One evening I had my hand placed on my boy’s chest when an occupational therapist came into his hospital room. She said to me, “Do you want to know how to love your child?” Excited, I replied, “Yes!” My only concern for my son was that he didn’t suffer and that he felt loved while he was here on earth. The therapist led my hand to his right foot. She then cupped his foot gently and told me that he was always pricked and prodded in his right foot. It was the hurt place. So I replaced her hand and I gently cupped his right foot. She explained to me that my boy needed his foot caressed to know that every touch isn’t to cause pain. Taking a lesson from that event made me think about how all of us treat each other. How many times do we touch each other’s hurt places, which end up causing pain? Many relationships could be mended if we touched each other’s hurt places in a soft way in an effort to give love. A lot of times if your hurt place is touched incorrectly you tend to  to touch and hurt other people’s hurt places-even when you don’t do it intentionally. My son taught me how to be gentle when it comes to people’s hurt places and how to show them love. 

-Written by: Chris Jones

“For better or worse, in sickness and in health, for richer or poorer, until death do us part.” 

There are days when I wonder why on earth I ever stood up in front of God and 300 witnesses that included our family and friends and said those words to my husband. Talk about a SMH moment….sheesh! And on top of all of those promises–I had the nerve to promise my husband that I would even follow him no matter what….even if he were going in the wrong direction. *Insert my raised eye brow and twisted lips here.* I mean, don’t get me wrong–my husband is a sweetheart and he’s worth being committed to but I don’t think I had any idea what I was promising on May 28, 2011. Some days I want to put all of those words back into my mouth, say, “Sorry–my bad” for ever saying them and return back to my life pre-marriage. 

But it doesn’t work that way.

My husband and I have been married for five years and three months. And in that time, we have lived through the first three vows that we agreed to and we aren’t rushing towards the until death do us part clause. 

In the last three years we have dealt with job loss, an MS diagnosis, a surgery, car accidents, having more than enough money in the bank-to having no money in the bank (like none), a fire occurring at the house we were supposed to move into, which resulted in a very traumatic move, our son dying and a slew of other “adventures.” (“Adventures” and “adventurous” are the words I choose to use instead of some other words that I could use to describe our tough times.)

Child loss is the type of adventure that can truly shake a marriage and sadly, in some cases, completely rip it apart. There are so many different emotions that the both of you are dealing with individually and then there are emotions that you are dealing with collectively. In the midst of our loss here are some things that Chris and I have done to help us stay married. They may not work for everyone but they’ve worked for us. I hope they encourage you as you go through the journey of child loss.

1.) Make the decision to stay together. In our son’s final minutes of life, with both of us crying very hard, my husband turned to me and said “No matter what-this will not tear us apart.” I, through tears, shook my head yes and agreed. We knew that our son’s death was the hardest thing we’d ever been through–and hopefully it would be the hardest thing we’d ever go through. But we made a decision on that day in room B7 of the NICU that we would not divorce because of that hardship. 

2.) Go to counseling. There is nothing wrong with going to counseling. In fact, in my opinion-everyone needs counseling. Keeping everything bottled up is good for no one. And not dealing with a situation is still a way of dealing with the situation. Choosing to not cope with a situation is a form of coping with a situation. And neither of those options are effective. Counselors can provide a different perspective. Plus, they get paid to lend a listening ear–so they tend to be really good listeners. And they can refer you to outside resources that can help you. 

3.) Be patient with one another. All of us have something about us that drives our spouse crazy. Marriage by itself and dealing with those issues is hard. But in the midst of tragedy, those issues seem to be magnified even more. Tensions tend run high and patience runs low. Chris and I committed to being patient with each other. Sometimes we get it right and a lot of times we get it wrong. But–at least we try. Patience with each other will go a long way as you walk through the loss of your child together.

4.) Remember that you two are the only two who will forever be completely and totally tied to your child. Your child may have passed away but the two of you are still here. When you see your spouse and when you touch your spouse, view it as seeing and touching a part of your child. This perspective may cause you to love your spouse a little bit more because if you love your child, chances are you love the other person who helped you create the child. 

5.) Understand that just because your spouse grieves differently that you, it doesn’t mean that they aren’t grieving at all. There is no right or wrong way to grieve. Each person does what they need to do to comfort themselves and to let their feelings out. I’m more social than Chris and for me, spending time with friends and expressing myself on social media have been a part of my grieving process. Chris is more introspective and for him, talking to me about how life would be different if our son were here has helped him. 

