Age: 45
Home Town/Current city: Born and raised in San Diego, Ca. Currently I divide my time between San Diego and New York.
Hobbies: Traveling, hiking, swimming, knitting, sewing, reading, anything handy or crafty, game for anything! :)
The Story:
Our Daughter Katalina "Winkie" was born with a host of medical issues: A heart that was not designed to pump oxygenated blood throughout her body, as well as various intestinal and other issues. She had multiple surgeries throughout her young life; about 50% of her life was spent in the hospital, either recovering from surgery or lying in an oxygen tent because the O2 tanks we had at home for her were not powerful enough. She had Down's Syndrome; about 60% of Down's children have some type of a heart problem, most require a 1-time surgery and the child is fine. Winkie, However, had a heart that was about 25% functional. At her birth, the doctors told us she should be quietly left to die, and that we were in for years of hard work to care for her - assuming she survives her 1st round of surgeries at 1 day old. Indignant and horrified at what the doctors proposed, we chose to fight for her.
A few weeks before she died, my mom became very ill. Our family was very close with my mom, she was a huge source of comfort, support, and help. She loved Winkie and her older brother Calvin (6 at the time) very much. As a medical professional, she admitted herself to the hospital, where it was discovered that she had a very large, melasticized tumor in her stomach. While she was in the hospital, my aunt died. My mom died the following day. Winkie died a few weeks after that.
How did it make you feel?:
Having to grieve for 3 people at once was not easy. I was 24 at the time, married, with our oldest son, my husband, a full time job and full time school with one car. For the 1st year I can look back and say I was definitely in shock; I had to write down even the simplest of chores or it just wouldn't happen. Things like: brush my teeth, go to bed, pick up Calvin from school and take him to soccer practice, etc. I was on auto-pilot and couldn't focus on much outside of the lists I would make each day.
I knew I had a huge responsibility to the rest of my family, and to try to make as "normal" of a family as possible for our son.
I also felt absolutely and completely ALONE. Even though I had my husband and my mom as my usual source of support, my mom was now gone and my husband was grieving also. We went through all the stages of grief in the same order, only I was ahead of him so it seemed like we were not even on the same page.
I felt almost betrayed, he's experienced the same things I have, how come he doesn't understand!? All the various support groups I attended never had anyone who was also dealt the trifecta; everyone else's kids only had a minor (survivable) surgery and they were crying like crazy over what I saw as the simplest, most minor thing. I quit going because no one there could ever understand either. It was very frustrating. My husband and I fought a lot. Even though I knew there were people out there who had had much worse things happen to them, I never came across anyone who could truly know what it feels like to lose my aunt, my mom and my daughter all in one shot.
How did it make you act?:
For the 1st year or so it was purely survival mode. I would keep thinking: OK, all I have to do is just LIVE for the next 15 minutes. I can do that, it's just 15 minutes. Then another 15 minutes. Then I have to study. Then another 15 minutes, etc.
After the shock eventually wore off, I became rather bitter. During that time, my friends would say things like: "I don't know how you do it!" What was I supposed to do, kill myself? Out of the question. Not fair to my son or husband. Or: "I don't think I could handle it" yeah, thanks, I'm not really handling it all that well myself but you'll never get it so I won't bother explaining. Or my "favorite.": "At least you have another child" and "at least you can still have other children". There is no faster way to trivialize EVERYTHING I just went through than to say either of those statements. Was her life worth nothing? Because that is what you are saying. As much as I love my other children no one can replace the one who died. Nor should they.
After things calmed down a bit, friends would come to me with problems but I found myself unable to relate or understand that their problems are actual problems for them, and they are distressed and asking for my help and support. Their problems were always colored by the lenses of my daughters death; I would say: that's not really a problem, get over it already, you're choosing your misery. A least you haven't been through what I'VE been through - come to me when you have a REAL problem. I said all this while not realizing I was choosing to be miserable myself!
