Grieving a Child Gone, yet Still Here

#2For many parents, I’d almost dare to say all, Life can be categorized as “Life before Rett syndrome” and “Life after Rett syndrome”. My daughter, Katie, is 24 now. For 22.5 years I have loved the child in the “Life after Rett syndrome” and grieved the child gone from “Life  before Rett syndrome.”

Before Rett syndrome, my girl was so happy; I can still see her bouncing her little diapered bum when she threw something in the trash can, such a big, little helper. I remember her crawling on the floor, picking up my keys and going to the door and trying to unlock it-she wasn’t even 6 months old. Oh, how SMART she was. So full of giggles and laughter. She had a ring of plastic beads and I’d say “Pretty Princess” and she would put it on her head like a crown. And, when I’d say “What does a dinosaur say?”…she’d roar the cutest little roar ever. Even remembering it now, all these years later, the tears are streaming down my face. My sweet, baby girl, stolen from me by Rett syndrome.

And how can you explain to someone when you are crying for your child that is still right beside you, that your pain is so great. It’s not just that your child was taken, it’s that you feel like your child is trying to reach you, to find YOU, to be back, too. And neither of you can make it happen. It’s a knife in the heart.

Life before Rett syndrome held dreams that were not only possible but probable. You held your sweet, perfect baby and saw sports teams and trophies, a first kiss, first love, the prom, a wedding, a baby for them. You saw pictures on your refrigerator, snuggles in bed and tickle fights, you saw a time when Barney and Sesame Street would one day move the heck on out of your house. You saw an end to diapers and mounds of laundry, and all those planned endings would just be the start of new beginnings. And the thief that stole your child, stole all that away, too.

And there you are-left to cradle a living child and grieving for all that was now dead to you. Grief gets easier to bear, except when you see children on a playground climbing up a slide and your child can no longer walk; it’s easier to bear until you are holding your daughter or son in bed cuddling…after a seizure; it’s easier to bear until prom comes along and no handsome young man is going to ask your girl to her first dance or your son is not pulling at his necktie nervous as all hell as he knocks on his date’s door; it’s easier to bear until your younger children surpass their older sibling and help feed them, run for diapers, wipe drool from their mouth, have to defend them at school. It’s easier, until so many times it isn’t.

And those were just MY dreams. What about Katie’s dreams? I grieve for them as well. What would she have been? My girl loves space, so I imagine she would’ve been a scientist. All these could’ve beens, SHOULD’VE beens. They haunt me at times. Yes, in the Life after Rett syndrome there are amazing times. You learn to appreciate every little thing in life, a breath, a heartbeat, a new first word, laughter, hand use, a step. And you love this child fiercely, your child. This is how I know Love is supreme, because it is strong enough to exist in the conundrum of “the child I had is gone for ever, this is the child I have now and so I will love this child to my dying breath” even while suffering such a great loss.

Who Katie is now, is amazing. She is kind, empathetic, compassionate. She is part leprechaun, I say, because she is a jokester. She doesn’t care what color people are or who they love. Everything about her is pure, every emotion is real. She doesn’t have it in her to lie. She is an incredible human being; she’s brave and daring and has to fight every day to win a battle against Rett syndrome. I like to think that each fight she wins, she’s saying “I’m still here, mom, I’m trying hard to get back to you.” And, yes, in many ways I’m lucky. I have a child who will never leave me. I will always get to experience Life in a wondrous way full of small miracles, because of her. But, whether it makes sense or not, I will still always grieve.

Does it seem I am so ungrateful? That my child is alive and so what is wrong with me? I suppose it does. But, you see I am a mother who has to live with grieving a child gone, while loving the child I have and they’re both the same. I love them both, I just miss one.

This entry was posted in boys with Rett syndrome, cure, fund-raising for rett syndrome, Rett Research, Rett Syndrome, Special needs siblings, Trail to a Texas Trial and tagged , , , , , . Bookmark the permalink.

139 Responses to Grieving a Child Gone, yet Still Here

  1. mick25117 says:

    I can completely understand that and why you grieve. But be blessed that you also have had this wonderful oppurtunity to know your beautiful daughter

  2. zahir islam says:

    Wow great articles love it

  3. I love ur post, they are really impressive

  4. asimuel says:

    Powerful and real! This is a great story and I think more moms should share their true feelings and challenges that they go through. Each is different and we can all learn from one another. I appreciate your story and I have gained awareness from reading this. Thank you!

  5. PETWONE says:

    Another great read. I like it!

  6. Grief takes many forms and has many roots. You’re is as real as any other. You are walking through this with great grace and vulnerability. That transparency is a sacrifice which blesses others on a similar journey. Thank you for your generosity of heart as you share your story.

  7. Nina Louise says:

    So beautifully put, thank you.

  8. I appreciate you transparency and authenticity. However, as a mom that has walked in your shoes I still believe love bears all things. We are often measured by our failures and tossed aside by our truths even when they are not popular. Thank you for sharing. God bless you

    • melelllan says:

      I also believe love bears all things, which I say in my post…Love is supreme… it’s a hard journey, which you obviously know, without love it would be near impossible to summit the mountain. I bear no sense of failure nor do I care if I am discarded for any truth; I am only me, no more no less than anyone, and I am content with the path laid out before me.

  9. najide says:

    You are a genius.

  10. anjalisk96 says:

    That was beautiful. I am losy for words! Amazing!