6.) Be honest with each other. Tell each other when you’re having a tough time. Tell each other when your days are hard. Tell each other when you need to be left alone. Tell each other when you feel like screaming. Tell each other when you feel like you’re losing hope. 

7.) Talk about your child to each other. You may get sad when doing it-but you may also find that it helps you.

One of the core pieces of marriage is the commitment to unity. You are on this “life journey” together.  There will be high highs and low lows. And losing a child is one of the lowest of lows. But if you hold on to one another and promise to stick through every experience together, you will make it. 

Written by: Danielle Jones

 

 

 

 

One year ago today, my husband and I made the hardest decision of our lives and we turned off the machines that were keeping our son alive.  

I still remember the people who were in the room as my husband and I took turns holding our precious baby boy as he lived his last few moments. It was the two of us, a child life specialist, a nurse—who we adored, a photographer and a doctor who had taken a special interest in our journey.

In the 24 hours leading up to that moment, I repeatedly sang the chorus of a song that I’d only heard once from a few weeks prior….”I’m at peace, even though my heart is breaking. I’m at peace, I never thought I would be shaken….” My husband told him that as he was on his journey to Heaven to make sure that he connected with some good women like his grandma and my great-grandma because they would take good care of him. The last thing that our son heard was me telling him that we loved him as I gently rocked him and kissed him and he heard his daddy’s voice on a homemade CD playing on a CD player telling him that he was his Daddy’s boy, his mother’s baby and the righteousness of God.

The doctor took the tube out of him exactly at 7 pm and he took his last breath, in my arms, at 7:23.

After he passed away, I told Chris that I wanted to pray. Those who were in the room with us asked if they could join in. We formed a circle and I thanked God that He chose us to be Christopher Louis Jones, Junior’s parents. I prayed that God would allow our son’s life to serve a great purpose, that God would allow us to feel His love and that He would strengthen us in the days ahead. I prayed that our nurses, doctors and entire care team would be blessed and that as a result of watching our faith journey that their lives would be positively changed.

A year later, the hurt is still there. I don’t expect it to leave. It may not be as prevalent on some days like it is on others—but it’s there. And that OK, because as a human, God created us with a soul that includes emotions. And part of being human is feeling those emotions-even the ones that don’t always feel good.

A year later, we still acknowledge our son by his name and we’re very honest about how much we miss him and how much we love him. Chris talks about how much fun he would be having playing with and getting in trouble with our son due to their mischief. And I talk about how I still can feel his hair and forehead up against my cheek as I nuzzled him during the three days I got to hold him.

A year later, as I reflect over all of the great things that have happened since our son’s death I stand amazed at how God has been able to move through our circumstance to bless so many others—and to show us how strong He and we are. I’m looking forward to seeing how God will continue to move through our lives as we agree to being conduits of change when it comes to what grief and grieving look like for parents who have endured child loss.

A year later, I’m still a mom, my husband is still a dad and our little guy will forever be our son.

Written by: Danielle Jones

Dear Little Boy,

I can’t believe that today one year ago, you came into this world. Albeit, you were blue because you weren’t breathing and looked like a little smurf-you were our little smurf and we loved you just the way you were :-). And, I’m grateful that all of the doctors and nurses worked as hard as they did so that you could start breathing.

It has certainly been a year of many ups and many downs, but through it all, your daddy and I have thought about you every single day and we have talked about you almost every other day. We think about what you’d be doing, what you’d look like and how you’d probably be causing all types of ruccous with your daddy! But even in those thoughts, we’ve managed to be honest with ourselves and honest about our situation and we know that Heaven is truly the best place for you to be.

So, even on this day, although you weren’t here to physically be with us, we still acknowledged that it was your special day and that while most people take 100 years before they figure out their purpose, we couldn’t be more proud that it only took you 10 days.

You have truly lived up to all of your names, little Christopher (Bearer of Christ) Louis (King) Jones (Favored One), Jr. We are looking forward to seeing how God uses your precious life in year two because we know that it is going to be even greater than year one. For we know that God knew you before He formed you in my womb and that even before you were born He definitely set you apart for His divine purpose.

We love you to the moon and back, little boy….and don’t you ever forget it.

