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I remember somebody asking that question when I told him that I still don’t have Dekar’s photos in an album.
As I was cleaning out my closet the other day I found Dekar’s medical records, some tiles that have his footprint, and a memory album that I never filled out. I was looking specifically for his printed/inked footprints and I was getting quite frantic when I looked everywhere for them and couldn’t find them. I looked one more time in “his” suitcase. It is the suitcase I took to the hospital and never totally unpacked. I already had gone through the suitcase twice and I wasn’t convinced I would find the prints, but I couldn’t think of any other place they would be. My mind kept taking me back to looking in the suitcase. So I pulled it out and took out each item one at a time. A folder with his medical records, notes from when I got his diagnosis, lots of educational medical and grief material, a quilt, and at the bottom, his baby blanket. The blanket that a hospital had donated and he took his final breaths in. I had wrapped up another baby album (also not filled in) in his precious blanket—I opened the book and they were there.
I remember reading that it really does not honor a person to have their things in a box. It is encouraged to make a shadow box, create a video collage, pick out just a few things that embrace who that person was, frame the pictures. Don’t just leave their stuff in a box, rarely to be opened or looked at.
Those are all great ideas. But….did you ever have a baby die?
After I found the footprints I settled in and I looked through the folder in the suitcase that had a splattering of my pregnancy journey. As I looked at the records and my notes I quickly replayed the history in my mind and heart. It was totally unexpected, totally overwhelming, and all consuming. It’s going on 8 years. It is around this time eight years ago that the doctor wanted an ultrasound done because I was measuring a bit small and it was best to have things checked out, just to be safe. From that, I needed a more extensive ultrasound done because something was not quite right with the heart of my baby. And from there, another ultrasound showing a wide range of defects and finally a Trisomy 18 and hypo-plastic left heart syndrome.
After he died I healed physically, packed away all his items and stuff from the hospital and went on with my life the best I could. It has been eight years. Those eight years have been jam packed full of “doing the best I can” life Four kids graduated from high school, two sons became Marines, one daughter got married and is building her own family. For the past eight years that has always been at least one teenager going through puberty. One son was diagnosed with Type 1 diabetes, my mother died, financial challenges, school challenges, and fill in the blanks with all the other things that fill a “doing the best I can” life.
No, I don’t have Dekar’s items nicely displayed. No, I don’t have his photos in an album. Yes I do have his blankets folded up in a suitcase instead of out where they could be hanging and enjoyed. Yes, it did take me a couple hours to find his inked footprints….because I don’t have them nicely displayed in an album or shadowbox.
But I had a baby die. And for the past eight years I have been doing the best I can.
“What’s so hard about putting photos in an album?” I don’t know. It just is.
Dear Dekar,
Today you will be in Heaven for six years. I watched the video that the photographers at Now I Lay Me Down To Sleep provided and I cried.
A couple of days ago it really struck me how I am a different person than before having you in my life. Time and experiences do change people, but being pregnant with you and holding you in my arms while you took your last breath changed me forever. It didn’t really strike me until I contemplated the current goings-on in my life.
About a month and a half ago your big brother, Jadon (who was only six when you were born!), was diagnosed with Type 1 diabetes. That means for whatever reason his pancreas decided to stop working and Dad and I need to give him insulin shots so that he can stay alive. (Ask God about the pancreas and how it works—He made it and can explain it better than I can!) Just like with you, this was nothing we did or didn’t do. Trisomy 18 just happens. Type 1 Diabetes just happens.
Jadon felt and looked awful when we took him to the doctor. The thing that still strikes me as odd is when the doctor told me that Jadon had diabetes I had no sense of fear.
When we knew something was wrong with your development there was a lot of waiting and wondering. First we thought you were just small in your development, then we saw something was wrong with your heart. Then at the next appointment the ultrasound tech started listing off problems with your brain, your feet, your hands, your heart, your kidneys….I don’t think she was supposed to do that….Then the doctor came in making it all real. There was some sort of chromosome abnormality and he wanted to do a test to determine what it was. End result–you could die in utero or if born alive, you would have a very short time on earth. Tears came and didn’t stop for days. The doctor was gracious to have one of the quicker tests done so that we didn’t have to wait for the total final results. And then days (which felt like years) later he called saying you have Trisomy 18 and hypo plastic left heart syndrome. The tears kept coming. The pjs didn’t get changed for days.
