Most Days im quiet, content and happy. But yet I feel like theres something I forgot to do, or forgot to get. While being a "first time" Home parent has its rewards and down falls. Being an Angel Parent comes with more struggles than rewards.
- never watching your child walk for the first time
-never hearing them cry just to cry.
- never getting to watch them grow up.
-feeling like you have lost more than you have gained.
Losing Kennedy has made it difficult to open up and scream my feeling. Yes I talk about her, but not how I feel a that moment. Feeling like you cant because you might offend that person, or that it might make for an awkward moment. I Love to talk about her just not the way I feel. I hold a lot in.
Being a Rainbow parent has its ups and downs too. Happy but to afraind to be TOO happy. Nervous and waiting for the other foot to drop. Always living in the what if moment. Afraid to let go and just do things. Planning for the best but the worst is never to far behind. Afraid to tell others you might need help because you don't want them to think your weak. Always trying to live up to others expectations.
My house may not be the cleanest nor the most organized. But theres one thing most homes don't have....A piece of Heaven. I try my hardest to think positive and see the brighter side but I don't always want to. If a parent you know is having a bad day or there pictures show a bit of dis-organization, please ask how they are. DONT JUST ASSUME!! I know its easier but sometimes they just need a bit of encouragement. I Struggle daily to try and keep a perfect house but the fact is I cant. I work, im a first time home mom. And I'd rather spend my time with my Rainbow rather than clean all day.
As for it being 1 year and almost a 1/2, since our see you laters, I miss her just as much as I did then as I do today. Her 22 days ment the world to me. Lets bury or take your child away for a year and see if you still miss them. So just Think.
My name is kennedy fallyn Thomas-Fuller, born july 5th at 3:28pm. I was nammed after my gret grandfather Kenneth Fallin. I was a very strong little girl. Until my parents told me I didnt have to be.
Day 3:: MYTHS Time heals ALL wounds!!
Who ever said that should have added "except when you loose a child!" Time doesn't heal the hole in my heart. Time cant heal the hole in our family. Time cant fix the grandparents need to fix us. Time is merely a number on a clock. Time cant bring MY daughter back. Time can't show Jimmie how loved he is by his sister. Time CANT HEAL ALL WOUNDS.
Day 4:: Legacy
DO i believe Kennedy left a legacy? Yes she lets people know they aren't along and yes you can do anything. She allows other parents get in touch with us. She left a simple but meaningful legacy
5 MEMORY:::
what memory come up when you think about you child? Her searching the room for us when we entered. They had her head towards the door so she couldnt see out but everytime a new person enter her room she knew.
Day 6: Ritual
My ritual since kennedy, watching michael and jimmie sleep and breath. its just habit, a habit i am not willing to break
Day 7::You Now: Where are you in your grief right now? How are you feeling? How far have you come? Are you wrestling with anything? Is your heart heavier or lighter now?
~In my grief i have come to terms with the fact i will always live with it. I will have good days and bad. I have come to terms with the fact MY BABY isn't coming home. I have come to terms with the fact she finished her journey. I have come so far compared to last year. I smile a bit more without feeling like i shouldn't. In a year i learned who my true friends are. I try to find the positive within anything. Every day is a blessing and should be treated as such.
Day 8:: Colour: What colour/s do you represent your baby? Why that colour/s?
Red without a doubt. Why??? red is passion, strength, and courage. All words that describe kennedy
Day 9: Music::: This might be hard to capture in a photograph so why not post a youtube clip of a piece of music that reminds your of your baby/ies/child/ren. Why this piece of music?
How can you pick just one. But this song says it all. While we had the choise of aborting Kennedy. We choose to carry to term and give her life. Yes there were pictures we didnt get to take but when its my time what will those pictures mean. I will spend my eternity with my daughter. Why this one? Because the word have never been truer
Day 10: Beliefs: Do you have a certain belief about what happens to us after we die? You might believe that we go to a heaven or you might believe that our bodies eventually turn to dust and that is the end of our story.
I personally believe in a HIGHER POWER. I believe that there is a Heaven (just beyond the clouds before you get to space-- For Easy G). I believe that because Kennedy knew nothing else but love she is there waiting(probably not so patient). I picture her there surrounded by friends and family. I picture her questioning everything. With my journey as a Heart mom, I have had to have FAITH. Faith in drs, faith in nurses, Faith in myself as a new mom. Faith in GOD. I have had to learn to trust in him that i can do it no matter how much i want to quiet. Since Kennedy, Faith and Beliefs are two words that i use to describe our journey.
Day 11. Emotional Triggers: What triggers emotions associated with grief for you? Is it the weather? A scent? Photos? Places? Holidays? Words? Certain people?
