Immortality and Legacy

14 01 2012

Immortality on this earth would be something I would gladly choose if I could stay the way I looked at 25 years old forever with the wisdom of who I am now. It would be sad to see family and loved ones die, but despite my incredibly dysfunctional first half of my life, it’s been a blast. There was so much more I want to do. So many careers that take many years to learn. So many arts to master. So many places to visit. So many people to meet.

Me around age 27

Hilda at age 25

Knowing this was unrealistic in at least my lifetime, I had the next best plan. I was on my way in my youth to becoming the first Air Force woman combat fighter jet pilot, who was also a medical doctor, who then applied to the space program and became the first woman astronaut who flew the Mars mission or lived on the moon base. Then I would work in third-world countries where I would spend the rest of my years eradicating the diseases of the world, of body, mind and spirit, where in my spare time I would learn about people’s religions and cultures as I moved from village to village all over the world. I had no desire to get married. The children of the world I would informally adopt. I had a strategic plan to achieve all that. I wanted to find a way to eliminate poverty, to free the world of prejudice and hate. I wanted to be a blazing comet that set the world on fire, a world that would remember me for leaving it a better place before I departed. But as a teenager with a strict plan, you don’t plan on curveballs.

Hilda at age 25

In 2011, I had an unusual number of friends pass away. In October, after one of them passed away, I became more acutely aware of the need to be more proactive in some of my friendships I had neglected. Although we were in contact by email, phone and Facebook, my friend, Diane, had become unable to drive. Since 2009, I have wanted to drive over to Channelview to meet her for lunch, but my health was not good and I found myself too busy fighting with school districts to take what seemed like a very long drive (I thought it was closer to Beaumont for some reason) to see her. I knew the holidays were coming. I barely had time to schedule a kidney biopsy in the month of December before the year ran out. I promised her that after the holiday madness was over, we would pull out the calendar and figure out which weekend she was on call and which weekend I was on call and get make a date for the one of the other two weekends (we both worked for the same company, her since 1993, but I had known her since at least 1989 or 1990).

She celebrated her birthday on Thursday, January 5. Although I knew that she loved Hoops & Yo-yo from Hallmark, I wanted to surprise her with something else and got her a Darth Vader card. Then it occurred to me that I did not know if she had even WATCHED the Star Wars movies. Having confirmed she saw the first one that was all she needed to know to understand the card. Thursday night I became unwell. Saturday an email awaited me. I was in bed until Monday afternoon. At 3:20 p.m., I scanned through my emails upon which time I saw the email that let me know my friend, Diane had died on Saturday.

Diane was a star in the sky. She lived in this area all of her life. She had a huge family. She was many things to many people–mentor, educator, teacher, sister, daughter, aunt, great aunt, and friend. She talked about her nieces and nephews and then great nieces and nephews with such love and pride. There were so many of them, it was so hard to keep them straight. I knew Diane before I got married to my husband. She was there when I got married, when I got pregnant and miscarried, when I got pregnant and had Patrick, when Patrick was diagnosed with autism, my journey with that. She was my ear, a person I vented to, my cheerleader, Patrick’s cheerleader. Once she got on Facebook, I talked to her more than my own sisters. In the past 2 years with Patrick at his new private school and the huge progress he was making, she “liked” every comment, and on some left “woo-hoo’s” and some beautiful notes that would make my heart either swell with pride or my eyes swell with tears of joy.

Brandy & Diane

She had a fierce sense of humor. As diabetes kept claiming more parts of her slowly, there came a point where a toe had to be amputated. She made jokes about it. She said, “Asked the podiatrist to trim my toenails but also asked him if he’d give me a discount since I now have only 9 toes. Actually he didn’t charge me anything as I’m still considered seeing him for surgical followup. Anyway, thanks for thinking of me and for the beautiful plant and for just being you.”