I remember how it tore me up when your oldest brother, Aaron, was diagnosed with hirschprungs soon after he was born. He had to stay in the hospital, I couldn’t be with him overnight, he was in pain—it was just all around awful. Then he had to have a surgery to have a colostomy. I didn’t even know what a colostomy was and all of a sudden I had to do all the care for him having one! A year later he had a surgery that had a long healing process.
Did it ever enter my mind that he would then be diagnosed with Hepatoblastoma before he turned two years old? No! I breastfed, I fed him healthy foods, I stayed home with him and Hali—he wasn’t supposed to get cancer. But he did. He also survived and is thriving.
Not only did he survive, but we all did.
And here we are now. Here I am now. I am not the same—there is no way I could be.
The common theme that runs in my mind is “death”. Aaron could have died a few times over. You did die. If things had gone wrong with Jadon, he could have died. One thing I learned when Aaron had cancer: We are all terminal. There are no promises how long we get to live. Because I knew your life would be short on earth I purposed it in my heart and mind to make your life worth living—and I didn’t even know if you would be born alive. You were loved, kissed and smothered with all kinds of affection. The hardest part for me to wrap my brain around was holding my dead child—how do I do that? I still don’t know how I managed, but I remember looking at you and thinking how you looked like royalty. Such peace and tranquility on your face. That memory is so beautiful, when I had feared it would be one of the ugliest.
Now, in the midst of all of this, instead of dwelling on the death I think of the enriched life I can now experience.
The above was and still is my mantra. I never knew how strong I was until being strong was the ONLY choice I had.
Philippians 4:13 says “I can do all things through Christ who strengthens me.” And He did strengthen me—the reality is, though, I still had and have to make the choice to be strengthened by Him AND to actually DO the ALL THINGS that He is calling me to do. I didn’t know I had it in me, Dekar. I knew in my heart what I felt I had to do and wanted to do—but I didn’t know how to do it. And I did it. But honestly, it amazed me that things fell in place. God gave me a gift when He gave me you. Not just the gift of YOU, Dekar, but He has allowed me to see strength in myself that I didn’t know I had. Even when things didn’t work out as I had hoped, I had the strength and grace to be able to look beyond the disappointment and pain and have compassion and forgiveness.
And now we come back to Jadon’s diagnosis. “If I can go through a child with cancer and hold Dekar as he takes his last breath, I can do this.” That is why I didn’t experience fear. I have no doubt in my mind that I can grow with Jadon and help him to learn to manage his diabetes. I know that I have the strength for this next race because I have been trained by The Best. I know that is the ONLY choice I have because Jadon’s life depends on it. I know there will be hard times and scary times. But I can do this. I already have.
They say to never judge a person because you don’t know what battle they are fighting—God is the only One who has truly known the internal battles I have fought all my life. God has lifted my face to His through some of the worst experiences a mother could ever imagine. God has used these hard experiences in my life for my good and for His glory.
So today, Dekar, although I cry, I also rejoice. I rejoice in the goodness of what the Lord has given me through you. I couldn’t save your life, but in a way, I believe you helped to save mine.
Happy Heavenly Birthday, Dekar. We are having Turtle pie, French silk pie, and pecan pie with whipped cream –with sprinkles–in your memory and honor. Thank you for all you have given me. I love you and I miss you.
And whoever receives and accepts and welcomes one little child like this for My sake and in My name receives and accepts and welcomes Me. Matthew 18:5 (Amplified Bible)
I am not much of a jewelry person, so when I do wear something it is usually pretty special to me.
This particular necklace can also hold a small amount of personal remains of a loved one.
