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    Sharing my angel

    Good morning everyone! My name is Tracy. I was an old regular years ago on the child neurology forum. I lost all my information and have been gone a long time. I am a mom to three beautiful children. Our oldest son is married and we have a beautiful granddaughter. Our youngest son is in high school. Our beautiful daughter, Megan went home to be with Jesus August 18, 2015. Our sweet angel was our life. When I have more time, I will tell you our full story. Just wanted to stop by and introduce myself. Yesterday was our angels birthday in heaven. Thought I would share my thoughts for her birthday. All my love and prayers to all of you.
    Tracy
    According to Webster’s Dictionary, the definition of birthday is: the anniversary of the day on which a person was born, typically treated as an occasion for celebration and the giving of gifts.
    Today October 11th our angel in heaven is 23 years old. We have “celebrated” three birthdays without her on this earth. She has only been gone 2 years, but she went home about 7 weeks before her 21st birthday. I can’t really say “celebrated” is the right word. When you can’t physically hug your child or go out and buy your child that special gift, or have the cake and all the joy that a birthday brings, celebrate takes on a completely different meaning.
    For me, the day will be bittersweet. It will be a day remembering the day she was born. The day she wasn’t expected to live at all. The day we had to make the decision to take her off life support. The day we gathered around her hospital crib and had her baptized and said our goodbyes. A time of triumph leaving the NICU with our baby girl. Gods plan. Gods WILL. Her strength. Her beauty. Her pure soul. Her perfection. Her courage. Her struggles. Her laugh. Her smell. Her strength. Her hair. Her eyes. Cute little toes and button nose. Her smile, they said she would never give.
    It will be a day full of memories. Happy and sad. Gratefulness and blessings. Unfairness and anger.
    A mother wants her child in her arms. To kiss and to hug. To pamper and love. To smell her one more time. To see her eyes shine. To hear her giggle. To just sit back and watch her while she sleeps. So peaceful. To walk in her room and sing “good morning to you”, to kiss her forehead and put her to bed. To stub my toe on the wheelchair. ( Boy did I do that many times). To hear the oxygen machine running at night. Checking the monitor and seeing her sleeping so sound. To make her special foods. To give her a bath and have our spa days. Unfortunately, these have all went away.
    The pain changes over time. It never goes away. It will always be there deep inside tucked away. Unless your child is gone, there are no words to describe this kind of pain or loss. Nothing compares. I pray hard, no other parents have to walk this path. It has a devastating aftermath. No clichés are needed, like she’s in a better place. You see, I know that. It is just a hard fact to embrace. I do find great comfort in knowing she is dancing with Jesus in heaven again this year. But the mom in me, still wants my baby here.
    We will go to the cemetery with 23 purple balloons in tow. We will sing “Happy Birthday”, and shed tears and wish you were here to celebrate with presents and bows.
    God called you home. His plan is bigger, and grander than I can even imagine. My dear angel in heaven above, watch for the balloons heading heaven bound. They are filled with all of our hugs and love from home. Go run my dear and blow out those candles and celebrate with our Father. I hope you can hear mommy singing Happy Birthday my dear daughter.
    To everyone reading this, go kiss your children. Let them know how much you love them. Tomorrow is not promised. Live, laugh, love, forgive, forget, be happy, eat the cake, drink the wine, act goofy, be passionate, gracious, kind, giving, receiving. Love yourself. Love others. Let go of the drama and bull****. Life is too short!! Be the best you, you can be. Live for you and your children and grandchildren. Call your parents or grandparents, remember all they have done to get you where you are today. Help out a neighbor, a co worker, a stranger. In honor of our Meggie’s 23rd birthday today, do something nice for someone else. Then thank God for all the blessings you have in your life. I know, I'll be on my knees giving glory to the Lord for all that he has given me. Hugs

    #2
    Hi Tracy, and welcome back. I'm sorry I don't remember you but that was because I've mainly been posting on the MS board.

    I'm so sorry about your loss. The memories are still fresh and still painful, I'm sure.

    My daughter was 27 when she died suddenly (a ruptured brain aneurysm) in 1995, and I still miss and grieve for her, and so do her father and brother and her friends. I try not to think about what might have been. It's just too sad.

    I hope that time will help by pushing the raw experience of losing your daughter farther into the past. It never goes away, though, and your advice about treasuring what you have left is important for everyone to think about.
    Last edited by agate; 10-14-2017, 07:18 AM.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

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      #3
      ((((((Tracy)))))) ~

      It's wonderful to see you here again. Thank you so much for sharing your beautiful tribute to Megan.

