1). If you could describe your life now in one word, what word would you choose and why? Disbelief. I lost my son Tyrone to Spinal Muscular Atrophy (SMA) four days prior his 4th birthday. Life with him was joyful as he was highly intelligent and lovable and very aware of everything that was going on around and with him. During treatments and when he got sick, life was a struggle and I always became the oldest patient in the pediatric unit as I was 24/7 with him even when the hospitalization lasted longer than a month at a single time. I had two other little girls at home, so life was difficult.
I never imagined that one day 32 years later, my youngest daughter, while pregnant with her first child would have to endure the agony of losing her baby at 36 weeks pregnant.
We all thought SMA probably played a role on losing Arabella, however, to our surprise, she was perfectly healthy and it was concluded that the cause of death was due to placenta separation. It was a relief that SMA was not to blame. However, we never heard about the placenta separating without giving warning to the mother such as bleeding and/or pain. My daughter was perfectly fine and only realized one day that the baby did not move at the precise time she was moving daily.
I was in a trance for longer than a month and I find myself almost every day to this date just thinking what went wrong and how God could had allowed this to happen again.
2). What’s one way you wish your family/friends would have supported you in the first couple years post-loss?
When I lost Tyrone, the family was more or less normal – or at least what I considered normal back then. They were surprised to see me talking about Tyrone normally and visiting his headstone frequently but I could feel they were uncomfortable and perhaps thought I was crazy.
Now with Arabella, I am very disappointed to see close family members– and friends even– disappearing from our lives. They do not call, visit, or even like our Facebook posts. Coming from some of them I do not care, but from others…it really hurts. On Mother’s Day some family and friends called to wish me and my oldest daughter ‘Happy Mother’s Day’ but ignored my youngest daughter. (As if it makes my daughter less of a mother because Arabella is not physically with us.)
5). How have you integrated the loss of your child into your everyday life? I consider both of them part of the family and their pictures are everywhere around the house. So to answer your question, they are integrated in our lives.
6). Describe a day in your life now. What is it like to be *you* today? What does it feel like, look like, and taste like? It is getting better now but when I cannot go to Arabella’s headstone in a week, I feel very uncomfortable.
Tyrone’s grave is in another state. I make certain to send money for flowers on his grave for his birthday and Christmas. When I visit the state, I make sure I do not leave without visiting with him.
7). How would you define the word “hope”? Hope is what moves this world where we live. I hope not a single human being (even animals) has to suffer this type of loss.
8). What does the word “healing” mean to you? Healing is what I pray God to allow us to obtain in order to continue until the end.
9). If you could offer another bereaved parent some hope to hold onto, what you would tell them? Do not ask God why it happened as we would never really understand why. Ask God to fill your heart with peace to help you move forward with more ease and celebrate the person(s) you lost.
10). What gift(s)– if any– have you found in the midst of your suffering? The gift of not losing my mind…honestly.
11). How has your loss changed you? It has allowed me to see life with a different perspective…perhaps more humanly. It has also helped me to focus on what it is really important in life and not get obsessed with trivialities. But I feel that I lost the ‘spunk’ (happiness) in my life.
12). What do you find to be the most horrific, gut-wrenching, torturous part about living life after loss of your child? Seeing my daughter suffering the loss of hers. I was expecting my son to die after his medical diagnosis although he lasted two more years than the doctor’s prediction. However, seeing your daughter full of emotions expecting her first child only to lose her so unexpectedly– it has been a complete blow to my life. I sometimes find myself as affected as she is. It is difficult to explain and perhaps impossible to comprehend.
12.5). What have you found to be the most beautiful part of life after loss? Most beautiful…..nothing.
13). How has your child’s death changed your relationship with your partner? I divorced from the father of my children right after I lost my son.
14). What is your biggest trigger, and what helps you cope when it hits? Holidays and special occasions with the family. So far, talking about Arabella has made things easier during these times. We may cry a little but then immediately continue with life. We are planning a walk as a Team in the upcoming 2014 Tears Foundation Annual Walk. This will be very nice for all to feel closer to her. The walk is around her birthday and we are planning to release balloons with messages for her.
