Category: family

We had a memorial service for my Mom today. Under normal circumstances, I would not photograph such a thing. Or post my speech here. But Mom had an extensive network of on-line friends, so I am posting this here for their benefit.

The service included a song from a member of Mom’s church, “The Rose” and “How Great Thou Art” performed by my Aunt Bertha (Mom’s sister-in-law), a song performed by my sister-in-law, Sharen, my speech, and the Pastor’s message. It doesn’t sound fancy, but it was lovely. Mom would have been very proud.

Below is the text of the speech I read during today’s service…

Shock is the first word that comes to mind when speaking of Mom’s passing. As sick as she had been throughout the years, no one, even her doctors, expected to lose her when we did. Yes, she’d been in the hospital. But she seemed to be improving. She was happy and in such good spirits during her final days. No one expected her not to go home.

But then, Mom always did like to surprise people. She was a very thoughtful person who loved doing stuff like sending people cards and little gifts. She put a lot of thought into things she could do for people or give to people, and was always tickled to hear that she had surprised someone. She loved doing the unexpected. I cannot count how many times she said to me and others, “Were you surprised?”

She was a master of saying and/or doing stuff to throw people off.

There’s a verse on my mother-in-law’s wall that says, “Contentment is not having all you want, but being happy with all that you have.”

And I think it’s safe to say, other than the myriad physical problems she’d suffered with in recent years, Mom had been very happy. She had a fabulous husband who she’d been married to for 53 years who took wonderful care of her. She had children and grandchildren that she loved. And of course she had her cat, Sylvia.

Speaking of Sylvia… Mom’s dear friend, Pat, sent her a stuffed cat while she was in the hospital this last time. Not just any stuffed cat, but one that looks just like her beloved, Sylvia. Mom was really tickled with that gift. She told everyone about the cat and how much it looked like Sylvia. It didn’t take much to make her happy.

She wasn’t thrilled to be in the hospital. But, anyone who saw her or spoke to her on the phone remarked that she seemed to be in better spirits and sounded healthier than she had in months.

She told me many times over the years how, when it was her time to pass, she wanted to go quickly. She did not want to linger, stuck on life support. She didn’t want your typical multiple viewings and fancy funeral, either. She just wanted it all to be done.

I believe she knew her time had come. She’d been so miserable over the past year or so, I think she was relieved to know the misery would be ending. Not only were eternal peace and good health close-at-hand, she was going to have one last chance to surprise everyone.

It sounds weird, I know. But looking back, there are many small things to support this theory. Like how she’d begun giving my Dad little lessons on how to pay bills and balance the checkbook, a chore that had always, even in her sickest times, been hers. How she’d gone through her phone book and added notations like “good friend” next to various names. How she’d said over and over recently that, no matter what, she was going to be at Eric’s wedding and Josh’s high school graduation.

That last statement is the only thing that could disprove my theory. But, when I mentioned the wedding to Kelsey, Eric’s fiancee, she said without hesitation, “Of course she’ll be there. Just because she isn’t there physically doesn’t mean she’s not there.”

Of course she’ll be there. Looking back, I think all that time Mom had been saying she won’t ever really be gone.

Sometimes I didn’t listen as closely to Mom as I should have. What daughter does? As much as I loved her, sometimes she made me absolutely crazy. I think that feeling was mutual. Especially in my younger days, I was not the easiest child to raise. If you knew Mom during my childhood, you probably had more than one conversation with a “what do I do with this kid” theme.

But I turned out okay. She wasn’t exactly thrilled when I got pregnant, but she sure did love her grandson. And she didn’t hesitate a bit when I asked if Eric and I could move in with her and Dad.

They never had much extra money, but Mom was always very giving. She was never stingy financially, and, when she was healthy, gave as much of her time as often as she could. She was always active in school-related functions when Tom and I were young. She spent many years in the PTA. She even served for a time as PTA President. She was quite active with Tom in Cub Scouts and Boy Scouts, too. I even remember her being a Brownie leader. Which is really remarkable when you realize I was only about four at the time and not even old enough for Brownies.

As crazy as we made her while growing up, she was quite proud of us kids.

She was always bragging about Tom, who retired from the Navy after 23 years. And who continues to work very hard even after retirement. She was very proud of him and really cherished their time together. She enjoyed the visits with Tom and his family in Virginia, especially when they went boating. She especially enjoyed traveling the country in Tom’s RV back in 2010 with Tom, Sharen, Josh, and Dad. It was the trip of a lifetime for her.