      You describe perfectly the depth of parental grieving, which is like no other grief we experience in our Earthly lives. Losing our child defies the nature of the circle of life. I think it is universally recognized as the worst thing that can happen to a person. That is why it is incomparable to other losses.

      Two years into your grief journey, and it's all still new and unbelievable sometimes. In my experience, and in the experiences of the many grieving parents I've met on line, the second year is often more difficult than the first, because this is when reality sets in and that carries its own shock to our beings. This is the time when we begin to accept, adapt and adjust, which is a lengthy process.

      Tracy, you have made so much progress on your grief journey, I feel, because you have channeled your grief into positive, life-affirming action. I hope that you will share here some of the many things you have done in Megan's memory to help others.

      And I know that Meggie's garden comforts you. Every day, I am comforted by Michael's garden and waterfall/pond. And it is a sacred place, where we honor him and treasure our memories of him.

      Life is fleeting and fragile for all of us. Thank you for encouraging us to embrace life and express love.

      When I count my blessings, you, and all of our CN/BT family, are on my list.

      Sending healing prayers for peace and comfort to you ~

      Love & Light,

      Rose
      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

      Comment


        #4
        ((((((agate)))))) ~

        Joan, I am so very sorry for your loss of your daughter. So young and so sudden. Did you have a support system? Friends, who understood, with whom you could share your grief?

        I'm grateful for the internet, because I found support groups to help me through the most difficult years. The first support group I found was right here.

        I do think that this is beneficial to grieving parents, because it helps us to know that we aren't alone in our experiences, feelings, thoughts, fears, sorrow. I have met so many grieving parents on line, who have said that they thought they were losing their minds, until they met other grieving parents, who felt the same way. Then, we all realized that this is part of the journey of being in the exclusive club, which no one wants to join.

        We don't "get over it." We never "get over it." We can do our best to find coping tools, to move forward, to be at peace with our grief. I have found that sharing our grief journeys has helped me immensely. And, it has helped to prepare me for the future.

        As always, I'm keeping you in my prayers and sending you healing energy ~

        Love & Light,

        Rose
        Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

        Comment


          #5
          The friends and family who clustered around at the time were perfectly amazing. Even though this happened at Christmas, people were very helpful, especially one of my daughter's friends who organized the memorial service--and helped to find my daughter's cat, who had escaped during the chaos.

          That whole experience is a blur to me though I may have had a foreknowledge that my memory might blot out the time because I wrote down a detailed account of the time of her death--who did what and when in connection with finding out what had happened and why she didn't show up on that Christmas Eve when her brother and I were waiting for her.

          The police, the fire department, her fiance and his family were all involved until she was found, and at 4 AM on Christmas morning I had the call I'll never forget because it was so unreal that for an entire day I refused to believe it--a call from the medical examiner telling me that she'd been found dead in her apartment.

          There would be several days before we knew the cause of death. An autopsy couldn't be done over the long holiday weekend. But we were assured that it was probably a death due to natural causes.

          Who dies of natural causes at a healthy 27 years? A brain aneurysm never occurred to me. I was almost sure that her nut allergy was responsible.

          I couldn't have got through that terrible time without the people who helped. Her fiance's mother and sister, my son and his dad, and my daughter's friends were amazing. And for people to travel across the country to go to a memorial service on the day after New Year's as some did--that was astonishing.

          The world is full of quietly amazing people.

          Her fiance fell apart and spent a few days in a hospital but pulled himself together in time for the service and delivered a beautiful tribute to her. We stayed in touch for years (I still communicate with his mother). He went on to marry and have a child and the family is still together. I'm so glad that he was able to move on.
          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

          Comment


            #6
            ((((((agate)))))) ~

            Oh, Joan, I am so very sorry. How traumatic for you, and on Christmas Day, of all days. Not that there is ever a "good" day to lose a child, but the holidays just magnify the pain. And that call that every parent dreads is wrenching. You must have been overwhelmed with shock. Your beautiful daughter, so young, and so apparently healthy. ((((((Joan))))))

            In conversations with grieving parents through the years, who lost their children suddenly and unexpectedly, as you have, I've often said that I think that must be so much more difficult than my experience. I knew Michael was dying, and Jim and I were able to be with him when he passed. We were prepared; in fact, I've been preparing to lose my children since they were infants.