Triggers, Little girls things. Bow, socks, Snow white costume....yes i had plans on her being snow white. I cry when i hear twinkle twinkle little star, why, Its a song we sang to her in my belly and in the hospital. It became a staple that even her nurses would sing it to her to get her to settle. I crumble when i smell her, yes its possbile, its just a light "heavenly" scent......It hard to show jimmie his sissy through pictures when other kids have their older siblings. One day i am afriad he will become ashamed and try to hide the fact that his older sister is in Heaven. Holidays....4th of july.... she was/is our firecracker and that was HER DAY and she knew it. As for people.....little girls around her age is hard to see.
Sometimes I ask myself "I wonder if THEY miss us or If THEY think about how we are doing?"
As most of yall know My husbands Bio-Dad isnt in our lives. While taking photos of my husband with our son i thought to myself 'i wonder if he cares im having to help his son learn how to become a father? I wonder if he wants to see his first and only grandson?'
Truth is if he called Mike would answer, mike would consider forgiving and forgetting. all he would have to do IS CALL and PRETEND TO BE INTERESTED!!!!!
I just wonder if he wants that relationship. I wonder if he wonders about Michael.
hmmmmmmmmmm
I also wonder about other family members wonder what it might be like to see our rainbow in person???
That Moment that brings all those feeling back. That one song that comes on. That Feeling you once thought you had a handle on come back like a thousand times stronger. You don't know until you've been there done it. Having to make that hard decision to let them go. Hearing the drs say there nothing more they can do. And that what was possible is. Having what seems like seconds when its hours to make. Watching you family met this tiny person for the first and the last time. Trying to make since of something that once was sooooo far away. Wanting it all to be fake. wanting it to be a cruel joke. Wanting just that much longer. Happy because they will be no longer struggling. Sad because your loosing something you created. Happy Because you know whats waiting for her. Angry because it no fair.
And then Having to Snap back into reallity because you have your Rainbow. Who looks alot like Her. Grieving the things Kennedy didnt but Happy to get to do them with Jimmie. Grief comes in waves some days stronger than others. Every wave get eaiser to take. Some days you just want to lay in bed but knowing your child needs you is stronger. Having a rainbow is HARD but rewarding. Its a daily Struggle that you have to continue to move forward......
One Year ago I was preparing all the little girl thing...bows, skirts, and boots. But Still I was unsure of what to expect, There weren't any books(that we Knew of). Who expects to wake up and says "i think i'm going to have a special child!". As we embarked on the unknown, we befriended NICU nurses who told us what we might expect. We met some not so nice people too. Through Kennedy's Struggles, We, as a couple became stronger and began making decisions better. But on the other side......It made us tell the cold hard truth. We became stronger people. As we became a better pair, we learned we were expecting our rainbow. Everyone kept telling me how strong i was...truth is i am weak, i wanted to yell and scream with fear. It wasn't until I had a BIG LONG talk with BIG MAN UPSTAIRS! I was weak until HE gave me the strength. So i Set out to find a "cliche" way of showing how strong i felt. It just happened to be a superman shirt. Which happens to be our nephews "signature" through his Kidney Fight. I killed two birds with one shot.
If anyone has any question or were just wonder please feel free to ask, we are and open book
The Other day while out and about I had an older woman ask "Do you Know God?".....I guess it must have had something to do with the big belly and no ring. But I looked at her and smiled and said "ma'am If you knew God the way I do you wouldn't be asking that question." She looked baffled but continued " How is that?". I continued to tell her "After loosing my daughter 22 days after she was born to a defect, I pray, you never have to see. My faith is bigger than anything a church can hold. Me and God, we have had our fair share of fights but I am blessed to have known my daughter. My faith it shook but I still stand stronger than ever with my HUSBAND beside me." At this point a couple of her friends had gathered and all of them had watery eyes. I countined to tell them " I maybe young, I may not know a lot, but my daughter in her 22 days taught me more than any school or church could teach me. Don't feel sorry for me, but rather yet pray your kids, grandkids aren't affected but a Congenital Heart Defect. So to answer your question......Yes I know God, I know him in my heart, He Lives on my couch, He is taking care of my daughter until I can get there." They were all just standing there with there 60+ brains blown to shreds. I didn't mean to go off on them but it seem like in this small town they are judging a young pregnant woman who took off her wedding ring to do house work. So I had had enough and yeah I may have made some enemies but at least she could go back to her church and tell them about me. and maybe Just maybe one person will listen and learn and start to ask questions.......
In Reflection I have had a few questions I couldn't answer until now......
What does it feel Like to be an Angel Parent?
Well to be honest when you loose a baby that you only spend a handful of moment with. It feels like you are Babysitting. I have worked in daycare, and gotten really close kids. But this is like having a part of you that you are watching and can do only certain things with. Being an Angel parent, for me, Means I have to push that much harder to help people remember my child. I have Pictures and those Pictures I LOVE to share. If my friends can share Pictures of there Child why cant I? Being an Angel parent means that I have on memories not Moments.
What is it that's the hardest for yall?
The hardest thing is not being able to parent. Not being able to go to the crib and grab her and love her. Not being able to smell the poopy diapers. Not being woke up at 3am because shes hungry or needs a diaper change. WALKING OUT OF THE HOSPITAL WITHOUT OUR CHILD.