It took me a long time to realize that people don't have to go through the exact same thing I did in order for them to be bothered by issues in their lives. It may be a different scale but it weighs just as heavy on their minds. It was by no means complete; I was more able to sympathize with people but I had no empathy. I alienated many people under the guise of: "they're too stupid to hang around with me" or "I'm not tolerating any of his/her bullshit." All of this served to reinforce what I felt at my core, for as long as I can remember: that I AM alone, I am independent, and even though I love my family dearly, there is only just ME when it all boiled down, and I can and will do everything myself. Also not a very healthy way to live.
What was the outcome of that?:
The outcome...the feeling of being alone came at me and I was reinforced on all sides; I was the 1st of my kind to marry into a pure-blood family, and at such a young age. I studied child development and aviation in school; there were very few people in their early 20's who were home owners, ran their own businesses from home or who were female pilots. My swimming business was also unusual. There are less than 500 people world-wide who do what I do. I thought all these were circumstances thrust upon me that I had no control of; certainly I had no control over my daughter's physical condition but I realize now that I was the one who decided which courses to take at school, etc. the outcome was: I am able to do anything and everything, I have a wide variety of interests and capabilities. I am finally now coming to a point where I can say that I can really empathize with people now, care truly about their humanity and everything that it encompasses: their quirks, foibles, bad moods, joyful ness, etc. The outcome is yes, I have been through very unusual circumstances my whole life; I like what is unusual, different and unique. But I can understand how others arrive at the point they are at, based on THEIR circumstances, etc., and not be judgmental about what works for them.
I feel I HAD to go through what I did in order to make me stronger and to prepare me for whatever comes up next, :) especially since my youngest son was quite a handful as a toddler. :)
What was the lesson you/your family took from the whole experience and why are you better now for having gone through this experience?:
We are NOT humans having a spiritual experience, we are spiritual beings having a human experience. I know that I am alive now to have as many experiences I can, to learn every lesson I need to learn; some tragic, some joyful, some stressful, some freeing. I welcome everything that comes my way and view it as an opportunity to learn something new, again! Yay! :) My favorite phrase and new "mission":comforting THR disturbed and disturbing the comfortable. :) Life is just a millisecond on the timeline - it sounds cliché but to love yourself, your family and friends is an amazing gift that needs to be appreciated every day! :) Having lost a child is one of the wort experiences one can go through, so they say. I can't attest to that because anything can be devastating to anybody (even though I'd rather not repeat the experience!) after losing both my sons several times over, I know that there is nothing I can do to control them or anything they do or anything that happens to them.
My "job" now and for the last 17 years revolves around healing families to avoid the pain of losing a child. My son and I run Fun 2 Swim, where we teach toddlers and young children water survival and safety skills, so they can save themselves from a drowning (the #1 cause of death for kids 5 and under!) Doing such proactive (vs. reactive) work is incredibly rewarding. Knowing that we have spared countless families from what we went through is incredible. :)
I am better now because I realize that just because I need help , it doesn't mean I'm helpless. I can ask for help and actually accept it, I don't have to do everything myself, it's not really practical, either.i am better now because I have the best family anyone could ever ask for, a supportive husband and the 2 most awesome sons that ever lived :) My oldest son and I run our swim school and help empower and educate children and their families to do great things! :) I am better now because I have the basics covered -food, shelter and clothing, as well as too many extras and bonuses to mention. I appreciate everything -yes, even the bad tuff, because it an opportunity to grow and improve not only my life but the lives of my family and those in my community and the rest of the world. :)
Inspiring words for those dealing with this situation:
I understand what you're going through! I feel your stress, your pain.while it may be one of the most horrible things you're going through, please know that it is TEMPORARY. I didn't become Miss Mary Sunshine out of no where. It does take time to process and heal. Let it flow how it comes, don't fight it. Don't fight yourself, your spouse, and your family. There actually ARE people out there who know, who care, who empathize and understand. You can make it, one day at a time! You are stronger than you think you are; never underestimate that! :)
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