            How wonderful that you had a strong, loving support group to shore you up. Many parents find that their friends and family don't know how to help them, or say the wrong thing, or expect them to bounce back quickly. You were blessed with family and friends, who understood and shared your pain. That is vital to healing our broken hearts.

            I used to remember vividly every detail of every moment of Michael's final illness. Now, I remember some things, like a "highlights reel" in my mind. A thin veil is cast over those memories to ease the pain of remembering them. They remain, but we don't have to stare at their starkness.

            Staying connected with your daughter's fiance's mother is a special bond for you, I imagine. I think it's wonderful that you have this connection with her. And I'm sure that your daughter would want her fiance to marry and have a family and be happy. This what we all want for the ones we love.

            I'm thinking of you, Joan. Thank you for sharing with us ~

            Love & Light,



            Rose
            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

            Comment


              #7
              Thank you for the kind words, Rose. Nowadays, with friends and family dying at an alarmingly rapid rate, there are fewer people in my life, and feel the loss of my daughter more than in a while.

              But I do realize how lucky I've been to have had a healthy daughter for those 27 years.

              Tracy, your loss is still recent--only two years ago. Do the rest of your family seem to want to talk about Megan, or not?
              Last edited by agate; 10-15-2017, 08:32 AM.
              SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

              Comment


                #8
                Joan,

                Most of our family is really great about talking about Megan. My husband, sons, daughter in law, mom, dad and some siblings will talk about her. Others not so much. I think unless you walk this journey, you can not begin to imagine the pain. You don't just get over it after a short time. I agree, Rose that the 2nd year has been harder. Like you said, reality has set in and you feel many people have the idea of " She was sick, disabled etc, and she is better off" Sometimes, I have a problem with the attitude of because of her medical issues etc, losing her was somehow less, than a parent who lost a child to an accident, suicide etc. I have written a couple other stories, I will have to share in regards to this. Love to you, Joan and Rose.

                Comment


                  #9
                  Originally posted by myangel94 View Post
                  Joan,

                  Most of our family is really great about talking about Megan. My husband, sons, daughter in law, mom, dad and some siblings will talk about her. Others not so much. I think unless you walk this journey, you can not begin to imagine the pain. You don't just get over it after a short time. I agree, Rose that the 2nd year has been harder. Like you said, reality has set in and you feel many people have the idea of " She was sick, disabled etc, and she is better off" Sometimes, I have a problem with the attitude of because of her medical issues etc, losing her was somehow less, than a parent who lost a child to an accident, suicide etc. I have written a couple other stories, I will have to share in regards to this. Love to you, Joan and Rose.
                  I hope nobody is saying or even thinking that she is "better off." I've heard people say this about someone who has died, and it seems cruel to me.

                  Even when someone said to me, "She's at peace now," I wanted to say, "But I didn't want her to be 'at peace' and she didn't want to be 'at peace.' Maybe 'at peace' while alive but at least open to everything life has to offer, even if some of it isn't 'peace.' "

                  I don't know if this has happened to others but I've become aware of how many people there are who have lost children--children at all ages and for all kinds of different reasons. I moved to this apartment building 8 years ago and have found out about several neighbors who lost children, either some years ago or since moving here.

                  Knowing how common it is doesn't make it any easier, maybe, but knowing you're not totally alone might help.
                  Last edited by agate; 10-15-2017, 11:56 AM.
                  SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

                  Comment


                    #10
                    Originally posted by myangel94 View Post
                    Joan,

                    Most of our family is really great about talking about Megan. My husband, sons, daughter in law, mom, dad and some siblings will talk about her. Others not so much. I think unless you walk this journey, you can not begin to imagine the pain. You don't just get over it after a short time. I agree, Rose that the 2nd year has been harder. Like you said, reality has set in and you feel many people have the idea of " She was sick, disabled etc, and she is better off" Sometimes, I have a problem with the attitude of because of her medical issues etc, losing her was somehow less, than a parent who lost a child to an accident, suicide etc. I have written a couple other stories, I will have to share in regards to this. Love to you, Joan and Rose.
                    Welcome back to the forum. Thank you for sharing your daughter's story with us. I have always had an issue with "so and so is better off now" because I see every life as precious and worth protecting regardless of disability, age etc. Disabled lives are so often devalued so please don't let people devalue your daughter by saying that. I know people who say that mean well but it still makes disabled seem like less. I will pray for you and your family.
                    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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