but to continually encourage her that she can do anything she puts her mind to. You see that competitive spirit will help, we will never give up on our little girl. We are excited to see how God will use her life to help us and those around us see the glory of his kingdom.
In 22 short days a lot of tears or joy, sorrow, excitement, feelings of being overwhelmed, she has drastically had an impact on our very simple lives.
We are starting to learn a lot about how we can give Angelina a full life. Somedays it overwhelms us while other days it seems simple.
As for know we need prayer. Each day as we grow close to Angelina her heart grows more tired. Her congenital heart defect needs fixed. She is having trouble gaining weight and they typically like to wait 3-6 months to do the surgery. Each day is critical for they want to see her gain weight. We are hoping we get to take her home very soon! She has been completing her bottles better and is transitioning to a crib that no longer is heat regulated. The bigger she is for surgery the stronger and quicker she can recover.
The one thing I can’t wait to do is take her home and take a picture of her with her other sister’s I am dreaming of the day our family is all together complete at home.
This song has really seemed to play over and over in my head lately:
Building 429: We Won’t Be Shaken
This world has nothing for me
This life is not my own
I know you go before me
And I am not alone
This mountain rises higher
This way seems so unclear
But I know that you go with me
I will trust in you
Whatever will come my way
Through fire or pouring rain
We won’t be shaken
No we won’t be shaken
Whatever tomorrow brings
Together we’ll rise and sing
That we won’t be shaken
Oooh Oh Oh
Oooh Oh Oh
Oooh Oh Oh
No we won’t be shaken
You know my every longing
You’ve heard my every prayer
You’ve held me in my weakness
Cause you are always there
So I’ll stand in full surrender
It’s your way and not my own
My mind is set on nothing less
Than you and you alone
I will not be moved oh
Whatever will come my way
Through fire or pouring rain
We won’t be shaken
No we won’t be shaken
Whatever tomorrow brings
Together we’ll rise and sing
That we won’t be shaken
We will trust in you
We will not be moved
We will trust in you
As we continue our stay in the waiting room. We won’t be shaken. It’s easy to ask the question why? As time passes God continually reassures us and unravels his marvelous works using Angelina to draw us close to him.
We are excited for what tomorrow will bring and can’t believe how a little 4lb baby girl at 22 days old can leave a footprint so big already on our hearts. It truly has been worth the wait.
I created this blog to share my health journey. Over the last months I have shared a lot about becoming a personal trainer, my fit pregnancy, fit tips, spiritual living, recipes and as my views have increased I really have been praying and thinking about the future of my blog and what goals I would like to have for it come this winter.
I feel such a calling to help women on their fitness journey. I want it to be a place in which I can encourage, motivate and help women achieve both physical and spiritual health. I want this to be a platform in which they can open up about their journey (everyone so different) to physical fitness and share improvements, set-backs and goals. I have spread a little bit about my personal life over different posts. Today I am opening up about my third pregnancy and the journey God has had my husband and I on these last 2 months.
Just almost 9 short months ago we shared with our family and friends that we were expecting our third child.
We were so excited to add a fifth member to our family. As time passed and routine check-ups came and went we found out we were having our third girl!
We couldn’t believe it, 3 girls. Dennis my husband peeled out of the parking lot at the hospital saying “3 weddings! no one is dating our girls! I’m gonna have to shower in my barn!”
It was funny, truly God’s plan for our family and honestly we just wanted a healthy baby. Dennis has truly embraced taking on the role of having three girls. I plan on being a crazy aunt to my nephew’s spoiling them and attending lots of sporting events!
It wasn’t until my 20 week appointment that the ultrasound tech couldn’t get a good picture of the babies heart. “your baby is just to active she told me”. She asked me are you an active person? What do you do for work? Laughing I said replied yes, we can come back in a few weeks.
Thinking nothing of the appointment I loaded the kids in the car snacks and all as we headed to the appointment. You see taking them was always such an interesting time. Amelia loves to play in the water fountain, Ava scaling and climbing every chair in the doctors office. Screaming over goldfish during the ultrasound. At one point I think they pulled down blinds and practically climbed over some women’s back. We had to come back two more times for one more look.
The fourth time we came back I had an uneasy feeling in my stomach. “Something is not right,” I told Dennis that morning.
We got into the room and I looked at the tech, “Ok, What’s seriously going on?”
After looking a fourth time she told me she thought she saw a small hole in-between the lower two ventricles. No big deal right! It can close on it’s own or a very minor surgery can repair it.
Waiting for the Dr. as thoughts rushed through my head, thoughts that never crossed my mind in the last 20+ weeks did. The girls arguing over who knows a sucker seemed so drowned out in the back round as I waited for our dr. to speak with me.
