I had a completely different post all set for today but this story needed to be told instead.
A little over 3 years ago I met an amazing mom and her remarkable daughter. My very first meeting with them was in the Pediatric ICU at a local hospital. Her daughter was almost 3 months old and had never been home from the hospital. During my visit a resident came in to talk to mom about signing a DNR for her daughter. Mom was devastated. We had just been talking about her dreams for her daughter. Dreams that included getting cochlear implants and making sure she can see and getting her to walk and watching her grow up. This resident attempted to pull the rug out from under those dreams. After he left the room mom shook her head and told me she didn’t care what the doctors said. She wanted more for her daughter. She wanted to dream for her and just let whatever happened happen. In that moment I knew I was sitting next to a young woman so much braver than I could ever be.
Time went on and I continued to meet with this family at the hospital. I became as much a staple there as many of the doctors and nurses. The staff questioned why I would provide services to a child who was just going to die. I could have asked them the same thing. Should have asked them the same thing. I am an equal opportunity developmental specialist. All children deserve everything that I have to give them and then just a little more. All children deserve my absolute best. And this sweet angel certainly got it.
Certainly for a long time much of my job was to support mom. She had doctors constantly telling her to send her daughter home and let her die. A doctor told her to stop playing house with this innocent child and just let her die. Just let her die. A common phrase heard over and over again by this mother. A phrase that the physicians made sound so very simple. This life is not important. Just let her die.
Thankfully her mother loved her with all of her heart. She ignored the doctors. She found new doctors who gave her hope. Doctors who saw the child behind all of the diagnoses and disorders. Doctors who felt the love this mother had for her daughter and fought with her to make her baby healthy again.
Eventually, that sweet little girl did come home. In her first year of life she was home for about 6 weeks total. Mom’s goal for the 2nd year was to increase that exponentially. And, increase it she did. Her sweet daughter was home for almost 8 months during her 2nd year of life. She was starting to make developmental gains. She laughed when you tickled her. She smiled every time mom talked. She began to respond visually. She was showing all of the doctors just what she was made of. Deep down her mom already knew. Her mom did a scrapbook for her. Pictures of her first couple of years of life. She was certain to mark the days that the doctors told her to say her goodbyes, that the end was near. So many of those days were marked in this beautiful scrapbook. Each of those days her little princess laughed at and moved on to live another and another and another.
Mom got involved with Make A Wish about a year ago. She didn’t want to take her daughter to Disney or do any of the “typical” things that families tend to do. The Make A Wish staff suggested a party. A party to celebrate her daughter’s life. A party for everyone who has known her and met her and fallen in love with her to come and see her and play with her. The day of the party was beautiful. The park was packed with people who knew this little girl. People who loved her and her mother. It was truly a day of celebration, a day to honor this amazing little life.
I said goodbye to this family about 9 months ago. Mom had an amazing opportunity in another city in another county. She was going to be able to finish school and have some family in the area to help support her. We cried a little together because of all that I had helped support her through. She promised to keep me updated on her daughter’s progress. I was excited for all that was to come for them.
Today I got an email from mom. She started by saying how much she missed me. She wanted to write me sooner but just couldn’t bring herself to do it. Her daughter passed away in January. Mom was rocking her in their rocking chair, holding her and cuddling her and getting her ready for bed. In that beautiful mother/daughter moment her daughter decided she was done fighting, done having a body that didn’t allow her to be the fighter that she was. She was in her mother’s arms, the happiest place she’d ever known. She was feeling the love that surrounded her. She died suddenly, quickly and without pain. She simply closed her eyes and was gone.
As I read the email I cried. I cried sad tears for the loss of such a very young life. I cried happy tears for the beautiful way this little girl chose to go. What a lovely memory this mother has of her last moments with her daughter. No hospital room, no machines, no doctors. Just a mother and her daughter in love. For a mother who knew that she would have to say goodbye to her someday I could think of no better way for it to happen.
Tonight my heart aches for this mother. It aches for all of the little souls who have had to move on too quickly because their time here was through. I am blessed to have known this mother and her daughter. I am a better person for all that this little angel taught me. She touched so many lives in such a short time. And now she is a smiling angel in Heaven.