She knew, too, that my birthday is on St. Patrick’s Day. However, on February 17th, 2010 I received a birthday card (I think it was an e-card). I emailed her at 1:12 p.m. and said, “Thanks for the birthday card. The words I need to remember because in 20 minutes I’ll be at Patrick’s school. Just one teeny, tiny thing. It’s not until March 17. St. Patrick’s Day. But I will take it as a divine-inspired intervention that I need to be polite to these people today, don’t necessarily have to cave-in, but they aren’t to blame for the director being a bully. They are going to unfortunately be her victim as well if no one can get control of his individual. Think good thoughts. My stomach is in knots. I feel like I want to puke. I imagine I’ll be shaking uncontrollably by the time I come home.” At 1:34 p.m., an email arrived that said, “After I sent it, I realized it wasn’t St. Patrick’s Day yet! Maybe I just needed to tell you I was thinking of you?? Love, Diane.” We had many letters of correspondence like this.

For 45 minutes on Wednesday, people got up and shared perhaps 1 story they had about Diane. Or just stories in general. I didn’t realize we were going to do this so I was ill-prepared. For most people, they had people laughing. After 4 days of rain and flooding, Wednesday was 70 degrees and beautiful; the next day would usher in below freezing temperatures. If you were going to have to say goodbye to a treasured loved one, Wednesday was the best day to do it.

Diane’s niece Brandy did not recognize me until I said Patrick on Diane’s Facebook page, and then knew immediately who I was. Of course! That is why I am PBMom. I’m Patrick Bowen’s mom. (People always think it is Peanut Butter Mom).  But we immediately recognized each other when I entered the funeral home.

The entire drive home, I thought about my own inevitable death, what people might take the time to actually come to a service, what would be said about me. After Jeff returned home, I sobbed in his arms, saying that I felt like I had failed in this life because I did not become what I had set out to be. Some things I let go of by choice; some things because there was no choice.

A fan rendering of a concert performance.

He did not understand what I was saying. He said he spent his whole life caring too much about what other people thought of him that he could care less what people thought of him when he died. And I sat there not understanding how you could NOT care. Isn’t that what our purpose here is? Aren’t we supposed to make the world better while we are here (and I’m not talking about political differences, but the benefit of humanity in the interest of humanity, like elimination of hunger, poverty, homelessness, illness, etc., not the ideologies of how to achieve that)? Aren’t we supposed to want to be the next Bill Gates or Steve Jobs or Louis Pasteur or Marie Curie? With our blood line ending with Patrick, and unless autism is cured, he is unlikely to become a father since he is unable to take care of himself, we have no one to remember the stories of us to pass down to future generations so we have to find other ways.

Hamman Hall, Rice University, 1986-1987? during my "steroid" days that gave me Cushing's disease.

I know what Patrick’s purpose in this life is. He has changed the hearts of so many. He has inspired at least 2 young people to want to be teachers. He was the reason why I started the first special needs ministry ever in The Woodlands in 1998-2005 at St. Anthony of Padua and because of that ministry and the people who came forward to help, so many people who needed help were helped. I often felt like I was being Patrick’s conduit but also a conduit of hooking up those people who needed help with those people who could help.

The next day, Brandy posted on my Facebook page that she was going through Diane’s things and found a picture of Patrick and a picture of Jeff and me. I misread the note thinking it was a picture of all three of us in the same picture, something that rarely occurs. She responded: “It was a picture of your son when he was younger. It looked like he was playing in the yard and then there was a separate picture of you and your husband that she had beside the picture of Patrick. I knew immediately who it was but, to make sure I flipped it over because she always wrote who was in the picture on the back and the age of the kids or the year that it was taken. She had it in her family album. It was in amongst pictures of her great nieces and nephews. 🙂 “I honestly felt Patrick had been invited to Jesus’ table for dinner because I knew how she felt about her nieces and nephews. I responded: “I knew Patrick was special to her, but I never knew that. And knowing the immense love and pride she had for all of you, that she loved him so much to place him among you all. Wow. I miss her SO much. Thank you for telling me that. My love and thoughts are with you all today. It must be so difficult going through her things.”

And I burst into tears.

