Mckinlee – Supportive Care Program

Mckinlee | UPMC Children's Hospital of Pittsburgh

The following message was posted by Mckinlee's mother, Haley.

Goodbye to our Beautiful Mckinlee

Mckinlee's family | UPMC Children's Hospital of PittsburghMckinlee was born with Transposition of the Great Arteries. She was 1 of 100 babies born each year with a Congenital Heart Defect. Her CHD was not discovered prenatally, and she was flown to UPMC Children’s Hospital of Pittsburgh shortly after birth. During her stay, she underwent five open heart surgeries, four trips to the Cardiac Catheterization Laboratory, diaphragm plication, Nissen fundoplication, g-tube, and trach. This part of Mckinlee’s story is well rehearsed, familiar, and comfortable to tell. I became accustomed to answering questions, calming concerns, and giving updates to worried friends and family.

Mckinlee was a wild child in the Cardiac Intensive Care Unit (CICU). She rarely followed protocol, and made her own rules. Whenever you thought you had Mckinlee figured out, she would throw a curve ball. She made it unmistakably clear that she was in charge. Mckinlee smiled early, enjoyed cuddling, and blew kisses. She gave an impressive stink eye, and feigned sleep. She was deeply loved and adored.

The next part of Mckinlee’s story is not rehearsed, hard to articulate, and full of overwhelming turmoil. I have not shared the story of Mckinlee’s death with many. It is too personal, hard to put into words, and elicits strong feelings that I work very hard to bury. I am forever grateful to the gorgeous souls who were present the day we said goodbye to our beautiful baby. These individuals helped bathe, dress, and preserve memories of my daughter. They gave hugs, wiped snot with a well-timed tissue, and followed our lead. They said goodbye to the wild child they had helped take care of for the past four months. They showed love and compassion during our worst moment. To say I am appreciative is an understatement.

July is Bereaved Parents Awareness Month. A month to recognize the struggles, the perpetual heartache, and the group of people who never wanted to be part of this club. Mckinlee died on May 2nd, 2017.

When asked to write a post recognizing this month, I wanted to write a story of triumph. I wanted to write a story of overcoming grief, of strength and perseverance, a story where my family has adjusted well to life without Mckinlee. I realized this would be a lie. My life has become a series of contradictions and adjustments. My pre-Mckinlee life clashes with my post-Mckinlee life. There is no area untouched by the loss of my child. Work, friendships, relationships, and how I see the world have changed. Grief is filled with moments of anger, anxiety, guilt, sadness, fear, and conflict. I am realizing grief is not something you overcome; there is no post-grief destination. I will always miss Mckinlee. Her death will always impact my life. There is no going back to pre-Mckinlee living. Though grief cannot be overcome, it can be managed. Some days I manage better than others, and that is OK. Through this process, I have met some of the most amazing people. Friends who have become a life line to maintaining my sanity. To them I say Thank You. To the other bereaved parents, members of this horrible club, I send love.

Lastly, I wanted to add a shameless plug for Camp Wakchazi, UPMC Children’s Hospital's camp for bereaved siblings. Mckinlee’s sister attended the first summer and loved it. She was able to spend time with kids who, like her, are living with the loss of a loved one.

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