It’s 10:30 pm. I’m laying in bed staring at my sweet baby. The same thing I’ve done for 20 months.

She is beautiful. Delicate features. Wide eyes. Wild hair. Full cheeks despite her wasted body. Her skin wrinkles. Pale. Her mouth always holding her green pacifier. Her hand holding some wrapper. Legs curled in like a frog. She snores, loudly. Motionless.

2 weeks ago we put our beautiful baby into the care of hospice. She is too sick. Too fragile. Our time is fleeting. Nothing will change that.

One day, too soon, I won’t be staring at her as she sleeps.

My heart is broken. I have fought. Advocated. Begged. In the end it bought us more time. I want forever.

I recall our early days. A struggle from the start. Her big eyes staring at me as she choked at the breast. Unable to swallow effectively. No one understanding why.

My other babies were 9 and 10 pounds within weeks of birth. Felicity didn’t grow. Stopped. Growth failure. I felt like I was the failure.

I wasn’t. Her body failed her. In the worst possible way.

Liver. Heart. Kidneys. Lungs. Spine. She can’t even regulate her own blood cell production anymore.

She no longer screams. Medication dulls the pain. I wish there was a medication to dull mine.

Every day I wake up and smile. I laugh. I dance around and joke with my other kids. I don’t need this to traumatize them anymore than it already will. I push my pain aside so I can tend to theirs.

Every night I sob. I wonder what I’ll do when she’s gone. How will I ever sleep again?

I wonder what it will be like without the sound of the machines?

I wonder if the doctors can be wrong?

I wonder why life is so cruel.

Parenting comes in all forms. Some of us have many healthy happy children. Some parent their losses. Some have special needs that won’t kill their children but will alter their lives forever. Some never have children at all and yearn daily.  Some children are rocked by mental illness. Cancer. Genetic disease. And some have one toe in life and one in death. We are all on our own journey.

I don’t know how long this phase of our parenting journey will last. I don’t know what the next phase brings. But I do know that I will spend every night, for as long as I can, staring at this beautiful baby who has been given to me, even if it’s fleeting. And even if my heart is breaking.

6 Comments

  1. Hollyann carr on October 27, 2020 at 11:08 am

    My heart yearns to take your suffering, I feel your pain from a far and it makes me cry and ache for you. Just last night I sat and cried just having seen your tiktok saying lis is not doing good and it really hurt my heart! I want to make a cure, diagnoses for her, and to just make her magically healthy so your family doesnt have to hurt anymore. Her siblings shower her with love even though they know she will one day be gone. You show them the utmost love and compassion. I just wish to make her better.

  2. Carol on October 27, 2020 at 11:35 am

    When I first saw Felicity a little over a month ago, she immediately stole my heart. I know nothing I can say will ever ease your pain or your family’s. I do want you to know that so many of us have prayed and cried with you. I want to say if I was near you, I would do everything and anything to help, to be there for support and love, a shoulder to cry on… I wish I could pray this away and make her healthy as I am sure you wish that every minute of everyday. Felicity will always be in my heart and heavy on my soul! You are amazing, strong, a fighter, a mom, a wife, and so much more!!!! Sending you as much love as I can possibly send to you from afar. Please give Felicity hugs and kisses from me…as I wish I could myself. Hugs and prayers always for all of you!!!!

  3. KATHLEEN on October 27, 2020 at 12:52 pm

    My heart goes with you. I imagine how difficult this is maybe not same situations but been hard roller coaster too. One day by day the doctor told me once even said enjoy with her every moment honestly she fights every day but still with us. You are an excellent mom you are doing your best for her for your other babies for ur hubby and specially for you. GOD Bless you today, tomorrow and for ever remember she knows how amazing you been for her all the tears the joy u you have with her will be for ever there. I am just an a stranger in ur lives but as a mom Totally feel ur pain be strong sweetie with the love Kat

  4. Cindy on October 27, 2020 at 2:26 pm

    I’ve watched from afar as you’ve navigated all of the challenges, setbacks and heartbreaks. I’m in awe of your strength and determination. Felicity could not have asked for a more loving or devoted mother and family for her short time here on earth. Thank you for sharing her with us 💓 I will continue to pray for you all.

  5. Ashley Grabill on October 30, 2020 at 4:50 pm

    Nikki my heart goes out to you❤️ Know this beautiful baby was brought into your life for a reason and the love the two of you share will last eternally. Hang in there girl xo

  6. Paige Crutchley on November 1, 2020 at 11:04 am

    My heart is just broken for you and your family. I just can not put into words what I want to say to you.

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