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Mourning My Disabled Daughter


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I lost my 21 year old daughter on June 29/07. She died unexpectedly in her sleep due to a complication of epilepsy, although she didn't have a seizure. In life she had severe cerebral palsy - fully dependent and non-verbal. Very intelligent and personable and touched so many people - over 300 came to her funeral. My career for the last 21 years has been taking care of her and organizing her life - advocating for services and funding, hiring and training workers, lobbying, creating programs, etc. not to mention the time I spent one on one with her doing mother-daughter stuff. With her gone, I'm not only mourning her and missing her but also feel very lost. I have no idea what to do with my life now. I feel like I'm facing an enormous void when I think of the future. I was so strong with her - could (and did) face anything. I never realized how I defined myself through her. Now I feel weak and dependent and afraid. I went to the grocery store by myself today and that was an accomplishment.

I feel great joy for her in her freedom - she's running on strong legs, talking a blue streak and is so happy. I can't help but rejoice for her. But for me - such emptiness. My husband and 2 sons are very supportive but don't really understand how lost I feel. I know it's only been 3 weeks and I'm just coming out of shock. Time will pass and I'll find my way. But right now, life looks very scary to me. [attachmentid=139]

Ellen

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My dear Ellen,

I know that you feel lost, afraid, and empty right now, but you have managed to find your way to a very special place, and we will walk beside you on the difficult road that lies ahead. You have our deepest sympathy for the loss of your beloved daughter. The picture you've included is beautiful, and your baby looks so completely happy and safe in your loving arms. Please tell us her name, and everything that is special about her . . .

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Thank you Marty. I didn't realize I hadn't told you all her name. Her name was Kate, short for Katherine but we never called her that except when she was in trouble. :-) Kate was a teacher in life here - she taught people how to see past the surface and how to give and receive unconditional love. I knew that while she was here - I used to say she shone and she did. She had a big reach - much bigger than I had realized while she was here. I'm astonished at how many people have been affected by her death. In life, she was a shopaholic - could have lived at the mall! She loved clothes, boys, doing crafts, fishing, sailing, swimming, makeovers, being read to, giggling with girlfriends, Bailey's Irish Cream and cheesecake. :-) Her workers became her friends, in addition to the other friends she had. They just would get...hooked and the professional boundaries would be smashed - time and time again. My Kate was a powerful soul and still is.

For me, I feel more like I've lost my Siamese twin than my daughter. In some ways I feel like a child who has lost a parent. And yet still like a parent who has lost a child too. All at the same time. We were so connected - it feels like she's been physically ripped apart from me.

At the same time, there is a rightness to this that I'm so aware of. I know deep inside that her death is as it's supposed to be. I have no feeling of 'why?' or any anger over it. Deep sadness combined with my joy for her. But I know that her work here was done and it was time for her to go - it was all pre-planned. I always knew I would lose her someday, although she was never unhealthy or frail and medically she was expected to have a normal lifespan. I just...knew. And I knew it would be in her 20s although as they approached I started denyng that and thinking maybe her 40s. So I accept that this is the way it's supposed to be. And I have to move forward and do something productive and meaningful with the rest of my life - not yet though.

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Dear Ellen,

I am so very sorry of your loss of your beloved Kate. She sounds like she was indeed fearless and was here to teach us some beautiful life lessons. she looked so happy in your arms in the pool! Marty's right...we're all here to help you and lend an ear. When my mom passed away last October, I felt as if I lost one of my body parts. In her later years, I felt defined as "Mae's daughter from California". She lived back east and whenever I would visit her, which was very often when she became elderly, she would always refer to me as that when introducing me to anybody. The people in her senior apartment complex always refered to me like I was so special (which I am not) coming in from California and helping my brothers that lived in town by taking mom to her big doctor appts., etc. I will always be that daughter that flew in to be with my mom whenever I could and I will always remember how proud my mom was of me for just being me. I KNOW Kate was so very proud to have a helpful, caring mother like you! I also know that you are so proud to be defined as Kates' mom. We share the same genetics as them, so in part, we really have lost part of ourselves. It's hard.

