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A Special Loss: Living with the Loss of a Special Needs Child

I do not believe there is any experience in life as traumatic or life-altering as the loss of a child. The loss of a special needs child often brings a unique twist to this excruciating experience.

Those who have not been lucky enough (yes, I said lucky enough) to have a special needs child in their life may not understand the unique circumstances that are presented by such a situation. Most parents, despite themselves, when they learn they are to be parents start to dream about the life of their new offspring. Nobody envisions their baby as less than perfect, their child’s life as less than blessed. When parents learn their child has developmental issues, disorders that will equate to “special needs” all its life, they are thrown into a state of grieving for both their child and themselves. This is true for every parent whenever they learn this news. It may be at birth or even in the womb, or later as development lags or an injury or disease creates damage to the brain or central nervous system. Most overcome this and begin to do the work needed to give their child the best life possible.

It is indeed hard work to care for a special needs child. It can consume every minute of every day and result in a life given only to the needs of that child. Every parent faced with this does what they can as they are capable physically and emotionally. That child and its care become your life, in many cases quite literally. But those parents are rewarded. It is incredible to see the world through the eyes of one of these children. My daughter was that child. Nobody or anything I have ever experienced in life taught me more than my daughter Erin did. No matter how hard my day was, coming home to Erin and her smile made everything right and the world brighter. I was able to marvel at small things that because of her I realized were major experiences and great achievements that few others even noticed. The world with Erin in it was brighter, happier, filled with hope and offered more opportunity than we probably deserved.

That is the beauty of a special needs child. Others may see them as needing and taking but those of us fortunate enough to live in their presence understand they are mostly giving. When these special people give they also give with all they have and give freely with no caveats or expectations. They are the personification of pure joy.

When that life is taken from us it leaves a huge hole, a chasm of emptiness. It changes our lives as parents immediately and immeasurably.

Everything, out of necessity, revolved around them. That hard work we came to almost cherish, the mindset of worry and care that was our constant companion are gone in an instant. Selfishly, I also immediately missed the brightening Erin brought my life. My ability to mirror her in smiling at life and appreciating even the smallest wonder was gone. It was at that moment that my wife and I realized how much we needed her. We were “special needs” parents. For 25 years we had lived each day with this as our blueprint for life. In the blink of an eye, it was gone with Erin.

Other people, meaning well, would tell us it was a blessing that we no longer had to deal with all that. They could not have been more wrong. It is eleven years since Erin’s death and I still find myself seeking to find a new meaning, a defining vision to replace my life as Erin’s parent and caregiver. There are other wonderful things in our lives but none rise to the level of our time with Erin and I now believe they never will.

Yet, thanks to her, I go on and see life for what it is. I remember how she marveled at small things that others might miss, I experience something that would have made her laugh and I laugh. I look into the eyes of other special needs people when I come upon them and in their eyes, I see her reflected back on me. I tell their parents they are lucky. Some understand and smile, others look puzzled until I explain how much I miss my special girl. They are lucky and I hope they cherish every minute of their time with that special child. I now look back and I cherish every memory of every minute of my time with Erin. I am so thankful today for that time. My loss is real and deep but I still count myself lucky to have been a “special” dad to a truly “special” girl.

 

 

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Comments (21)

  • Dear David,
    Wow this brought tears to my eyes. As I read this I thought I have felt the exact same way, then I got to the part where your daughter’s name was Erin I lost it! You see my daughter was also Erin. I lost her 39 years ago when she was only 22 months old and I still miss her terribly. I miss watching her grow up and her special needs made her more special. Thank you for sharing, this meant a lot to me today. We really are connected in the most sad hurtful way.
    Debbie Buchanan

  • Wow! Ever word mentioned is so true my angel boy was my companion for 21 years and yes I miss him every second of every minute . No matter how much pain he could’ve been facing that day he always had a smile on his face. Thank you very much for sharing this with me. God bless you and your family

  • Thank you, David, for this article honoring Erin and her value. I am a Compassionate Friend and facilitate many monthly meetings. With your words and wisdom, I now feel that my role as a facilitator has been enhanced.