Is being Patrick’s conduit, being known as PBMom, such a bad thing? No, it’s not. But I would rather be the one who figures out the puzzle that is autism and/or cures it so not one more family has to go through this. Or perhaps stumbles upon the fountain of youth where I can become immortal and go back and do all the things I originally planned on doing.

Patrick-- The PB in the PBMom

What do you hope people will say about you when you pass beyond your earthly bonds?





Matthew’s Gift

13 12 2011

I was told I was going to have great difficulty getting pregnant. Once my husband and I were married we started trying to have a baby right away. I was surprised when it didn’t seem to take that long; however, my baby had died secondary to complications of triploidy in utero in my 2nd trimester in August of 1993. One day I went for my regular doctor’s appointment and they couldn’t find a heartbeat. I had no signs that I had miscarried so it was quite a shock. On the autopsy, they determined he was male. We named him Matthew Joseph (Matthew because it meant God’s gift, and Joseph because that was Jeff’s dad’s middle name). In just a matter of 5 years previous to this, both of my parents died, along with my grandmother and several other relatives. This grief, however, shattered my soul; a piece of me died with him. I had called my church for spiritual guidance regarding customary funeral rites for a baby that was not baptized, or if a baptism could be arranged, but no one returned my call; I felt abandoned.

Although soured on organized religion after this, I still had great faith. I often spoke to Matthew, asking him if he could just send me a sign to let me know he was okay and he could hear me. I knew he was in heaven, but there is another level of you that wishes you could have a conversation with them. I never even had the opportunity to hold him. Touching my lower abdomen, I whispered goodbye, as a tear fell from my eye as they put me under anesthesia.

We planned to go home to New York that Christmas. In the early part of December, Jeff and I talked about snow and how lovely it would be to see. Jeff reminded me that Long Island rarely got snow, and even more rare on Christmas. Without thinking I said to him, “Matthew said he would make it snow.” I have no idea why that came out of my mouth, but inside me, I just knew it was true. Jeff gave me “the look”, the one that said I was setting myself up for heartbreak, but didn’t try to dissuade me too much, only to say, “Don’t get your hopes up.” I looked at him with an unshakeable faith: It…WOULD…snow.

Early Christmas Eve day, his family gathered and opened gifts. Seeing the children opening their packages was heart-wrenching to me. I had to excuse myself quietly to the bathroom multiple times so I could cry, but did not want them to know I was tearful because I did not want to sour their Christmas experience.

The whole week the weather person said it was going to snow, then it wasn’t going to snow, then it was going to snow, and the final word was “definitely no snow.” Still I looked at Jeff and said, “Matthew said it would snow.” He remained quiet, knowing how much my heart was aching. I think he was preparing himself for the emotional mess that ultimately was to come when it didn’t snow.

His sisters had gone out to their friends’ houses. His mother, father, Jeff and I were sitting in the den in the early evening. The den was connected to the garage. We sat there, watching something Christmas-related on TV. After hearing what sounded like the automatic garage door opening, we were expecting to see one of his sisters walk through the garage door into the den. We waited…and waited. His parents wondered what was keeping whoever it was that just pulled up from coming inside. I walked to the window to see if maybe they were outside. Instead I saw it was snowing.

I gasped. “IT’S SNOWING!!!!!!!!!!!!!!!!!!”

If it had only been me who heard the noise of the garage door supposedly opening, I might chalk it up to wishful thinking. Jeff’s parents heard it, too. Had we not heard that noise, I would have missed the snow. None of his sisters had come home and would not for quite awhile.

Without a coat and without shoes, I ran out of the back of the house and let the snowflakes fall on my face, and I whispered, “Thank you, my baby. I love you. Merry Christmas.” I looked at Jeff and said, “Now do you believe?” He burst out in tears, happiness mixed with grief. Jeff’s parents looked at us like we were crazy. When we tried to explain, we sounded even MORE crazy.

It seemed to be letting up and I yelled, “Keep it coming. We’ll be right back.” I told Jeff we needed to go get our coats on to come out here to fully enjoy the moment. All of a sudden, it started snowing more heavily.

