What I Learned from My Baby Who Died

IMG_5553Two years ago today, at 7:23 pm, my baby boy passed away from my arms and went straight into the arms of Jesus. Though his death hurts immensely, that little guy taught me several lessons in his short life that usually take people many years to learn. I’m blessed to have had almost nine months to learn from him.

Among those lessons, I learned to be more compassionate, considerate and kind.

He taught me to be less judgmental of others because you never really know what anyone is going through on a day-to-day basis.

He taught me to be brave and courageous. After he passed away, I discovered a layer of badass fearlessness that propels me to go after every dream I’ve ever had. So, when people see that I’m a public relations expert, actress, model, author, television host, business owner, property owner, world-renown speaker, and whatever other dream God lays on my heart from now until eternity, we’ll all have my baby boy to thank for being my inspiration to get off of my behind and actually go for it.

He taught me to be aware of everything around me. At one point, his doctors told us that because of his small chin size that his tongue couldn’t lay down flat in his mouth, which could’ve caused his tongue to fall back and cover his airway. I never paid attention to people’s chins before—but Lord knows I do now.

He taught me to live my truth in its entire manifestation. My truth is that just because my son died, it doesn’t mean that I’m not a mom. And just because the miracle we desired didn’t go the way we planned, it doesn’t mean that a miracle didn’t take place. These are my truths and I live in them and embrace them every day of my life.

My baby’s death taught me to cherish every single moment. As a parent of a NICU baby, you watch several monitors and you listen to every sound that those monitors make all day, every day. You hang on to any sign of hope and your emotions fluctuate for as long as you can take it until you fall asleep, wake up and start the cycle all over again. You become accustomed to your child’s medical status changing from minute to minute, sometimes second to second. And in the midst of those time keeping measures, you learn to hold onto every second as though it is the only second that will ever matter.

I’ve learned to be more gentle on myself and with others. God freely gives grace to all of us to get it right. And even when we don’t, He extends it again and again and again. There’s no reason why I can’t extend that same grace to myself and others.

Finally, my baby taught me to love deeply, enjoy experiences fully and to live life purposefully. I have learned to not take ever take any person, thing or experience for granted. Tomorrow is not promised and each person has the awesome responsibility of cherishing each day as it comes.

Thank you, little boy, for being one of your mama’s best teachers.IMG_5499

-Danielle Nicole Jones

Happy Father’s Day; Dads Hurt Too

If you want to get my husband excited, ask him about his son.

If you want to make my husband happy, ask him about his son.

If you want to get my husband to talk, ask him about his son.

Over the last two years, I’ve learned that there is nothing that makes my husband light up more than when people spark a conversation with him about “his boy.” His face beams with pride as he talks about his dreams of his son being a linebacker and how he envisioned the days when he and his son would have the daily goal of being involved in so much ruckus around our home that they would both “get in trouble with me.”

I’ve met many other dads with similar sentiments. Just because their children aren’t physically here, it doesn’t mean that they stopped being dads. It means that fatherhood for them looks different than what they imagined. Most of the times, people are so concerned about how a woman is doing after the loss of a child that they neglect to think about the man who carried the seed that created the child. So on this Father’s Day, don’t forget that dads hurt too. Let a bereaved father who is hurting know that he’s still a dad and that he is loved.

Light, Love and Blessings!
Happy Father’s Day!

-Danielle Nicole Jones

 

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*Taken from Remembermyfootprints.com.

 

A Dad Hurts Too

Happy Mother’s Day, #imstillamom

My child passing away does not change the fact that I’m still a mom. In fact, it never will.

For many women, Mother’s Day and the days that lead up to it bring a multitude of

Junior's Cremation Bear

A picture of Junior and his special bear. Every parent who has experienced infant loss knows what this bear is <3.

emotions, especially for bereaved mothers. For some, there is grief, anxiety, anger, sadness, hopelessness, despair, confusion and the feeling of literally being heartbroken. And for many women whose only or whose every pregnancy and/or childbirth experience has ended in a miscarriage or infant loss, Mother’s Day hurts from the pain that comes from these same women questioning their own status, or having others question their status as a mother on a day that celebrates moms.  