  • No truer words have ever been spoken, as my “special” girl was with me for 28 years. She’s been gone for 10 years now,and I miss her every single day; but I thank God for bringing her into my life. She was my only child and I look forward to the day when we’ll be reunited once again.

  • This was beautiful and right on . Being the parents of a special needs Daughter we lost our sweet girl at the age of 32 and it does hurt so much. Even after 8 years this year it feels like yesterday but it also feels like forever since we held her in our arms and hugged her. She was our second child and only daughter and she left a large hole in our hearts. This article really says it so well. Very good read.
    Thanks for posting it.

  • David & Colleen-

    I think I’ve seen this before but it’s so beautiful I have to tell you what a gift you both were to sweet Erin. That photo of you and Erin fills me with so much joy every time I see it. Thank you both for sharing your beautiful Erin with me!

    Love you both!
    ~Joannie

  • Dear David , Thank you for sharing your story.. Our Becca was special needs , she also passed suddenly in her sleep 5 years ago . She will be our forever 29 year old daughter.. we speak of her daily and miss her dearly , but through her we found Our love of Jesus and we are comforted knowing we will be together again .. God Bless You and your family

  • David,

    I have to say, that reading this has acknowledged, what I felt with my very special son, Marty Jr. He was my blessing, and brought joy to my life and those around him. After he passed away, I lost all purpose as he was my life, my world for 19 years. Thank you for sharing this with the rest of the world. God Bless all! ileen

  • After all this time we still miss our very special children, I lost our beautiful granddaughter at the age of 18 in 2012 on my brothers birthday, she passed away in her sleep , I was very blessed to have her in my life since she was a baby and not a day goes by that I do not miss her,she consumed my days and I was lost without her ,unless a person goes through this ,it is very hard for people to understand what we are feeling, god bless you and remember how special and lucky you were to have had her in your life

  • My son, 26, is the one who shows me what unconditional love is. I just told someone last Sunday thay he gives me his million dollar smile and the world is right again. Thank you for sharing.

  • Thank you for sharing. We lost our 25-year-old, special needs son, Alex, last year. It has been rough. My husband and I have always thought we were lucky to have him. He made us appreciate life so much more. All of our children have benefitted from having him as a brother. Alex showed many people their path in life.

  • I too lost my sweet girl. She never spoke a word but said so much with her smile and sweet blue eyes. We lived every moment with our Maggie, 16 amazing and challenging years. We experienced her seizures with her, her feeding tube, diapering, and we were her voice.
    I think part of us died with her, that terrible day in November of 2016. We are learning to live life with out her. It takes a new sort of energy that people might see for the better. Very different but definitely not better.

  • Dear David
    Thank you for sharing as everything you explained was how I felt when my son Zakary passed 2 years ago at age 14 and still do. I was lucky to of been his mother. My son had CP and was non verbal and in a wheelchair which required 24/7 care. I have 2 children that the not disabled who we love as much as we did zak but no one can understand the loss of a special needs child even those who lost a child because how do you go from taking care 24/7 to nothing at all. I struggle everyday like it was yesterday that he passed. I can’t go to therapy bc I don’t want to even explain to them my child bc they don’t know him and can’t relate. It’s so hard. Thank you for sharing
    Brooke
    Mom to zak

  • Dearest David, I am in tears, not because our family has lost the child, but because I know that the day will come. I’ve had people approach in the grocery store and pity me or better yet, marvel at the my incredible selflessness to be taking care of our boy well into his adulthood. What they don’t know is that my boy rises every single morning with one job and that is to make me happy. We make silly jokes that have been funny for years, and when he lost his hearing, we made our own variation of ASL with a special sign for sillysaurus. Friends and classmates recognize us over a decade out of high school and stop to talk and reminisce. You see, Andrew got up in the morning to make them happy too. Our family could not love him more. Hard work, indeed, sometimes. The burden that others imagine tho, has never visited us. Thank you, David, for penning such an insightful and very spot on article.

