9 Years

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January 29th 2007 was the day that my life changed for the better. 9 short days later my life changed again in a way that I thought it couldn't, even expecting what would happen. My daughter, Deborah Josephine was born on January 29th, 2007, with the chromosomal abnormality Trisomy 18. She died 9 days later on February 7th, 2007. My pregnancy was unexpected. I was only 23 years old. I was not married and I was not in a super-serious and monogamous relationship. I found out I was pregnant in the second trimester; I was terrified. However, even if only subconsciously I knew that I would have my baby, and love her for the rest of my life. During my second ultrasound the tech was taking a lot of pictures, and taking a long time with the procedure. I didn't know it at the time of course, I was just enjoying seeing her on the screen. The results were that she had a hole in her heart, a non functioning kidney and was missing an umbilical vessel. Amniocentesis confirmed it was genetic; a third copy of the 18th chromosome. I would be lucky for Josie to be born alive, even luckier to have her survive a few hours. I was devastated but steeled myself for the inevidable, hoping and praying to see her face and hear her cry. I went from hoping my daughter would take on the world, be fearless, be amazing in her own right, to just hoping I could see her take a breath. I did not look forward to her birth because it led to so many unknowns; but when she was safe in my womb I knew she was breathing and eating through me. 

When she was born, she wasn't crying but she was trying to breath. We had agreed she would be DNR; so that she wouldn't suffer. They laid her on my chest and I watched her chest and nose, I swear without breathing myself until I saw her tiny chest move, and looked at the nurse closest and said "Please help her!" They put an oxygen mask on her and her chest began going up and down and her limbs began moving. She even managed a kitten like cry and opened her eyes to look at me, and wrapped her hand around my finger. I will never forget that moment. I carry it in my heart to feel when the days are just too much.

We took her home under the direction of Starshine Hospice- hospice care for terminal children. She lived with an oxygen tank and a feeding tube for 9 beautiful days. It was snowing the night she was born and it was snowing the morning she died. I was all alone with her. Her dad had gone back to work and due to the weather did not make it back when he was suppose to. Just before she stopped breathing I carried her to the window so she could see the beautiful snow, sunshine causing it to glitter and reflect from all surfaces. It was a truly beautiful morning; until I realized Josie couldn't breath anymore, even with her oxygen. I held her in her favorite spot, the rocking chair and watched helplessly as she slipped away from me. I wept silently, praying that she wasn't scared or in  pain, and knew how much she was loved. 

This year,(2016) she would have been 9. In the third grade. Curly hair ? Blonde hair? Tall? Maybe playing indoor soccer or maybe practicing for a dance recital like her younger sister is. All of these things about Josie are left unanswered, unfairly so. 

What I can take away from this, 9 years later, is that Josie's birth and death changed me as a person. I'm not exactly sure if it is for better or worse, but it is a deep change impossible to explain even to the people closest to me that saw me through it. I know now, that I can weather any storm that passes over me. I can't imagine anything harder than watching your child die, or having to bury  them amidst other grieving family members, comforting others in their pain and saying you're okay when you are most definitely anything but okay. 

I should also acknowledge that  before Josie I did not want children. I was not all that fond of  children as a group. I would watch large groups of Mommies traveling in herds of strollers at the mall, screaming toddlers and wailing infants in tow, and think to myself "No Thank you!!!. Not for me!" I also did not understand what being overprotective meant until I had my second daughter almost exactly two years later. She was born full term, healthy and screaming. I spent the entire first year of her life petrified that she had an underlying condition that could strike at any moment, taking her away just like it had taken Josie away. Her first trip to urgent care for a snotty nose at 3 months old had me convinced that this was the beginning of the end; this is it, this is when they tell me she won't make it. By the time she was 2, I allowed myself to be truly attached to her. To allow myself to live day to day knowing she would always be there, having hopes and dreams for the person she would become and the feats she could accomplish. 

Losing Josie forever changed me, down to my very soul. After these 9 years I am capable of saying I "moved on" so to speak, in that I have been able to put my experience to good use, by participating in the March for Babies in Josie's memory, by listening and responding to others on Share Your Story; and most importantly by having more patience and tolerance for all parents and children.


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  • Thank you so much for sharing your story, I related to it so much. It has been 6 years since I lost my daughter Arianna and like you, it has changed who I am. I'm almost at the point where I don't even remember who I was before she died. I also have the same fears and anxieties about my living children as you do. I fear they will be taken from me with each and every sniffle. I guess its the fact that we have experienced every parents worst nightmare and know what it means to lose them.

    I am glad you are using your experiences and love for Josie to reach out to other parents in need. For me this is just one of the ways I can give Arianna's short life a purpose. Some days I think it helps me more than others. Sending you hugs and remembering your sweet Josie with you.

    Jami

  • Thank you for your kind words on my page. :) I just read your story. Bless you

  • Amazing story. It does forever change you, so true. I think the kindness and caring it gives you towards all parents is exactly the biggest difference I have noticed in myself as well. Compassion in a new form. March of Dimes has helped the healing process for me too but giving the loss a sense of purpose, to help and support others. Sharing your story brings strength to you as well as others. Thank you for sharing and supporting!

  • Knowing that you are carrying a child that may or may not be normal (so to speak) is one of the hardest thing to do and I think once we make the choice to go through this process we realize our strength and a type of love that we never felt before.  It's great when we can get to a place where we can say that we are ok and able to move on and live our lives knowing that our angels are looking down smiling.  It's sad that we all had to go through this but I'm happy that we can share our stories knowing we're not alone.

  • Thank you for reading the story of my angel baby  and for your beautiful words . I just read your story . I always tell people that my angel baby has made me a better  loving person .

  • Wow your are a incredibly strong woman!!! God bless you! And I pray I am giving the strength you have... May your heart continue to heal and you continue to be bless with lots of love, happiness and strength! Xoxox

  • Thank you Brandi for your warm love and hugs. I sincerely appreciate the support. It has been really tough lately because I am constantly watching the monitors to make sure she's still breathing. The NICU has been stressful but I'm providing strength for my baby girl. I am sorry on the loss of your Josie. Having your little one pass away in your arms must leave a terrifying imprint. It brings joy to hear you have a healthy baby girl after two years. May she bring you joy and comfort.

    Love and hugs,

    Jessica

  • Your story made me cry. I am so very sorry you lost Josie, but I am glad she was a part of your life, even briefly. She was a true blessing to you. And, I'm happy you now have another daughter in your life to receive your love. You sound like a strong and great mother.