 

To the woman who is reading this and who knows what this feels like, I want you to know that living through miscarriage(s), pregnancy loss(es), SIDS, infant death(s) or the death of a child or children  doesn’t negate you being a mother. In fact, your experience(s) makes you one of the strongest moms there is. Your ability to remember and honor your child’s or children’s lives after they’ve passed away–even in the midst of heartache and on some days, truly unbearable pain–means that you, my dear, are a mom who has extra-ordinary love and strength in her heart. 

On Mother’s Day, and the day leading up to it, I’m asking for all of the moms who have lived through the loss of a child, especially pregnancy or infant loss, to raise awareness about this special group of women by creating a social media status with “#imstillamom.” And if they’re brave, “#momof___” with the number of children who they are a mom to (including their children who they have lost to miscarriage, pregnancy loss, SIDS and infant loss). One-in-four women have suffered that type of loss. And I’m one of them. There are moms around the world who know what this feels like–but they don’t have to walk alone, especially on Mother’s Day. And they need to know that they aren’t alone.

To the mama who is struggling on Mother’s Day because of what she’s lived through–know that the day is still for you. You are still a mom, a mommy, a mama and a mother. Nothing and no one will every change that.

Peace, love, light and blessings.
Danielle Nicole Jones
#imstillamom, #yourestillamom
#momof1
#juniorsmommy

Dani Girl_19

As Sure as Tomorrow Comes…..

Today is a day full of excitement for our family as we proudly release our book, “As Sure As Tomorrow Comes: One Couple’s Journey through Loss and Love.”

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Us praying over our son when he passed away in 2015

I won’t lie and say a catch phrase like, “It’s all been worth it,” because the TRUTH is life has been extremely hard over the last 3.5 years. It’s been rough. There have been tears, heartache and nearly unbearable pain caused by several circumstances. Sometimes the “strongest people” are the ones who in the face of adversity choose to “be strong” because to them that is the better option over suicide or over another self-destructive behavior. It is a decision that has to be made day by day. It is a commitment to choosing joy and life no matter how bad the situation may be.

 

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Chris’ car accident in 2014

We have dealt with everything from Chris being diagnosed with Multiple Sclerosis, to me being diagnosed with breast health issues (in fact, four days ago I had yet another surgery to remove areas from my right breast that put me at risk for developing breast cancer), to Chris surviving a horrific car accident and the ultimate tragedy of our son passing away. But, through all of this, even when we questioned God and wondered where He was and when we were upset, we knew that somehow, someway, our story would eventually turn around.

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Chris and his favorite nurse during one of his MS medication infusions.

The Angel Baby Network was the beginning of our story turning around and since its inception and because of it, we’ve started to receive healing and we’ve helped others heal too. We’ve learned that being functional and healing after devastation are options and that in order to live in those spaces, people have to take the first steps towards them. Capture-ABN logo
We pray that our story blesses everyone who comes across it. Our book is not a step-by-step guide on what to do when life sucks. But it is a novel-like true story of two people who decided to bounce back everytime when life tried to knock them down. As Chris always says, everyone is going to have to walk through the rain at some point–but it’s up to them to decide on how they’ll walk through it. We decided to walk through it together and to do so with faith.

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Chris and me getting our personal copy of the book four days ago, before my surgery.

Here’s a link to purchase the book on Amazon. Here’s a link to purchase it off of our publisher’s site, KiCam Projects. And here’s a review of the book from The Good Men Project.  Enjoy!

