Grieving for a child I haven’t lost

imageAs I sat on the bench in a public park the tears came easily. Watching little toddlers peddling trikes and mothers chatting to babies. Seeing pre-school children laughing and chatting as they wheeled around the water on their brightly coloured scooters.

It has been building for a while.

The night before last it was anger and hurt as a friend shared how her 14 month old was defiantly talking back when they were trying to get her to bed. I wanted to scream and say ‘but she understands! But she talks!’ Instead I mourned silently.

The world goes on while I grieve for a child I haven’t lost.

It is a very different pain to others. I know the pain of not having children. I know the pain of losing a yet-to-be-born baby. I know the pain of losing someone very close. I know that feeling of despair and anger and hopelessness. People understand when they know you have loved and lost.

But how do you explain you are grieving a child you have not lost?

I get to read to my son. I get to bathe him and dress him and kiss him. I hear him laugh when I tickle him and get to push him on the swings at the park. He goes to school. He will watch a video sometimes. And yet he is lost.

I have yet to hear his voice. I grieve for the conversations we will never have. I grieve the fact I will never hear him sing or shout or chat with friends like those little ones in the park. I grieve for the fact I will never hear him tell me a joke or talk to me about his day at school. I grieve for the loss of never hearing him whisper ‘I love you’. I can only dream about what his little voice may sound like, how it might have grown in depth and tone as he aged, what sort of accent he may have had or how he would pronounce names of people he knew. A part of him will never be. And I feel the loss and pain of that.

I grieve for all the milestones I have missed and may never have with him. As I watched a mum bend down to hold her son’s hand today to help him walk I thought about how much she takes for granted. Her little one was not much over a year old and yet he confidently held her hand to take some steps. By the time my child did anything like this he was tall enough that I had no need to bend and his hands were nothing like as tiny as her son’s. I have skipped the toilet training, the bike riding, the learning to read and write, the school plays, the attending clubs and the having friends. I have been robbed of things others take for granted and that should be part of normal childhood. There is a loss and a sadness for times that might have been but will never be.

There is sadness that I can not walk him to school or that he can not go to school with his twin sister. There is pain relying on others to tell me about his day when I should hear it from him. There is heartbreak watching the neighbours child of the same age jump on a trampoline and my son can not balance on one leg let alone jump. There is a lump in my throat when people ask what my child wants for Christmas and he still plays with baby toys at almost seven. We have never experienced the tooth fairy with him, he has no concept of Santa Claws and neither chooses his own clothes nor has the ability to dress himself. He has never said ‘mummy can I have’ or gone in a strop because he can not go out to play. He has no friends his own age and doesn’t get invited to parties.

He is here but to many he isn’t.

I have a son. He is my pride and joy. I am so proud of everything he does. But I still grieve for him, for the things he will never achieve and the experiences he will never have. And I grieve for myself as a parent when I see a world of parenting I can only ever dream about.

As I sat on a bench in a public park the tears came easily; tears of heartache and anger, tears of frustration and pain.

It is all part of the journey. Before I can move on I need to grieve for the loss. And grieving takes time.

So please forgive me and support me. Life goes on and I understand that. I have no bitterness at that.

But sometimes those tears are needed. Bear with me as I grieve for a child I haven’t lost.

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106 thoughts on “Grieving for a child I haven’t lost

  1. Tears are running down my face as I read this post. I have many of the same feelings. My son was normal until age 7. He was in a car accident and now he is nonverbal and quadriplegic. He goes to school and is loved by all who know him. Yet there are days that the tears still flow. He is 14 now. Looking back the tears are less now than the were before. Looking forward, the tears will never stop.

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  2. I can not say I understand your feelings but I can empathize with them. I have a special needs niece and grandson. One of the best statements I have ever heard was from my Sister-in-law (mother of niece). A special education teacher asked why parents couldn’t just accept their child’s limitations and move on. My SIL (also a special education teacher) replied that people need to understand that for a parent there is a daily acceptance of what there child will never do or will only do at a slower pace, it not a one time thing. You are expressing the same thing just in different terms. Every day is a joy and a challenge and you ( and all parents in your shoes) are the strongest people on the planet and my heros.