What's your biggest fear with your rainbow?
NOt being able to hold, love or cuddle him. Not being able to leave the hospital with Him. Not being able to change diapers, feed him.....you name it, Its passed through our Mind.
If you have any questions for yes please ask, or email mommy1fuller(at)gmail(dot)com
5:30am-- Headed to hospital to have our SPECIAL HEART First Child
6:00am- Started Iv's
630am- Started Piticin
As labor Progressed I was soooooo Nervous
10ish-- Dr D, Popped my water
1030-11am-- asked for Demerol, which made me throw up the purple pop cycle. So they gave me a little more. My Husband almost got painted if you know what I mean.
11am-300pm-- Labor slowly progressed, I don't remember much I know I asked for Demerol twice. I wanted to sleep, my mom had to stay beside me the WHOLE time. She wanted to go outside once and made it down to the lobby, before my husband and sister had to call her back up. I know I was so relaxed at on point I almost stopped breathing....bad habit.
3pm- I told my nurse I needed to pee, so she helped me. then roughly 5-10mins later I Screamed I need to push, she was like noo not yet wait for the dr. I told her but its just happening. I couldn't see the smile on my moms face but I know that she was, she told me this would happen (I wanted to know the honest truth and she told me)
315pm-- I pushed and pushed, I know at one point I saw the nurses attending to my sister I didn't know what was going on I just didn't her hurt.
3:28PM-- SHE WAS HERE!!! When they delived her head I SCREAMED " JUST GET HER OUT", reason being she was squirming and moving and it felt "funny". My mom was smiling, My Husband was crying. My sister well idk where she ended up.
"The Love of a Mother NEVER Stops"......NEVER, even when you have to learn to Parent in a different way. You lost your child, now you must find a new way to parent. A new You, a new side to life.
"How are you doing?" --- I'm fine, I'm good, It's going......when secretly I wanna say....I AM DIEING, I lost my child I don't know what to do, emotionally a wreck today, didn't really wanna wake up and have to handle the emptiness in my heart, Cant handle it, I need to scream.
Learning to Find the new YOU or the New US, is the hardest Journey. Moms feel empty while dads feel like theres something they should be doing. Waking and getting up and moving forward is the hardest but greatest feat. If you can wake up and say "I CAN DO THIS BECAUSE OF YOU" Life without a child isn't the easiest, Give a newly angeled parent a break. Don't ask "how are you" we will lie...and then turn and cry....just smile and say "I am hear to listen..." You'll get a better response, I promise.
Be a listening ear instead of the one that make us relive it day to day.
Greif has no time line, no wave length, no door. It comes in wave, I have good days and Bad, I just remind myself I need more good then bad.....I am positive but I want to be negative. Sometimes I let the negative in but have to remind myself it wont always be that way. My faith is strong, while I am weak. I am strong because I know weakness. I am Weak because I am Human.
A daddy hurts too.. A while back I shared my husbands side, but will share it again....
I don’t know where to begin or even how to start but this is my version of becoming a daddy, then becoming a daddy to a beautiful angel, and back to being a daddy again… It all started one chilly morning in November 2011 my beautiful wife woke me up and told me she had a surprise for me. As she guided me through the house to the bathroom I could tell she was excited. I walked into the bathroom to find 4, yes 4 pregnancy tests lying on the counter. I looked at them all and they were all positive. I smiled and at the same time my heart sank. I was actually going to be a daddy. I was so happy and scared at the same time. As time went by we started seeing a few doctors and I finally got to see my baby for the first time. I could not believe I was going to be a daddy. The doctors started questioning a few things they had been seeing on the last few ultrasounds. But the next thing the doctor said hit me harder than a ton of bricks. “I think there might be something wrong” at that time I broke. I wanted to know what was wrong with my little one and was there anything I could do to help. I would do anything to make sure they were healthy.
After I found out that my little one had a heart condition I stressed and always questioned myself weather my smoking was what caused my baby to have this. I finally got so tired of the feeling that on February 1, 2012 I quit smoking and stopped going around other people who smoked. It was one of the hardest things that I did but I knew it was the best thing for my baby. As the months flew by we started growing even more excited. We wanted to check on sea monkey’s heart to see if it had grown any more. In late February 2012 we went to see weather sea money was going to be a little boy or a little girl. I was so shocked when the nurse said it was a little girl that I asked her to check again. I really wanted a boy but God had other plans. I was so scared after we found out monkey was a little girl. All I could think about was making sure I had a 12 gage to scare that first boy.
I was always afraid to let my wife go without me to one doctor because every time she would call after the visit crying. I was about tired of the doctor and one day I thought about going to the doctor’s office and kicking his teeth down his throat. Thankfully I did not and I started realizing that he might be doing it for a reason. Sure enough he was.
