Tuesday, December 31, 2013

Confessions of a Young, Bereaved Mother and Terminal Cancer Patient


In my 29 years here on Earth I have learned more about the ways of the world than many will in a lifetime. I have shared many thoughts, but most of my deepest darkest ones I have kept hidden, until now.

2013 has been one of the worst years of my life, 2007 being the worst. It was the year she died.

I remember that first year after she died. I cried myself to sleep for 7 months straight. My eyes were constantly dry and cracked from the tears. They would burn with every droplet and I felt as if you could actually see the bags under my eyes. I would scream in my head "I hate you, Shannon!” I hated her for dying. I did. She left me. It wasn't how life was supposed to be. She wasn't supposed to die before me. My future shattered. I never wanted to lose her, but forgetting her was my actual fear. Every month in the first year after she died I dreaded the 16th and the 19th. The first time a month passed and I didn't realize the 16th came and went, I was sure I already started forgetting her. As each day passed, I thought about her less and less. She no longer consumed my every thought, and I guess that was a good thing. I always said if I lost another baby, I would have no purpose and would not need to live. I would rather die than lose another one. But, I did lose our second baby, and I didn't die- I lived. I learned then how to survive.

And one day I felt this rush over me. It was peace. It was Shannon. She was okay, and I was okay. I felt at peace with her passing, and the loss of my second pregnancy. My grief seemed to plateau after that point. I have watched other mother's who have lost children go years past their child's passing and yet still be enveloped in that first year of grief. It's detrimental to your well being to be stuck in those frames of life as if they were to play out forever. I am not.

I am a bereaved mother. That is one thing that will never change about me, like it, leave it, love it, hate it- it is what it is. I am deprived of a daughter that I should have with me. I also lost a baby that never had the chance to even hear my heart beat. I should have 5 children with me, not just 3. I was asked, shortly before my diagnosis, if I had "gotten over" Shannon. The answer is no. You can never 'get over' a child that has died. Just because Shannon is not here does not mean she is easily forgotten. You see, my grief, it is a very nasty scab now, covered by a bandage. And sometimes, my bandage falls off, and my scab is exposed; and like any other scab, it bothers me; it itches, it hurts and sometimes it seeps. Then it needs time to heal again. One day, my scab will turn in to a scar, and I will no longer need a bandage to cover it, but I am many years from that. Healing is a delicate and extensive process. Shannon is, and always will be a part of my life, like any of my other children. I miss her, but my grief does not dominate me. Love does. On special occasions, when the wind is just right and the sun is at the perfect angle in the sky; I see my three little children running through the fallen leaves and I think to myself "Shannon, I wish you were here". Although my family will never feel complete, it is the love I have for her that now enables me to move forward.

After the twins were born I finally felt like I was a "real" mom. I finally was able to actually hold a baby, feed a baby, change diapers, hear cries- this was real. I welcomed every fit, every poopy blow-out, and every single drop of vomit on my shirt and every single cuddle. Even though being a NICU mom for the second time was a hard experience, having that role for a third time proved even more difficult. I nearly died having Stephen, and that is no understatement. I literally needed life saving measures, 3 surgeries and 7 blood transfusions to save us. All of which left me without the capability to ever bear children again. It has been hard for me, I never experienced that whole naive pregnancy, natural birth, bring your baby home from the hospital with you sort of thing. It is something I struggle with, I felt robbed of the normalcy of pregnancy, delivery and a newborn. Although at times it plagues me, I accepted it for what it was. A blessing. I was blessed to now have three children. I became a stay at home mother shortly after the twins had turned one. It was a hard adjustment, but I did adore it. Things became increasingly harder after Stephen was born. He had so many special needs related to his prematurity, so I always spent extra time with the twins. Life became easier to juggle, and even though at times I longed for a night out, I did truly love being a mom. It was what I was meant to be.

When Stephen was almost 3 is when the big blow came. We always had appointments and therapies for Stephen, and we were always ensuring that he thrived but it didn't control our life. After an appointment down at the hospital last fall, it was suggested that he was farther behind than what I thought. They suggested he needed intensive therapy 6 times a week. I felt like a failure. Maybe I was too selfish, focusing more on others needs instead of that of my son. It hit me like a ton of bricks. We started within a month having therapy one to two times a day five days a week on top of the girl's pre-school classes three times a week. Being a mom is tiring work, but being a mom to a special needs child, whew boy- now that takes nothing short of a saint to maneuver. It was rough, and it was tough, but I did it and I looked forward to learning from this experience in every way possible. And I was doing a good job. I was mom to three beautiful, loving kids.


And then, I became this: A Terminal Cancer Patient. As if I haven't gone through enough, as if I haven't bled, cried and begged to be a Mother for long enough, this came, and it threatened my very existence.

There are so many things that suck (seriously no other word), that just absolutely, unequivocally and downright suck about having a terminal cancer diagnosis. It's a huge burden of responsibility, unlike one I have never felt before. It wasn't one of my kids that I had to take care. That, compared to this, was manageable. I could handle being a mother that had to watch your child fight to survive. I wasn't the one fighting in those situations; I was a bystander watching everything unfold before me. I could handle the decisions, the pain and the anguish because it wasn't for or about me. As a mother, I have seen other mother's nightmares play out in my own life, like when my daughter's ventilation tube was drawn out of her mouth and she held on tight to my husband's hand and spent the next minutes dying in my arms.

Maybe, as a mother, your worst nightmare isn't your child dying- it's you dying. And there I was, sitting in a dark hospital room; having a doctor tell me she would try to save my life, realizing that all along, I should have been fearing the day that my children would be without me instead of the day I would be without them.