Peace, blessings, light and love to you and yours,

Danielle and Chris

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Happy New Year…or Not

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Here we are on the last day of 2016 and most people around the world are preparing for New Year celebrations. Some will be at church, some will be toasting champagne, some may be spending a fun evening at home with family or friends and others may be sleeping peacefully as the new year rolls right in. Some will be at lively places like New York City or Las Vegas, while others will be at local celebrations where there will be fireworks and concerts. Some may even be participating in the annual tradition of “watching the ball drop” on television. For what most consider a time of excitement and saying goodbye to the old and hello to the new, New Year’s Eve and New Year’s day for bereaved parents can be extremely difficult. 

My personal experience is this….last year (during the first few months after our son passed away), people had prepared me for “the holidays.” No one said too much to me about Halloween. After all, my husband and I don’t usually do too much for Halloween anyway and as a way to soothe any type of sad feelings that may have crept in on October 31, he and I spent time with our young nieces and passed out candy and greeted all of the little Trick-or-Treaters. People told me that I may not feel as grateful around Thanksgiving while others would probably be very reflective and thankful due to their many blessings. I took a mental note and completely understood and I thoroughly enjoyed being with our families around the dinner tables. People made it clear to me that Christmas may be hard and that as December 25 approached that I may not feel up to decorating or buying gifts for anyone. Again, I secretly remembered that theory and was mentally and emotionally prepared to deal with Christmas coming–but I also had four months to work through all of my emotions since stores and people start preparing for Christmas in September. I ended up loving Christmas, as I did every year, and although the first time I heard a Christmas song, I got teary eyed and had to turn the music off, as the days went by and as Christmas came, I was OK. I enjoyed being on the giving and receiving end of gift giving. But then New Year’s Eve came. And that’s where I lost it. 

No one prepared me for the New Year. No one. So, as our family and friends gathered to celebrate the end of 2015 and the grand entrance of 2016, a jovial spirit of happiness filled the atmosphere. I was good. I was happy too, like I was at every previous New Year’s Eve celebration that I’d ever gone through. And then at 11:58 pm on December 31, it hit me like a ton of bricks. I couldn’t leave 2015 because my baby was born in 2015. And if I left 2015 behind, I would proverbially be leaving my baby, the experience of having him, his 10 days of life and everything that we had experienced with our pregnancy behind. I needed time to stop. I needed everything to come to a freezing halt. People were on the TV getting excited in anticipation of midnight approaching. Our family and friends were cheering and were looking forward to the clock striking 12. People were starting to kiss their loved ones. The television host started the countdown and simultaneously, I had a million thoughts racing through my head as I sat in shock on our loved one’s couch. Everyone around me was counting down too. 10, 9, 8….please, God, please let time stop. 7, 6, 5….Lord, I’m not ready for this. 4,3,2….Oh my God, the New Year is coming. 1….I started sobbing uncontrollably, and hot tears started falling down my face, faster and faster because no matter how hard I tried, they would not stop. Everyone around me was screaming Happy New Year and the people on the television started singing Old Lang Syne, while I was weeping. Everyone else seemed to be excited to leave 2015 behind….but I was not. 

2015 was a defining year for me. It was the year that I became a mother and it was also the year that I lost my child. It was the year that I was full of hope and faith for this little person who would be coming into my, my husband’s and my family’s world and it was the year that that same joy faded as my baby took his last breath’s in my arms. So while everyone else was shouting Happy New Year, I found myself on the floor of a bathroom crying loudly and inconsolably. No one prepared me for the New Year. And why would they? I don’t think anyone thinks about the New Year possibly being a time of sadness. 

Finally after about 30 minutes of wailing, my husband and my two young nieces were able to help me regain my composure. They all gave me hugs and told me that it would be OK. Even if it didn’t feel like I would be, I knew that I eventually I would be OK. Afterall, I had made it 30 minutes into the new year and there would be many more minutes, and days and weeks coming. And since I had already made it those first 30 minutes, I could keep on going. The rest of the night for me was…blah. I was there, I was present but my heart ached because I had gone into a new year and my baby hadn’t. 