As spring flowers grew so did my anxiety to becoming a daddy. I wanted my little girl here, I wanted to hold her, tell her that I loved her, and tell her that daddy was going to do whatever it took to make her better. Until finally the day came, it was way too early but we had to be at the hospital at 5 am. I was not going to be late either I wanted my baby here. I knew I would not be able to hold her right after she was born but I knew she would be ok once we got her here. I remember everyone saying that I was going to faint once I saw her but I knew there was no chance I was going to miss seeing her for the first time. Then after what seemed like days the doctors said the magic number 10! Here we go I thought, I knew I would see her pretty little face in just a short time. Then like magic there she was my 5lb 13oz little girl. I knew I had to go with her to make sure everything was fine. I told her mommy that I loved her and asked if they would be ok. I ran like the wind to catch up with my little girl. I could not sleep one bit until I got to hold her in my arms. Mommy was going to go first since we had to do whatever it took to get her milk to start. Sure enough holding baby Kenni worked and we were back in no time for me to hold her. I was so scared I would drop her that I almost passed out. For the first time it hit me I was going to love this little one until the day I died. I held her little body until I could not feel my fingers any longer but I could not let her go. Then my world turned upside down. We knew she had to have surgery and we needed to prepare ourselves to not be able to hold her until she was healed. I told myself I would never let her go if she made it through all that was about to happen. I asked God that night to not ever let her suffer any pain as we took it day by day. After 3 days of being in the hospital they told us we could go home but it hurt leaving her there even though I knew she was in the best arms I could ask for. The Sunday we left the hospital we made it home and had a small chance to grab some food and we decided to go get a pump to help mommy pump.
My world stopped when I saw the number on my screen. It was the nurse in charge of Kennedy. I heard noises I had only heard on Grey’s Anatomy or ER. She was calling to tell me my daughter heart was not working and we needed to get there as soon as possible. I did not want to tell my wife because I knew she would feel like it was because we left her at the hospital. I through all of my thoughts out of my head and said I had to drive. With my wife screaming in the car next to me I did 85 to the hospital willing to run anyone off the road that did not want to get out of my way. We got there in 5 minutes and they told me they had her heart started again and they had us all wait in a room down the hall. Then the sirens went off again but this time it was in a room a few doors down from Kenni. I thought there was no way this can happen not on this night not in my lifetime. I could not see straight but I had to see her. I had to see her heartbeat. She had to know daddy was here. I grabbed the nearest person and said you have to let me see her. The other little man did not make it through the night and I could not sleep knowing that my little girl was just down the hall. I prayed and prayed until finally she was stable. We stayed at the hospital for the next week so she would know we were there. I would go see her at least 4 times a day. As she started to improve we started venturing out once again hoping and praying that we would not get a call. Finally about a week after her fire drill, we stayed a night away from the hospital. I could barely sleep that night and called the hospital several times to make sure everything was going ok. I finally returned to work but could not forget to go see her every morning for at least 20-30 minutes. I knew the PICU would open at 7:00 am sharp so I would wake up about 6:00 am and left the house no later than 6:45 am. I as waiting by the door until my clock hit 7. I would rush to be beside her so she could feel daddy’s touch. I only missed 1 morning because I was not feeling very good. I would get a noon report from her mommy or the nurses depending on how late mommy got to the hospital. Every day when I got off I would run home, get changed and off to the hospital I went but this time with mommy in tow. I wanted to spend every waking moment with her and would have slept in her room if they would have let me. One morning it was hard to let go, it was hard to say I Love You, and hard to say I will see you later. One morning I did not want to go to work. Some people say it is a father’s intuition or maybe you can just call it a gut feeling. The morning of the 27 th her 22 nd day with us I could not tear myself away from her room. I stayed as long as I could with my heart in my trough, and tears in my eyes. Knowing I had to be at work, I finally had to swallow my feeling and put my game face on. It was the hardest moment when I bent down and gave my beautiful baby girl a kiss. I asked the nurse to call me every few hours to give me a report on how she was doing. I cried all the way to work and finally showed up about 8:30 not wanting to be there and not feeling very well. Everyone could tell there was something on my mind but I told them not to worry about it that everything would be ok. I felt it in my heart that it was a lie but I forced myself to believe it was true. It was around 12 and I was waiting on an update from mommy when I got an unexpected call. It was the doctor; he wanted to see what was going on with Kenni’s readings. She was retaining fluids and her intake was much greater than her output. He wanted to go in and explore to see if there was any explanation for what was going on. I told him to do the surgery and see what was happening with my baby. I then had to tell her mommy who was on her way to the hospital. That was one of the hardest things I had to do because I did not have all of the answers she wanted to know. I was in a daze a really thick fog I could not figure out how to get out of. I could barely stand because all of the thoughts were racing through my mind. Was she going to be ok? Will they figure out what is wrong? I could not stand it any longer I had to get out of there. I told everyone I had to go, I shut down everything and just left. Everyone knew something was wrong but I knew it in my heart I was losing my little girl. I only thought I could fight to keep her. About 15 minutes after I left work I was on my way to get to my little girl when I got the call the doctors wanted to see me and my wife. I lost it. I knew what the doctors were going to tell me. Now my only thought was get to my wife before they tell her and I am not there to hold her up. The doctors came in and told us the news that there was nothing else they could do. My wife crumbled. as I tried to catch her. The next thing I remember is making phone calls to tell the family to come see her. We wanted everyone to celebrate the 22 greatest days that I truly felt like a father. I told everyone that we would celebrate her day with balloons, flowers, and joy in our hearts. No sad colors were allowed. Her pastor ware a Hawaiian shirt, and everyone ware bright beautiful colors.