She also liked telling people about me. Over the years, she and I enjoyed many road trips together. Whether they were day trips or overnight jaunts. We’d go out to lunch, and shopping. We’d visit family and friends. Sometimes, we’d just drive. It was fun. I can still hear her saying, “I don’t know how you know your way around like you do.” In recent years, when her health had deteriorated too much for stuff like that, she enjoyed reading my blog and seeing my photography. She often shared links to my posts on Facebook. She even told her doctors about my blogs.

I almost wish I had an overhead projector here to showcase the many photos that tell her story. If you haven’t looked already, please take some time after the service to have a peek. They are roughly in chronological order. You can clearly see the progression of her disease from the time she was diagnosed in 1993. The disease which ultimately stole her from us is Scleroderma. A chronic and rare autoimmune disease of the connective tissue, which causes tissues to become hard and immobile.

Scleroderma literally means hard skin, but there are two forms of the condition: localized and systemic. Localized scleroderma primarily affects the skin. Systemic scleroderma affects the skin and internal organs, such as the esophagus, lungs, kidneys, gastrointestinal tract, and heart.

Mom suffered in varying degrees with all of that.

Symptoms of the disease may be visible, but more often than not, they are invisible. Because of that, scleroderma is very difficult to diagnose. It is also very hard for patients who look healthy. Often, no one believes they are sick. So when they complain of pain, or being cold, or having mysterious gastrointestinal problems, unexplained weight loss, extreme fatigue, general aches and pains, people don’t take them as seriously as they should.

Not only is diagnosis difficult, different treatments work for different people. And, just as there’s no known cause, there is also no cure.

Mom was quite vocal over the years telling people that she had scleroderma and doing everything she could possibly think of to raise awareness. She’d tell waitresses, cashiers, UPS drivers. Anyone who would listen, really. Sometimes, I’d tell her people don’t really want all of that information. She’d just dismiss me with her infamous, “whatever,” and continue her mission spreading the word.

She was even responsible for developing and selling two cookbooks to raise money for scleroderma research. One of her proudest moments ever was presenting Dr. Wigley with a check for the proceeds of those endeavors.

Mom spent an awful lot of time on the computer and had a very wide network of on-line friends. A few were perfectly healthy. Many had scleroderma, or had relatives and/or friends with the disease. Some had pulmonary artery hypertension, which Mom had also been diagnosed with during the past year.

It’s funny, we always thought she played computer games simply to occupy her mind. As it turns out, Pogo and Facebook games were one of the tools she used to reach out to folks. And she reached a lot of people.

Tom, Dad, and I contacted as many as we could over the past week. We called those we already knew and those she’d indicated as “good friends” in her phone book. We posted information on Facebook. We sent e-mails to people in her address book.

Calling her friends was one of the hardest things I had to do in recent days. Some of them absolutely lost it when I broke the news.

But making those calls was also a good thing. She had talked about her various friends all of the time. I know they meant a lot to her.

Until making those calls, I never realized just how much she meant to so many people. It was quite an awakening. Apparently, she inspired many people.

I wish I’d known while she was still with us. I would have listened more closely when she talked about those people.

When people leave us unexpectedly, we are left we so many “what ifs”?

What if I’d been more supportive? What if I’d visited more? Or called more? What if I’d been at her bedside instead of the waiting room when she passed?

Even her doctors have been asking themselves that question.

In addition to her many friends, Mom was also lucky to have a good team of doctors.

Dr. Wigley, her rheumatologist. Dr. Feeser, her internist, who is with us here today. Dr. Hassoun, her pulmonologist. And, most recently, Dr. Zakaria, her cardiologist. Together, they helped her manage her disease over the years, slowing or at least easing the symptoms of its progression.

I spoke to Dr. Wigley on the phone last Sunday night. Mom always told us she wanted to donate her body to the Scleroderma Center for research. Like everyone else, he was shocked to hear the news. Unfortunately, as Dr. Wigley explained, they were not able to use her body for research since the biology of the body changes immediately when someone passes. He went on to say, however, that Mom did more than could ever be asked of anyone while she was living, which was by far more important than anything her body could have taught them after she passed. She donated blood on multiple occasions, even though it was never easy for anyone to find a vein. She gave her tissue. She gave DNA samples. On more than one occasion, she told me about various student doctors coming in to look at her so they could learn more about diagnosing and treating others with that condition. One would think, as much as she had to see her own docs, the last thing she would want was some strange doctor or student to be poking and prodding at her, too.

But that was Mom. She’d made it her mission to raise scleroderma awareness. I don’t think anyone who ever met her did not at least once hear her say, “I have scleroderma.”