  • 110% accurate. Spot on. I’m a single mom to 8 special needs kiddos. I lost a son who was total dependence on me care wise, 16 years ago, and eleven months later, my husband who had MS also needing me as his full assist care partner, the last ten years of our 20 year marriage, and I can’t thank you enough for putting words to this.

  • This explains it so perfectly well. The only way you can understand such an immense loss and all the secondary losses and third losses around the world of having a special needs child is inmesuable until its experienced. Never in my life has it went to so full to a sudden stop so fast then when my son’s accident occurred. He was only 6 so I didn’t have as much time but the world we were building the things we were preparing, all the work, love, care, gone in instant

  • David:
    What a touching story, and so close to my heart. My daughter, Mandy, was born with Down Syndrome; I experienced the same loss at her birth as most parents of special needs children, the loss of the dream. BUT, Mandy changed my life from the very day she was born; I became an advocate for her, making sure she had all the services needed to make her life as normal as possible, including integration into her community school, doing all the things that normal kids did, as much as possible. When she turned 21, she moved into a group home, and became even more independent. She was the light of my life, always made me laugh, and definitely had an opinion about everything. She got sick on December 14, 2010, and died on December 18th from a simple case of pneumonia that could not be treated. I miss her so much every day, and my love for her will never stop growing.
    I am also from Minnesota, and was part of the Compassionate Friends in St. Paul. We moved to New Mexico six years ago, and unfortunately, there isn’t a chapter where we live. Thank you so much for sharing your story! We are special parents with very special children.

  • This is so beautifully written and couldn’t be more honest and true. This is why my angel and my parents are my heroes. No love can ever compare to the love my parents had for my brother and vice versa. My brother Trevor passed away in November 2015 from Duchenne Muscular Dystrophy. My parents can absolutely relate to every word in this article. Thank you for posting. I am so sorry for the heartbreaking loss of your daughter ❤️

  • Oh my goodness, I could have written this about my beautiful Angel Katy, who died 2yrs 10 months ago, 3 weeks short of her 31st Birthday. You have summed up the pride and honour you feel when you are blessed to have our wonderful children to love and care for and see it as a privilege and not a chore as others see it. People don’t always understand that the overwhelming love and protection you feel when you have a new baby never changes for us, as our children need that level of care throughout there lives and it just becomes our way of life.
    Many people have said that we can have a “normal” life now, but that was our normal life for nearly 31yrs everything is less colourful now.
    My Daughter died because of small minded staff at the hospital who saw the wheelchair and not the person, they told us she was fine, didn’t examine her and put us in a side room. Two and a half hours later after all our requests for help which were not answered she died in my arms. I am grateful she was wrapped in my arms and mine was the last face she saw. My heart breaks everyday.
    Again, because she was disabled she did not receive the right treatment or resuscitation, she was considered a second class citizen and others were more important. We had to fight to get a proper Inquest, my wonderful Son gave me the strength and help to fight on for his sister whom he adored and the Hospital were found guilty of gross negligence causing her death.
    Erin and Katy were an inspiration to all who knew them and have left such a huge whole in our lives that is impossible to fill but we must go on to keep their memories alive.
    God bless you all as he does our children.

  • Dear David, As the mother of a special needs daughter I so needed to hear your words. Thank you! Our Meredith died 2 years and 5 months ago after a tough fight with pneumonia. She had Rett Syndrome. We had to take her off life support once we were told she would never recover and would always be on life support. Driving home from the hospital in shock I noticed my grief did not have a name. This may sound selfish, but I had always seen myself as Meredith’s Mom. That was who I was. I took pride in that role as we fought together to get what she needed in school, health care providers, and the world basically. Who was I now? I felt guilty because I was glad she was out of pain, but at a total loss for how to go forward. My grief was crippling. No more IEP’s? No more weekly trips to Stanford? No more advocacy to get the accommodations that she needed at her school? No more fights for proper medical care? How to get my footing and find a new “identity” after mine had been so intertwined with Meredith’s for 29 years? I envy those, like you, who seem to have figured it out. You are an inspiration. Thank you.

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