My mom is my inspiration… she died fairly unexpectedly on November 8, 2011 when I was 7 months pregnant with my second child and only daughter. She was my mom and she was one of my closest friends and I miss her deeply. Her strength, courage, and spirit have always moved me in many ways but she has been my inspiration to make changes in my life and to enjoy the moments and to be present.
My mom, Cathy, lived her life to the fullest each and every day, always with a smile on her face even though she fought daily against the symptoms of Crohn’s and Colitis. She was diagnosed around the age of 34 with Crohn’s and Colitis after she had me, her youngest and only daughter. Cathy struggled with severe episodes that sent her into the hospital frequently sometimes several times a year and often resulting in surgery to remove parts of her intestine. She was a fighter and fought through years of surgeries and pain and discomfort and diarrhea and then she went to Cleveland Clinic and underwent a surgery that put a splint in her intestines and kept them from ulcerating and connecting to each other and did not have a severe episode for 10 years!!!! She had the daily discomfort of diarrhea since she had such a small amount of intestine left and remained on various drugs but you would never know it… .she smiled each day and took great joy in her family and friends. She LOVED people…. she then had to have a few other surgeries but the severe episodes were less and less, although I think she would have loved to get rid of the daily symptoms she endured… gas, diarrhea, bloating, occasional fissures, etc.
She and I became closer and closer over the last 7 years and I am so grateful to have known her in a way that meant so much more… she was my friend. We listened to each other, learned from each other, shared with each other. This may sound so strange coming from a daughter about a mother – but I was proud of her… she grew as a person in the last 5-7 years of her life. She allowed her mind to be opened to new ways of thinking and became curious about other cultures and ways of life. She was able to see outside of what she knew and step outside of her comfort zone and accept and learn…. even if she didn’t agree with whatever it was… not many can do this and it makes me so proud of her.
I was engaged in Dec 2007 and in Feb 2008 she called to tell me her kidney function was deteriorating and they are monitoring it. She was worried but we remained hopeful that this would not progress. I was married in November 2008 and she looked beautiful at my wedding… she was glowing and at the healthiest weight I had ever seen. Her normal throughout my life was around 90 lbs (at 5’4″) and at my wedding she was around 130 lbs and looking amazing! She had a wonderful time at the wedding and made such an impression on all of our friends whom she met for the first time. She had a way of being everyone’s friend immediately… it was as if she had known you forever even though you were meeting her for the first time. In Oct 2009, my son was born and she was so excited. She had such a way with him … she was the first to make him laugh and she would talk to him constantly – she loved to talk and she was a bit of a loud talker – and now my son has inherited this from her ;0). She would get on the floor and play and laugh with him.. he adored her and still loves his “mi-mi”. He called her mi-mi because he was trying to say grammy but it came out mi- mi so… to this day and forever more she will be known as mi-mi in our house!
Then, in 2010 her kidney function continued to decline at a rapid pace. The doctors were playing with the various drugs she was on, she started to require b12 injections and blood transfusions, and her health declined… and declined. By 2011 she was constantly feeling cold, very cold – in 90 degree weather she would wear several sweatshirts. She was so tired she could barely get out of bed… which was so unlike her. She was a mover – constantly moving and going. My husband, son and I took her to NYC in April 2011 and she was in bad shape. She was so cold, had no energy and was unable to do normal activities. I was extremely worried and started to call all of her doctors. I don’t, still to this day, understand why it took them so long to get her on dialysis. Her function was low enough for it and they kept trying to get it up.. but she suffered for a long time without dialysis. Then they started her dialysis, put a stint in her arm and she had some set backs with that but overall was doing better. She was suffering with a bit of depression because the dialysis was a lot – 3 times a week and she felt trapped by it… but she pushed on and was excited to go through the process of testing to be a kidney recipient. I had planned to be the donor early on, but I became pregnant so my brother was going to be the donor and start the process after she was cleared.