If anyone has seen a large-flake snowfall, the snowflakes seem to silently hit the ground. There is a sense of peace, awe and beauty surrounding nature’s majesty. Even the air is different, soft, like a whisper.

We went inside, bundled up, put on shoes and proceeded to go for a walk around the pond. We had a good talk, a good cry, and a good laugh. Our spirits were renewed.

Midnight Mass had never been more beautiful to me than that night. Matthew gave us one of the best Christmas presents we had ever received. Regardless of the circumstances of his death, he was my child and his life was significant for the short amount of time I had the privilege to carry him. Even in his death, his life continues to have significance. And I will always be his mother. The boundary between life and death can never change that. He will never be forgotten. His spirit remains with us…always.





Acts of Kindness Part 2

24 11 2011

Back in 1998, when we were struggling to get Patrick to an autism program in Massachusetts that we hoped to be his best chances at recovery, kindness came from everywhere: Family, friends, strangers donated, held fundraisers, etc. to help us earn the money we needed (starting in July). On December 31, 1998, the day we left, we raised the final number we needed: $15,000. It was difficult for me to accept kindness like this, but I had to swallow my pride to first ask for the help, but learned to accept it with humbleness and gratitude. For many years, I had a web site on AOL (remember AOL Hometown?) where any one of the donors could go to keep up with their investment. After all, it was not only an act of love but an investment in the life of another.

PBFundraiser

My friend Jennifer's church allowed us to sell bear ornaments as a fundraiser.

During the course of having Patrick, my boss has done a tremendous number of things that I cannot name for reasons of confidentiality. Even though I don’t seem to be able to produce full-time work anymore, she allows me to stay hoping that one day I can get past my medical issues and produce at full-time or even part-time levels again. I do know that without the things she has done, our lives would be very different today.

Last year, I got another WOW moment to add to my top 10 kindnesses of all-time. I put out to the universe on Facebook that we had planned to go to the Adam Lambert concert but because every penny now was invested in that fabulous private school Patrick was going to, the results of which they had seen unfold right on Facebook, that if they heard of any contests to win tickets to please let me know. Instead, my friend Melissa went out and bought us not 3 tickets, but 4. She told us we had to take Patrick and gave us an extra seat to buffer ourselves from other people if necessary and a place to put his stuff. In the tickets, she also gave us spending money (for parking, presents, etc.) Melissa will tell you to this day she had never done anything like that and several times stopped and thought she was crazy for doing it. This kindness had “kindness” percussions. Going to the Adam concert led to know a certain person who would go on and help my son’s school during a fundraiser called Rock Autism, Joey Guerra, music critic for the Houston Chronicle.

Patrick's favorite: The laser lights.

The next big kindness came from an actor named JC Williams (@JustChillin21) who has been on many shows, but I came to know him because he was on Stargate Universe, a show I blogged about on Fox 26 Houston and a volunteer science-fiction-fan-run website. When the show was cancelled, there was a big sale of prop items in Vancouver, British Columbia. There are so many Stargate fans, many of whom tried to find people attending the sale so that these people could get them something. I thoroughly understand that level of passion, but I never wanted to place an undue burden on anyone living in Vancouver so that I could benefit from such a request. I feel that such a request would put in doubt the true nature of our relationships in some cases.

I don’t remember which Saturday it was, but I am hardly ever in my office and I am hardly ever on Twitter on the weekend. But this short time span I was. JC sent me a tweet asking if he could pick me up something and was asking our sizes. We communicated back and forth for a little while and in the end I told him I’d just be happy with a sticker or something; I’m not greedy. After the sale, he would tease me about sending me off a “box” of stuff. A box???? From personal experience, even mailing a small box from Canada to the United States is expensive. I felt excited yet unworthy once again. I am glad that it took several weeks to get here so I could shed the “unworthy” label and just be excited. It arrived on a Monday, July 11, 2011. My husband wanted to be there when I opened it, and I needed him to record the event. Since JC could not be here in person to see my reaction, capturing it on camcorder and putting in on YouTube seemed like a good idea. Meanwhile the day before I was bit by a spider and my arm started swelling and about the time I opened this, I was running a fever, but with the surge of adrenaline in my system, you can hardly tell I was even sick. They say a picture is worth a thousand words, so my videos will say more:

