My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Saturday, October 18, 2008

Favorite Fall Memory # 18 & Sarah's Story

Halloween 1999
Partytime at School again.
This is Melissa and Rocco. They are very good friends of mine. Rocco doesn't always look like that. He is just pretending to be a mad scientist. I think he is so cute.

Melissa and me doing crafts. This year I wanted to come dressed in my P.J.'s with my favorite stuffed bunny. My mom agreed because she wasn't sure I had the strength to get into anything else.

I look pretty skinny here don't I? Well, I missed 100 days of school in 1999. My mom will tell you more about it.

Yum, yum. Reese cups. I love them.

A MESSAGE FROM MOM: We have not talked too much about Sarah's medical issues yet on this blog. I thought it was time though, as a picture does paint a thousand words, doesn't it. As you can see from the last two posts, Sarah had withered down to skin and bones by 1999. To fully appreciate her story, I best take you back to the beginning.

In Sarah's first four months of life, I replaced three pediatricians. Only By Chance or By Design, did I find the fourth one at an urgent care center one evening. I was so relieved when Dr. Norr did not start the conversation with: "I think you are paranoid or grieving or a nervous mother" like the others did. He just evaluated the baby on her presenting symptoms: she was lethargic, drinking 60 ounces of formula a day and still weighing less than ten pounds, was continually running a low grade fever and her skin was becoming whitish/grey in color and transparent. Fortunately, divine intervention gave me the strength and mother's intuition told me that something just wasn't right, so I continued to seek medical care.

What Dr. Norr found was a significant heart murmur. I was shocked. They told us before we left the hospital at birth her heart was intact. He was so concerned he wanted to transport us to the Cleveland Clinic by ambulance for further evaluation. Sarah was just days away from being six months old. What the cardiologist discovered was a very large VSD, she was completely missing the wall between her ventricles. Because her heart had been working so hard in an ineffective way, she already had damage to her lungs, particulary the left lower lobe. She also had a PDA.

They did surgery almost immediately. She had many, many complications and we stayed in ICU for almost two months. Just eleven days after finally coming home, I found her in her crib blue. Fortunately I had taken CPR as a Girl Scout and my mind just floated back to that day in 1972, and I was able to get her airway open until 911 arrived. We spent another month in ICU, while they tried to figure out whether we were dealing with pulmonary hypertension or another heart issue. Without a clear diagnosis, her vitals had returned to the normal range, so we went home. This time we survived nine days. Our second 911 call. The diagnosis: subglotic stenosis. The recommendation: a permanent trach.

Oh how John and I angonized over that decision. On one hand we couldn't keep living through these life and death situations, on the other a trach required constant medical care and limited mobilty for Sarah and us. We had little TJ, just a toddler to consider too. In hindsight, I wish they had just put the papers in front of us to sign and had done the surgery. Once the trach was in place, she was breathing so much easier. We went through a quick course in trach care and then went home, thinking we would live happily ever after.

Well...let's just say we got to know the admissions clerks by name and the doctors and nurses on the pediatric floor became our close friends. My husband quit his job to be home with Sarah. We had no formal medical training, but by this point we could have had an honorary degree. We did learn to not call 911 because they would only take us to the nearest hospital, and explaining Sarah's complicated case to residents in an ER setting was difficult at best.

With the trach in place Sarah learned sign language, started eating really well, and didn't seem to mind that tiny tube in her neck. Then she got the chicken pox (this was before the vaccine). Those darn tiny sores entered her trach site and her internal airway and lungs were covered with them. I think they called every medical student and resident in a 50 mile radius to come see her as this was a very unusual situation. They were not even sure how to treat it, and whatever they did was not working. After a few days, they came in to tell us that Sarah's days were numbered. John at this point was physically and emotionally exhausted. So I took a few days of vacation. I had to be careful not to abuse my time off as I was carrying the health insurance for our family and Sarah's care was well over $1,000,000. We took Sarah home and for a solid 24 hours I walked, holding her in a vertical position, clapping her back to keep the fluid from suffocating her lungs. I kept telling her "Sarah after all you have been through you are not going to die from silly ole chicken pox." Slowly she started to improve.

In 1997, a new ENT arrived at the Clinic and she suggested we scope Sarah's airway and if it had grown enough she would try closing the trach site. So we did. By this point, I think we had spent one third of our life at the Cleveland Clinic. And just when I did not think it could get any worse, Sarah stopped responding to antibiotics and her body was depleted of it's immune system. Yet pneumonia persisted, her lungs were continually collapsing and surrounded by fluid. The doctors prepared us for the fourth time, that her life expectancy was growing shorter by the day. Grandma and Grandpa Hillick continually drove from Canton to Cleveland to help with the boys and visit with Sarah.

