Archive for August, 2010

Empowering

The PKD Foundation sponsored a symposium on Sunday during the first day of the International Pediatric Nephrology Association’s Annual Meeting. The meeting was from 12-5 and included two pediatric nephrologists talking about ARPKD, research, and the future of the disease; a neonatologist talking about the NICU experience with ARPKD; a hepatologist speaking about CHF; and myself and two other moms giving our experiences of having a child with ARPKD. How inspiring and empowering. We each spoke for 7 minutes about our ARPKD story, an ARPKD story that has touched us, and our hope for the future. Of course my hope for the future is a cure for ARPKD but since that seems so far away then my hope is for parents to receive all of the information necessary so that they do not feel misinformed about the disease and never feel alone.

I am so grateful that the PKD Foundation set up this symposium and so grateful I was able to participate. On Sunday we spoke to 50 nephrologists and our overall theme was that we want all children with ARPKD to have hope. Hope for survival before they are born, and hope for their future.

August 31, 2010 at 10:13 pm Leave a comment

Questions

Max has been asking so many questions lately about his kidneys. Then the other day he asked me when I thought Gabe would really get it about having ARPKD. I thought it was an interesting question. We talked about how Gabe has “had” ARPKD his whole life and it is all he knows and how Max didn’t know he had it until he was 6. I truly think children who are born with medical conditions and/or disabilities rather than acquiring them later in life accept them better. It still sucks and I wish the boys didn’t have this and I’m sure that is how most people feel when they are disabled but I do think they feel less sorry for themselves if it is all they know. It is just their way of life.  I could be way off base here and obviously don’t totally get it since I am not the one who has to deal with it like they do. But in my experience with the students I work with who are blind and visually impaired it is easier for them than for those who have lost their sight later in life. I am happy we told Max about his kidneys and that we are so open about it. I’m hoping this will hope both boys in the long run accept their disease and not ever feel ashamed of it.  Everybody has something is our motto around here and boy is it true for us!! Everyone around here does have “something”. I wish we were carefree and had nothing but it’s just not the way it is. Like my sister likes to say “it is what it is”………

August 21, 2010 at 9:10 pm 1 comment

Touching

I read this article (http://religion.blogs.cnn.com/2010/08/11/my-faith-how-i-navigate-the-land-of-grief/?hpt=C2) and found it to be so touching. I hope I never have to think any of those thoughts but hope this will help some people who might be reading my blog to be more forgiving of themselves and their feelings in times of horrible grief.

My Faith: Navigating the land of grief since my son’s death

Editor’s Note: Joe Sterling is a News Editor for The CNN Wire.

By Joe Sterling, CNN

Nearly 11 years ago my wife and I entered the world of grief when we lost our teenage son.

This week, we will again confront the never-ending anguish and heartache of this unfathomable death by dutifully participating in religious rites of mourning. And we will spend yet another year grappling with the sorrow just by ourselves.

When the anniversary of the death of our son (pictured) arrives this week–the 2nd of Elul on the Jewish calendar, which is tonight–we’ll be headed to our synagogue to recite the Kaddish, the mourner’s prayer.

We’ll be lighting a candle at home that will burn all day in his memory, and we’ll be visiting his gravesite.

A few days later comes the secular anniversary of his death, which falls on August 14. Shabbat happens to be that day and we’ll probably end up at services.

Four times a year, a moving memorial prayer service called Yizkor is held in the synagogue, and that’s when we recite prayers for the dead, such as the El Male Rachamim, as well as the Kaddish itself. We try to attend these services.

This flurry of activity might give the impression that we’re devout, but we’re not. While we try to be well read on Judaism and all things Jewish, we’ve never been regular synagogue-goers.

But the reaction to the horror helped us gain a profound respect for organized religious life.

After the death knocked us numb and we couldn’t reason or plan anything, a synagogue committee devoted to helping those who grieve leaped into action, and their labors impressed us greatly.

People who didn’t know us personally were there to help us navigate through the shock of death: They prepared our house for the shiva, the Jewish mourning period, and prepared food for us and the scores of the bereaved who showed up at our door.

This gesture affirmed our appreciation and deepened our understanding of the Jewish faithful.

But eventually the mourning period ended and eventually the crowds of friends and relatives who filled our living room disappeared, and it didn’t take us long to figure out that the funeral and the shiva inoculate you from the real world of the bereaved.

After we trudged back to our jobs and began slugging it out in the working world, we began to sense the enormity of our loss, and that’s when the readjustment process began setting in.

The most profound lesson I took from this ordeal is that no one understands the death of a child unless he or she is their own son, daughter or sibling.

Many people have asked us over the years if we’ve gotten “closure.” The answer, of course, is no, never, unless you are a sociopath.

We’ve run into people who have had the nerve to tell us that our boy’s death was part of God’s plan.

We’ve encountered impatience from some because we continue to grieve, as if we’re on the clock and there’s a countdown toward normalcy.

But I soon learned not to knock these simple-minded people. I know their lives and thoughts will change when they get a call or a knock on the door with the ultimate bad news.

We’ve been frank with such insensitive people and have been unapologetic for reacting normally to an abnormal situation. It’s a new world with no rules and you do things you never thought about doing before and see things you never once noticed.

When you go through this kind of ordeal, you cry without warning. When I turn a corner at certain streets, recall something nice or read about another death, tears flow.

I sweat in rage when I encounter a loutish teenager or a negligent parent, and I get very sad when I meet a respectful and wonderful young man or woman reminiscent of our son.

Over the years, it’s been hard to stomach people who complain about trivial issues. I wish serial complainers would just shut up and smell the roses – the flowers in question being their children who are alive and well.