  11. Wow! Beautifully written!

  12. Right until the last few paragraphs, I thought you had lost your child. Then I realised she was still with you, I understand and felt your grief the whole way through. This is tough for you, and I can’t imagine the fight every day that you have to deal with, you may like you and your daughter has been dealt a dud card. I know this is easier for me to say as I am not in your situation, but your daughter was given to you, and you are doing a great job. Your daughter is not mine, probably because I wouldn’t cope, I wouldn’t do as good as job as you are doing. Wake up every day and tell yourself it’s a new day. Make sure you get breaks and love with all your heart. Do not allow your grief to what should’ve been cloud what you have. You are doing fantastically. So many people couldn’t. Keep strong and make sure you have people around you for you. This is so important. Keep climbing mountains. Xx

  13. hkdroid says:

    I love ur post, they are really impressive

  14. From this story i just know about what is retg syndrome and make the research about it more deeper, thnk you for such worthy information. And u’re truly great mother! I hope this moment make u a strong woman,,keep loving her in ur heart

  15. Beautiful read! Thank you for sharing

  16. Pingback: Grieving a Child Gone, yet Still Here | Trail To A Texas Trial – kiullaploject

  17. Matthew Milam says:

    One of the interesting things I find about grief having just lost my mother last month is not the fact that the moment of death has passed, but what happens next? Since this is still early days for me, I literally get up wondering what the hell is it that I need to do for me.

    I imagine that is your struggle as well – how to live the child that is still here, love yourself and mostly how to move on with life while keeping your humanity (I hope that’s the right way to put it).

    • melelllan says:

      I am very sorry for you on the loss of your mother. It’s a bit different since the child I lost and still have are the one in the same, but early on it was very difficult to come to terms. It is a struggle for parents of special needs children to maintain a “self” outside of their child, esp. if they are medically complex.

    • Helen Coletti says:

      We expect to lose our parents. While it is sad it is nothing compared to the grief that is experienced daily when you have a child with Rett Syndrome. My twin sister has a granddaughter with this horrendous disease. Gone are all the hopes and dreams for that child. There will be no dance recitals, or music lessons. No Christmas pageants nor participation in plays. That once sweet voice you may have heard once or twice is forever gone. Their lives stolen away. Losing a parent is difficult but it is nothing compared to the daily death of Rett Syndrome!

  18. Thank you for putting into words the very things I have wrestled with as I have watched my daughter

  19. This is both beautiful and impactful. Thank you for having the courage to share your story.

  20. I’m literally crying right now . I’m a new mother and this just touched me so much. May you and your child have all the happiness in this world.

    • melelllan says:

      Congratulations! Thank you, we live life to the fullest we are able. We took a two month trip around the country, she LOVED Yellowstone.

  21. Enjoy Some Tea with Tee says:

    Hello mama! Being a mother myself, I can empthaize with you the hopes we have as a mother for our child. I’m always looking forward to the next milestone. As I read your story, my eyes had begun to fill with water. I can’t fathom half of what you’re going through. I should be used to it because my family and I own a day program for the development disabled. Many of our clients have severe siezures, are down syndrome, non-verbal and/or nonabumlatory. Sometimes I give tours to prospective consumers and their parents and you can see the love and concern they have for their child. Sometimes I begin to feel sad and sorrowful because though I can’t imagine half of what they go through on a daily basis, I empthaize​ as a parent. I wish I can write this and comfort you in saying that “Everything is going to be okay!” But I know that there are good days and bad days, some better than others. But I want to let you know that you’re doing a good job. You’re being the best mother than you can be to your daughter w/ Retts syndrome. Sometimes we don’t know why things happen, but as a mother- its our job each day to be the best role model, best friend, teacher, and all the above to our child. May God bless you! (-:

  22. I understand some of your pain. So beautifully written.

  23. amilah125 says:

    Woooow this is great

  24. amilah125 says:

    Am sorry for what you had to go through. It mush have been more than tough for you

  25. jamiejabber says:

    This post is raw and beautiful!

  26. Great writing… so powerful! More power to you and Katie!

  27. smithzk77 says:

    Beautiful I lost my son He is still a very big part of our life wish you lots of love and happiness God bless xxx

  28. Beautifully and powerfully described. I can relate since my mother has Alzheimer’s. It’s a strange place to navigate – grieving for someone still here. 💕

  29. Pingback: Grieving a Child Gone, yet Still Here – One Day At A Time

  30. midlifemimi says:

    These are truly beautiful words that paint a portrait of a mother’s love and devotion to her child.

  31. mungwashoe says:

    Reblogged this on mungwashoe and commented:
    Beautiful post … you could just cry whilst reading it.

  32. Beautifully said. It’s power in speaking your truth and you definitely delivered.

    • melelllan says:

      Thank you. It’s difficult to write such a truth and share it,but I swore I would write the good, bad and ugly of this disorder.

  33. I lost my sweet Arianna January 2016. She was three months old. Thanks for sharing your thoughts with us!

  34. I can’t even begin to understand what it’s like and how you feel. From an outsider’s point of view, you are not ungrateful, your thoughts and feelings are understandable. Your daughter is lucky to have you and you’re lucky to have her. You write so beautifully 🙂

  35. Thank you for having the courage to share. My heart goes out to you. My daughter is 16 months old and at 13 months starting have seizures. She has finally been stabilized on a medication for a month now, but I have a still get feelings of panic; will we have to go back to the hospital? Is this the end? Sending you love and positive vibes and some gentleness for yourself.

  36. It’s very emotional. And parents like you could understand this pain. I also have a sister who is suffering from rett syndrome and but we all have take care of these kids and be compassionate and treat them nicely. Yeah, this is heart brokening.

  37. Joan Martinez says:

    I think your article is offensive to those of us that have lost a child to death. You have no idea the complicated grief we experience. I would do anything to have my child back. You cannot even comprehend the true grief us mothers are experiencing.

    • melelllan says:

      I’m so, so sorry for the loss of your child. Life is often very complicated, as is grief. It is not meant to be offensive, but to honestly address a level of grief many people share. I wish with all my heart you did not have the experience do see it from the perspective that you are. My deepest condolences.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s