The only thing people don’t tell you is how to deal with the emptiness that is left behind. It took me a week to even think about going back to work. Even then I would break down when I thought about her. I would see the people who really cared about her and it would hurt to put on a fake smile and say I was ok. All I wanted to do was scream but I knew some people would not understand. I decided to hide my feeling and let them out only around people I knew truly understood. It is still hard to talk about her some days, but let me ask you, how do you ever get over losing someone who you love with all of your heart and soul and would give up you own life to save? How do you ever get over the emptiness you feel when you hear a baby cry? How do you stop the rage when someone else gives up a beautiful gift like the one you just lost? How do you get over the feelings like it is going to happen to you again? Then only way that I have ever learned is by doing what a very wise old man told me to do one day. He said: “Son, all you have to do is let go, let God, and believe. If you don’t you don’t ever know what could happen".
I hope to one day explain all that you don't understand. I hope to teach you right from wrong. We may not always agree but I hope you understand. I know that one day you wont be my baby and ill have to set you free. But Don't forget where you come from or how you got there. One day You'll learn about your sister that's in heaven, one day you learn to count, one day you'll learn that your uncles have probably the coolest things to teach you. Yes you'll probably think mom and dad are dumb and smart. And you might even compare Mary and Joseph's story to our story, But Nothing can compare to theirs. Faith is the only thing you can count on. God is the only Judge not the girl laughing at you. Your Best Friend will always be your DOG! Regardless if they tell you its ok to drink, its not. Your dad is the strongest man I know so lean on him once in a while. Sports aren't everything. Try new thing. Don't be afraid to talk to somebody about your feeling. Crying is ok, it shows your a real man. Feelings aren't just for girls. Tell the Girl how you feel, don't be afraid to ask her how she feels. Communication is key. Your Sister is your guardian angel, speak to her and she'll speak back. I may cry because I think of her while your doing something. Her Birthday is to be celebrated because we survived. You may not understand why I smile at you, just know I love you always. Don't be afraid to fly, spread your wings. BE HAPPY!! See the good in people. See the positive in a bad situation. It maybe hard be try, and when you cant LEAN ON FAITH FOR THE ANSWER. Try and smile through tears and sorrow you will feel abit better.
I Have walked through the valley of the shadow of DEATH!
"Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff they comfort me"Psalm 23:4
Literally, In 3 short months My oldest will be a year. She Is an Angel. I want to celebrate Her Birthday not because she wont be here but as a triumph I and her father have gone through. Simply to say " Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me" To show the world and myself that yes I lost a kid but I have overcome it all.
We want the world to know Kennedy Survived, Though she may not be here on earth she will be forever in our heart.
Jimmie Wayde due close to Kennedys 1st Angelversy . Our Rainbow, Our Bouncing Baby Boy............ This pregnancy hasn't been ideal. I have a dynamic cervix. I have Heart burn everytime I turn around. I feel soooo much bigger than I really am, due to him being so big( almost 2lb @26 wks). He Likes to sit directly on my bladder. I cant Do much.......................................................................................................................................But I did say I would gain weight and be on bedrest if that meant the baby was for sure coming home.
I have a healthy baby, I cant complain much. we are in the mist of getting ready for him. Prepareing the nursery, registering, planning our trips after him. But in a way I am in slow motion because of Kennedy. Yes I know hes coming home but until he dose I WONT BELIVE IT!!!
Yes around Kennedys 1st angelversery , Sad YES, overjoyed YES, Bitter Sweet YES. so many emotions in ONE.
We found out November 22nd 2012 (yes the number 22 again), that we were expecting our Rainbow baby. We told only the bare people for fear. Went to a couple of dr appt then told the world. Held our breath until the 18th week(feb 21 only one day after we found out about Kennedys heart) Were Overjoyed to find out everything looked normal but were on tiptoes until the Cardiologist signed off. Found out we were having a Boy...nervous YES but really a BOY. I kinds had hoped for a little girl just because u didn't want to have to change. But Because "BUG" was a boy we NEEDED too. oh And Bug came about because I was SUPER sick until about the 12-14wks. As I look back we are moving faster than Kennedys pregnancy did, because when we found out about her heart our world JUST STOPPED. We were thrown into the world of CHD's without "proper" education. That's why we Strive to talk about her. Its Like our little Mission to spread the word and let other young parents know they aren't alone.
Only "issue" with this pregnancy is a dynamic Cervix AGAIN!!!!!
"Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope. In some circles, babies born to families after the loss of a child are referred to as "Rainbow Babies." The idea is that the baby is like a rainbow after a storm. "Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope
Jimmie Wayde......Jimmie after Michael's Grandfather who know has custody of Kennedy and Wayde because we both love the name. Theres Been some questions about His name. Trust me its not the ideal name but the meaning and story behind it make it all worth it. We named Kennedy after My grandfather so why wouldnt we name our first boy after his. Take it or Leave it...its our child i dont ask about your name chooses.
Whether your New, young, Old or a "Pro", Grieving Hurts. No, its not far or predigest. Loss doesn't look for you, but it Finds you. You were meant for a higher realm of parenting. You can do it even if it feels like you cant. Look to a Higher Power, whether that be God or your belief. You cant carry that burden of losing a child young or old. God lost a child, so why wouldn't he understand. He wants Us to lean on Him in our time of need. Death is a sneaky thing but its a part of life and some learn that far to soon. Our books are pre-written we cant change that all we can do is learn to adapt. You don't just GET OVER the death, you learn to live with the pain of that loss. You cant just let go, you learn to see the little signs sent from heaven from your somebody. Whether that be pennies, feathers, or MOTHS, you learn the signs and you love to see them. Someone once told me that they miss you twice as much as you miss them because they see your pain but cant physically help. Learning the new you will be hard but find that one thing that you love to do and do it in HONOR of your angel. Don't Let others influence you, Don't get mad when they tell you they know how you feel( when you KNOW they don't), Don't ever change YOU. Your angel will guide you to the answer good or bad. Try to never stop communicating with your partner, husband, or close friend. Lean on them and let them lean back.
From one Grieving mother to another......I don't know how you feel but i do know what your going through. Take a shower, scream, cry, let your self feel the pain....Get out an look up and smile because you know your angel is smiling saying "you sure do look silly from my view." Write down your experience's, not to review right away, but rather yet to recall later. Lastly Smile, it wont feel like this forever, you will adapt and learn how to handle the pain.
I saw you in the wind,I saw you in the moon, I saw you inthe little girl walking past me in the store. I saw you in the way you father looked at me. I saw you in my Smile.
To Know what true lost is, Is to to loose a child. A group that shouldnt be hidden but rather yet SCREAMED FROM THE MOUTAIN TOPS. A parent should never out live their child, A parent shouldnt be picking out cascket, Before the parent has picked out daycare. I wanna say it'll all be ok but truth is.....It wont. It hurts like hell, It a pain thats worse than anything. I am still walking down the path of angel parenthood, the path unknown, The path less travled. I have a few parents i can look up to but honestly they are going through it to, I have a few that look up to me but they to know i am going through this. walking around places seeing parents who could care less about there kids then theres parent who are new to it and are scared. Then theres me who doesnt fit in to any catagory but why should I. I have found certian things are harder than others.....1st birthday partys for friends babies, knowing Kennedy will be forever 1 or 22days. Knowing Kennedy wont ever smash a cake, knowing that 2,3,4....ect will never come. Yes i have Bug-- Jimmie wayde, but it would have been fun to have all the first with kennedy that Jimmie will get.
Working toward a better tomorrow, Means that today will be a fight but i am ready. Through all of this Me and my Husband are ALOT closer, we are about to know when to push through the pain and when to just snuggle. Watching him go through this is hard, I know hes happy that he is having a little boy but i know secretly he wanted a little girl that would allow him to be "girly"....but i know that when he sees his son he will be extatic.
"How did you stay strong and positive throughout everything ?"
"Will he need surgery again in his life?"
"And how are you doing?"
"She would want you to be happy... ( my answer usually is that I hope she is not missing me as much)"
"I hate when people ask me for advice when they know someone else who loses a child (SIDS, accident, stillbirth, etc.) as if they're the same thing. I have to tell them every situation is different and then I feel like a jerk."
"you're so strong" and "I don't know how you do it." I am just an ordinary woman raising an extraordinary child. I learn from him.
"will he be able to do things other kids can"
is he gonna be ok"
'both your kids? do you have a heart problem too??
"what did you do to her?"
after your baby dies) "What can we do to help?" - I think it's really nice that people ask, but we don't know what to tell them!
The what can I do was a hard one. Also the people who lost a loved one who would tell me that they knew what I was going through. I would just look at them and ask' oh really, you had a child die?' that usually shut them up real fast
I also still have a hard time with how many kids do you have. I never know how to answer it and even then it depends on who it is, will I see them again or not,do I feel like explaining the whole story, etc. And the second things is not so much a question I get about being an angel parent but the fact that no one talks about her or asks questions, like she didn't exist.
"THERES NOTHING MORE I CAN DO FOR YOUR CHILD"
Words that don't mean to hurt, But silently they do.
I am One of the Ones who would never WISH my story on anyone, Yes i see some that COULD grow from it. I have gone through the most painful thing i will EVER go through.