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  3. This is so honest,and I know how you feel. Thankyou for sharing. It unearthed buried emotions which, if unvented can cause emotional and physical damage. I know Jesus,and trust father and spirit,knowing one day my youngest son and I will be able to meaningfully connect. But until that day I must press on with life in the now. I miss the milestones, the freedom, the joy, the feeling of pride as he realises his achievements, his future is uncertain, but his destination affirmed. It will be bittersweet. God bless you on this journey x

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  4. I felt the same feelings at one time, right after my granddaughter was abused at 4 months old. People would not want to tell me about their little one’s accomplishments. That really bothered me. My son was amazing through it all. He would say, “She’s ok, Mom, it’s gonna be alright”. I don’t have those feelings anymore. I’m just so very proud of Ily, I look at her in awe and tell her how amazing she is. I tell her, I’ve met a lot of people in my life and no one has even come close to accomplishing the things she has with such grace. She is the happiest little girl I’ve ever know. So positive, eager to learn and even through all the challenges she faces daily. I dare grieve for her, she’s here and she’s very much alive! There is a story, about this journey.
    It’s called something about Paris. I don’t remember the exact name. But, it’s spot on. I will try to find the name.

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    • Hi, I have read that many times thanks. I do not live in this place but I do visit from time to time. I celebrate my son, as you can see from other blogs, but I am also very aware of his struggles too.

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      • I know those feelings. When Ily has a seizure or when she’s a around other little one’s that will talk to her for a minute, get bored and walk away. The look on her face devastates me. She’s like… Wait, where you goin and just starts staring ahead. But, she deals with it so amazingly. Much better than I do. I guess I misspoke, I can’t say that I never have those feelings, there are days. But, my son has just embraced this journey so well and with Ily’s attitude I just don’t have them often anymore. God Bless you and I didn’t mean to sound gruff or mean at all. If I came off that way, please, forgive me. I know the struggle and the anger you feel towards the person that did this. Believe me! It’s a daily struggle for me to keep that anger and hate out of my heart.

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  5. You are grieving a child you HAVE lost. The ideal child, the one you pictured when you imaged him to be. I was blessed to have experienced both a child with typical development as well as a 23 year old daughter that is perpetually a 7 year old. Most days I feel as if I am truly blessed but I still have days of sitting in the park with tears. I promise that they will come less frequently.

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  6. Prayers for you as you grieve. I understand from a different prespective. My child is on the spectrum, but with ASPERGERS. I grieve as she struggles to make fruends and can’t quite connect. I struggle as they blow her off and leave her out. I struggle because she will be graduating, and watching her try to handle a grown up life with the thoughts and the emotions of a 10 yr old. Will she ever drive? What boss is going to have the patients to teach her. Who is going to be there for her when I am gone? Thank you for sharing it helped me too to share. I understand.

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  7. I am so sorry for your pain. God Bless you and your son. I think awareness is an issue, people never stop to think of the things you mentioned. So these thoughts, this post may benefit so many others, remembering to include your son to parties, no one can give you his voice, unless it would be a miracle from God, but being kinder, and doing better by him could be accomplished. I have no idea why this has to happen to anyone, let along a mother that has such a heart as you seem to. I do know that God put your son into the right mother’s hands, and with education, prayer, communication, and God all things are possible. I sit here holding back tears, never really thinking about some of the things you mentioned myself, and wondering if I failed to include someone in a party in my children’s younger lives. I hope not, but i am sharing this post in hopes that the knowledge may help your precious son and many others. Thank you for sharing. I hope tomorrow is better but grief is a lifetime event….you have bad days and good days, but there does not seem to be a real cure. I do not understand many things that happen in life, i try not to question God knowing eventually we will have the answers as to why, on many topics, including this one…..but I do believe even this is for a reason…..I am sorry for your pain….prayers for you and your family.