At the recommendation of her pediatrician, Sarah started getting monthly infusions of IvIG - immuniglobulins. It was not making much difference at first. She started missing weeks of school instead of just days. After the fourth infusion, we started to note improvement. That August, she made it to her 10th birthday. We had a huge "Celebrating One Decade of Life" swim party and picnic. We invited everyone who had somehow touched Sarah's life in those 10 years to help us celebrate, but more importantly to thank them. Without Sarah, we would never have met so many caring, compassionate, and dedicated human beings. We were truly blessed with "our village" of people.

Once school started in the fall, she caught a virus and the downward spiral started again. Throughout all this time though, Sarah almost always had a smile on her face and she had developed a sense of humor that was infectious. Friends, teachers and her Girl Scouts rallied around her. It might be worth noting one interesting tidbit: Sarah rarely missed Girl Scouts. We had gotten comfortable with IV care and medication administration, so she would be able to attend meetings and field trips. Even some of the girls in her troop began learning how to give her breathing treatments and held the bucket when she was about to be sick, which was often.

By the Spring of 2000, Sarah had improved. Her episodes were becoming less frequent and she was starting to eat again. In the Fall she began 5th grade with a renewed energy. Then in February of that year, a tainted batch of IvIG product forced the Federal Government to close one of only two labs that prepared the monthly infusions that she was getting. They created a national registry and triaged who received the very limited supply. Sarah was marked a level three and each month the country was running out before completing the patients declared a level two. We helplessly watched her detiorate before our eyes. As her 5th grade year was coming to a close, I made arrangements to take her to school in a wheelchair, oxygen tank and IV pole in tow, so she could say goodbye to her classmates. I feared she would not see them again. They prepared skits for her and a few girls had written special lyrics to one of Sarah's favorite Spice Girls tunes. A few measures into the song, I had to leave the room. The teacher followed and together we embraced and wept in the hall.

Soon after, we returned to the hospital. After painfully watching Dr. Norr bury his head in his hands and say there was nothing more they could do, we asked to go home so she could spend her remaining hours in her own bed. About 3:30 am. her breathing became very shallow, her urine output had vanished and she was barely responsive to our presence. John and I knew it was time to wake TJ so he could say goodbye. We decided to let little Matt continue to sleep. As the sun was just starting to rise, I sat on the front porch with TJ, now 13 years old, cradeled in my arms like an infant. We both sat in silence, clinging to each other, simply trying to draw strength from our warm touch. Upstairs, John had fallen asleep in the rocker, holding Sarah in his arms.

Matt woke up at his usual early time not aware of how we had spent the night and went in to tell Sarah that a party was about to start. Their grandparents from Florida were going to be celebrating their 50th wedding anniversary in Ohio. And most important, her favorite cousin Adam was coming in from Miami. I had forgotten that Adam, Karen and Auntie Bonnie needed to be picked up at the airport. When I went in to tell John I was leaving, Sarah opened her little eyes just enough to insist she was going with me. We had purchased a van with OnStar to quickly connect in an emergency if needed, so I figured why not. Truthfully, I didn't have the energy to argue.

It is a good 45 minute drive to the airport and Sarah layed somberly still the entire ride. When she felt the van come to a stop, she mustered just enough energy to pull her head up so she could see out the window. She immediatley spotted cousin Adam coming from baggage claim. She jerked straight up in her seat and honestly in that one second I watched this weak, fragile, sick little girl, came back to life. We continued that night to admister her medication through her IV line, and steadily saw improvement. The next day, she was perky and ready to party. Yes, MIRACLES do indeed happen.

We still from time to time have a minor episode like the one she wrote about when she yelled, "Stop this ambulance." Looking back, I'm not sure how we survived those first twelve years, yet I wouldn't trade the trauma, the extreme highs and the lowest of lows, our near financial collapse, or the altering of our direction for anything. Sarah has touched so many lives in such a powerful way, it's humbling. Truthfully, it's an honor to serve as her mother, as her family.

Speaking of family, when TJ turned 16, he got a tatoo on his leg of the silver ribbon for disabilty awareness with Sarah's initials next to it. For Sarah's 18th birthday, he got another with her zodiac sign and her birthdate next to it. He has written paper after paper about Down syndrome and Sarah and has become the most responsible young man I have ever met at his age. Matt has learned to be sensitive and go with the flow. His best friend is wheelchair bound and Matt thinks nothing of helping him with personal hygiene issues.

