On April 23, 2010 at 4:10 pm, I learned that my Daddy had a brain tumor. He had been having some trouble with the right side of his body and that had led him to the doctor. Many tests later, the doctors discovered the tumor. At that time we were very optimistic that the tumor was benign and that it could be removed surgically. The next week, on Wednesday, April 28, 2010 he went into surgery.
And our whole world changed.
After his brain surgery there were words thrown around like “oncologist,” “chemotherapy” and “radiation.” Phase III-IV Glioblastoma. Ugly words. He was in the ICU for a few days but after he weaned off the vent from surgery he was ready to “Get ‘R Done.”
And get ‘r done he did. He moved from the ICU, to the Neuro Acute floor to the rehab floor. He was told by his physical and occupational therapists that he was the hardest worker they had ever seen. Medically, he shouldn’t have gained his ability to walk and use his right arm again after his surgery. We were told with a glioblastoma tumor that the longest he had was 5 years.
Everyone grabbed on to the *5 years* part. 5 years? That’s plenty of time to get bucket list things done. Plenty of time to play with the grandkids, time to finish up projects and plenty of time to say goodbye.
Little did we know how fast things would go.
July 4, 2010 – my Mama called me and told me to “get to the hospital.”
“Are you for real? Like this is a for-real get to the hospital thing?” I asked.
“Yes,” she replied.
He had been admitted a week before with odd swelling in his head. Staph infection. Brain surgery on June 29th AND June 30th. TWO DAYS IN A ROW. Of brain surgery. On July 2nd they talked about him going home and how his infusion antibiotics would work. On July 4th he was no longer going home but Home with a capital H. Wait…what?
His heart rate was high and his blood pressure was very very low. His kidneys were no longer functioning.
And then? We waited. And we prayed. We prayed for no more pain. But no more pain? Meant no more Daddy.
He held on until the early morning hours of July 13th. I received a phone call at 1:45 am and was at the hospital by 1:55. My sister looked at me simply and said, “he’s gone.”
He’s GONE. My rock. My strong Daddy. Gone.
It’s been not even three months since that day. Most days I would say I’m okay. Some days I’m simply not. The physical pain of grief sneaks up on me and overtakes my body. The anti-depressants and anti-anxiety meds don’t seem to work at all.
I miss him terribly. I have no motivation. I rearranged my bedroom yesterday and had to sit down and sob. I’m 32-years old with a daughter of my own and a house. But moving furniture in a house that my Daddy was so entrenched in crushes me. He is NOT HERE. He is not going to complete my “Daddy Do” list. He will not see my little girl grow up. He will not see *me* grow up.
You see…my wonderful Mama and Daddy saved me from a bad marriage. They let us live with them for four years. I got to live with my parents as an adult – I got to know them as my friends. My Daddy was my rock through my divorce, through losing my job in early 2010 AND through his illness. He was our family rock when my nephew was diagnosed with leukemia at the age of 7. He gave me advice on everything from what to wear to an interview to how to paint my kitchen. And now? He’s just gone.
We have been trying to have a baby for years to no avail. I will spare you the details, but I was approached by a potential birth mother who is a friend. She is pregnant, doesn’t want the baby, was going to have an abortion and decided she didn’t know if she could go through with it. She asked if we might be interested in private adoption. YES, oh YES, it would be a dream come true.
I did it. I got my hopes up against all logic and warning from everyone.
When you say things like this, I want you to remember a face.
This is my daughter. In this picture, she’s playing soccer. With a Special Olympics team.
You see, she was born with a metabolic disorder that caused brain damage when she was only a week old. She may never read over a third grade level. She still has a speech impairment despite 12 years of therapy. She’s socially inept at times.
Yeah, she’s what some people would call “a retard.”
Only that word is complete and utter bullshit.
Hearing that word cuts both her and me worse than any knife could. There is absolutely no reason to use that word. EVER. Don’t give me the bullshit that it’s a medical term. If you do, I’m liable to scream “shut the fuck up” in your face. Well, maybe not, but I will be screaming it in my head.
If you’re going to use the word retard, you might as well use words like nig****, fag****, dyke, cunt… Oh, but you won’t use those words. Those are bad words.
