My Name is Sarah
Sunday, January 31, 2010
This time I knew we were heading to an emergency room. So I started to prepare. Packed a small bag for me and one for Sarah. I took a fresh shower at 4:00 in the morning knowing it would be a few days before I had another. I even posted on Facebook that I was just debating which ER to head to. With our new insurance we can go to any of the three in the area. I decided I would stick with the Cleveland Clinic as I know the layout and the nurses on the peds floor are great. But the area late at night is not the greatest, so I decided to wait until daylight if we could.
When I went in to get Sarah prepared early Friday morning, something happened that has never happened before. She indignantly, flat out refused to go. I was taken a back. Now what do I do? She is twenty years old. I explained to her that she just needs some oxygen to help her breath. Her response in between labored gasping, "I do not need oxygen. I am not a baby." Now what? I tried reasoning with her, reminding her of past acute episodes and how much better she felt with the help of some IV steroids and oxygen. "NO," she screamed, "I am not going." So I left her bedroom. Maybe a few minutes to think about it will help.
About that time the doorbell rang. It was the UPS man with a delivery from our mail order pharmacy. Inside was a box of QVAR. For years Sarah used this inhaler, until it did not seem to be doing any good. When we saw Dr. Norr last week, he suggested that we try it again. Perfect timing. I went upstairs and Sarah willingly took two puffs. I decided to wait an hour or two to see what happened. No change. But then, QVAR is not an emergency asthma medication. I continued to give her Albuterol and tylenol suppositories to try to bring the fever down. Each time I was in her room, I tried to convince her to go to the hospital. And each time, she refused.
I decided my only course of action was going to be calling 911. I even got the camera in position to take a few snaps of the hunks in uniform scooping Sarah out of her bedroom, figuring it would make for a great blog post. Sick humor I know, but for those with medically fragile children, you understand. Then Sarah fell asleep. So I took a nap, something I learned long ago. I call it hospital survival 101.
Friday came and went. Saturday morning I got up really early to run to the office to distribute payroll then come home to head to the ER. While I was gone, John caught Sarah in the bathroom self medicating with the QVAR. We are not sure how many puffs she took. I went searching online to see if one could overdose on QVAR. Not likely. She was ghost white. Her eyeballs were gray. She was burning hot. Totally lethargic. But her breathing was more stable. She was still drinking little bits of apple juice but has not eaten since Thursday. Her lips are cracking. All cues we watch for, in determining if the big crash is imminent.
John and I sat down and discussed what to do. Should we force her into the car? Should we call 911? In the past, there was no question we would have been to the ER by Friday. But now, we felt we had to also listen to Sarah. But do we? I am her court appointed guardian for healthcare matters. That carries a responsibility. One that if not handled properly, can have legal consequences. We are stuck in the middle of a medical dilemma. We decide to wait a few hours, unless she seems worse. Then we will call 911.
I stayed up most of the night checking on her. She seemed no better, but no worse. Matt had a soccer game at 8:00 this morning several counties away. So John and he left around 6:30. I went to bed for awhile. Actually for several hours. I'm finding this fifty year old body can not pull the all nighters like it once did. When I awoke, I was a little panicked. The house was quiet. I lurched to Sarah's room. And this is what I found...
Ms. Carma Chameleon has done it again. She has pulled herself through. She was cool as a cucumber. Breathing is fine. Color back in her checks. Eyeballs are nice and white. And she is singing her song along with her iPod. The one she should have performed, on stage, at her music therapy share night on Thursday.
Saturday, January 30, 2010
I love this award. Kristen sent it to me. The Happy 101 Blog Award Rules are as follows: List 10 things that make you happy, try to do at least one of them today, and tag 10 bloggers that brighten your day.
Here is my list in no special order:
1. Pepperidge Farm baby goldfish and Mott's apple juice
2. Gilmore Girls, Seventh Heaven and Full House DVDs
3. anything Disney
4. working at the nursing home
5. Ridge my horse and Doug my lead volunteer
6. Lisa, Stacy and Julie my bff's
7. my apple green laptop and matching iPod
8. music therapy with Bonnie
9. Target cards
10. all my little bloggy friends
I am not so good at tagging and linking back, so I would like anyone who reads my blog and likes those cute cupcakes to grab it and run with it. Let's spread a lot of happiness today.