You seem like you have a positive outlook regarding how you see her now; running around and talking up a blue streak! I know you're right!

Give yourself lots of time to figure out who you are now and what you plan to do. You will ALWAYS be Kates mom!!!

Take care and lots of hugs...Lori

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Ellen

So sorry about your daughter Kate. She looked like a beatiful girl. I understand about feeling lost. I lost my son Sean March 5th, 2007 due to a motorcycle accident. You feel you lose your identity. I have said I don't know how to be anyone but Sean's Mom. He was 18 it is hard, Sean was my only child. Before Sean died I worked as a aide. I was a aide to a boy who is Autistic for 5 years. I went to a vocational school with him. I know how they grab your heart. He is wonderful. I start work in the fall but Bill is 20 now and he is finished with school. He was like my second child. I just wanted to say thanks for sharing your story about Kate! See in my grief, I had forgotten how special Bill is and how much I miss him. Losing Sean turned me into a really selfish person. Grief is so hard. I am doing some better. I always say 1 step forward 3 steps back. I will keep trying and my thoughts are with you in your grief. Take care and my prayers are with you.

Dolores (forever Sean's Mom)

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I seem to be feeling a little bit less disoriented now - it's been 3 12 weeks since my sweet Kate died. I feel stronger than I did, which I guess is something. I had a terrible, terrible day last week - I think the shock finally wore off and reality hit - all sorts of physical symptoms combined with great fear and emotional pain. But since then I've felt much better - lighter.

I'm getting perspective on the role Kate played for me in life - she was my definer, my shield, my guide, my teacher. She was also my daughter, my limiter, my heart. I realized this morning that I will never feel as close to anyone here in life as I did to her - simply because of the way we were. That makes me very sad. I do have close relationships here, but that feeling of being literally part of someone else, joined at the heart, like a siamese twin - that is something I will never have again here. And that's as it should be. That was special - for her and me.

I'm so grateful to have had it though. I truly believe that we all have that on the other side but that not all of us get the chance to experience it here the way I have. I have been truly blessed.

I'm almost finished the 'business' part of Kate's stuff- notifying different government agencies, returning her health card, cancelling her bank account, etc. etc. All that's really left now are the thank you notes for those who went out of their way for us during this time. I'm reluctant to write them - not because of the 'work' involved but because I know that once I'm done, there will be nothing left to take care of around her life here and it will be truly time to move on. Oh not true - I still have to arrange for the stone to be made for her grave - I'll be starting that process tomorrow.

I truly do want to move one and at the same time don't want to lose this connection to the earthly Kate who was here. But I know that connection is no more. We are still connected, very strongly, but in a different way now. I have to let go of the past and move forward. Not forget her, I don't mean that at all. But orient myself to this new way of having her in my life. I do believe she's around me - I have no doubt of that. In a way she's able now to share more of my life than she could when she was here. I'll always miss her physical presence though. Her magic.

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Dear Ellen

You and Kate had a beautiful relationship. You were a wonderful mother to her and she the same for you. She will always be with you , i believe death can not take that away from us. My love and prayers go out to you. i pray that God will hold you in the palm of his hand and give you the strength you need. God Bless Lori

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Ellen,

I am so sorry for your loss. The way you write about your daughter is so beautiful. You two must have had the most wonderful relationship, how lucky you were to have had eachother, even for a short time.

You sound like such a loving,caring compassionate woman... when the time is right, is there a way you could take all your experience and everything you learned from your daughter and share it with others that are just starting out caring for a disabled child? A patient advocate or a volunteer somewhere.

It just seems like your journey with Kate could continue on in a whole new direction.

Just an idea. Thank you for sharing your daughter with us.