15). What is one thing about your grief, your circumstance, or your life now that you do not feel free to say out loud? And what usually keeps you from sharing it? I regret that I did not grab Arabella and hold her close to me. I shared time, kisses and was with her all the time but cannot explain how I missed to wrap her on her blanket and hold her tight. I find myself regretting this and not sharing with anyone including my daughter. I would not dare sharing with my daughter my regret as I know for a fact (even though she has not admitted to me) that she regrets herself the fact that she opted not to see the baby. I do not want to bring her more suffer and pain as I know she has regretted over and over her decision; but that was in her own words the best way for her to cope with the situation. She was so in shock and overwhelmed with the unexpected event that I cannot blame her for her decision.
16). What do you want the world to really know about pregnancy, infancy, child loss or life after loss? I would like for the medical staff in general to be more aware of stillbirth; for research to be funded to find a way to detect possible problems on time to safe a viable fetus; for the Government to recognize stillborn as a viable person and grant the proper right, recognition, and respect to this tiny life that existed; for the families to talk about it and recognize that although the baby was lost, he or she existed, and the father and mother of that child are no less of parents because the child is no longer here; for the medical community to talk to every single pregnant couple about the possibilities of stillborn even when no indication or medical history exist; to issue preventive measurement to eradicate the chance of stillbirth; to stop the taboo and stigma of a stillbirth, the fear of many even speaking about a lost baby.
17). What kind of grief support have you found to be most helpful? H.E.A.L – I am thankful to the Florida Hospital and Disney Foundation who have adopted this program which provides counseling and grieving services to affected parents through a 7 weeks program right after the incident. The hospital in partnership with another charity provides a box to mothers who have lost a baby. In this box, there are sorted items that allows the parents to grief properly in the privacy of their own space and have something to remember their child. This even includes pictures of the baby. My daughter opened hers several weeks after at the privacy of her house and was able to release emotions and create bonds with a baby she did not see until then (in pictures).
18). What do you want the world to know about your precious child? That they both existed and were our happiness, even as brief a time they were around.
19). How would you describe your life as a bereaved parent? It never ends, we just go one day at a time. Some days are better than others, sometimes we laugh over tears.
20). What is the hardest part about your everyday life now? I feel that the hurt from losing my son 32 years ago has come back to get combined with grieving Arabella and seeing my daughter suffering. It is difficult to express my feeling. Some days I feel numb, like it is difficult to even smile. For certain I am not the same person I was before 11/26/13. The person who had achieved dedicating my life to the other 2 daughters I have when Tyrone was sick and I could not take complete care of them…seeing them growing and succeeding in life…enjoying my first daughter’s children…my new marriage now of 20 years…and a successful career. No, I am not the same one; hopefully one day I could feel the same I was on 11/25/13; perhaps when I see my daughter having her healthy rainbow in her arms honoring Arabella and enjoying life again.
21). How do you keep your child’s memory alive? By talking about them and making everyone around me aware that it is a rule in my house that they ARE part of the family even if they cannot be seeing. I have decided that if some feels uncomfortable around us because the way we manage our lost kids memories at home, they are welcome to leave and never come back.
22). If you could say anything without worrying about the way people would react, what would it be? Do not tell me or my daughter how and how long to grieve!
23). What do you wish the world understood about the reality of being a bereaved parent? That we are not crazy, just broken.
24). What helps you most when you feel waves of anger, despair, or grief? Crying and solitude. I also have found out that writing to Ty and to Arabella makes me feel better. Perhaps it allows me to release emotions at the time I am able to communicate my feelings to both of them. I am keeping all my notes and plan to keep it all together to read it years from now when I heart is a better place. I am certain that I will reflect on the message but it will not be as painful.
25). What has given/gives you the strength to keep on keeping on? My daughters and grandkids, as well as my husband.
26). What makes you feel most connected to your child(ren) who is(are) no longer here? Thinking of them.
27). What is one thing that would help make your burden lighter today? Hearing that my daughter is expecting again. I do not share it with her to avoid any pressure but it makes me happy knowing they have decided to try again.
28). If you could tell your child anything, what would it be? I love you!
29). If your child could tell you anything, what do you think he/she would say to you? I love you Mom. I love you Nana.
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