Love Forever and Always,
Mommy and Daddy

For the last 11 months I have dreaded July. July is the month that our son was born in and July is the month that our son died in. And for the last 11 months I have anxiously (and not in a good way) awaited July. And now, July is here. For the last 11 months, I have wondered what July be like. Would I cry every day? Would I be able to make it? Would I be in a bad mood? I’m happy to report that so far none of those have happened and we’re already three days into the month. That means we’ve got 28 more to go!  But-I can’t and I’m not going to promise that any of the aforementioned won’t happen before July is over.

If there’s anything that I’ve learned about grief and especially grieving an infant, it’s that sometimes the act of grieving-in whatever form that may show up-can come at any moment…unexpected….and unannounced. And while a lot of times, people may be anxious about anniversaries that have to deal with their child’s life or death, sometimes it’s not the “big” anniversary dates that throw a person into a downward spiral of grief–it’s those days and times when they least expect it.

My original due date for Junior to be born was August 16 but by the time August 16 had arrived he had already made his precious entrance into and exit out of the world. And so the day came and went without a lot of emotion other than me personally acknowledging that it was the day he was supposed to be born. But last month when I reflected on the fact that it had been a year since our friends and family threw our baby shower, I cried myself to sleep and cried some more for the first part of the next day. Go figure.

I say all of this to say that anniversary dates aren’t going to stop coming. And just as one of my good friends and fellow angel moms has shared with me-“time stops for no one.” Unfortunately, it doesn’t even stop for us angel parents who have to live through anniversaries and birthdays without our children. But, that also means that as time goes on and as we go on with it, there will be more opportunities for us to keep our children’s memories alive. Birthday and anniversary dates are going to show up as long as there are 365 (and sometimes 366) days every year. But maybe instead of being anxious about those days, months or seasons, we can start looking at them through the lenses of a different perspective and with a statement of courage for ourselves. Maybe, just maybe the next time one of those anniversary dates show up, we can turn it into an anniversary of sorts for ourselves, where we can say with a boldness in our hearts that yep, we’ve made it to–and through–another day. And the thought of turning what would normally be a recurring sad day of reflection into one that’s marked with resilience and strength makes me a lot less anxious about anniversaries.

-Written by Danielle Jones

Father’s Day is here and though it may be hard,

Know your child is resting safely in Jesus’ arms.

Reflect on your memories, be they many or be they few.

Know your child is saying, “Daddy, I love you.”

A father’s love knows no bounds, it goes deeper than the depths of the sea.

It’ll cross over any hurdles to show a child that it believes.

Though your child may have passed on-their spirit is still here,

Always remember that through you, your child’s memory is alive and he or she will always be near.

So when dads are being celebrated, you may shed a few tears and your heart may ache,

But keep in mind that today is still your day.

Because no matter if your child is here with you or if you’re reflecting on the precious moments you had,  

The fact will always remain-that you are still a dad.

-Danielle Nicole Jones

To all of the bereaved dads:

Even though you’re a bereaved father and your child is not here, I would still encourage you to live life as if your child were still here. Still do the things that you would do to make them proud of you and still tell them that you love them. They may be gone—but you are still their father and they are still your child. Happy Father’s Day.
Junior–you will always be my boy.

Written by: Chris Jones

Photo taken from mirandasnyder.thoughts.com via Google Images

My day on this past Monday started out great. I had lunch with a good friend and a new friend who said he wanted to fund raise for the Angel Baby Network. On Monday night, I went to my bi-weekly modeling and acting class—which I truly enjoy attending. And then I came home to a good, home cooked meal that my husband made for us. By all means—Monday was a good day. Until later that night when my husband and I prayed—as we do every night. “And Lord, thank you for blessing us to be parents of an awesome little boy.” I spoke and the tears started to flow.

The Saturday before that Monday, I’d acknowledged the fact that one year prior, all of our family and friends had gathered with us to celebrate our pending baby’s arrival at our baby shower. But I on that Saturday I didn’t dwell on that fact. And on the Sunday leading up to that Monday, my husband and I were babysitting our precious nieces and as I fed them breakfast, helped them brush their teeth and dressed them for church, the thought crossed my mind and my heart, “Why is it that I can take such good care of someone else’s children but I don’t get a chance to take care of my own…” but I didn’t stay stuck in the thought.