When she was first diagnosed, someone told her she might have about seven years to live. That was nineteen years ago. She was a fighter. Not because she was afraid of death, but because she had a job to do. There were people out there who needed her. People who could benefit from the knowledge she’d amassed over the years.

How do I know she wasn’t afraid of death? Because she died once already. In 1963, while giving birth to my brother, there were severe complications. Afterward, the doctors explained to both parents that Mom literally had died, but they were somehow able to bring her back.

That’s one story Mom was careful with telling. She always said she’d remained aware during that period. She’d been in the proverbial tunnel, heading toward the light, when an angel stopped her. She could see a profusion of beautiful flowers and lots of butterflies at the end of that tunnel. She REALLY wanted to see that garden. So she pressed on. The angel wouldn’t let her pass. “You have to go back,” the angel said. “It isn’t your time.”

Ever since, Mom always had a special place in her heart for flowers, butterflies, and angels. She was very proud of her flower garden, and chose plants known to attract butterflies. Hummingbirds visited often, too. AT least they used to. On Sunday morning, Dad and I chatted, trying to pass time as we waited for word from the doctors. They hadn’t seen any hummingbirds in their yard for months. He couldn’t understand why.

But then on Sunday afternoon, wrestling with Mom’s passing as I walked up to their house, I saw a hummingbird on her huge butterfly bush. And I’ve seen a hummingbird at least once every day since.

Was it a sign that Mom is still with us? Maybe. It’s hard to say.

I have to admit, I’m not a particularly spiritual person. I’m not sure I believe in angels. Or ghosts. I tend to believe mostly in things that I can see.

The hummingbird was just a hummingbird, right?

Then on Monday, driving back to Dad’s house from Virginia, I saw Mom in my passenger seat out of the corner of my eye. If I turned to look fully at her, she was gone. If I looked straight ahead, she was back. Not a solid version, or even a visible thing, really. Just the vague outline of a presence. I knew without a doubt that it was her. Remember, she had always loved going on car rides with me.

It was odd. I’d been thinking of her, of course, but not in the sense that I expected a visit. Or even believed a visit to be possible.

Then on Wednesday, after being away for several days, I took my three dogs for a walk around town. Mom had always enjoyed pictures of the new town. She liked hearing my stories about walking the dogs, seeing the different buildings, the people I encountered. I was bopping along thinking of anything and everything when I noticed the dogs in a strange formation. After not being walked for several days, I expected them to be bouncing and zig-zagging around. But they were calmly walking side-by-side, ahead and to the right of me. That’s when I noticed something out of the corner of my eye. If I looked fully to my right, there was nothing there. But, just like when I’d been driving, if I looked straight ahead, I could see her there. Again, I wasn’t seeing her as much as her presence.

The dogs continued walking diagonally in front of me at our normal, fast pace. Several blocks later, I heard her laughter. It was faint, but very clear in my head.

“Look!” she said excitedly. “I’m walking. I’m walking!”

Moments later, she was gone.

I haven’t seen her again since. But I know both times she was there. And I’m pretty sure she sent that hummingbird. That’s her way of reminding him she’s not really gone. To tell him he can stop worrying about her. She’s no longer sick. She’s happy. She can do what she wants, when she wants. And she’s surrounded by people who love her.

The other day, the pastor came to visit us to make arrangements for today. He asked a lot of questions about Mom, her family, surviving relatives, relatives who have passed. He was gathering material for his sermon or speech or whatever it is you call these talks at a memorial service. He asked about hobbies and things she liked. One of the things we said was that she loved music. A bit later, he asked what she was good at. Since she loved music, he asked if she was good at singing. Tom, Sharen, Josh, Dad, and I all said, “Uhhh…” at the same time. It was pretty funny.

Our family always shared a lot of laughs. In good times and bad. Mom and Dad were always funny together. I’ll miss hearing him yell, “Delores, your youngest daughter is on the phone.” He was always teasing her. I can still hear her say, “Oh, your father!” Mom had a goofy streak, too.

But back to her singing. She’d never been a very good singer. But she tried. She was tone deaf, but loved to sing. She sang to Tom and I when we were babies. She sang to Eric. She sang to Josh. She did her best because music and singing are something she had always loved. It, along with her love of books, is a passion she passed on to me.

We asked Aunt Bertha to sing today because Mom always loved her singing. But something told me I should sing today, too.