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  8. I understand we have twins both on the spectrum and one does not speak or understand the things your wrote about . All im saying is your not alone i thought it was only us who struggled. Special gifts come in ways we cant predict . We have the gifts but we have to wait wait too they unwrap them selfs x

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  9. WELCOME TO HOLLAND

    When you’re going to have a baby it’s like planning a fabulous vacation trip to Italy – after months of anticipation the big day finally arrives.
    The plane lands and the flight attendant announces “Welcome to Holland”.
    Holland? You say, What do you mean Holland? I signed up for Italy, I’m supposed to be in Italy.
    All my life I’ve dreamed of going to Italy!
    But there’s been a change in the flight plan, the plane has landed in Holland, and there you must stay.
    The important thing is, they haven’t taken you to some horrible and disgusting place, it’s just a different place.
    So you must go out and buy some new guide books.
    You must learn a whole new language,
    And you will meet a whole new group of people you would never have met.
    It’s just a different place, slower paced than Italy.
    But after you have been there for a while, and you catch your breath, you begin to notice that Holland has windmills, Holland has tulips
    and Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy, and bragging about what a wonderful time they had there, and for the rest of your life you will say yes,
    That’s where I was supposed to go, that’s what I had planned,
    And the pain and the disappointment will never go away,
    because the loss of that dream is a very significant loss.

    But if you spend your life mourning the fact that you didn’t get to Italy,
    You may never be free to enjoy the very special, the very unique, and the very lovely things about, Holland.

    By Emily Kingsley.

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  10. We lost our medically fragile daughter this last January. She would have been 20 in May. Years ago I heard a story about a mother who often went to church and while crying and praying to God, She asked why. Why this, why that? As the story goes… the response she received was, “you never thanked me”. I heard this story when our daughter was very young and, although I didn’t ask the same questions as this woman, the story helped me realize just how grateful I was to have her at all. I spent the remainder of her life letting her know just how grateful I was and over time she really understood all of that. But, all those landmark achievements she could have had were so secondary to me, as compared to how incredibly grateful I was to have her at all. As my daughter aged and cognition improved, I did, and still do, grieve for her sense of loss she must have felt as she became more aware. I was never really sure how much she understood but I tried to give her the benefit of the doubt as often as I could. Now that she is gone I can see that all those “losses” were really a blessing in that she, like it or not, lived a perfect life…..

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    • Prayers for you and your family as you struggle to come to terms with the loss of your beautiful special daughter. What wonderful words you have written. They resonate with me as I have an 11 year old son with Downs Syndrome and autism who is in remission from epilepsy. He is totally non verbal but communication is gradually improving as he is occasionally using more meaningful signs (he has mastered ice cream and coca cola and uses them regularly!) Yes I have the very occasional sad moment thinking of what might have been, but he brings such vibrance and joy to our family and all those he comes into contact with in life that these never last for long. He is who he is and we are who we are! He has never known what it’s like to be anyone else! Sometimes it’s hard to remember that. We celebrate every small step in his development and look forward to the future seeing what he will achieve. We thank God he is here with us and couldn’t imagine life without him. I will continue to keep your daughter and your family in my thoughts and prayers especially during this difficult time.

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  11. I too have a son I haven’t lost. My husband and I adopted our son officially on 3/31/16. Your story touched on so many of the same feelings I have. My son was a victim of shaken baby syndrome at the tender age of only 3 months old. But I do hold some very bitter feelings toward his bio so called parents. My family has been with him since birth and did not see this coming. He is now 2 1/2 yrs old and had made great strides ( micro baby steps as my husband affectionately calls them). I see other children his age doing everything he should be doingand my heart pains for him. I wish I could turn back time and give him the chance he never got. He is my heart and soul. He is just as much a part of me as my other 4 kids. Thank you so much for summing up what I and so many others feel. You really touched my heart. God bless.

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  12. Beautifully written & expressed. I feel the exact same way & my son is neatly twice the age of yours. I still yearn to know what his voice would sound like, what kind of car he would like if he was learning to drive like most peers his age, what type of girl he would have a crush on, whether he’d be thinking of going to College or getting a job in the next few years,…the list goes on & on. The grief is always there, ever-changing based on what stage of growing up he should be in.