I am Stronger than i even know, but i am strong because i know where to get my Strength(God and My Daughter). I learned from her so much. I look 23 on the outside, but i feel 100+. I Have traveled a bumpy path but my hope is that other learn that I may not have choose this but I choose to see the POSITIVE. As a heart family you learn that strength doesn't come from earthly things but FROM ABOVE! Each heart family have different struggles but we have one thing in common....Our Belief in a Higher/Greater Power. We all travel hand and hand, ready for the unknown praying the family next to you gets better news than you.
Not only The Heart community, But the grieving mom....... I asked all sorts of moms-- Heart parents with kids, Heart Parents with angels(different stages of grief), CDH mom with Angels....ALL!!
All whom would never want this to be there story's.
Next time you see someone cry or sad THINK BEFORE YOU SPEAK and just be there. They will come out they just may need to cry or be sad for that moment.
Some of the Hardest Moments are the ones you dont know about.
~ It means more than you know, Your spending hours on end in a hospital room, when you worked soooo hard on a nursery for your child. You attend metting between drs, instead of teachers. You sign papers for procedures you would never want done on you much less your child. You walk past rooms were there was a baby the day before but now you pass as the parents are leaving with all the stuff, you turn to your baby and pray and beg and barter with God. But little did you know He lost His Son to. I had planned soooooo many things for kennedy and wanted to show her to the world as the baby that could. But little did i know Kennedy would show me all the things I hadn't thought about.
About a week ago I asked My Husband to write down HIS VEIW, yes i knew it would be hard but seeing how this is OUR BLOG. It was only right, Here Is what he wrote...No Sad Tears Only Happy ones.
I don’t know where to begin or even how to start but this is my version of becoming a daddy, then becoming a daddy to a beautiful angel, and back to being a daddy again…
It all started one chilly morning in November 2011 my beautiful wife woke me up and told me she had a surprise for me. As she guided me through the house to the bathroom I could tell she was excited. I walked into the bathroom to find 4, yes 4 pregnancy tests lying on the counter. I looked at them all and they were all positive. I smiled and at the same time my heart sank. I was actually going to be a daddy. I was so happy and scared at the same time.
As time went by we started seeing a few doctors and I finally got to see my baby for the first time. I could not believe I was going to be a daddy. The doctors started questioning a few things they had been seeing on the last few ultrasounds. But the next thing the doctor said hit me harder than a ton of bricks. “I think there might be something wrong” at that time I broke. I wanted to know what was wrong with my little one and was there anything I could do to help. I would do anything to make sure they were healthy.
After I found out that my little one had a heart condition I stressed and always questioned myself weather my smoking was what caused my baby to have this. I finally got so tired of the feeling that on February 1, 2012 I quit smoking and stopped going around other people who smoked. It was one of the hardest things that I did but I knew it was the best thing for my baby.
As the months flew by we started growing even more excited. We wanted to check on sea monkey’s heart to see if it had grown any more. In late February 2012 we went to see weather sea money was going to be a little boy or a little girl. I was so shocked when the nurse said it was a little girl that I asked her to check again. I really wanted a boy but God had other plans. I was so scared after we found out monkey was a little girl. All I could think about was making sure I had a 12 gage to scare that first boy.
I was always afraid to let my wife go without me to one doctor because every time she would call after the visit crying. I was about tired of the doctor and one day I thought about going to the doctor’s office and kicking his teeth down his throat. Thankfully I did not and I started realizing that he might be doing it for a reason. Sure enough he was.
As spring flowers grew so did my anxiety to becoming a daddy. I wanted my little girl here, I wanted to hold her, tell her that I loved her, and tell her that daddy was going to do whatever it took to make her better. Until finally the day came, it was way too early but we had to be at the hospital at 5 am. I was not going to be late either I wanted my baby here. I knew I would not be able to hold her right after she was born but I knew she would be ok once we got her here. I remember everyone saying that I was going to faint once I saw her but I knew there was no chance I was going to miss seeing her for the first time. Then after what seemed like days the doctors said the magic number 10! Here we go I thought, I knew I would see her pretty little face in just a short time. Then like magic there she was my 5lb 13oz little girl. I knew I had to go with her to make sure everything was fine. I told her mommy that I loved her and asked if they would be ok. I ran like the wind to catch up with my little girl. I could not sleep one bit until I got to hold her in my arms. Mommy was going to go first since we had to do whatever it took to get her milk to start. Sure enough holding baby Kenni worked and we were back in no time for me to hold her. I was so scared I would drop her that I almost passed out. For the first time it hit me I was going to love this little one until the day I died. I held her little body until I could not feel my fingers any longer but I could not let her go.
Then my world turned upside down. We knew she had to have surgery and we needed to prepare ourselves to not be able to hold her until she was healed. I told myself I would never let her go if she made it through all that was about to happen. I asked God that night to not ever let her suffer any pain as we took it day by day. After 3 days of being in the hospital they told us we could go home but it hurt leaving her there even though I knew she was in the best arms I could ask for. The Sunday we left the hospital we made it home and had a small chance to grab some food and we decided to go get a pump to help mommy pump.