I try to act as if my life hasn't been disrupted, that I can still manage the kids, the husband and everything else but the truth is: I can't. I know, I know- I look okay, right? I got this huge smile on my face, and I am happy and laughing, but, don't you mistake all that for me feeling great, having it all together and worked out 'causeeee I don't. I have never felt so tired so quick, and have been in so much pain, have so many emotions run through my mind and have never been so unable to control a situation in my entire life. You have no idea how hard it is for me, the outgoing, gotta-help-everyone, can't-say-no, always-on-the-run, in-to-something-new-all-the-time, cooking-dinner-every-day, has-such-a-clean-house-you-can-eat-off-floors, has-everything-UNDER CONTROL----to not. This situation is uncontrollable. It is unable to be controlled. Even though I hate every bit of having cancer, I will be damned if I let it consume me so I try hard to put on a brave face, to be inspiring and uplifting.

And sometimes, well, most of the time, well, all the time- I feel sorry for everyone. I feel sorry people know me. I feel sorry people care about me and I feel sorry people love me; because, I am going to die on them. I know what it's like when someone you know, care about or love dies; it's horrible. It's a cruel tragedy. It can shape a person, it can break a person, and it can have long term effects on a person. I feel sorry for them because I know what my death could do to those people and I am afraid. I am afraid of hurting people more once I die. I am afraid of forging new relationships. I am afraid of getting close to anyone. I am afraid of continuing relationships. I am afraid that I will die at an age that my Godson will remember me. I am afraid that the people I inspire will be devastated. I am afraid my friends will have to endure things without my shoulder to lean on. I am afraid that my nieces and nephews will forever hold on to the day they said goodbye to me. I am afraid that my sisters will always say "I wish Katie was here". I am afraid that my parents will feel a pain I felt after Shannon died, a pain they will never recover from. I am afraid that my husband will feel abandoned yet again. Above all, I am afraid that my kids will never heal. I am so in love with so many people that it hurts my heart to the deepest depths to know that I will cause them pain; pain that may last for weeks, months, or years. I cannot handle that and some days my fear for everyone is enough to drive me in to solitude.

But the anger drives me in to isolation as well. I am naturally a short-tempered person. I become very angry, very quickly. I get angry at having cancer. I get angry at friends who stopped being good friends. I get angry at the family who has no regard for me. I get angry at people that take advantage of me. I get angry that people who take so much for granted. Their utter thoughtlessness and wanton cruelty boggles my mind- cancer bewilders me. It makes me insane. I want to scream and shout about it all. How dare you? How dare you mess up my life, cancer? How dare you abandon me, family? How dare you not keep your promises, friends. How dare you not treasure every single second of your life, people.

Then there are days the depression creeps in. I can feel all of these feelings simultaneously erupt like a volcano and wish I just wasn't here anymore. If I wasn't here, no one would suffer, myself included. I just want to be with Shannon.

And then I have these miracle days. They make me forget everything. God doesn't always answer my prayers, but, He sends me these reminders to let me know He is listening. Sometimes it's a gift from a stranger, like the man who paid for my over $80 transaction at Wal-Mart, and sometimes it is as simple as my 5 year old grabbing my face and looking intently in my eyes saying "I love you so much, Mommy". These days restore me. They rejuvenate me. They fill my drained soul.

I am young. I am a bereaved mother and a mother to three very small children, one with special needs and I am a terminal cancer patient.

2013 had been a thousand mile an hour emotional roller coaster that I can't stop. I am strapped in and feel like I am going to hurl, cry, or fall off at any moment. I have grieved over many things beside my terminal diagnosis. I have grieved the loss of my daughter all over again; I have grieved my relationships and have grieved my motherhood. If 2013 has taught me anything, it was that the unexpected happens. I have seen the best, and the worst of life all in one year.


2014 will not be easy, but in my last confession: I am totally ready for it.

7 comments:

  1. I will take ANY pain of your life/death as long as you are in mine. You see, you can take it two ways, be sad and wallow in the grief (you know this) or be happy and know you are blessed for the soul who enlightened your life. You are one of those souls - I thank my lucky stars for you every day. Thank you for being real - it is rare! Love you!

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  2. Kate, your story is both heart-wrenching and inspirational. I have been following your blog and your story on Facebook, and am absolutely moved by what you have endured. I know you've probably heard it a million times, but you remain such a strong, focused, passionate, determined young woman and mother. I can't imagine the challenges you face on a daily, minute-by-minute basis. All I can say is thank you for sharing your story - all of it, the truth, the honesty, the grief, the love and passion, the beauty and the heart break. You are an inspiring woman and you have touched my life in so many ways. I can't imagine the countless others you've impacted as well. Sending love and strength for a great 2014, Marjorie (diagnosed with breast cancer at 26; age 29 now and happy to be healthy.)

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  3. Kate, I, too, don't know you. I haven't endured anything close to what you have gone through. Following your story makes me thank my lucky stars for my children, my grandchildren, my family, and my health. I'm beyond old enough to be your mom and if I were, I would tell you to take one day at a time and enjoy it. I'm sure you try to. My prayers will be with you and your family on your journey. Keep on kicking cancer's ass! You are an inspiration to many.

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  4. This entry made me cry. I absolutely LOVE you. You are so inspiring. You are so STRONG. I honestly don't know how you do it. You ALWAYS look at the positive in every situation. Love you, love you, love you. XOXOXOOXOXOXOXXO

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