I have seen these before and honestly wasn’t sure how I felt about it. But now that I have one I am very glad I own it. It is my preferred piece of jewelry–It is stylish, well made, and nobody can tell what it holds inside. Basically, it simply looks like a very pretty piece of jewelry. Nobody knows it holds a small part of my son’s remains unless I tell them…and I don’t offer that information.
The opening on the top of the necklace is closed with a little screw. This shut tight since I was careful to not overfill. Originally I did not use the adhesive product that was sent with the necklace. It seemed to me the screw was secure so I did not think it needed the extra adhesive. However, after wearing the necklace almost daily for a few weeks I found myself checking the necklace regularly, making sure the pendant was still in place! I decided to buy some strong adhesive and securing the screw permanently. Once I secured the screw with some adhesive I feel more peaceful, knowing the pendant cannot accidentally come loose.
The chain itself is something I need to have fixed. The clasp is very difficult to attach to the other end as the opening is quite small. I have contacted the company and was assured this can be fixed/replaced. I just haven’t done it yet due to the craziness of life lately.
A version of this poem was shared in a Now I Lay Me Down To Sleep parent newsletter.
Although this is not my writing, I am posting this and dedicating it to the mothers who have lost a child and have no living child at home to hug and hold on this Mother’s Day.
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CAN YOU BE A MOTHER WHEN YOUR CHILD IS NOT WITH YOU?
I thought of you and closed my eyes
And prayed to God today
I asked “What makes a mother?”
And I know I heard him say
A mother has a baby
That we know is true
But God can you be a mother when your baby is not with you?
Yes, you can. He replied, with confidence in his voice
I give many women babies. When they leave is not their choice
Some I send for a lifetime
And others for the day
And some I send to feel your womb
But there’s no need to stay
I just don’t understand this God
I want my baby to be here
He took a deep breath and cleared his throat
And then I saw the tear
I wish I could show you What your child is doing today
If you could see your child’s smile
With all the other children and say
We go to earth to learn our lessons
Of love and life and fear
My mummy loved me oh so much
I got to come straight here
I feel so lucky to have mum
Who had so much love for me
I learned my lessons very quickly
My mummy set me free
I miss my mummy oh so much
But I visit her everyday
When she goes to sleep
On her pillow’s where I lay
I stroke her hair and kiss her cheek
And whisper in her ear
“Mummy don’t be sad today I’m your baby and I’m here”
So you see my dear sweet ones
Your children are okay
Your babies are born here, in my home
And this is where they’ll stay
They’ll wait for you with Me
Until your lessons through
And on the day you come home
They’ll be at the gates for you
So now you see what makes a mother
It’s the feeling in your heart
It’s the love you had so much of
Right from the very start
~author unknown~
The month of Dekar’s birthday has been funky for me the last two years. If you have lost somebody special in your life you may understand. For me this means I may be more somber and melancholy. Other times I’ll want to keep busy and do something productive to pass the time. Some days I’ll notice I’m simply out of sorts–in a funk!
As time has gone on I’ve recognized this as my way of working through the grief and acceptance of losing Dekar. These things don’t catch me off guard or make me question myself as they used to. I just take them as they come. Grief is a weird thing and definitely different for everybody.
Since this is Dekar’s birthday month I am going to post a new picture or memory of Dekar when I feel the need to help me work through the “funk”.
Sometimes I wonder, Dekar….Does anybody else think of you every single day, the way I think of you every single day?
Sometimes I remember you with a smile, sometimes with a tear. Sometimes I just look at your picture and I wonder….
What is it like to be in heaven? Do you see me? Do you see your brothers and sisters and your dad? Do you have ice cream with us on “Dekar Day”? I like to think so, but I don’t know. It’s a thing we do on Earth… So, I just sit and wonder…I like to think that you bring out ice cream and share it with all the other babies who left their moms and dads too soon. I say “too soon” because of me–not because of you. I feel the void, the absence of your presence–the awareness of the life that was so short, yet impacted me so greatly.
I really don’t expect anybody else to remember the way I do. I am your mother, and from the moment I got the news of your diagnosis I grieved the loss of you, my son. Is it possible to have a life selfishly centered around another person? Because if it is, I’m guilty–my moments, seconds, minutes, hours, days and weeks became “all about you”. I wanted every moment to count.