I was in such grief at one time that I read material about and explored ideas of an afterlife for the purpose of “contacting” my son. To me, such a quest is a waste of time but I had to carry it through and get it out of my system.

Over the years, though, I’ve worked very hard to not wallow in pain, and learned very quickly not to allow myself to be in uncomfortable situations.

For example, if I were watching a film with disturbing imagery, I’d walk out of the theater or click off the pay-per-view. If I were invited to a gathering and something upset me, I would leave.

Nothing will compel us to let the pain get worse. My wife and I haven’t been shy about getting grief counseling, a process that helped us go forward.

We’ve learned that honoring our son’s memory with our daily actions and never forgetting him are the most important parts of the coping process.

I’ll never forget the day I came early to pick my boy up at football practice, and to my surprise, he was waiting for me.

He told me he and a Muslim kid on the team chose to walk out because a representative from a Christian athletes group was invited to preach to team members. (This was at a public school, by the way.)

So many kids would have caved under such pressure and stuck around.

But our son–who reveled in the diversity that typifies the cities we lived in and had good friends from every religion, ethnic group and social class–knew who he was and was proud of his identity, so he left the gathering.

The only advice I can give a parent who loses a child is to soldier on. You have no choice. As years go by, pleasant thoughts of the departed will replace the nightmares and the pain. The torment will always be there but it will recede.

Here’s a quote from The New York Times obit of Bob Lemon, the Cleveland Indians pitcher and Yankees manager, about the death of his son in an accident. I’ve never stopped thinking about this remark after I first read it.

“I’ve never looked back and regretted anything. I’ve had everything in baseball a man could ask for. I’ve been so fortunate. Outside of my boy getting killed. That really puts it in perspective. So you don’t win the pennant. You don’t win the World Series. Who gives a damn? Twenty years from now, who’ll give a damn?”

“You do the best you can. That’s it.”

The views expressed in this essay are solely those of Joe Sterling.


August 15, 2010 at 8:56 am 1 comment

Interesting Article

Kidney Pilot Set

by SEAN GARDINER And SUZANNE SATALINE

The New York City Police Department has agreed to participate in an experimental program with New York University School of Medicine and other agencies to recover kidneys from volunteer donors who die outside of hospitals, the NYPD said.

Physicians in the U.S. are permitted to harvest organs only from people who die in hospitals. The new program—which would speed donors’ bodies to Bellevue Hospital for organ removals—would be the first in the nation to try the approach used in Spain and France, said Lewis Goldfrank, Bellevue’s head of emergency medicine.

The decision by police officials was the last needed that would allow NYU, Bellevue and various city and state agencies to use a $1.5 million federal grant to establish organ-recovery protocols and a mobile retrieval team.

Under the pilot plan, attendants traveling in a special organ-preservation vehicle would respond to an emergency call if paramedics decide they cannot revive a heart-attack victim, Dr. Goldfrank said. The organ team would confirm with family or friends that the deceased was a donor. The team would then be allowed to take the body to Bellevue to remove the kidneys.

August 13, 2010 at 9:28 am Leave a comment

Inspiring

I just came back from the PKD Foundation’s National Convention in San Diego. Wow. How inspiring and how informative.  The sessions were amazing. We started off the day with a parent to parent roundtable that I led. Then the best doctor in the world who is the guru in the field gave a presentation on ARKPD 101. Then another amazing doctor in the field spoke about dialysis and transplantation. After that session we had a working lunch session with a renal dietician that I personally thought was very helpful. Then the best doctor spoke again on the top ten things you should ask your pediatric nephrologist. I wish I lived closer to her because I would love for her to be the boys’ doctor. We finished the sessions up with a psychotherapist speaking on the emotions of having a child with chronic illness. She talked about the emotions for the child and the emotions of being the caregiver.  The day ended with a pizza party for ARPKD families.  Sunday we had a session on CHF and then a Q&A.

Besides learning a lot, which I really did do, it was also so nice to hang out with the families. There were four families there who I have met before and really enjoy being with. And then there were four new families, three of them with babies with ARPKD.  I hope I was helpful to these new families and I also hope they got something out of the sessions. I am grateful for the foundation for having this convention for us and for allowing these amazing doctors in the field to speak to us!!!

August 11, 2010 at 5:51 pm Leave a comment

Religion

I’m pretty sure I’ve posted about religion before. It’s such a touchy subject. I think any religion to the extreme is not good. And really in general there is a lot of overlap. My friend started this amazing website: supportforspecialneeds.com and this week’s topic is all about religion and G-d and having a “special needs” child. Many different leaders of many different faiths were asked questions about G-d and having a child with special needs. There was a place to post your feelings and this is what I wrote:

I’m Jewish and probably less religious than most. I do believe in my religion and feel proud to be Jewish but most of all I like the traditions of it. I like doing things for the holidays with my family. I like incorporating special things into these holidays for myself and my children to make them special and memorable. Since my boys were diagnosed with their kidney disease (ARPKD) I would definitely say I have turned more to religion. I am not necessarily more religious and do not believe in G-d more or less than before. I just think I am drawn to the traditions more and drawn to start new traditions and hook on to the old ones. I’ve also found myself chanting a specific prayer in my head as a mantra to calm myself down. I do this in hebrew and sometimes spell out the words too. It’s amazing how this does calm me and helps me move on from my panic attacks or fears or just frustrations when dealing with the disease. So I guess in a sense I do turn to my religion to help me find “peace” by practicing the traditions and chanting my prayer.

August 3, 2010 at 3:51 pm Leave a comment


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