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  13. Thank u for posting this u r not alone. I grieve for my grandson and the things he will not get to do as well. I have cried until there r no more tears to cry. I sympathize with ur pain. It has helped me live each day loving him a bit more enjoying the things he can do now. God only knows his path and will be with him every step of the way. I pray others enjoy each day as a blessing. I have morned, cried, but laughed and loved most of all am blessed by this wonderful soul God is allowing us to enjoy for a season.

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  14. You have spoken this beautifully!!!
    I share some of the same emotions you are facing, I dreamed and waited my whole life to have a baby, even left my husband because I KNEW I was supposed to be a mother! S, it FINALLY happened, without really even trying, I was pregnant!! Honestly, it took me the ENTIRE 9 months to really just wrap my brain around it! Mother’s, that were friends of mine, told me, to expect to get frustrated, during the late nights. But, when she came, the nigh times were my favorite because I had her all to myself, but, then, eight days later, the unthinkable happened, with no warning, or symptoms, but I suffered a terrible stroke, the more awake I became, the more questions I would ask(my left side, I lost! There will be no more holding her, or even able to feed her! On way too many drugs to breast feed her! Because, I lost choices when this happened and I lost my precious, sweet baby, who is now9 months old!!! But, other people took care of her, which took my joy!! So, yeah, I seriously cannot handle hearing mother’s complain about their babies crying all of the time! It’s not really their fault, they haven’t really suffered enough to truly understand! I’m praying for u tonight and please pray for me as well! I think we just need healing and in time, we will find it.

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  15. This is me for so many years…..everything about this fits. Some how i find some comfort in knowing i am not alone or crazy for feeling this way. Thank You ♡♡

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  16. I completely understand, I have a 17 1/2 years old who is much like a baby too. I greave for the milestones he will never meet, wonder who he might have been. Alive, but not the same way as his siblings.

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  17. Even having a best friend who has a child with ‘special needs’; none of of this ever occurred to to me. I know of the struggles she went through especially after her husband walked out on her for their female minister; but never the grief for the aspects of her daughters childhood that she lost. Please think about your friends and their children and this aspect of grief they suffer that you probably haven’t thought of before.

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  18. I too have friends, and family members who have “special needs” children. As a mother it breaks my heart to think of the things other parents will miss. I too have cried with my friends in this regard. I may not be able to sympathize, but I have compassion and humanity. I feel emotions of a Mother, a Woman, A HUMAN. I have the utmost respect and admiration for all of the parents out there going through this…. you are brave, and strong and I’m sure that with each milestone your child and/or children do accomplish you will cherish them always. My love, respect and admiration to all of you.

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  19. I felt this way when my son was little. And I totally understand. It was so difficult to watch and enjoy my nephews and friends’ children. But, now, Jack is just Jack. I neither feel sorry for myself nor do I feel especially “blessed” to have a disabled child. What I find remarkable is how inclusive his school and classmates are. I notice how unremarkable tube-feeding and seizures are to his friends. He can’t talk or walk, but they talk to him and they push his chair around. He’s just one of the gang, and that reminds me that, yes, my child is special, but he’s not THAT special. 🙂 And I love that. Moral of the story: move on from grief. Move on from self-pity.

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      • I am not sure mothers, such as ourselves, will ever move on from grief. It just changes as the child matures and there are new things that they will never experience. Talking, potty training, driving, going to college, having friends, etc. I do not think self-pity is the issue.

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  20. I understand completely how you feel, my 14 year old daughter is very similar, although she is 14 years of age in body she is unable to move past being a 6 week old in every other aspects. My daughter is now coming to her end of life.

