living with loss

My mother passed away from scleroderma almost 4 years ago. She was diagnosed when I was 3. I never knew what a healthy mom was like. The older I got, the more sick she got. I took on a lot of responsibilities and tried balancing cooking, cleaning, homework, going out with friends, etc. By the time I reached 18 my mother really started to decline. She couldn't breathe very well and any activity totally exhausted her. I had come to the realization that she would never see me get married or have children. After 18, 21 came around quickly. At this point she was in a wheel chair and couldn't walk 3 feet without being completely out of breath.
At the age 23, after a slow drawn out hospital stay that was horrible for us to watch and her to go through, she left us, she was 50. My world came down and the one person I needed most in this world was gone. I was right...she wouldn't be here to see me get married or have children. I didn't know what to do, I was broken, I was angry.
Since then I got married and had a daughter of my own. Since birth she has been the most pleasant baby, so pleasant in fact that people are always in disbelief that she is always so mild tempered and calm...but she is. My mom gave me the best gift any one could give me. She gave my daughter everything that was good in her. I now get to wake up everyday and not only see my daughter, but I get to see my mother too!
I hope that this little blurb offers some comfort to some one. I know the road you may be traveling on isn't easy and it won't get easier quickly. Little by little you will heal and things that you never thought you'd feel again will come back.
All of my love and support - Melissa

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Um, sorry,this post doesn't make me "feel" better.....

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Then you missed the point. Sorry

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I am glad that you are feeling joy again. I know your mother is glad as well. Illness reaches far beyond the sick person. It sounds like you are deeply grateful for your family, and your child is, and is receiving, a blessing through your gratitude.

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Melissa,
Thanks for sharing this story about your Mom. It touched me since I got sick with scleroderma within weeks of having my first child.
It pains me deeply to not be the kind of Mom I want to be. My children who are now 19 and 16 have limited understanding, but seem to gain more insight with their age. I appear much healthier than I feel.

You have taken the energy of your loss and grief and directed it toward being the parent your Mom was not able to be for you.
I think you're right, there's some of your Mom in your daughter (of course). Life constantly changes, renews, cycles. And you are there to nurture and appreciate the gifts as well as experience the pain.

Thanks.

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I am 51 years old. One of my greatest fears is how destructive my passing will be on my kids. I’m glad you know that we continue on through our children. We pass so much along and passing along the best in ourselves that we can give, helps for a better world.

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Thank you for your post. It is sad, but comforting to know that the people who take care of us will recover from the damage this disease has done to their lives also. God bless you and your beautiful baby.

I lost my Mom thirty years ago and I still miss her but know that she is enjoying watching my life unfold.

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Evalive...The thing that I find amazing about mother's is that they always push through as if nothing is wrong. I was pretty young when I came to grips with the disease, but my brother was in a bit of denial. Either way we both came out of everything okay. My mom used to feel guilty about not being able to do things with us too. Please don't let that be something you hang over your own head. Your kids know that if you had the strength and energy you would do more. You are a BEAUTIFUL person and I'm sure a great mom. I'm here anytime you need to talk about what your kids may be going through. Love and strength to you and your family xoxo

ljt... I didn't know what it may have felt like for my mom knowing that things weren't going to turn out well until I had a child of my own. I can't imagine what all of you go through as parents, worrying about whether or not we will be okay. I think that it shows such selflessness. Try to focus on now and not what may be in the future. Love and strength to you and your family xoxo

Maggimay... I think taking care of a sick loved one is a blessing to us in many ways. It makes you focus on what's really important and not all the little things that can go wrong in life. I learned so much from my mom just from laying in bed with her watching tv and talking. I'm sorry about your mom and I'm sure she is happy about the person you've become. Love and strength to you and yours xoxo

Thank you all for your kind words. I'm glad you see that I had to tell you about the sad parts to tell you about the happy part. You will all be in my prayers and I wish nothing but the best for you and your families. I'm here to talk if ever you need some one to listen.

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Melissa--Thank you so much for your post! Sometimes I get a bit scared and wonder if I'll be around long enough to watch my 10 year old son grow up but then I pull it together and tell myself that I am going to get every last breath out of this life that I came here for and this disease is not going to get the better of me. I'm going to make even everyday moments count, because those are the ones that I seem to remember the most from my childhood--lots of laughter and lots of love. Thanks again, for the inspiration. peace and love--jopinky

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jopinky... You're so welcome. I'm so happy that this post turned out the way I was hoping. I didn't want it to scare any of the people living with this disease, I wanted it to be something to give you a little hope that even if the worst comes your way, it will be okay. Take advantage of every good day that you have to be active with your son and on the days that you don't have so much energy...watch movies and eat popcorn :)
I wish nothing but the best for you and your family Jo...enjoy your son and all the adventures you have together xoxo

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There are no guarantees in life. People die and that's a fact of life. We never know what is going to happen whether it be because of Scleroderma or get killed in an accident. We should all enjoy the time we have as much as possible. Everyone's days are numbered.

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Dear Melriale1,

Thank you very much for your post! Sorry for your loss :( . I really appreciate the fact, that you no loger have mom in this world and yet you still think about all the others human being living with this terrible disease like me. Thank you. I have a 13 years old daughter and a 10 years old son who are my life. I of course after God I adored them and It kills me to think that one day mom will be gone and know for a fact that no one will treat them like I do ,make me really sad. Althought I have to say that your lovely mom has to be very proud you. Best wishises for you and your family and thank you.

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Emma02... Thank you for your kind words. I have never stopped thinking about all of the other people that are still here suffering with this disease everyday. It pains me when I think of all the other kids that are going through the same confusing and frustrating time that I went through and it kills me even more when I hear of kids losing their parent at an even earlier age than I lost my own. You are all so special to me because you are some of the strongest people out there, you never give up hope in finding a treatment and a cure. I will always stand behind all of you. I participate in the NYC Steping Out for Scleroderma walk every summer and fundraise for the event. Just because I lost my mom doesn't mean I should lose hope and turn my back on the rest of you. Much love to you and your family xoxo

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My Scleroderma is pretty advance. We already had the death talk with my adult children. My grandchildren are still too young to understand. I already divided all my good jewelry among my daughter, daughter-in-laws and for my grand daughter when she becomes an adult. My Mom used to say, 'Everything that is born, must die. God's rule." My hubby is a wonderful man, tall, handsome, highly educated. I saved my diamond engagement ring for him to give to the next wonderful woman he will meet. I don't want him to be alone.

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Sleepless... I think it's a beautiful thing for you to save your ring for your husband to give to some one else should he meet some one that he wants to be with. It's a very selfless thing for you to do and I'm sure it pained you to do so. I'm sorry that it has come to that for you. I know it isn't easy having that conversation with your kids as it wasn't easy for my parents to have with my brother and I. I'm sure it was very emotional but it's good to do because everyone will say and do what they feel they have to before it's too late. You will be in my thoughts and prayers always xoxo

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