Remembering Aidan

This past weekend we celebrated my dead son’s birthday.

It’s the same every year; it’s easier that way. There’s no thought or planning involved; we can just slip into it and let the ritual carry us. At 5 pm on October 17th, the family and friends who are coming meet at our house. We walk down the back path, down the hill to the cemetery, carrying a bunch of balloons. When we get there, the balloons get distributed and when everyone’s ready and we’ve ascertained the direction of the wind, someone counts to three and we let them go as we all say, “Happy Birthday, Aidan!”

And off they go to Heaven, it seems, and there is a hush for a moment, a wiped-away tear—and then the children are running and playing, the grownups spend a moment at the grave, and we walk back to the house to eat pizza together.

Aidan was born with lissencephaly, a major brain malformation that caused severe delays, seizures and choking spells. Those choking spells led to the pneumonia that took him from us just after his first birthday. The year that he was alive was very hard—and very powerful. Aidan couldn’t do things other babies could do, but he loved to be held, especially if you moved or danced while you held him. He loved to be talked to or sung to; he loved soft touches, the warmth of sunshine, the tickling of a breeze. These things took on real value; the world slowed down, and we rejoiced in holding him and holding each other. Little things made us happy: a few smiles from him, a sunny day, a pretty flower, a nice meal, a walk outside together.

“Every fall, the season of his birth and death, I get sad. I will find myself in tears and realize: oh, it’s fall. Of course.”

The raw grief has long passed, although there are still sometimes moments when a smell or a certain light in the trees or the softness of a baby blanket will bring back a memory that stops me in my tracks. The grief now, 14 years since his death, is more hard-wired. Every fall, the season of his birth and death, I get sad—unrelated to anything going on. I will find myself in tears and realize: oh, it’s fall. Of course.

It’s more than just grief that comes every fall. Out of nowhere, every year, I get panic attacks that something bad will happen to someone I love. Fall has become for me a time of being aware of just how vulnerable we all are.

We like to think that nothing can touch us, that our loved ones will always be well and with us. We might know intellectually (at least on some level) that there’s no guarantee of this—but we ignore it. Which is understandable. After all, most of the time everything works out fine. And it would be very painful to go through each day being fully aware that it could all be taken from us, in an accident, a fire, a result of a test.

But every fall, I can’t escape that awareness. Every fall, as I remember my baby, I come up hard against the precariousness of life, and it is indeed very painful. But as I’ve lived through it each year, I’ve found that there is a gift to it—because, just as when Aidan was alive, the world slows down. Those things that had absolute value when he was alive—those moments of peace, a sunny day, smiles from those I love, and most of all holding each other—become deeply precious and important, not to be taken for granted. As much as it hurts, I am grateful for the reminder—and the reorganizing and reprioritizing it brings.

We chose a line from Isaiah for the epitaph on Aidan’s gravestone: A little child shall lead them.

He did then, and he still does.

31 thoughts on “Remembering Aidan

  1. Beautiful and touching Dr. McCarthy! May God bless and comfort you and your family and may your beloved son Aidan rest in peace in Paradise!

  2. Your story was very moving. My sister died when I was a kid. She was only 10. I remember that at that time, death was not really discussed…it was hard to grasp. It still is many, many, years later. Losing someone you love is always difficult…and there are so many different experiences under this concept of “loss”. My sister died suddenly, some children are ill first – but either way not only the parents, but siblings too, struggle to come to terms with it. Thanks for sharing your experience with everyone.

  3. Claire, thank you for sharing your beautiful memories, and your painful ones. God knew what he was doing when he gave Aiden to you. Because his time was to be so short, he needed to be with a family who could pack a lifetime of love and comfort into only one year. It sure sounds like that is just what happened…

  4. I’m so sorry for the loss of Aidan. I know I could never truly relate to your pain and grief, but on a certain level I can relate to your story. It was 2 years ago Sept. 17, 2008 that my daughter underwent brain surgery at Children’s (Dr. Madsen) to remove what they could of a brain tumor that was diagnosed in August, 2008. She was a very happy and healthy (or so we thought) 10 year old and the diagnosis shook us to the core. Our hospital stay was very rocky and her adjustment after the surgery was hard. Luckily the tumor is a grade 1, but they were not able to remove all of it. She is doing well but we continue to be followed by Childrens w/ MRI’s and such. We just got the okay to go once a year to the Brain Tumor Clinic at Dana Farber. You nailed it when you described your feelings during the Fall. It is exactly how feel. I’m sad that she has had to endure this and lose some of her childhood, I cry for the loss of her innocence with this diagnosis, I get anxious that bad things are going to happen to those i love. I wake up in the middle of the night shaking. But you are right, it makes you appreciate the little, simple things in life and the time that we share. We don’t know if the tumor will grow again or not. The only thing we know, is it has been 2 years and it is stable and she is doing well. The Fall used to be my favorite season, it is now a time that we go for tests and such and we wait anxiously for the results. When life starts to get in the way of what really matters, I just think of this time of year and it puts it all in perspective…the good and the bad. Hopefully, we will only have good from here forward.