About those Girl Scouts: the oldest one is a medical social worker at Akron Children's Hospital, one is a sophomore at Xavier majoring in special education, three are nursing students, one is studying to be a physical therapist and one is studying to be a music therapist. Do you think those career choices are By Chance or By Design? The tears I shead today are of pride and joy, knowing Sarah's legacy will continue, as all of these young women and her brothers are so much wiser, emotionally stronger and spiritually richer for having known her.


RK said...

Thank you, thank you, thank you for sharing this story!! Sarah, we love your pictures and your stories and we thank God you're here to share them with us!! And Mom, thank you for working so hard to keep this precious girl, an example to my daughter, alive and well! Many blessings to your wonderful family...and those Girl Scouts too! :o)

Cammie Heflin said...

I so appreciate your story Sarah. I love reading your blog everyday and you are such an inspiration to those of us that have little ones with Down syndrome. You are amazing and so are your parents and brothers. :)

datri said...

Wow, what a story. Thank you so much for sharing. What an amazing life you've had and how many people have been touched.

Your mom is amazing, too!!

Lianna said...

Thank you. OMG, thank you to you both, all. You know, looking at you today, Sarah, I wouldn't never had guessed that you suffered as much as you did as a wee one. Your strength is amazing! *hugs*

JRS said...

Thank you so much for sharing Sarah's story. Wow. I have enjoyed getting to 'know' your family through this blog and learning this very important part of your journey has really touched me. Blessings!

Kristi Mantoni said...

What a truly touching story. Thank you for sharing that. I too love seeing your pictures. I look forward to seeing many, many more!

sheree said...

WOW! That was a heck of a story and I thank you from the bottom of my heart for sharing it with us. I am so gratefule for people like Sarah that show is that miracles do happen!

Melissa @ Banana Migraine said...

What an amazing story! Wow! So glad to have you blogging, and having your mom help share your story. You are so strong!!

Lisa said...

I've been following your blog for a while now and have all along been so full of admiration for the beautiful, strong young woman you are, Sarah. I'm even more in awe now after reading your story. You have an amazing family.

Kelly said...

Sarah, you rock! You have a great blog and I plan to visit it often. I hope you don't mind me directing a few people over here, I'm going to let everyone know what a firecracker you are!

Thanks to your mom for her inspiring story too. I used to live in Hudson, OH. I miss it.

Michelle said...

Wow. I'm so overwhelmed, reading Sarah's story. Sarah, you are such an amazing girl. Your family seems pretty awesome, too. I really enjoy reading your blog. Thank you for sharing so much with us!

rylie's mom said...

What a miracle! What a wonderful family and friends! Thank you for sharing this story.

Cleo said...

Sarah, thank so much for sharing your amazing story!!!. I admire your beauty, wisdom, brave spirit and determination, you are such an inspiration. God Bless ~

Anonymous said...

Sarah, I have been following your blog for a few weeks. After I read your story today, I went back to the beginning and re-read all your posts because you really are an amazing young lady. I love the part about your brother's tatoos. Your Girl Scout friends sound very special too. Are we going to get to meet these GScouts?

SunflowerMom said...

wow, what an amazing story! Sarah you are so strong! God definitely has his plans for you, you have touched so many lives and spread your strength to them. You have a wonderful family, too. I can't imagine facing the thought of losing your child so many times.

JennyH said...

Sarah you are such a blessing and a strong lady! I loved hearing that story from your mom.

Terri said...

Sarahm I have been reading and enjoying your blog for a few weeks now. You are an amazing woman and a true inspiration to those of use who have little ones with Down syndrome.

Mom, you are one tough cookie - big HUGS to you.

Kimberly said...

Thank you for sharing such an inspiring story. To be honest it gave me the chills. I love hearing about all of your fall memories. You are truly an inspiration!

Michelle said...

oh my goodness what a story! Sarah you are certainly a fighter to beat so many medical odds that were stacked against you! To your mom: I had tears in my eyes reading about the night you thought was going to be Sarah's last; I can't even imagine all your family went through. Thanks for sharing your story.

Kele said...

Combing your blog and came across this, tears are pouring down my face, literally pouring. Sarah, and mom, I must say, your words touch me immensely. 2008 has been a trying year for my family; myself, my Presley, my husband and our other children, Mikah and Jett. I have often wondered what Presley's life and diagnosis, will mean for Mikah and Jett's life, reading this post and about Tj and Matt, I am given so much joy and hope. Thank you so much for sharing your story.