On October 28th, I spoke to her at 4pm and she was excited to be coming down to visit us and to be here for my son’s 2nd birthday party on the 30th. She was feeling good and she and my dad were planning to drive down the following morning. Then, at 7pm I received a call from my Dad that he was taking her to the emergency room because she started having severe pain in her abdomen. My mom never complained about pain unless it was hospital worthy so he knew he had to take her. They admitted her ran scans and decided to do surgery on the 30th to remove her colon because it was so severely infected. I cancelled the party and flew up to be with her. She looked terrible – around 88 lbs and tired, but was glad I could be there before surgery. She told me she was scared and I told her it would be ok and that having her colon removed might give her some freedom from having to use the bathroom so often (trying to find the silver lining). She went into surgery and they expected it to be at a minimum 4-6 hours. My brothers, father and I waited together in the waiting room. One hour later the surgeon came into the waiting room and said he had to stop the surgery. He had started to cut away at the scar tissue from 15 abdominal surgeries and punctured her intestine. He was unable to get to the colon to remove it so he said they were going to have to try to clear the infection with antibiotics. I asked what he felt her chances were and he said 50-50. We were all shocked and overwhelmed. This was not what we were expecting at all. We remained positive…
We all went to see her in ICU and as she was in and out of consciousness from the anesthesia, she did not know what had happened. We comforted her and waited to inform her until she was fully awake. The nurses told us to go home and get rest because she likely would not be alert enough until the morning. I asked that they not tell her anything until one of us was with her…. unfortunately the surgeon told her at 6am the next morning before we arrived. She called me crying… but then when I got there soon after she wanted to talk about her estate. I told her that she could beat this and pushed her to positive thinking – I don’t think I wanted to see her dying as a possibility.
The next week was a roller coaster. Her bowel was frozen so she was being fed intravenously and then a tube was taking everything off of her stomach so nothing was getting through her intestines (what was left of them). She was on a powerful pain medication that made her hallucinate and made her angry – which SHE NEVER WAS. She refused dialysis and got so scared she tried to pull all of the tubes out and escape the hospital bed. She had to be restrained. I asked them to take her off of that and try morphine or another drug for pain. If she didn’t get dialysis she was going to die because her blood would become toxic. So, they changed her pain meds and by the next morning, she was normal again and got dialysis and I stayed overnight with her. The nurses were wonderful – I was largely 7 months pregnant and they were very accommodating to both me and my mother even though they did not need to be. She showed tremendous improvement… they started to hear movement in her bowels and she began to eat some foods/liquids. Sunday afternoon they were discussing releasing her in a few days if she continued to improve and Sunday night my son, my dad and I sat in the hospital with her. She kept laughing about the way he was saying his name and how silly he was…. my son would always make her smile. We went home late that evening and at 4am received a call from her nurse….she had started bleeding internally in the middle of the night. They asked us to come right away. My dad went to her and I stayed until I could get a sitter for my son. I arrived at the hospital around 730am and she was smiling and I joked with her about how good her hair looked (it did!) and my brothers, father and I sat around talking with her. I did not realize she was dying until her legs started to fall asleep and they put her on a morphine drip. I immediately called my husband and tried to hold back the tears but they just kept coming…. my husband hopped on the first flight he could.
My father told me that afternoon that my mom had decided not to try anything further. The surgeon recommended her to be sent to another hospital to try a surgery that might stop the bleeding. She turned to my dad and said she was ready to go and be with her mother (who had died when my mom was in her late 30s) and her sister (who had died 3 months before my mom). She was ready, she was tired and she was able to make that decision for herself which takes such strength and I am assuming a feeling of no regrets on the way you lived your life.
My mom’s friends and our immediate family were with her all day. My husband even made it to say his last goodbyes – she adored him as they had a very special relationship. She talked to each of us… we all had a moment to say goodbye. I held her hand and told her it was ok, we would all be ok – because even in those last moments she was more concerned about everyone else than herself. I rubbed her hair, put her hand on my pregnant belly, and held her hand until she took her last breath around 520pm. As she took her last peaceful breath, a tear dropped from each eye. My husband said she must have seen something so beautiful to have a tear drop from each eye at that moment and I agree. I think she felt an overwhelming sense of peace… which helps me although I don’t believe I will ever fully feel at peace with her death. I miss her deeply.