  5. I lost my son to a diaphragmatic hernia on October 25th 2006. I understand every word of what you just wrote. When the leaves turn Orange I think about Ryan more than any other time of the year. But I love fall. because it makes it real. The short 8 days of Ryans life that in the hustle and bustle of having a 2 year old and an infant can be forgotten. but fall comes and its not just a dream he was here. he did fight like hell to live and he did leave us when God decided he had had enough on November 2nd 2006. The reminders of Ryans life other than fall are Hospital soap. Thank you for writing this. I was contemplating what to do for Ryans 4th birthday and you have given me such a fabulous idea!

  6. Thank you so very much for sharing Aidan’s life and death as well as your moments of panic now. Living with my son’s chronic health conditions and mental health problems brings me similar moments. We lost 4 babies on the way to our son and daughter then two more after our son’s birth. The feelings that we will someday lose our son to his epilepsy or co-morbid disorders seldom leave this mother’s mind. It is not obsession, rather a reality of the percentages. I have tried to embrace the moments in sunshine, sonshine as well. Moments when he shines, is living well, and functions. Finding ways to delight in moments, celebrate past, and even share remembrances.

    Thank you for sharing your thoughts! They always mean so much to me!
    Ginny Miller

  7. My daughter, Claire Elizabeth, would have been 5 on Nov. 1st. (Today is her little brother Nate’s 1st birthday.) She had infant leukemia and was cared for at Children’s, mainly in the ICU. Mark was her respiratory therapist. She passed away after just three months of treatment, the chemo was too hard on her little body and the leukemia too aggressive. She was 7 months and 1 day old. Your article helps me put words to my thoughts and feelings. They are not as raw as they were, but they are there. I too am grateful for my time with Claire, I learned a lot about love from her. Thank you for sharing your thoughts about your son. We’ll say a special prayer for Aiden tonight.

  8. I appreciate your putting into words something that, until now, I’ve only whispered to my partner through bitter tears. We lost our son in February 2008. The sadness starts around January, when the holiday buzz has worn off, when the trees in New England are bare and the winter seems it will last forever. There’s something both devastating and comforting about reading what I always thought was a private phenomenon. I wish you peace and comfort this Fall.

  9. you story could have been written by me. my daughter was born/died dec 16,02-jan 31, 03. she was born with hypoplastic left heart syndrome. as soon as the air changed and fall approaches i feel the same feelings.((( remembering our babies))))) kate

  10. Thank-you for sharing your story. I am sorry for your loss. You are an inspiration. Almost 24 yrs ago in Nov. my daughter was diagnosed with a Congenital Heart Defect. We spent 5 months at Children’s. Dr. Nadias and Dr. Mary Vendevelde were her Cardiologist. Dr. John Myers did her surgery at 6 wks. old. There was very little hope and she received Last Rights. My daughter came through and is 23 today and well. That was as close as I had come to losing a child. Today, her older brother 32, is dying with Colon Cancer. Nov thur April are always tough, and I also have panic attacks. Every day is a gift and I try to prepare , but I think it is impossible. You are amazing and it was great to hear about how grief affects us. I don’t feel so crazy, after reading your story. Aiden was and continues to be a Gift ! always, Cynthia

  11. Thank you so much for sharing the life and memory of Aidan. It is a difficult and painful topic and SO very important to know that other parents, even the healers we rely on every day, have shared experience, have the same struggles and have learned something they can share from the experience. I am the parent of 3 medically needy children, 2 with trachs, and live the life of hope while knowing in my head that their health is very compromised. I think about the wonders my children see each day and the loss they already know in having friends who are now angels. As a parent, you’d like to protect them from it all, but when you gasp or sob from the e-mail or posting announcing yet another friend’s child has earned their wings, the questions come, they over hear, they stop seeing new pictures of someone they had connected with before. Each day I rely on a 40mm piece of plastic and a CPAP machine to keep my children alive, and I live the life of believing each day will lead to another- because it must. Thanks for sharing your challenges as well as celebrations.

  12. I lost a daughter when she was only two weeks old due to a heart defect and every January 7th she is on my mind. Like you said there is always something that reminds you of them. I now go to Childrens Hospital with my grandson for regular visits as he has Cystic Fibrosis. There was a woman there with her daughter & grandchildren that gave me a little prayer card that told of how children are only a loan from God. I still think of this but I don’t want to go through that again. I guess that you find a way to deal with everything as it happens.

  13. thank you for sharing the story of your son Aidan. I am just navigating the grief of loosing my own son this June . We still have so many “firsts” to come and I appreciate hearing about your journey .
    laura

  14. I lost two daughters. One at age 2 1/2 in Oct. 1963 with pneumonia and a daughter in 1965 with crib death. In 1968 I had another daughter who had the worst asthma attack the hospital had ever seen she was sent to Boston Children’s Hospital and the wonderful care and all the prayers saved her life. She was presented to Jimmy Fund Hall as a “miracle” baby. Today she is a mother and manages a clothing store and goes to college. I still miss my daughters that passed away and think of them often but I have been given many miracles and blessings and I am thankful.