I first open the box here (I’ve lost a lot of weight since then):   Click here for the video

I missed sharing about some items in the box:   Click here for the video

I tried on one of the gifts here:  Click here for the video

Also among the box, not put on video (because at that time of the video I wasn’t sure if he wanted to remain anonymous or not), were these pictures (don’t faint friends):

JCWilliams

J.C. Williams, actor, dreammaker

JC put a lot of thought and love into this box he was sending. He went out of his way to meet up with one other Stargate Universe actor, Herb Sommerfeld (picture below). He also tried to get one other’s picture and autograph for me, but was never able to catch up with that particular actor.

HerbSommerfeld

Herb Sommerfeld, actor, teacher

You can see JC’s great work on a recent episode of Sanctuary, “Resistance.” Click here.

Finally we close out this year with the overwhelming support I’m receiving for Patrick’s fundraiser for his autism school’s end-of-the-year annual campaign. Even though we are in a tough economy, people have been giving amounts from $5 on up. We met our first-placed $1000 goal. When we reached that, I upped the goal to $1100 and we’ve reached that. Now the goal stands at $1200. The fundraiser goes through Christmas Day. If you would like to see your money make a huge difference, knowing all the money stays at the school, most of it directly for the support of the kids there or creating programs so more kids on the waiting list can get help quicker, then this is a good place to give. Thank you to all those who were able to give, and thanks to those, too, who found themselves unable to give, but forwarded the message to others. Your acts of kindness astound me.  If you would like to help us raise money for this wonderful school for autism, please click here.

 

Patrick

My life teacher and inspiration, Patrick






Acts of Kindness Part 1

23 11 2011

“You can have it, if you’d like it,” the old woman said to the young girl, sensing the fear and nerves of the child, who had never lived anywhere else in her 5 short years of life.  There was something special about this antiquated stuffed turtle that was over 50 years old. Perhaps, it was a physical item of transference, a thing she could hold onto in the upcoming uncertainty of her life. Looking at her parents for approval to accept the offer, the 6-year-old lavished thanks on the two older women, and held on to that turtle for a very long time.

The House of Turtle

The house where I found "Turtle"

We are all the recipients of acts of kindness each day. Some acts of kindness are remembered more than others because of emotions attached to them, or you were having a bad day in your life, or perhaps you felt you just didn’t deserve it. Most kindnesses eventually fade away in the stream of consciousness as it is impossible to remember all of them all (unless you’ve written them down). The big ones you never forget. Like my turtle.

The next big kindness I remember was being asked to go on a family trip with my friends Kelly and Kitchel. They were close in age and I would wind up doing things with one for awhile and then the other. Their family became a refuge from my dysfunctional, abusive home and I loved spending time there. I learned about refried beans and real butter. Their mother, a nurse, used IV needles and ice cubes to pierce my ears. When I was asked to go on their family trip to Kansas, I was ecstatic. But the kindnesses did not cease coming from them.

Hilda in Kansas

Me on the Kansas trip

My mother’s sister and her husband took me in when my mother kicked me out age the age of 13. However, I was there for only 2 weeks. My mother wished for me to return home. My aunt and uncle sat me down and said, “If you want to stay, we will fight for you to stay, but if you return home, you won’t be able to come back.” I made a bad choice and left.

After I was told to leave my home again 6 months later, with whatever I possessed from things that were gifts or things I had bought myself, my sister, on a break from college, was staying with her college friend and her family in the Bronx for the summer. They also provided me shelter until my sister could work things out about where I would go. Their apartment was not big; they were not rich, but their hearts were. Somewhere in there (I forget the timing of all this), my sister brought me upstate New York to my father’s brother’s house. My two of four cousins still remained at home. They welcomed me into their home. For me it was only temporary because the place where my heart felt like home was with Kelly and Kitchel’s family who had moved from Nebraska to Missouri. They were having family meetings to discuss the impact on having me there. But in the meantime, my aunt, uncle and cousins were glad to have me.