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Ellen, It sounds like Kate came by her wonderful qualities very naturally through her special mom. After all you were to each other it's only natural that you would feel lost and disoriented right now. I felt the same way after taking care of my daughter through her treatment for cancer, and that was only for 2-1/2 years. You spent a lot more time than that looking after Kate's every need. I still don't know what I am supposed to do with my life from this point, but I believe there is work left for me to do. And I'm sure you will eventually find a path that takes you forward when you are ready.

I love the way you describe your vision of Kate now. Just imagine the freedom she has that she didn't have in this earthly plane. It is comforting to know our children are no longer suffering; that burden has been shifted onto our shoulders.

Thinking of you,

Deborah

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  • 1 month later...

Kate's been gone for over 2 months now and life is settling down somewhat. I'm glad summer is over although Fall isn't much better yet. I'm feeling more like myself again - less disoriented at least some of the time. I spent so much of my time and energy with her when she was alive - because of her severe physical disabilities, my career was her - organizing her schedule, hiring and training workers, applying for various funding programs, finding a day program, lobbying, advocacy, etc. etc. on top of her physical care. 90% of my life was about her. So I'm mourning her of course but also trying to figure out, at age 50, what to do with the rest of my life. I have a freedom now that I never expected to have again. And yes, part of me is excited to have choices again. But mostly I feel overwhelmed by them. The good news is that I'm starting to have ideas of what I'd like to do with my life now. For the first month or so the future loomed like a big void. That was awful. I still think about Kate many times in a day and still break down every few days - a big improvement from every few minutes, which is where I started. When school started this week it was tough - my younger son has been around all summer. Now he's gone all day, as well as my older son and husband who are both working. It's making for long days. I'm keeping busy as best I can but I feel like I'm treading water - waiting to find the right thing to swim to.

I know Kate's free and happy and busy now. She had a wonderful life while she was here and frankly, I was a damn good mother. We were a good team. I have no regrets. Just of course wishing I could have one last hug, one last touch, one last goodbye. But one would never be enough, would it? I know I'll see her again some day. She's around me - sends me butterflies and pennies to say hello. And she's contacted me through a friend of mine who's a medium - at the beginning, not any more. And that's okay too. I don't want to spend the rest of my life waiting for messages from her nor should I. She has things to do and so do I.

So - I'm okay. Feeling much more stable than I was. Don't know yet what my 'new normal' will be but feeling more confident that eventually I'll find it and it'll feel right. In the meantime I'm doing what I can do and that has to be good enough.

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  • 2 weeks later...

Last weekend was our first extended family dinner (for Rosh Hashana) without both Kate and my sister-in-law, who died 2 months before Kate did. I was doing okay until my dad's voice cracked during his toast to 'those who aren't with us'. I had to leave the table for 10 minutes until I was cried out. But then I was okay and it actually was a pleasant evening. I'm hoping that future ones will be a bit easier now that we've gotten through the first one.

I had a session with a medium about a week and a half ago - I've been to him before - long before Kate died and I know he's genuine. Kate did come through as I'd hoped. Gave me many messages for myself and for other loved ones. It was a type of closure for me. I was able to say good bye to her. And for the first time, she was able to tell me she loves me - she was non-verbal in life and could never say it, although she showed it in many ways. What a gift to me for her to finally be able to tell me! She's busy and she's around me - I know that and am now starting to be able to let her do her thing and start doing mine. I'm a long way from 'done' and I doubt I ever will be - I'll carry her always and still break down occasionally (like last weekend). I'm only 2 1/2 months into this process. Not rushing myself but feeling like I'm moving forward and that feels good.

I finally decided what to do with myself, at least for the short term - I've signed up for a reflexology coure - to become certified to practice. I've always been interested in alternative therapies and my naturopath suggested this when I asked her where to start. I'm very excited but terrified too - haven't been in school in 27 years and this feels overwhelming. At the same time, I know I can do it.

Thanks all, for listening,

Ellen

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