  15. I had my daughter jan 10 2001. I lost her after one hour and 20 minutes. I didnt know her,but I loved her.all The memories I have of her are when she was inside kicking and moving around. the day I had her was the hardest thing I ever had to do in my life I held my daughter knowing she was gone,at the time I thought it was between right and wrong.today I’m glad I had the chance to hold her.today I had a step daughter that helped alot,but that empty spot was still there.when January comes its still hard when its her birthday.memories flood,but I cant say all good memories,because my memories are short.but today I have two natural son’s and a step daughter that i love very much..they say time heals. it does but not all the way

  16. I am sorry for your loss, but truly appreciate you sharing your story. I remember how alone I felt after my baby died. I think it’s important to talk about, even though not everybody want to hear it.

    Fall reminds me of being at Children’s with my son. We were there in the summer for surgery and ended up back there in mid-September. Three months later we brought him home for less than two days. This December will mark three years since he died.

  17. thanks for sharing, i’ve never lost a child, but was with a dear friend when her son drowned an was life flighted to childrens in birmingham al. he was 16 years old, an ended up passing away an we buried him the day before his 17th birthday. it has only been a year, and i connected with what you said about the mind numbing grief. keep sharing your experience, you never know who it will help

  18. Thank you. I can only imagine how difficult it is to be a doctor and not be able to save your own. It has to be doubly so as a mother. Your story was touching, inspiring, but heart wrenching.

  19. I applaud you for sharing your very personal story. Your message will surely help others going through similar circumstances. I’m certain that your Aidan smiles each time his Mom and family think of him. My experiece with Childrens Hospital was very different. My son had a catheter ablation performed there 18 months ago. It was successful and we are profoundly grateful. I do feel compelled always to share his story so that other asymptomatic patients may be discovered. If you have not read a book by Ann Hood titled Comfort, I highly recommend it. She lost her daughter to a strep germ at age 5. She is a very gifted writer. Wishing you continued strength to keep sharing your son’s legacy with a world who needs more people like you.

  20. I am one of Childrens “oldest patients”. I have been treated there since I was

    six weeks old. Today I am sixty (60) yeaars old. Dr. McCarthy you are typical of the dedicated men and women I have met during my years there.

    Your dear Aidan will be in my prayers.

  21. Beautiful tribute to Aidan. And, reading these stories of others’ losses (or near losses) is a sign of his continuing impact — and of your grace.

  22. Your sharing is healing. Your genuine writing shows me that Aidan was very special, his life had great purpose and he’s touched me through your story. I don’t believe any of our experiences of losing a child are the same, although grief certainly has many commonalities. Age is no measure for the depth of love and grief. Each of our children were unique & deeply loved. My 22 year old son died unexpectedly just before Christmas, 2009. As we draw near the first anniversary of his death, I realize how these times can be profoundly anxious. Worry over things that could, however, may never happen is heightened after loss. It’s through our faith and sharing with others in this “fraternity” that we can survive. My deepest healing has come from going to others suffering the loss of a child, not with answers, but with an ear, a hand and a tear; yet somehow still standing. I have a few writings on my Facebook albums you’re certainly welcome to read & share. God bless you and Aidan. Cam Finley, Wilkesboro, NC

  23. Dear Claire, thank so much for such a brave, incredibly touching personal story. I have a big day coming up next week which causes me a lot of stress, and wanted to let you know that your story has brought me immense relief, reminding me of what is truly important in life. Thank you!!! Lucia Gonzalez (Spanish Interpreter, Children’s Hospital Boston)

  24. I’m in a puddle of tears. But feel so thankful I got to read your post about Aidan and your unrelenting love and devotion. I agree with you, Dr McCarthy; we intellectualize the reality that life is precious and finite. I don’t know how we’d get through many things if we didn’t. We march into most of our everydays with hope, security, and trust. Just the same feelings we work so hard to provide for our children. As a pediatrician I have witnessed loss more than I ever expected when I chose the profession, and it does lend emotional perspective to that intellectual security, for good or for bad.
    Thank you. I will grab onto my little ones a little tighter because of your courageous story. And I will hold this story in my heart.

  25. I’m with Wendy. Beautifully written. All these elements of our lives are so fragile.

  26. Claire, my dad died on that same day, 29 yrs ago. I was a teen, so I understand the melancholy feeling around autumn. Thank you for sharing your Aidan’s story.

  27. Thank you very much for sharing this, it’s had a profound effect on our family.  I read your first post about this last year, and when we gathered together in June to remember the first anniversary of my husband’s death we brought balloons to the Charles River to release them in his memory.  It was so theraputic – most especially for my 14-year-old son with special needs.  I am so grateful for your willingness to share such a personal and difficult experience.  Wishing you and your family all the best.

Comments are closed.