But retard? Well, that’s not so bad. After all, the only people that’s only insulting the mentally impaired. And they don’t know what is going on, do they?
I have news for you though. They do know what’s going on. Mentally impaired people have feelings, hopes, and dreams just like the rest of us. If you take a few minutes and actually get to know someone who is mentally impaired, you’ll discover that.
This isn’t about being politically correct. It’s about showing some RESPECT.
Even now, nine years after the fact, I struggle about where to post this. I’ve been told so many times that I had a miscarriage, that Maggie wasn’t even a viable baby.
She was my baby. She was my daughter. I held her in my arms, and I gave her a name.
I have a daughter.
Some people I know are surprised to hear this, since I only talk about my sons, Big and Little G. I don’t talk a lot about the fact that there were pregnancies #4 and 5.
I’m going to pull a lot of this from a story I posted at the Preeclampsia Foundation back in 2002. The women in the forums there saved my sanity, and I love them for it.
About 17 weeks into my second pregnancy (my first ended with a miscarriage at 14 weeks), I experienced a day where I threw up all day long. I hadn’t had morning sickness at all, so I was a little concerned, but Car (my husband) and I assumed I had a 24-hour bug. The next day I didn’t throw up, but I simply didn’t feel well. I had a general feeling of unwellness from then on, but nothing specific.
At about 17.5 weeks, the pain started. At first I assumed the pain, which was located just below my sternum, was heartburn. I’d never had heartburn, but I couldn’t imagine what else the stabbing pain could be, and everyone knows that pregnant women get terrible heartburn. The pain got progressively worse until I could no longer work. I asked a few people if this was really what heartburn was like, and they assured me that pregnancy heartburn could be really bad. I took the maximum amount of antacids allowed, but nothing helped.
I had my usual appointment with my perinatologist on a Wednesday, and I mentioned the pain. He suggested Pepcid AC. My urine showed only a trace of protein, so there was no cause for concern, despite the fact that I had to have a friend drive me to my appointment because the pain was so intense.
That evening, as I curled up in a ball on the couch and sobbed, Car decided I needed to go to the emergency room. I refused, positive the ER personnel would laugh at the pregnant woman who couldn’t handle simple heartburn. We finally struck a compromise–I would page my local OB and if she thought I needed to go to the ER, I would. When my doctor returned the page, I was crying too hard to speak with her, so my husband filled her in. She also thought it was most likely heartburn, but said if the pain was bad enough that I couldn’t talk on the phone, the ER wouldn’t be a bad idea.
The first thing the doctor at the ER did was give me something he called a “GI Cocktail.” It’s a lovely little drink that numbs your entire digestive tract down to your stomach, and will apparently subdue even the worst heartburn. It made my tongue and throat numb, but did nothing for the pain. The doctor said, “I don’t know what’s wrong with you, but it’s not heartburn.” They gave me a shot of Demerol for the pain and ran several tests (blood work, ultrasound, CT scan). After about 4 hours in the ER, all they could come up with was, “We can’t find anything wrong except for some elevated liver enzymes. We think it’s probably your gallbladder. Call your doctor in the morning.” They discharged me and sent me home.
The next day I called my doctor and told her I had elevated liver enzymes and the ER doctor thought I had something wrong with my gallbladder. My wonderful doctor, whom I credit with saving my life, said, “That doesn’t sound right. Let me makes some calls and call you back.” Within 30 minutes, she called me back and told me to go to the hospital for further testing.
From that point on, things become a blur. I was admitted to the hospital on Thursday and put on a morphine drip for pain. My liver enzymes skyrocketed, my platelets dropped. We were told that the best-case scenario was hepatitis. My red blood cells started to self-destruct and my kidneys began to shut down. My brother flew out from Minnesota in case he had to say goodbye. Every possible liver disease was tested for and ruled out between Thursday and Saturday, when the doctors finally settled on the final diagnosis–HELLP Syndrome. They told us that to save my life we would need to terminate the pregnancy. I begged them to prolong the pregnancy long enough to save my child. The doctor told me, “I don’t think you understand. It’s not an either/or situation. If we don’t end the pregnancy, both you AND your baby will die.”