I write all of this to say to any bereaved parent, that it is normal to not feel overly excited about the New Year. It is also OK to reflect on your experience and to let others who you trust with your feelings know that you’re having a tough time with all of this “out with the old and in with the new” stuff. In fact, if you know other bereaved parents, I’d recommend sharing your sentiments with them because they’ll be able to understand you better than anyone. 

And on another note-it is even normal if you do feel overly excited about the New Year that is ahead. This past year was probably very difficult for you and there is nothing wrong with being ready to see it end. You have a right to be filled with great anticipation and expectation of what is to come. I am believing with you that your best days are ahead of you. 

No matter how you are feeling, I want you to know that you are loved and are thought about on today and many other days. The New Year is coming, and even if your experience happened in one year, it doesn’t mean that you can’t hold on to the love for your child, the memories you created and the love that you shared for a lifetime. A calendar day changing will never be able to take that from you….not on New Year’s Day or any other day. That kind of love becomes a part of you for forever.

I’m wishing you a peaceful, joyous, blessed and Happy New Year. 

With love,
Danielle 

Happy Birthday, ABN!!!

Today, the Angel Baby Network officially turns one year old and we couldn’t be more proud! Over the last year, we’ve reached 30 babies’ parents and have been able to give them love, hope and support. Over the next year, we plan to at least double the number of families that we reach. We also plan to expand the services that we offer! Cheers to you, Angel Baby Network (ABN)! You can watch the short video below, which recaps some of what we’ve done this year!

#GivingTuesday for Angel Baby Network

According to givingtuesday.org, #GivingTuesday is a global day of giving fueled by the power of social media and collaboration. It is celebrated on the Tuesday following Thanksgiving (in the U.S.) and the widely recognized shopping events Black Friday and Cyber Monday. #GivingTuesday kicks off the charitable season, when many focus on their holiday and end-of-year giving. Since its inaugural year in 2012, #GivingTuesday has become a movement that celebrates and supports giving and philanthropy with events throughout the year and a growing catalog of resources. To learn more about #givingTuesday, click here: https://www.givingtuesday.org/about.

This year I’m asking people to consider donating to the  Angel Baby Network for #givingTuesday. NO AMOUNT IS TOO SMALL! Over the last 11 months, we’ve provided support for families who have endured the devastating effects of infant and child loss. Over the course of only 5 meetings, we have directly helped 30 babies’ parents. People come to our gatherings sad and they leave with hope because of the different programming we provide and because of the sense of community that we cultivate.

Anyone who knows me knows that I hate asking for money–but I’ve also learned that pride gets in the way of progress–so–here is what we need money for and what we use money for:

-our most important need is $1,750 to file our official 501(c)3 designation paperwork. This will allow us to have tax exempt status for the IRS. This also means when people donate to us they will be able to write it off on their taxes.

-our goal as a group is to start providing “parent packs” that will consist of a grocery store gift card, a gas gift card and a monetary gift card as well as other resourceful information for parents immediately following the death of their child. Why? Because most bereaved parents have enough to think about-including their medical bills and their child’s medical bills-after their child has died. It is nice to not have to think about gas and groceries after your child has died. Trust me-I know. Over the last two months, we have become aware of at least five different families who could have used these types of resources but we didn’t have the finances to provide these items to them.

-at all of our meetings we provide food for our families. Why? Because let’s face it-food makes people come to events and people are happy when they eat

-at some of our meetings we participate in nation-wide or international activities of remembrance where we honor our children through different activities. *For example, in August, we participated in an international flag day and right now, we are participating in a national ornament exchange with other families who have lost children. Why? Because child loss can be isolating and our families need to know that we are not alone.

-at some of our meetings we have medical professionals such as counselors, psychologists, medical doctors and community workers come in and talk to our group. None of them have ever asked for anything but it would be nice to provide them with a small token of appreciation. Why? Because after you lose a child, you can feel like you are losing your mind and medical and community resources are helpful for a person’s emotional and psychological well-being.

