by Shenia Coleman Kirkland (www.1peachymama.com)
CLICK HERE TO SEE THE ENTIRE SERIES
As I wrote in yesterday’s post, one of the NICU doctors came to my husband and I somberly while our daughter slept in her NICU bassinet. He took us into a small room and suggested that we sit down. Then, he told us that one of our newborn daughter’s tests revealed that she had a very rare chromosomal disorder called Trisomy 13, which (as he put it) is “not conducive to life.” I will never forget those words”.....
Trisomy 13 is a genetic disorder in which a person has three copies of genetic material from chromosome 13, instead of the usual two copies. The occurrence of a trisomy is a spontaneous event that happens at the moment of conception and cannot be prevented. The extra genetic material interferes with development. Usually, a woman carrying a fetus with this disorder has a miscarriage around the 10th week. It is incredibly rare for a child with this condition to be born alive. (The reason that it took so long for the doctors to diagnose her is that she didn’t present with many of the physical symptoms associated with the condition.)
The doctor told us, in no uncertain terms, that no child had ever survived with this disorder. He said that the vast majority of women who carry a baby with this condition experience a miscarriage early in their pregnancy. Then, he said simply “she will die.” My response was simple- “I don’t understand”. I didn’t understand how we could put a man on the moon, but no one on the planet could save my two and a half week old baby who was sleeping 20 feet away in her hospital bassinet. Our research confirmed the prognosis. And, we were shaken to the core with pain so intense and raw. I literally wanted to die.
We were told that we our daughter could stay in the hospital until she died. Or, we could take her home. My husband and I decided to bring our daughter home so that she could see her room and live in the home that we made for her. We wanted her to know more than just the inside of a hospital during her short life. We decided not to tell anyone about her prognosis (other than our parents and siblings) because we didn’t want anyone to give her the “look of death” or treat her like she was in some way abnormal.
We decided that we had to look beyond our grief and the sheer terror of bringing home a baby whom we knew would soon die. In an effort to make memories, we went on a family road trip and took a family portrait. She was instantly calmed by my voice, and she was always content in her daddy’s arms. She and her daddy sat on the couch and watched the NBA playoffs together. And, even though I was nursing, my husband and I both got up together for 3AM feedings. We experienced all of the sleep deprivation that all families with newborns know so well. Our daughter smiled and cooed at us, and she definitely expressed her happiness and/or displeasure. Lol! I dressed her up in the many, many, many clothes that I bought for her during my pregnancy. And, we took pictures every single day. We held her. We kissed her. We adored her. She was given more love in her short life than some people experience in an entire lifetime.
A few weeks after we brought her home, our hospice nurse told us that our daughter was “living on borrowed time”. The nurse tried to prepare us that the end was near. I tried to cherish every moment, despite my panic and overwhelming anxiety. A few days later (on the day after our wedding anniversary), our daughter died in our arms. As strange as it may seem, those last hours were horrific and precious at the same time. As her mommy, I did what I could to be there for her during her transition. I softly spoke to her, as my voice had always calmed her. I mustered up every bit of courage and calmness to tell her that it would be okay. And, that she could go. For hours, I caressed her hand as my husband held and rocked her”.... until she took her last breath. While remembering her and her lively, rambuncous spirit is precious, reliving those last hours is truly heartbreaking.
Losing a child results in a profound, primal, gutteral loss that is more intense than anyone can possibly fathom. The pain was so raw and intense that I literally felt as though I would die. I couldn’t breathe. I was broken. Contrasting how I felt in those dark days/months/years following her death with the perspective that I now have is truly amazing. What I couldn’t see in those dark moments was that there IS joy, peace and grace “on the other side” of that excruciating pain. For anyone in the midst of that experience, I have two words for you: hold on. Pray. And, hold on. And, most importantly, as lonely and isolated as you may feel, know that you are not alone.
Please be sure to revisit tomorrow for the third and final installment of this story: “My Baby Daughter’s Death: The Aftermath”.
Until next time”....
Much Love, y’all!
Shenia Coleman Kirkland
CLICK HERE TO SEE THE ENTIRE SERIES
Shenia Coleman Kirkland is an attorney, law professor, novelist, screenplay writer and motivational speaker. She chronicles her journey from a driven corporate attorney (and feminist) to wife and work-at-home mother on www.1peachymama.com, in which she discusses the tenuous balance between motherhood, marriage and maintaining a sense of self. She would love for you to follow her on Twitter @1peachymama.
K.J. says
I couldn’t leave this article without leaving some sort of acknowledgement to you and your husband. First of all, I admire your strength for telling your daughter’s precious story. Most importantly I am so incredibly sorry about your loss. I watched the pain my sister experienced in losing a child and there are no words to describe the pain she endured…so I can only imagine the void you are feeling. I pray the Lord continues to provide you and your husband strength when you are weak…peace when you are anger or hurt and faith when you are lost in confusion. God Bless you and your heavenly angel.
