Sunday, February 28, 2010

Adrienne's Life....23 and 1/2 years young

At 5 weeks and 6 days she went into heart failure, then Christmas eve spinal meningitis (viral) which took about 72 hours to determine is was viral), then again at 10 weeks heart failure then failure to thrive right after that(burning up her calories as she ate because it took so long for her to drink her bottle) so tube feedings started, then stroke level blood pressure. It seemed like it was constantly something and she spent as much time in the hospital as she did at home for probably the first 6 to 9 months. I think Brent that we just babysat her.

Then we started with the chronic ear/sinus infections. Of course she was delayed in doing everything and ALWAYS a thin little baby. When she finally crawled it was what I call an army crawl (on her belly using her arms to get around but boy she mastered that and could get from point a to b in seconds!) Then the illnesses got further apart and things seemed a little more normal but we always seemed to get some weird something when we were sick. Occipital cellulitis when she was 2 1/2 where the drs. were afraid she may lose site in that eye. May of 83 at 4 1/2 she had heart surgery. Did fine. Then cellulitis in her legs off and on till she was a teenager. Vasculitis on her extremities when she was about 10 and that lasted a year. Had several neck surgeries (plastic surgery) to correct severe webbing which was part of the Turner's. Growth hormone injections that got her up to 4 11 3/4" so we reached 5' in our book and she was very happy. Without them she would have been 4'7". Took female hormones to promote period, breast and other normal female characteristics. Her personality was always a little off. At 5 they said she was ADHD but I could always tell it was something a little more. Normal intelligence even above but just didn't have appropriate behavior at all times and barely had a friend which is very sad from a mother's perspective.

She took a year or two after high school but finally started college and was just at the point of transferring from community to a 4 year when she died. Starting in Dec. of 02 she got sick enough to go to the ER 2 days in a row some unknown infection where here white cells were sky high, then in Feb. same type of weird thing, 2 days in a row ER, but this time lungs hurting and uncontrollable jerks. I remember at that point thinking to myself that this was weird and almost going back health wise like when she was a baby. Then the end of Feb. or beginning of March my dad took her for me to the cardiologist because she was feeling so bad and it turned out she had strep in her blood??? but the did her yearly checkup and and treadmill and all, put her on two high doses of different antibiotics and all seemed fine.

March 20th was coming up and that is the youngest grandaughter's birthday (Morgan). Adrienne told me her dad would be there and in those cases I have always not gone and just go another weekend (except for Morgan's baptism). I decided the heck with it, I could deal with it since there would be a bunch of other people and I wouldn't have to deal with him. We went; had a great time. That was the last time Adrienne saw her brother, nieces and dad. She died April 2 at home in the middle about 2:30 am. EMS got here and worked on her until 3:30 but I knew in my heart she was gone. They took her to the hospital and the Dr. told me the reason they tried was because she was still warm when they got there. There was no obvious reason that she should be dead so the Dr. sent her to the medical examiner for an autopsy. Two days later her normal Dr. called and told me he called the coroner's office and she had died of an aortic dissection and wanted to know if she had hit her chest or fallen on anything. I told him no. Come to find out Turner's can have this and a few have died; fewer have survived.

The following is a letter I wrote for the Compassionate Friends newsletter one year.

A Mother’s Reflection

Adrienne’s short but full life of only 23 years was a difficult journey from day one that she always managed to master and have such a positive outlook. She always felt that she could overcome and accomplish any challenge thrown at her. She generally dealt with her medical issues well. It was her being “different” that was the hardest for her to accept and sadly enough for “normal” people to accept her. However she continued in her own way to make the most out of her life by being cheery, positive and working towards that “normal” life that she desperately sought. Being her mother it was always heart wrenching to see her try so hard and have to deal with the disappointments. Adrienne’s determination allowed her to pull herself back up and move on. I don’t think many of us including myself, would have ever had her strength to deal with life’s cruelties as graciously as she did.

She was a very loving daughter who did give me headaches on one or two occasions. I thank God that I had her for 23 years to teach me about dealing with life and showing me how to be just maybe a little bit more tolerant of individuals shortcomings.

I am sorry Adrienne that I…

…didn’t tell you more often how much I love you
…didn’t always take the time to give you a smile, hug or kiss
…didn’t always take the time to slow down so that we could spend more time together
…didn’t let more things roll off of my back
…wasn’t always able to protect you from the cruel comments and actions of others
…didn’t know you would leave suddenly and our time together would be gone forever
…didn’t get to know God as well as you until after you were gone

Thank you Adrienne for…

…23 years of unconditional love
…your wonderful smiles, hugs and kisses
… always forgiving me and acknowledging that I was doing the best I could as a parent of a challenging child
…for your courage, determination and strength that showed me how to not give up when things get tough
…your love for life
…not letting your medical problems or me slow you down or stop you from experiencing life
…having kept many childlike behaviors throughout your life even though at times they were embarrassing to me
…for the joy and appreciation you always had on your birthday or for Christmas
…the last New Year’s we spent together alone and the fun we had
…bringing me closer to God after your death
…knowing that regardless of all of my “should” haves, “would” haves, guilt, sadness; it will be ok and get better each day because that’s what you would want for me
…being a wonderful, loving daughter and my best friend always.

Happy “25th” birthday Adrienne! You had such a wonderful way of dealing with your shortcomings and ignorance of people. You were always so determined to be “normal” and “fit in”. I just want to tell you again how very proud I am of you and everything you accomplished.

Adrienne had Turner Syndrome and died suddenly from a dissection of the aorta. In so many ways she was still a young child but she tried so hard to be 23. I will always have Adrienne in my heart, thoughts, memories and prayers. I love and miss her very much and now have an understanding of what people mean by “a broken heart”. I hope that I will eventually acquire her tremendous strength to get me through the grieving process.

I learned from Adrienne that it is possible in life to pull yourself back up and move forward when life has not been fair. We all know losing our child is not fair but they would want us to pull ourselves up and move forward. We will have them forever in our hearts, memories and dreams. No one and nothing can take these away from us!

I would like to thank the B Shift at Station 57 for everything they did for Adrienne and me in the early hours of April 2, 2003.

Engine 57

Captain Wayne Waters Engine Operator George Steich

Firefighter Larry Fenske Firefighter Bill Spratt

Ambulance Supervisor 57

Captain Wesley Warneke

Ambulance 78

Paramedic Troy Steinberg Paramedic James Pennington

Catherine G. Chism
TCF, Houston, TX
October 2004

1 comment:

  1. As you know, I share many of the struggles with you. Our children are priceless no matter how they are delivered to us. Not all moms are meant to have perfectly well children. God knows what he is doing even when we have days of doubt. SHe is a beautiful young lady. her smile is infectious isn't it? Hugs to you my friend. Tammy