Friday, January 29, 2010
Thursday, January 28, 2010
Today I learned from Renee at Life with my Special K's that she has indeed found her forever family and will also be coming home with a new sister from the same orphanage. It is certainly a happy day. Vivienne's new family has other adopted children, so they understand the process. Unfortunately, it is not quick or inexpensive. They need our help. If you are in a position of making a donation, they are all set up on Paypal. Just clink on this link that will take you to their blog to help financially or simply to read about their journey.
Wednesday, January 27, 2010
Monday, January 25, 2010
I was referring to my Girl Scouts of course. I don't really have 42 daughters, but I always looked at my troops of Scouts as my daughters, 22 Juniors plus 19 Daisies plus Lisa equals 42. As time quickly flew by, they grew up. Before I knew it, they were packing for college, or settling into full time jobs. Sadly, I recognized that I would likely loose track of most of them as they headed off to different parts of the country.
I was wrong. Enter Facebook. Imagine how excited I was to open Facebook last week and have Happy Birthday messages waiting for me from many of them. Yes, my "Girl Scout daughters" have friended me on Facebook. I am honored. I rarely respond to their daily status statements for fear of embarrassing them, but I love keeping up with what they are doing. They are all working hard to pursue their dreams. I feel like I had a tiny part in helping along the way and that makes me happy.
If that wasn't enough, I went to the mailbox and found this card...
Here is just a snippet of what Lisa sent to me:
I read your blog segment on Sarah's page last night and just wanted to send you a note. First of all, I am so sorry about the struggles you had to go through these past few months. People truly do not realize the pain they cause others with their words. I was however so inspired by what you did to examine yourself...the steps you took, the risks (as many of them were probably difficult) that you engaged in, and the soul-searching you did. You have always been such a constant in my life over the many years and I have always treasured the advice you have given me and the time you have taken to listen. I want you to know that I am here to do the same for you if you ever need it...
Of course I wept while reading it. It is so well written, so mature, so natural and such a beautiful message. While it's true that I may have only one birth daughter, who in the eyes of others may have limitations, I have been deeply blessed to have been given the opportunity to be involved with other girls. I started out in a nurturing role when they were young, then I moved to facilitator as they assumed more of their own leadership and now they are helping me. If I were ever to see that woman again, I would like to tell her about my circle of life, my 42 daughters and how grand my journey has been.
Sunday, January 24, 2010
Saturday, January 23, 2010
Friday, January 22, 2010
Thursday, January 21, 2010
hmmm, does the scarlet and gray plaid give you a clue where I might be? Oh maybe the rug I am standing on will help?
Wednesday, January 20, 2010
Then you might remember my post a while back about the IviG infusions that I was getting when I was really sick. Dr. Norr came up with that idea.
Here are a few pictures from that post.
Tuesday, January 19, 2010
To be so strong that nothing can disturb your peace of mind.
To talk health, happiness and prosperity to every person you meet.
To make all your friends feel that there is something in them.
To look at the sunny side of everything and make your optimism come true.
To think only of the best, to work only for the best, and to expect only the best.
To be just as enthusiastic about the success of others as you are about your own.
To forget the mistakes of the past and press on to the greater achievements of the future.
To wear a cheerful countenance at all times and give every living creature you meet a smile.
To give so much time to the improvement of yourself that you have no time to criticize others.
To be too large for worry, too noble for anger, too strong for fear, and too happy to permit the presence of trouble.
Monday, January 18, 2010
The truth though, I was really looking forward to my 50th birthday.
For me it symbolized a new beginning, the fresh start to the next half of my life. A few months back I identified January 15th, as the day I would be waking up, free from the previous pains that were plaguing me. If you are a loyal follower, you may remember that back in August I had a relative call me and say some very mean and nasty things about a blog post I had written. I understood the core message she was trying to relay, but she laced her tirade with some hurtful threats and tried to twist and manipulate my love for my husband into her demands. Although on an intellectual level I recognized that her tactics were that of a bully, on a personal level I had trouble shaking it. Her words were haunting me like a low budget horror flick.