I was 19 weeks pregnant.
On Saturday night a doctor started the process of manual dilation (which is every bit as painful as it sounds), and on Sunday I delivered a perfectly formed little girl, Margaret Marie. Maggie weighed 3.88 ounces and never took a breath on this earth. I held her in my arms, counted her fingers and toes, and decided she looked like my husband, who was weeping by my side.
About six months after Maggie was born, we decided to try again. I miscarried at six weeks. I told myself , “At least it happened early,” but I was still devastated.
I think my title sums up how I feel. My heart has been aching for the past year for a person that has been there since I was two, for twenty-eight years of my life, and now she was gone. She was my cousin. She was there before my sister. I don’t remember life before her.
I feel guilty that I didn’t take the time to get to know my cousin. Sure, I did the family obligations, the birthdays, holidays, and weddings. But it wasn’t until I was at her funeral that I realized how much I had missed out on. I felt awful because she used to drive me crazy. I found her very annoying at times. While everyone talked about the saint she was, I felt so guilty about I used to feel about her.
Denean was different, she always was. She was an old soul before she was in high school. I think she knew even then. In 1998 we got the call, my mom, best friend and I, while we were working at my mom’s practice: Denean had Non-Hodgkins Lymphoma. It’s treatable, she will beat it.
But, still I think to myself, it’s cancer and she’s only 17. Through treatment and chemo and losing her hair she remained positive. It was as if she was God’s own army, it was amazing.
Remission with follow-ups came next for five years and then there was a lump.
Breast Cancer. Denean had a biopsy and yes, at the age of twenty-three she was diagnosed with breast cancer. A double masectomy and a hysterectomy followed, plus lots of chemo and radiation. Then remission again. She had won, we had won! It was a good day.
Then two days before her brother’s wedding, another lump. This one was bruised and ugly. Breast cancer again. With no breasts. It had spread. Lymph nodes, bones, tissue. Her mother, my aunt and a nurse, asked a doctor how long we would have with her. 5 years, he told her, 5 years at best.
My cousin was twenty-five at the time. She wouldn’t live to see thirty.
But we were all selfish. We expected her to win, to beat it. She always did.
Looking back, we missed it. She knew she was dying and she planned for it. My only regret in life is that I didn’t plan for it, too. My best friend told me to spend time with her while I could and I didn’t. I did once I realized what was happening, but I regret that I didn’t before. Three weeks before she died, I rushed home with my two-month old baby to be by my cousin’s side. Until the day that I die, I will be grateful that I had that one week with her. I got to make jokes with her about her ICU nurses, see her sarcastic sense of humor one last time.
I will carry that week with me always.
Denean left the hospital September 17, 2009 and three weeks later she died on Sunday, October 4th, 2009; her father’s birthday. Her funeral was standing room only. The women and the real men wore pink to honor her.
Denean was that person that you read about in People Magazine. She fought cancer three times, she put herself through school and she taught to special needs kids–it was her passion. But her most important job of all was that she lead so many people to Christ. She helped start a prayer group in her high school that started out with 10-20 people. Today, it is well over 200 people.
To say it is an honor to have known her for her entire life would be an understatement. I feel blessed by the hand of God to be related to Denean.
Thank you for this forum. It feels amazing to talk about her.
Denean, if by the Grace of God you are reading this, I love you and I miss and I will forever feel blessed to have the honor of being your cousin. I think about you every day and will miss you until the day I die.
The first night after my breast cancer chemo treatment was awful. Nugget sobbed hysterically in my arms, giving way to heavy sighs between her defeated attempts for true comfort until she finally fell asleep. I cried, and cried, and cried. Between the tears i apologized over and over to my sweet baby girl for being sick.
Last night was thankfully less painful. She fell asleep with my mother and only had to be quietly lulled back down once. Thank god for small miracles.
As for me, I felt pretty nauseated yesterday and today, and the meds to combat that make me tired. Today, I really started to feel exhausted. We went out for some quick errands this morning, but I’ve since spent the remainder of the day in bed.