“we are going to send you to a specialist and have them take a further look.” She then told me that some other things I should become concerned about is the possibility of downs syndrome. At that point I lost it. I mean what mother wouldn’t. Not that I wouldn’t love this baby any more or any less but just the thought of taking me out of my comfort zone, my perfect world of certainty made me feel so uneasy.That afternoon I reasoned with God. “WHY, I was angry and afraid.”
I’ll never forget the phone call between my husband and I on his way home from work that day. You see God has always been ever present in our home and lives but on this day he became our ROCK.
“The Lord is my rock and my fortress, and my deliverer, my God, my strength, in whom I will trust, my shield and horn of my salvation, my stronghold”. Psalm 18:2
It was at this moment that our outlook on life dramatically changed. Dennis and I were and still are continually thanking God for this season of life. We had been worrying about things that don’t matter,realizing God first, our relationship as husband and wife next and family are the most important things in this life, we stopped taking our kids for granted, started spending more time with family, realized we weren’t spending enough time knowing the Father in a deeper more intimate way,I was constantly trying to live in a controlled perfect world, and I never asked for help. I had the mentality of “I’m Good, I can handle anything on my own, I’m tough.” It was like my eyes were opened I had such a deeper compassion for people who have struggled or are going through hardship.
A few weeks passed and we headed up to Mercy Medical were they confirmed the hole and pressured us to do genetic testing for the baby. A mess in the room Dennis and I made a decision quickly to decide to take the genetic test. Once we returned home that evening and sat down to talk about it we decided that we made a decision that was in the heat of an emotional moment and that we would call and hope to cancel the test first thing in the morning. We were able to cancel the test and felt such a peace surround us that we had made the right decision.
What was knowing going to change. We would love our baby regardless of her condition and learn each day how to embrace what God has blessed us with. These past two months have been some of the best most joyous times and some of the toughest days in our life. I have had days were I have allowed myself to become completely vulnerable for the first time in my life, broken, crying, days were I can’t even shed a tear, allowing God to take all of this each and every day has been a constant uphill battle for me. God has constantly reminded us of this verse:
“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weakness, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weakness, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” 2 Corinthians 12:9-11
We headed up to Akron Children’s and met with a cardiologist who found a further defect in the babies heart called Complete AV canal defect. Dennis and I felt fried after he explained the treatment, surgery, and diagnosis. I remember after every appointment we just sat in the living room starring at each other and it was just like sometimes no words could come out. The Dr. was very positive, this condition is common, and the baby will have open heart surgery 4-6 months after birth. When she has the surgery depends on how well she does the first few months after birth. She will have routine check up’s with Akron children’s hospital every 6 weeks to monitor her progress. It’s still up in the air as to how she will do when she is born but typically babies are able to go home 3-4 days after they are delivered.We felt extremely blessed to know before delivery, to have a plan in place, and to prepare ourselves for the long road ahead as we await for her surgery.
I started worrying about when she gets here and what care will be like for her. worrying about my two precious baby girls Ava and Amelia, worrying about things again that are again out of my control. I texted a dear friend who has no idea how much support she has offered me in these last months as she went through a very similar situation a year ago. In those moments and countless others I felt God’s hand on my shoulder working through different situations, by what they have shared with me,certain things that have happened and I have seen the amazing power of our AWSOME, never failing God,a God who has so much Love for us.We continue to cling to the hope of Jesus. I can tell you for certain our little girls middle name will be “hope”.
“Now faith is the substance of things hoped for, the evidence of things not seen.” Hebrews 11:1
The support we have received from family, friends, work and our church family at River tree is truly amazing. God has provided, taken care of us, and continues to do so.
Sitting in church the Sunday we found out about the babies heart defect and every day since God has reminded me in the still silent moments that he has plans for our family to prosper us to watch us grow, that we have a hope and a future. When discouraged I cling to this verse:
“For I know that plans I have for you,” declares the Lord, “Plans to prosper you and not harm you, plans to give you a hope and a future.” Jeremiah 29:11
Dennis and I can’t wait to meet our third baby girl. We can’t wait to fall in love all over again for a third time with our little blessing from above. She is like the icing on the cake for our family and I truly believe she will complete our little homestead of girls!
Our prayer is the baby is completely healed if not when she is born by the doctor’s hands, that the delivery goes smoothly, and that we can bring her home soon after delivery. We have prepared for the best and both the hard, trusting the Lord has a perfect plan for our family. I am heading to the hospital to get induced on Thursday at 7am. Please keep us in your prayers and thoughts. We will be posting updates here on the blog and on Facebook and if you wish to be on a e-mail chain with specific updates and prayer requests please contact me: Michellevolpe28@gmail.com
Blessings and Love, Dennis and Michelle