Emanuela Galit Menon, EmyG, Emy, Emyphant, Memy, Memephant: happy 1st birthday. We have a lot to celebrate: you breathed when you weren’t supposed to, you beat the odds many times, and had more good days than bad. You gave us the most joy. Lots of people say their happiest day was the day their child was born. When I reflect on the 5.5 months we had with you (+ 32 weeks and 5 days in utero), the happiest moments were all the ones you were doing well.
During an amnioinfusion, we could see you practice breathing, that was the best day. After we talked with the University of Minnesota and were assured you would receive a life-saving treatment, that was the best day. When you cried, that was the best day. When you opened your eyes, that was the best day. When I held you in my arms, that was the best day. All the days you were learning and growing, those were the best days. When I bottle fed you, that was the best day. When you cooed, that was the best day. When you smiled, that was the best day.
Today is a day to think of all the best days, which were all the days we spent with you. You gave us 5.5 more months than anyone expected. Thank you for your strength and trust, EmyG. Mama and Papa love you.
Oh Emy. You are deeply missed, right in the center of my heart. I wish I could hold you while your papa receives his white coat today. He could have held you after the ceremony; you would’ve gotten that white coat all messy with your goobers and milk-leftovers. We would have passed you along to all the grandparents– you are the apple of their eye, the sweetest of pies.
Instead of being here in our arms, you are here in our hearts. We feel you on our cheeks when the sun shines so bright. You are the brightest spot, little girl. That’s how we know you’re with us.
Your mama and papa will keep your legacy alive through medicine. We didn’t want to be able to look a parent in the eye after the most devastating moment of their life and be able to say, “we know what you’re going through.” But we do. Our hearts are a thousand times bigger because of you, EmyG.
You made me think my boards prep book was lying to me! For your condition, DiGeorge Syndrome, kidney involvement was not listed as a part of the syndrome. You taught me that I need to go much deeper than the highlight-reel of conditions. You taught me that learning is much more than passing and failing. In your realm of expertise– medicine– it is life and death.
Today, while your papa receives his white coat, we will remember you. Every day we study, every minute we sacrifice, is to make sure we are prepared our very best for this calling. That one day, we will be able to say to a kid without kidneys, “it’s discharge day.” There will be high-highs and low-lows in medical school and beyond, but none of the lows will rival the loss of you. In that, I find comfort. Nothing is more difficult than this, sweet one, so we can carry on. We must carry on. We will carry on. God is with us.
Yesterday you would have been 8 months old. Your hair would be longer and curlier. You would be cooing and “talking” to us as you have in the past. We would have witnessed your first laugh. Perhaps you’d be so wiggly they’d need to move you to a big-girl crib at the hospital. By now you would be on PD and probably close to coming home.
Oh baby girl, you are so missed. Your legacy lives on. Today, we donated the last of your milk. We had a whole deep freezer full of mommy’s milk just for you. Now, so many babies will grow big and strong because of the gift you gave them. You shared your milk. We wish you would have eaten it all up, but that wasn’t what God intended for you.
You’re with Jesus in heaven now. Milk pales in comparison to the splendor of the glory of God. We love you, EmyG. We know you had a beautiful day in heaven on your 8 month birthday.
This week marked 2 months without our sweet EmyG. We miss her every day. Some days are harder than others. We are so thankful for the love and support we’ve received from so many.
This is Grandmomma’s favorite video of EmyG and Ezra. It is from March 23, the day she had her bowel perforation surgery. She was such a strong little girl. She brought us such joy.
I wish I was at the hospital today taking Emy’s 7 month pictures. The nurse and I would discuss what swaddle and bow would look best. Her pink bunny would be next to her with a “7 month” sticker on its belly. A lot of pictures would be taken from what I would think are many angles but end up not much different from each other. I would take her pink memory book out and write about the milestones she met, her like and dislikes, and any surgeries she underwent.
It’s easier not to think about— my brain is trying to protect me from the pain of her loss. She deserves my attention— I wish my brain didn’t try to keep her out. That’s the only way she exists now in this world— in memories. My baby is with Jesus.
It’s been 4 weeks. It still feels like I could drive back to Minnesota and the nurses would be there taking care of her. They’d tell me she was doing well. They’d say, “she’s got such beautiful hair! It’s growing so long and curly! She knows when you walk in the door. She always wakes up and fusses if you don’t greet her first-thing.” There would be talk of her blood pressure, her feeds, her growth. We would discuss the next surgery, the next milestone. She was supposed to have a swallow study to see if she had any significant problems eating by mouth associated with her genetic condition. In the meantime, she was supposed to be doing well on her peritoneal dialysis. She was supposed to come home. It’s been 4 weeks and the supposed-to’s will never come.
Today is May 26th— EmyG would have been 6 months old. At one point, we thought she would be home with us by now. At one point, we thought she would be on PD by now. At one point, we thought she had “made it.” We made plans for her. We had so many clothes— swimsuits, summer clothes, some clothes even up to 2 years old. We had a stroller. We had a room in our house for her.
What hurts today is that she is not here. Instead of visiting room 3129 in Unit 3, we visited Roselawn Memorial Park. She did not greet us with an eyebrow raise, or a cry or a smirk. She greeted us with silence.
The week leading up to her funeral was not the hardest. I was still doing things for her— deciding where she would lay to rest, helping her get from Minnesota to Wisconsin, inviting all of her friends and relatives to a service in her memory. These are all mommy things. It’s hardest after all the things are done. The mourners have come and gone. We’ve received all the flowers. She is put to rest.
It feels the amplitude of happy moments is diminished while the sorrow of her absence is ubiquitous. Keeping busy helps me not to suffer. We’ve done some gardening, some shopping, light cooking and cleaning. Being alone is the worst. Waking up in the morning is hard. God is my comfort. Ezra is my support. God is with us. She is with God.
It is with great sorrow that Ezra and I express the loss of our beloved daughter, Emanuela Galit Menon. She was our littlest and greatest love. She was the strongest person we had the privilege of knowing. Our hearts are shattered but with time the Lord will mend the pieces back together.
We invite family, friends, and anyone who has been following EmyG’s journey to join us in honoring her life and love on Saturday, May 22nd in Madison, WI.
HPC= High Point Church 7702 Old Sauk Road Madison, WI 53717
RMP= Roselawn Memorial Park 401 Femrite Dr Monona, WI 53716
If you are unable to attend in person, the service will be live-streamed. The link will be available on our blog, babymenon.com. We will continue to post our reflections on the blog from time to time.
Due to Emy’s stay in the hospital, she was not able to meet the multitude of people who loved her. We cherish the opportunity to come together with those who would like to honor her. Part of the service will include a time of reflection and storytelling from family and healthcare workers who knew her best. In this way, we hope to share the vibrant essence of our daughter with those who did not have the opportunity of knowing her.
To commemorate EmyG’s penchant for bows, we request attendees wear bows in her honor. Men, instead of a necktie, please wear a bow tie. Women, please accessorize with a scarf, bow, or similar item. This is not a request for formality, rather a choice we think Emy would smile upon.
In lieu of flowers, gifts in Emanuela’s memory may be directed to the University of Minnesota Foundation to support the Pediatric Nephrology Fund. Gifts may be made online https://makingagift.umn.edu/give/yourgift.html?&cart=15845 or mailed to PO Box 860266 Minneapolis, MN 55486-0266.
Thank you for joining us in honoring our sweet and serious daughter, Emanuela Galit Menon.
Baby Menon 