I was the one planning for your arrival–knowing full well it was to say “good-bye”. You were with me–you were the REASON for every moment of my planning, my grieving, and my tears. You were the reason for the ice-cream that was eaten all too often….When I saw an outfit hanging at Target, I knew it was meant for you. Even if you would only wear it once, I knew it was still meant for you.
I had the privilege of the all-encompassing “connection”….feeling you kick and move. Even when your brothers and sisters felt you move from the outside, it still wasn’t the deep, full movements that I felt–the squirm that radiated through my whole being. When I would feel the jabs I would wonder, “Is this the last time I’ll feel him move?”….. I’m thankful the movements continued. Did you know, Dekar, that I’m not a big ice-cream freak, but when I discovered that YOU seemed to enjoy it, I ate it as often as I could? Did you know that you helped make me into a quite “full-figured” woman? 😉 It’s okay with me–every extra ounce of weight I gained because of eating too much ice-cream was worth it.
I’m thankful that you shared a day with us. But on days like today I wish I could see you, feel you, and kiss you. I wish you were here to eat ice cream WITH us, instead of us having ice-cream in memory of you…
I know God’s timing is perfect and I know you are in Heaven–in perfect peace and surrounded by only love. I wouldn’t want to take that from you…but I do wonder what it is like and I wish I could see you there. I think I might just have a Brownie Earthquake and think about it–Brownie Earthquakes made you kick and that made me smile….and tonight I need to remember that feeling. So after having ice cream with the family, I will go off alone and indulge and wonder. It’s what I need to do today.
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Later….
I don’t usually take pictures of ice-cream, but it was worthy of being remembered–as silly as that may sound, and even I think it is silly to take a picture of ice-cream. I want to remember the ice-cream mostly because I remembered you so deeply that day. Dekar, I had watched your videos and looked at your pictures as much as time allowed on what would have been your 22nd month on earth…but it wasn’t your 22nd month on earth. It was your 22nd month in heaven. As much as I love the fact that you are in heaven and that I will see you someday, I equally hated that you are in heaven instead of with me—I wanted to be with you NOW. The ever shifting emotions connected with grief continue to bewilder me. How can I go from smiling at your picture to breaking down in tears that don’t stop….how can I appreciate the time I spent with you and then be sad that I didn’t do “more” with the time that I did have? How can I hate that I went through this yet would never give up the experience for anything in the world?
My relationships have changed, my views have changed. Carrying you and losing you has forever transformed me to my very core. I am waiting for the time when I can be at total peace with this “new me”. Some days I think I am there, but then I learn of a new loss that I didn’t realize I suffered…a changed or lost relationship, a lost dream. This was one of those days that I evaluated and reevaluated. I looked at your face and little body and wondered what else will my eyes be opened to and my heart be transformed by? It’s like a constant waxing and waning. Some, I think, have the notion that the death of a baby is something that will be forgotten and only remembered on occasion. They have no way of understanding that it is something that is right there all the time.
When I ate the Brownie Earthquake that evening, I ended the day with a smile. I remembered your life. I thought of your little sounds and the smile you gave us right before you passed on. You only knew love and you only gave love. And your life keeps on giving–I will never be the same.
Today is December 27th–Dekar Day! Today Dekar would be eighteen months.
Fortunately ice cream was on sale so I picked up four different Edy’s flavors: Berry Granola Crunch, Root Beer Float, Chocolate Peanut Butter Cup, and Mango.
A special thanks to the following for letting me know they are remembering Dekar with me: Christine, Autumn and Jenny’s family, Sherri, and Martie. Dekar Day calories don’t count. 🙂
Cortney and I went shopping on black Friday. After the major shopping was done I wanted to relax a bit and look for a memorial ornament for Dekar. I had an idea of what I might like, but nothing was set in stone.
Cortney looked with me, and it was so perfect when he showed me the ice cream cone–it even has sprinkles!
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