Trust me when I say, I am no performer. I sing in my car and when folks aren’t around, not in front of people. But this little voice keeps telling me to sing. If I don’t make it through the whole song, Aunt Bertha will take over. Since Mom always loved Elvis Presley, I decided to sing her favorite Elvis tune. Oddly enough, it’s a hymn.

[NOTE: Aunt Bertha came up and sang along with me when she saw how I was struggling to make it through the first verse.]

Amazing Grace, how sweet the sound,

That saved a wretch like me…

I once was lost, but now I’m found,

Was blind, but now I see.

 

Twas Grace that taught my heart to fear.

And Grace, my fears relieved.

How precious did that Grace appear

the hour I first believed.

 

When we’ve been here ten thousand years

bright shining as the sun

We’ve no less days to sing God’s praise

Than when we first begun.

 

Yea, when this flesh and heart shall fail,

and mortal life shall cease,

I shall possess within the veil,

a life of joy and peace.

 

Amazing Grace, how sweet the sound,

That saved a wretch like me…

I once was lost, but now I’m found,

Was blind, but now I see.

– – – – – – – – – –

Bye, Mom. Thanks for being such a good Mom. Feel free to stop in and see me anytime. You are loved and will be missed.

 

We lost my Mom unexpectedly on Sunday.

She had been sick lately and in the hospital, but was doing well and was expected to be coming home soon. Although she’d been fighting scleroderma for 19+ years, as well as pulmonary artery hypertension, her passing caught us all off-guard.

She was one of my most-faithful blog readers. Even if she didn’t comment on the blog often, we often talked about my posts.

That anniversary party was one of her happiest moments. She was quite proud of the fact that she and Dad had been married for 53 years. And she was not at all happy to spend their anniversary in the hospital. She was so looking forward to being released so they could go out to dinner together…

Mom wasn’t shy at all about letting everyone know what she was up against. Scleroderma is a rare disease, so she talked about it often to make people aware. Knowing she would want her vast network of on-line friends to know the details of what happened, I posted the text below on her Facebook page.

Mom landed in the hospital after experiencing a heart attack on Monday, August 6. She did not even realize she’d had a heart attack until late Tuesday night (August 7) when blood work done during a routine visit on Tuesday morning with her rheumatologist alerted the doctor. She went to Johns Hopkins Bayview Campus on Tuesday night. By Wednesday, doctors realized she had some blockages around her heart, which needed stents.

She was transferred to Johns Hopkins’ main campus for the stent procedure (via cardiac catheterization). Three stents were successfully placed on one side. The plan was to wait a day or two and then go back in to place a fourth stent on the other side. There were issues with some of her blood counts, which caused the stent procedure to be delayed. They didn’t want to release her before doing that procedure. However, after several days and several delays, they realized it was an iron deficiency causing the odd blood fluctuations.

Doctors decided to give her the iron she needed, send her home until that leveled out, and then re-admit her for the final stent. She was actually in great spirits. She looked and sounded better than she had in months.

Then late Saturday night into early Sunday morning, something went terribly wrong.

The doctors are not entirely sure, but believe it was either reflux or something else aspirated into her lungs, which caused enough stress that it caused a cardiac arrest. They worked on her for about 90 minutes. For a long period, CPR compressions were the only thing keeping blood flowing to her brain.

Against all odds, she fought her way back and was relatively stable. She had a breathing tube in so couldn’t speak, but was responding with gestures to questions being asked of her. It was clear to the nurse that she was aware. The nurse let her know her family was in the waiting room, anxious to see her.

Blood drawn during the event indicated another blockage, which had to be addressed. They took her down to the cath lab and were just about to prep her when she crashed again. This time, they couldn’t bring her back. We never got to say goodbye.

As horrible as it is to lose her, for her sake we’re glad it went quickly in the end. She’d had enough. Her health had been slowly deteriorating over the past 19+ years, with the last year or so being her toughest.

It was always Mom’s wish to be cremated and keep the farewell as simple as possible. There will be a memorial service on Monday, August 27 at 12:00 PM at Rosedale Baptist Church, 9202 Philadelphia Road, Baltimore, MD 21237. As much as she loved flowers, Mom always said she would prefer contributions be given in lieu of flowers to The Johns Hopkins Scleroderma Center, 5200 Eastern Ave, Suite 4100, Mason F. Lord Building, Center Tower, Baltimore, MD 21224. Tel: 410-550-2003

Donations can also be made on-line at https://jhweb.dev.jhu.edu/eforms/form.do?formId=11950.

This is the last photo I have of my Mom and I together. It was taken in late-June. I actually wrote about that visit here.

She really enjoyed that visit. As did I.

I love you, Mom. You’ll be missed.