Then other things started happening. Phone calls, emails, and text messages until one day I just had enough. Something had to change. As a person trained in social work, I know there is really only one person you can change. Yourself. So I rolled up my sleeves and got to work. I talked to professionals, clergy, friends, other relatives, and of course my husband and kids where appropriate. I studied research journals, twelve step programs and self help manuals. I joined an online woman of faith support group and read the bible. I also read your blogs. Many of us as it turns out, have the same type of struggles.
What I discovered during this process, has been truly life enhancing. Over the years I have engaged in many different workshops and instruments that helped me identify what my personality and work types have been in the job environment, but never on a personal level. I'm not sure why I did not embark on this self discovery process years ago, but then again, I probably was not ready. I will say that it has been the most uplifting thing I have ever done for myself.
I am going to share some of what I have learned that might be helpful to others. If not today, then like me, one day in the future. I am going to start with a story that you may have read before. I have had it neatly tucked away for years and from time to time I would read it. As I began this journey there was a sentence near the end that became very important to me, almost like a mission statement.
So I now have it prominently displayed on the white board in my creative studio with one of my favorite photos of Sarah and me. It is one of my favorites because it was taken at a fashion show that my mother worked hard to organize. For many years she was on many different boards and committees in her home city that supported individuals with Down syndrome. Sarah's health did not often allow us participate in her activities, but this one May, we made it to the mother/daughter tea.
On this 50th birthday, I recognize once again that I have been given a gift so great in Sarah. I have seen the ignorance, the cruelty and the prejudice and I have been allowed another gift, the ability to rise above them. I am grateful.
Sunday, January 17, 2010
Saturday, January 16, 2010
She received this letter in the mail from AARP. She was not too happy about that. Then she went to buy a new pair of cool boots and she came home with fur lined granny boots. If that wasn't enough, she bought a box of new vitamins for 50+ advantage.
But things were about to take a turn for the better...
Friday, January 15, 2010
Thursday, January 14, 2010
...Go ahead, give it a swing. For all you friends and foes, yes that does include family, who think it is your right to punch me anytime you feel like it, go ahead give it your best shot. What the heck, this is the last call, so go ahead and take two or three more swings. If it will make you feel better take a few more...Are you sure your done? Ahhh...come on...you can punch harder than that...I know you can...I've been feeling it for years. Come on...wind it up and let it go...
Wednesday, January 13, 2010
...I informed my grandmother, Sarah's Great Grandmother that Sarah indeed did have a heart defect that would require open heart surgery. It was a bittersweet moment for me. I had been dragging Sarah from pediatrician to pediatrician trying to find someone who would listen to me. In my gut I knew something was significantly wrong with her, Mother's intuition I suppose, as I had no formal medical training. The first three sent me on my way dismissing my concerns as a new, young mother grieving over a child born with a disability. They told me I needed time.
Yet in reality, time was our enemy. Each passing day, Sarah was growing weaker and weaker. Her little body was working so hard to just stay alive and we didn't even know it. Looking back, I wonder how much longer she would have been able to survive. How many more breaths would she have been able to take? I will never, ever forget the eve of January 11th. It was my turn to pick Sarah and TJ up from Kiddie Company. When I walked into the infant room, she was laying in a little baby carrier on the floor. She looked more like a plastic baby doll than a human infant of five months.
I was tired. It was bitterly cold outside. I wanted to go home and curl up in bed. Instead, I dropped TJ off with John at the house and continued on with Sarah to a Kaiser facility in another county. I had not taken her to the urgent care before, but something, someone, a higher power I believe, directed me there that evening. First the nurse took her vitals, then listened to her heart. She hastily left the room and returned with the doctor. He looked at me, introduced himself as Sig Norr then looked at Sarah. He went straight for the stethoscope and placed it under her tiny flowered shirt. He kept it there longer than the other pediatricians had, painfully long in fact. He slowly raised his head, and said, "I'm sure you know she has a heart murmur, quite significant." I began to feel light headed. I was glad there was a chair behind me.