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  21. My story is related but very different at the same time. I am the oldest of 7 children. My mom had 4 boys after me and finally a set of twin girls. All of us were born approximately between 1 year and 2 years apart. Most of my siblings are “normal” working adults; are earning a decent living have family’s and full lives. All but my youngest sister( a sister I was particularly close to) had a nervous break down – the first year of College. This resulted in her dropping of school. The in- between years were devastating in which she spent a lot of her time in Mental hospitals. Early on, after much time in mental institutions and many failures, she was “stabilized” by psychotropic medications. For an extended time she worked in a family business with lots of support and resources spent – in every sense of the word. During this time she developed a compromised immune system illness associated with the psychotropic medication. The same medication she relied on to keep her more or less functional. She almost died but the ordeal ended in a yet another hospitalization in a Mental ward to find another medical solution. This has been a constant source of stress for our family and at times has threatened to drive us apart.
    She has slowly but surely lost her will to achieve anything close to a fulfilled life. At 47 years old she has had a life of deprivation, heartache, unspeakable frustration and grief. Now 17 years after her initial breakdown she lives in a home with about 40 other handicapped adults. She has never accepted the primary diagnosis of schizophrenia, which is a fairly typical aspect of the disease. She has never found peace or direction. I have, only recently, been able to spend time with her without feeling on the verge of breaking into tears of guilt and despair. I now shed these tears in private.These tears are for the sister I had ,for almost 20 years, and then lost. I feel your sadness and think I understand the anger and grief.

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  22. I am in the same place you are, except it’s my daughter. I agree with you completely, I could have written this. I don’t know your son’s situation but I’ll say that things do change, however slight. Take great pride in your son, you have learned to love him and understand him on a nonverbal level- that is so valuable. I get your fierce love for your son and the need / hope that others will see his worth. Thank you for writing this, you’re not alone in this.

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  23. I so understand your grief journey. We have a beautiful special needs daughter Mary Kathleen, who was born with a brain malformation, who could never walk or talk was also too ba special needs daughter Mary Kathleen, who was born with a brain malformation, who could never walk or talk was also tüber feed. I also grieved like you, but I live each day and such joy just being able to take care of Mary and love her the way she was. She gave me an immense amount of love back if she depended on me for everything during her daily routine. Unfortunately the Lord took her six years ago September 11. And this is a new journey I’ve begun. We all have journeys and different challenges along the way, just know that you are very blessed by a wonderful Lord who gave you your beautiful son. We are both so blessed

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  24. You have given words to my feelings. It hurts so bad when they are small and not thriving like others, especially when they can’t participate in playtime with other kids.
    The being excluded hurts, the only good thing is that they don’t understand what is happening.
    I have learned so much being mom to 2 of these young men. They have taught me to be more compassionate and accepting. Their laugh and sense of humor warms my heart. It’s not a journey I would have chosen, but God has a plan for them and for us as parents. I know one day I will understand why I was chosen to be their mom. I just pray they remain happy and safe.

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  25. Pingback: "Grieving for a child I haven't lost" at CCG Pediatric Blog - Health Care Associates & Community Care Givers

  26. I used to have these same feelings of grief. My son has autism, with limited communication skills. He is 13 now, and we both have come a long way. I learned to accept him just the way he is. The autism is just a small part of who he is, and he is so much more. A beautiful boy, who is sweet, genuine to the core, and amazing in every way. One day it hit me. I love him the way he is, and I wound not want to change a thing. With that thought I stoped grieving. Sure I worry about his future, but all parents do. Sure I wish things could be easier, but they could always be worse. The boy I love would be lost if he lost his autism, he would be a different boy. In time you will find peace. I wish you and your boy the best❤

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  27. Couldn’t have said it better! No words have ever been more true…my son is 4 and the grief is still there from time to time. He’s awesome and I would never change him but the grief is major at times. Some days I pretend we are normal. Other days we barely survive! Good luck to u and your precious child!

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  28. As I read this, I weeped. I am the start of this GDD journey with my second born son beinfbonly 7.5 months old and not meeting many milestones either. Sometimes the immensity of it all is so overwhelming I feel scared and alone. Other times, I am ok and able to tackle the world. We need more support groups out there. Thank you for being so open, so raw and so candid. Much love to you xo

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  29. I understand your pain and share your grief. I have also read that as parents we should celebrate more and not dwell on the negatives ‘at least you have a child’. But none of that can take away the feelings you have and may always have to some extent. I don’t want Amsterdam, I want Paris; that doesn’t stop me loving my son, I just want him and me to have an easier life. Well done for speaking up, it’s not easy when there are so many judgemental people around x

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