My world stopped when I saw the number on my screen. It was the nurse in charge of Kennedy. I heard noises I had only heard on Grey’s Anatomy or ER. She was calling to tell me my daughter heart was not working and we needed to get there as soon as possible. I did not want to tell my wife because I knew she would feel like it was because we left her at the hospital. I through all of my thoughts out of my head and said I had to drive. With my wife screaming in the car next to me I did 85 to the hospital willing to run anyone off the road that did not want to get out of my way. We got there in 5 minutes and they told me they had her heart started again and they had us all wait in a room down the hall. Then the sirens went off again but this time it was in a room a few doors down from Kenni. I thought there was no way this can happen not on this night not in my lifetime. I could not see straight but I had to see her. I had to see her heartbeat. She had to know daddy was here. I grabbed the nearest person and said you have to let me see her. The other little man did not make it through the night and I could not sleep knowing that my little girl was just down the hall. I prayed and prayed until finally she was stable.
We stayed at the hospital for the next week so she would know we were there. I would go see her at least 4 times a day. As she started to improve we started venturing out once again hoping and praying that we would not get a call. Finally about a week after her fire drill, we stayed a night away from the hospital. I could barely sleep that night and called the hospital several times to make sure everything was going ok. I finally returned to work but could not forget to go see her every morning for at least 20-30 minutes. I knew the PICU would open at 7:00 am sharp so I would wake up about 6:00 am and left the house no later than 6:45 am. I as waiting by the door until my clock hit 7. I would rush to be beside her so she could feel daddy’s touch. I only missed 1 morning because I was not feeling very good. I would get a noon report from her mommy or the nurses depending on how late mommy got to the hospital. Every day when I got off I would run home, get changed and off to the hospital I went but this time with mommy in tow. I wanted to spend every waking moment with her and would have slept in her room if they would have let me.
One morning it was hard to let go, it was hard to say I Love You, and hard to say I will see you later. One morning I did not want to go to work. Some people say it is a father’s intuition or maybe you can just call it a gut feeling. The morning of the 27th her 22ndday with us I could not tear myself away from her room. I stayed as long as I could with my heart in my trough, and tears in my eyes. Knowing I had to be at work, I finally had to swallow my feeling and put my game face on. It was the hardest moment when I bent down and gave my beautiful baby girl a kiss. I asked the nurse to call me every few hours to give me a report on how she was doing. I cried all the way to work and finally showed up about 8:30 not wanting to be there and not feeling very well. Everyone could tell there was something on my mind but I told them not to worry about it that everything would be ok. I felt it in my heart that it was a lie but I forced myself to believe it was true. It was around 12 and I was waiting on an update from mommy when I got an unexpected call. It was the doctor; he wanted to see what was going on with Kenni’s readings. She was retaining fluids and her intake was much greater than her output. He wanted to go in and explore to see if there was any explanation for what was going on. I told him to do the surgery and see what was happening with my baby. I then had to tell her mommy who was on her way to the hospital. That was one of the hardest things I had to do because I did not have all of the answers she wanted to know. I was in a daze, a really thick fog I could not figure out how to get out of. I could barely stand because all of the thoughts were racing through my mind. Was she going to be ok? Will they figure out what is wrong? I could not stand it any longer I had to get out of there. I told everyone I had to go, I shut down everything and just left. Everyone knew something was wrong but I knew it in my heart I was losing my little girl. I only thought I could fight to keep her. About 15 minutes after I left work I was on my way to get to my little girl when I got the call the doctors wanted to see me and my wife. I lost it. I knew what the doctors were going to tell me. Now my only thought was get to my wife before they tell her and I am not there to hold her up. The doctors came in and told us the news that there was nothing else they could do. My wife crumbled as I tried to catch her. The next thing I remember is making phone calls to tell the family to come see her.
We wanted everyone to celebrate the 22 greatest days that I truly felt like a father. I told everyone that we would celebrate her day with balloons, flowers, and joy in our hearts. No sad colors were allowed. Her pastor ware a Hawaiian shirt, and everyone ware beautiful bright colors.
The only thing people don’t tell you is how to deal with the emptiness that is left behind. It took me a week to even think about going back to work. Even then I would break down when I thought about her. I would see the people who really cared about her and it would hurt to put on a fake smile and say I was ok. All I wanted to do was scream but I knew some people would not understand. I decided to hide my feeling and let them out only around people I knew truly understood.
It is still hard to talk about her some days, but let me ask you, how do you ever get over losing someone who you love with all of your heart and soul and would give up you own life to save?
How do you ever get over the emptiness you feel when you hear a baby cry?
How do you stop the rage when someone else gives up a beautiful gift like the one you just lost?
How do you get over the feelings like it is going to happen to you again?
Then only way that I have ever learned is by doing what a very wise old man told me to do one day. He said:
“Son, all you have to do is let go, let God, and believe.
If you don’t you don’t ever know what could happen.”
Our Love Dosen't Stop Just Because Her Heart Did, Our love will continue until we meet again!!
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