Cutecouple1117 says
As I sit here in tears reading your story, I am so overwhelmed with gratitude. I have 2 kids and I could not imagine losing either of them. Thank you so much for sharing your story. I pray you and your husband have found peace and healing through this journey. May God bless you both!
Janelle Wade says
I could not read the entire article. I think you are so brave for sharing you story. My God bless you!
sistakin says
I’m so sorry for your loss. Beautiful baby. I have five children (after an ectopic pregnancy and numerous miscarriages) and I don’t know how you and your husband handled that. I admire your strength. I wish I could’ve healed her for you. She was such a sweet baby. I’m crying…God bless and keep you and your family!
Tanyna says
Such a touching story. Thanks for sharing. May God continue to strengthen you and your family!!
ny says
Thank you so much for sharing that heartfelt story. May God bless you.
Ronnie_BMWK says
Thanks for sharing. I know there is someone that benefited from reading this today.
Anonymous says
Man, I am bought to tears. My oldest son was diagnosed with cancer and he beat it. This story, breaks my heart. we have four children and all are well. I wish there was something i could do to take away all the pain. Alas, there is nothing. All i can say is that if you are in the Dayton, ohio area, our home is yours to share. To share in the love. To see our children shower you with that love. I will admit that i do not have the strength to go through something like this. I commend you for this. Thank you for sharing.
Jorie says
Thank you for sharing your story. God is truly in control of ALL things and He is purposeful in all His doing even when we don’t understand why. Your story is so vivid, as I sit here reading it I can feel the realness of it. I can only imagine the feelings you and your husband may feel sharing the story even 7 years later. Thank God for those awesome memories that you have, and the love and support between the two of you. Your story is a testimony and I can only believe that it will be blessing to many.
Felicia says
This is a very heartbreaking story, so sorry for your loss, she was beautiful, and the lord gave you special time to share with your family, he only takes the best. Thank you for sharing your story, May god bring you peace and many blessings.
Shelly says
Thank you for the strength you had to share your story. I have one lil guy; I cannot begin to imagine how I would respond if something like this had happened. May God encourage & strengthen you and your husband.
Klloyd89 says
It’s been 17 years since I lost my son to SIDS(Sudden Infant Death Syndrome). I know that you are thankful for the gift of being able to be a part of what God created to bless you and your husband with. At the end of everything she was still a beautiful gift from Him. Be bless and encourage that you and your husband was choosen for to be her parents. Much love and blessing.
Dculbertson25 says
Iam so sorry for your loss, and may god bless you and your husband. She was beautiful.
KiaButterfly says
May the Lord bless you my sister.. I dont even have children yet but your courage to write this and to bless others, is amazing! She was a pure angel!
Michelle_edwards2002 says
After reading your story, I was moved to tears. Find comfort in knowing you did everything you could for your precious daughter. You brought her home, you nursed her from your body, you gave her unconditional love, and you brought her joy in times when she needed you most to be there for her. Your love for her conquered, it endured. For you and your husband, i pray that you continue to help each other through the difficult times. God truly gave your daughter the best parents in the world. Your strength, your courage to press on and make your daughter’s short life the happiest is the greatest achievement in itself. Thank you for sharing your story with us.
Jenise Bradshaw says
I am so glad that you had this opportunity to care for your daughter. I know how hard it is to lose a child and it has shaped and molded my life in a different direction. My experience was very subtle, no time to expect or prepare. As with many stories that have been told before yours, you have really touched many hearts. Thank you for sharing!
Ms. PT says
Like so many others, I was moved to tears reading this. I cannot imagine going through what you and your husband have gone through…then revisiting it in order to help others. Someone else said that God CHOSE you and your husband to be her parents…and I think I can agree with that. I am sure that your story is blessing someone right now and I thank God for you and your strength. I, too, pray for healing and blessing and abounding love for you and your family.
uneeka jay says
This piece moved me like nothing I have read recently. I cannot imagine going through what you endured. You and your husband were so brave. Thank you for sharing your story! You reminded me to be thankful for each of my children.
Babzcep00 says
This is beautiful! I am a mother of an 8mth old and I admire your strength! god bless you
Brooke says
Thanks so much for sharing your story. My husband and I are currently eight months along with a baby girl that has been diagnosed with Trisomy 18. I
Brooke says
Thanks so much for sharing your story. My husband and I are currently eight months along with a baby girl that has been diagnosed with Trisomy 18. I continue to be inspired by stories like yours and do know that although there is sadness through this there will also be joy.
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