-throughout the year, we would like to host at least one to two events where our families don’t have to worry about the price of admission. For example, every year in June we will be hosting our butterfly release. Why? Because it would be nice if the families didn’t have to worry about the costs associated with joining other families who are like them to help them honor their children.

If you’d like to donate to us, please go to this link: https://angelbabynetwork.org/donate/

Thanks for your time and consideration!

-Written by: Danielle Jones

 

How to Help the Faint at Heart During the Holidays

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Today is Thanksgiving and while many are sharing in traditions of family and friendly gatherings, there are so many others who don’t feel like being “thankful.” For many, today and this entire season brings feelings of uneasiness and sadness. For many, this season is extremely hard because they are experiencing the pain of having lost a loved one. For parents who have lost children, this can be especially true.

 

It’s important to remember bereaved families  at this time of year to let them know that their grief isn’t unusual and that they are supported as they walk through what may be a difficult season for them.

Here are a few ways for bereaved parents to “make it” through Thanksgiving: 
1.) Be honest with your family and friends about how you’re feeling. Explain that you may not feel like cooking or visiting with many family and friends on today.

2.) Be honest with yourself. It’s okay for you not to feel grateful or thankful. But at the same time–even as you grieve–you cannot deny the fact that you have a lot to be thankful for. Reflect on those things. By the shear fact that you can read this blog post, you’re doing good. Think about all of the people in the world who don’t have electronics to be connected with others and all of the people who can’t read. 17 percent of the world is illiterate!

3.) Make an actual list of things that you are grateful for. One of the practices that I started after our son passed away, was that of keeping a gratitude journal. The very first item I wrote in the journal was “I don’t feel like being grateful but here it goes.” I started out with writing three things down every day that I was grateful for. But then I realized that I couldn’t limit it to three items so my list grew to ten things that I was grateful for every day. And on some days I realized that I couldn’t limit it to ten. The more I focused on what I did have–even though our son had passed away, the more I realized that I was one blessed young lady. I had family and I had friends. I had an umbrella for when it rained outside. And I had shoes to protect my feet when I left my house. I had a coat to wear when it was cold and I had food to eat. I had a television to watch and I had a Bible to remind me of God’s promises. I was breathing on my own-without the help of any device. I had the activity of my limbs. I had tissue to wipe my tears and I had clothes to wear. Try doing this for one week and then review what you’ve written down. You won’t be disappointed.

4.) Relax and do something you enjoy today. Maybe watch one of your favorite movies or if you have a streaming service, see if you can find one of your favorite television shows to binge watch. And if you dare, I challenge you to find one of your favorite cartoons or shows that you watched when you were a child :-).

Here are a few ways for loved ones of bereaved parents to help those parents:
1.) Don’t put pressure on them to do a whole lot–especially not during the first or second year after their child has passed away. They have been through a very stressful life event. If they choose to play a huge role in your family or friendly gathering, then let them but offer to help them out along the way.

2.) Ask them how they are doing during the holidays and let them know they can be honest with you. BUT–if they choose to share their thoughts, don’t try to minimize their pain. What they are feeling is real. Offer them a listening ear and a hug. And, if they say they are doing okay, don’t try to make them feel sad about their situation. The truth is that they may actually be doing okay. Everyone grieves differently. For some bereaved parents, the holidays give them something to look forward to.

3.) Buy them a gratitude journal and in a loving way, challenge them to do what I mentioned in number 3 above. In fact, you can do this with them. You’ll find out that you have a lot to be grateful for too.

4.) If they don’t feel like being around a lot of people today, take them some food and let them know they’re still loved and are being thought about.

On today, one of the things I’m grateful for is the awesome community of families who I’ve been able to connect with over the last 16 months since our son passed away. We may be hurting inside but we are some of the strongest people I know. Happy Thanksgiving to you and yours!