As I sat, he told me what he heard, asked me some questions about her feeding and activity and then said he felt she needed to be transported to the hospital by ambulance, immediately. It was late. I asked if I could take her there myself in the morning.
On the 12th of January, Sarah and I entered the vast Cleveland Clinic campus. We were whisked back almost immediately for her first echo where the cardiologist confirmed a huge VSD. Sarah did not just have a hole, she was missing almost the entire wall. There was no question that she would need surgery, very soon. But her little body was in distress and surgery was risky. Her lungs were not in good shape. He wanted to try a few medications for a few weeks to see if we could build up her strength, even just a slight improvement would help.
The next day, January 13, 1990 I phoned my grandmother in Unadilla to give her the news. She wrote in a journal that day, Open Heart Surgery for our Little Princess!!
I did not know about this journal for many, many years. Sarah was a teenager when it was presented to me. On the left is a picture of me with my grandmother when I was about six or seven. She loved to write. I remember when I would visit in the summer, she had several journals going. Some more serious than others. Sometimes she would let me read them.
There are so many things I appreciate about this specific journal titled, Sarah, Little Princess. First, it gives a time line to Sarah's surgeries. I did not think to do that. One of my few regrets. It also is a beautiful portrayal of the feelings of a Great-Grandmother residing a few hundred miles away in New York. A woman living alone, having lost her beloved husband Fran, a few years earlier to cancer. It shares how she copes through a roller coaster of emotions both having a great granddaughter with Down syndrome and her massive medical ordeals.
My grandmother left this earthy life a few years ago. Toward the end, her memory was failing. On our last visit she recognized me, but thought for sure I was the young girl in the picture above. She talked about life many, many years before I was born. She told me she always dreamed of being a writer. But her family was too poor to allow her that luxury. She just wanted her words to be published. So beginning today, they are.
Note: I will continue to publish her writings throughout the next few months on the dates of her entries.
Tuesday, January 12, 2010
Monday, January 11, 2010
The truth is though, Sarah found the box on December 11. That's right. Not last week, but one month ago. So why did we wait so long to write about it? Because she wanted to take it to show Ridge, her horse, first. But the next Saturday it was too cold for horse riding. Then the following Wednesday, TJ called me at the office to inform me he helped Sarah with a breathing treatment when she got off the bus. She was struggling, but not so bad that I needed to come home immediately. Both my boys are well conditioned to the difference between when Sarah needs a little help and an emergency.
By the time I got home, the fever had started and the gray tinge to the eyeballs. Clear signs an asthma episode is brewing. So we begin to follow the yellow zone plan on the asthma protocol sheet. I dig a little deeper into the medication drawer, double up the Albuterol, and line the bucket in her room. And then we wait.
That's when I feel like I start to play the game of Roulette with Sarah's life. Just when do you hit the emergency room? Do you go immediately? Wait until after midnight when the waiting room is quieter? Wait a day or two to see if it will pass. Knowing if I wait too long, I risk the airway closing. I'd prefer to not repeat our incident a year ago February when I needed to perform rescue breathing in the back seat of my car. But we also hate the hospital and this year we have to worry about contracting N1H1 while in there. It could be deadly for Sarah.
Still, I thought for sure this blanket would be going to the hospital in December. I had it ready along with the camera. But something amazing happened. Sarah managed her asthma episode like a pro. She coughed when she needed to. She spit out that thick mucus before it was aspirated into her lungs, thus likely preventing the usual pneumonia. She told us when she felt like she needed another treatment. She continued to drink fluids to prevent becoming dehydrated and she ate, not much, but enough. Christmas came and went. So did New Year's and the Rose Bowl. On the 4th, she went back to work.
Twenty Years. That's how long we've waited for this. Or maybe I should say we have been practicing for twenty years and the real game has just begun. One thing's for sure, we are getting closer and closer to that finish line every day.
Sunday, January 10, 2010
Time for the show to begin.