The decision was a positive one for me with my friends’ family and I soon moved to Missouri. It lasted from September until December. Plans were being made by my sister once again to file child abandonment charges against my mother to get me into a foster home in New York (close to her where she was going to school). Things didn’t work out with my friends as we had hoped for a variety of reasons—them lacking any legal authority as “parents”, the financial help my father promised, the arguments I was getting into with one of the two girls. I had to leave. When my mother discovered I was there, my departure protected them from being charged with harboring a runaway (I did not runaway, but my mother was upset that she was told off about her less-than-wonderful parenting ability). When I boarded the plane to New York to my sister, the police showed up at my friends’ home. Fortunately, I was not there. I always look back on this has a huge kindness. They could have easily said no given the headache involved with it, but they did not.

The next kindness rates into a category all of its own and will be continued tomorrow in part 2.





Christmas Wishes

20 12 2010

As I sit down to eat Christmas dinner on December 25 with my husband and son, I will go through my 10 or more minutes of crying. When we recount our list of blessings, my list is usually long. This year, it will be even longer. I start off slow, thanking the Earth for the food, the people who planted it, grew it, harvested it, and transported it so that I could enjoy the meal of which I am about to partake. I make sure to thank the turkey for its life. Then the tears come–for the people who are going hungry, who are homeless, who are hopeless, and who are loveless. I may have helped some over the year, but did I do enough? Not likely. There is always more an individual can do. I gratefully acknowledge the people who have sacrificed their lives–our military and the quiet heroes of daily life. I say a blessing to those families who are grieving the death of a loved one; holidays can be the hardest times in their lives. Then I’ll begin to recount all the blessings currently in my own life.

This year I want for nothing, okay maybe except the Adam Lambert new acoustic CD and an announcement that Stargate Universe has been picked up by another network, but all-in-all, I have everything I could ever need or want. My son is thriving at the private school (and we found a funding source for it). The enormous stress of fighting a corrupt school district is gone. I have a husband who loves me and has for almost 20 years now despite seeing the deepest, darkest places of my soul. I have a wonderful golden retriever. I have a loving family, a roof over my head in a fantastic area to live, food in my stomach, a decent car to drive, great neighbors, wonderful friends, and an employer who is continuing to let me try to work each day as much as I can instead of filing for disability. Of course our retirement account was reduced to a 201K from a 401K after the economic meltdown as was everyone else’s, but Patrick’s autism expenses pretty much ate up the rest of it. Somehow I know we will be okay. While I might moan and complain about circumstances every now and again, a swift kick to my rear brings about enormous perspective.

The things I have on my Christmas wish list require the cooperation of others in order to achieve:

1. World peace. Sounds corny, I know, but I’m an idealistic fool who thinks this is actually possible. Before that happens, we will have to get rid of prejudice and hate. In order to get rid of prejudice and hate, we need better educated people.

2. End to hunger: With all the food we have and waste every day, we could feed the world.

End Hunger

3. A cure for autism: Just because I love my son and accept his diagnosis, doesn’t mean I would not want to make life easier for him, and for other parents not to have to even take this journey. The life lessons have been tremendous, but at what cost?

While I am waiting for those things to happen, I will continue to try to do my part, helping one person at a time, one day at a time.

People tend to store their “good will towards men” for just the Christmas season. As they pack away the Christmas decorations, the spirit of Christmas leaves them as well. Perhaps I should dream smaller. Perhaps my ultimate Christmas wish is for others to find the heart of Christmas in their daily lives and keep that siren song alive year-round. Instead of the 12 days of Christmas, we would sing the joys of 365 days of Christmas. Can you imagine what an astounding force of nature we as a people would be?