But on Monday, when I thanked God for blessing us with our little boy, I cried. And I cried. And I couldn’t stop crying. Monday wasn’t our son’s birthday. It wasn’t his death anniversary date. It was Monday—and yet, I was emotional and sad….even after I’d had a good day. I’ve learned along this journey that sometimes tears come when you expect them to and a lot of times they come when you don’t expect them. And whenever they come, expected or not, it’s OK. On Monday night my husband lie next to me in bed and consoled me the best he could. And on Tuesday, when I got up, I was still sad and the tears were still falling down my face….over Monday. And I went into work, and a few co-workers asked me how I was doing and I was honest with them and told them, “Not good.” And they gave me hugs and pats on the back and let me be “not good over Monday.”

I share this to say-that sometimes grief can catch you off guard at the most unexpected times. And in those times, feel what you need to feel and do what you need to do. Be honest with those around you and give yourself and them permission to let you grieve. You may not always know when those times are going to be but when they do happen—it’s OK to not be OK-even if it’s just over it being Monday.

-Danielle Jones

 

Mother’s Day is here. The day when the world celebrates moms. And for many women whose children have passed away, myself included–Mother’s Day brings about challenges. We are mothers but our children live in Heaven while we live on Earth. In relationship terms: it’s complicated. And because of that, some people may think that we’re no longer moms. And some of those people may even be our own selves. But that couldn’t be farther from the truth. As long as you still have breath in your body and you are mothering your child’s spirit and keeping his or her memories alive, thinking about them, remembering them and loving them-you are still a mom. And the best part is–no one and nothing can ever take that away from you. So yes, your child may have passed away-but they were and are because of you and because of them, you were and are still are a mom. I know it hurts, it sucks, it’s sad and it isn’t fair….but at the end of the day, you are still a mom. 

I pray that every bereaved mom has a peaceful Mother’s Day. That she would do whatever she needs to do to get through the day–cry, scream, shout, spend it with relatives and friends, go to church, relax, sleep or even just quietly reflect on what was or what could’ve been. When others are acknowledging moms on Mother’s Day, they may not know what to say to you. And honestly, them saying Happy Mother’s Day to you may feel awkward to them and awkward to you. And then again, them not saying it is going to probably feel awkward to them and awkward to you too. And unfortunately-there’s no easy way to fix that. But it’s okay to be honest with yourself and honest with them about how you’re feeling. But know that no matter what–if they say it or if they don’t, if you feel it or if you don’t, if you’re sad/angry/mad/hurt or if you’re not and even if you experienced pregnancy/infant or child loss-the fact still remains-you are a mom. A beautiful, strong mom. Happy Mother’s Day. 

By: Danielle Jones

Pareto theorized the “5 why” philosophy, which states for any cause you come across if you ask and answer “why” 5 times you’ll get to the root cause of the problem. “Why” is a question that plagued my wife from the 20 week scan to our child’s delivery. At the 20 week scan we were informed that our child had multiple abnormalities. He was tested for three stages of chromosomal disorders but his tests always came back normal. Perplexed, the doctors were wondering why they were seeing these abnormalities. We continually asked how severe the abnormalities were. The answer was the same across every doctor we faced. “I don’t know, I won’t know until he is born,” they told us. We were in a state of confusion. Our lifestyle is/was not one that is conducive for breeding issues. The question still lingered, “why.”

 

 

Fast forward through time and our son was born to my surprise with the issues the doctors mentioned and many more. My wife and I decided to go through genetic testing hoping we would find an answer. Our son was a case that none of the doctors had ever seen anything like before. After the genetic testing we found our answer. It was a defective gene passed on to our son through my wife. We didn’t know exactly how it happened but we knew that her mother had gone through a similar situation with a son 30 years prior to our son being born.

In our city, we have a growing problem with infant mortality. The question is “why.” I am aware that genetic testing 30 years ago wasn’t as far along as it is now. But hypothetically speaking, let’s say it was. If my wife’s mother had known the reason behind her son dying and if it were a genetic defect she probably would have shared that information with my wife. If that had happened, we may have found other means to get pregnant. That’s one life saved and a decrease in infant mortality. Now multiply that across all the mothers and fathers who could have used other means to get pregnant. Now the infant mortality rate has drastically decreased. Genetic testing today is more advanced than it was years ago and it is more available. So don’t be scared of genetic testing and do not be ashamed to speak with your children about it.

By: Christopher Jones, Sr.