By: Danielle Jones

A Closet Full of Clothes and Hearts Full of Love

As the days quickly approach her fist birthday, I find myself reflecting (more like reliving) this past year and wondering how I even made it. I still hear the nurse on the other end of the call, “We have the results of your Progenity test and they are completely normal. Do you want to know the gender?” Heck yes, I wanted to know the gender! I had been wondering since the day I found out I was pregnant if we were team pink or blue. With Father’s Day only days away I had the perfect plan to reveal to our family just what “it” was. As our two older children, 12 and 4, huddled around their father they made little chants rooting on which team they were on as he opened the little box with a simple onesie. It was hot PINK and read Happy Father’s Day. When I bought it, which was only hours after the phone call telling me our little girl was perfectly normal, it never occurred to me she would never actually wear that onesie. The following weeks I continued to fill the girls’ closet. Jillian, our oldest daughter, made room for her little sister, Emery Rose. Emery Rose had quite the wardrobe. I found outfits in animal prints, little sister attire and of course I didn’t forget the little ruffle booty pants. There were outfits I loved so much I knew I wanted her to wear them right away, but knowing she would grow out of them so quickly I bought them in newborn and a size bigger. I knew I needed practical outfits for daycare, dress up outfits for mommy/daughter days and of course “easy” button up outfits for middle of the night changing. This little girl had everything she needed and we knew we were set for at least a year of clothing. After all, I didn’t know how fast she would grow so I didn’t want to go overboard. Can you really go overboard with little girls in the house?

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Once we knew there was a chance Emery could come early I even started to pack a hospital bag. Of course, I couldn’t decide on what outfits to take so I had about 5 little outfits perfectly folded and placed in her baby bag. The night before I left for my first appointment at the Cincinnati Fetal Center I remember standing in the girls’ room looking at the bag. Should I take an outfit or not? I was only 28 weeks and I didn’t even consider the thought I wouldn’t return home until 5 weeks later. And I wouldn’t let it cross my mind that I would return home without her. What I couldn’t allow myself to think that day actually happened. Emery Rose was not going to be able to come home. The CPAM in her chest was just too big and caused too much damage. She hung on and fought as long as she could but we had to say goodbye. I stayed in the hospital 4 days after Emery was born and it was on one of those days the child life department at Cincinnati Children’s brought me some photos that had been taken. I looked at the photos and instantly thought, “Whose clothes are those?” Emery was perfectly and beautifully dressed in a white onesie outfit with gold hearts speckled thought out and a blue bow stitched on it. It was adorable but these were not her clothes. I had not picked this out for her and then it hit me. Why? Why had I not packed, at least, one outfit for her? Why did I not have my husband bring something, anything, on all those trips he made back and forth while I was almost 2 hours away fighting for me to stay pregnant just one more day.

When I finally returned home I avoided looking in the girls’ closet. Obviously, I had to enter the room as it was Jillian’s room too. It was a few weeks later and something came over me. I felt claustrophobic, suffocating in her belongings and wanted to clean out the girls’ room to give Jillian some space back. What no one ever prepares you for is the hurt and anguish that goes along with pulling out those same clothes you picked out, washed, folded and placed perfectly in a dresser knowing your child will never get to wear them. It was an ugly moment in our house. I sat sobbing uncontrollably in her room. Her clothes were scattered all around me and my husband was sitting behind me. There wasn’t anything he could do in that moment to console me, but he wasn’t leaving either. I spent time that day packing up just enough to give Jillian enough room and what I did pack up still remains in my closet. There are clothes of Emery’s that still hang in the girls’ closet, some even with tags on them. Jillian has taken it upon herself to get a couple outfits down for her Baby Alive. Jillian assured me her sister doesn’t mind. Jillian even asked a few months after her sister passed away if we had a box big enough to send to Jesus. She was concerned about what Emery was wearing in Heaven if all her clothes are still at home. I assured her she had a closet full of anything and everything she would ever need and that one day they could actually share that closet like they were supposed to.

-Written by: April, Emery’s mom