Tuesday, September 20, 2016

7 Things NOT to Say to a Parent Who Has Lost Their Child

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My best friend and son's God Mother suggested I write a post about things people shouldn't say to bereaved parents (or even those close to a family who has just lost a child) as a sort of public service announcement. I've spent a week adding to this list so I figured I'd better post it before it gets any longer. In a future post I may write suggestions on what TO say, but for now I'm starting with this list of 7 things NOT to say.

Most people mean well and want to console a hurting friend or family member, but often times it comes out wrong and ends up feeling more like a punch in the gut or a slap in the face to the parent. It's only been 2 months since Sebastian passed away, but I've had at least one person tell me each of these things, and I'm sure in my naïve state prior to his death, I probably said a couple of these to other parents I met who lost a child (and for that I'm sorry!) My hope is if we spread the word, maybe these phrases will come out less often.

1.       “I know how you feel.” Unless you have lost a child too, you have NO idea, so just don’t!

2.       “Have you gotten help?” Suggesting counseling or really anything to make the parent feel better is not appropriate or any of your damn business. If the parent brings up the topic or starts to discuss plans to help with healing just be supportive, but don’t make suggestions unless they ask for your input.

3.       “It’ll get easier.” The waves of emotion are going to come and go for the rest of that person’s life. Triggers will creep up out of nowhere years after they lost their child. It could be a song, toy, food, smell, phrase, holiday, anniversary, TV show, message from a friend, just seeing another parent and child, or anything else. It never gets “easier” there may be better days than others, but the pain of losing a child will always remain.

4.       “At least…..” you have each other/another child/work to focus on/as long as you did with him/he’s in a better place. This does not console the parent (although many of us will fake it – especially the ‘better place’ comment even though in the back of our minds we might be screaming that in our arms is the best place for him!) There is no “at least” in child loss.

5.       “Everything happens for a reason.” Some parents may believe this, some like myself may still hold strong to that fact and say it ourselves, but for others this phrase is like a slap in the face, so it’s better left unsaid.

6.       Calling a living child an “angel”. This word is widely used in our society, but the connotations of this term mean a whole other very painful thing for a parent who has lost a child. I was not sensitive to this fact until I lost my son, then I became a part of a community that have “angel children”. For those parents who believe in heaven, the child they just lost is now a real angel. Even if that parent believes there are angels on Earth or they’ve lost older relatives and friends already who they may consider “guardian angels”, the word “angel” has a whole new special meaning, so seeing/hearing the phrase tossed around lightly can be a trigger.

7.       And finally, do NOT under ANY circumstances ever tell a grieving parent how they should feel! Just when you think it’ll help to tell them “don’t be [mad, sad, upset, jealous, guilty, lonely, insert whatever other emotion here]” or “be [happy, grateful, strong, proud, patient, again insert whatever emotion here]” think again and DON’T!




Thursday, September 15, 2016

Adventures with Duckbear!

Put-In-Bay on Lake Erie


Safety first!



Don't worry, he was just going for the pickle ;)





Pyramid Hill & Sculpture Park



Can you find the frog in this pic?



ZipLining in Indiana







Wednesday, September 7, 2016

The Happiness & Heartache of Social Media

I love all the 1st Day pictures and amazingly it hasn't been too hard for me this year, even with as fresh as the pain of losing Sebastian is for me. I fear next year though! Next September Sebastian would be entering kindergarten. I guess that will always be the blessing and curse of Facebook! There will be so many other hard moments in life too....birthdays, holidays, watching friends get to leave the hospital with their kids, firsts he'll never have like losing a tooth, going to Disneyland, joining a sports team, getting his license, or graduating.

I'm sure that others experience this too. It doesn't just pertain to those who lose a child. People who face various issues like couples who have a hard time conceiving, or single folks who want a partner, families who want to buy a house but can't for whatever reason, single parents, military members and their families, and on and on. Everyday we're faced with wanting to be happy for our friends and families and even strangers, but are also crushed by the joy of others just a little (or sometimes a lot). As humans we naturally want to share our excitement and good news or happy moments with others. Thanks to social media, we have a multitude of outlets to do so on a constant basis. There are lots of great things that come along with social media use, but there are a lot of not so great things too. I like to be connected with others through Facebook, but it will always be a double edged sword for me. I'm really glad I grew up in an era before social media. It's hard enough dealing with it as an adult, but I can't imagine how much harder childhood and the teen years would have been.

Saturday, September 3, 2016

Duck Bear in Florida, at Crescent Lake, and flying to Ohio

     I began my travels exactly a week after Sebastian's funeral. I felt his presence so much in Florida and it was a comfort to know he was with me. He seems to have passed over completely now. At times he still shows me he's with me or thinking of his friends and family, but after I arrived back in Eugene (and since I left for Ohio) I've felt less of his presence and seen fewer signs of him. I can't decide if this is a blessing for him or if I should feel sad. I certainly feel like I'm living in an extremely surreal world! Nevertheless, I continue to live each day grateful of the time I had with him and moving forward (or maybe sideways since I'm being a bit of a gypsy right now?). Here are the first of many Duck Bear and Sebastian travel pics!



















Monday, August 15, 2016

Huffington Post Article about the Memorial Fund


Here is the piece I wrote at the request of Huffington Post. They wanted to know more about why the Plumfund had been created. If they like it, I think they'll be publishing it. I could also be invited to blog for them a couple times a month. I hope they offer me a blogger position. It could be just the exposure and platform I need to promote the various causes I want to bring to people's attention. Besides the business about life insurance policies, I plan to support organ donation, CHD and HLHS awareness, the Ronald McDonald House foundation (#rmhfamilyforever), Make-A-Wish, and medical research around transplants and stem cell treatments.



Let me just start by saying how much I dislike asking people for money. I grew up poor and always prided myself in my work ethic and ability to provide for myself and break the cycle of poverty. From the moment we found out about Sebastian’s Hypoplastic Left Heart Syndrome diagnosis at 19 weeks along, friends and family wanted to know how they could help. Sure we had fundraisers and such, but even when we were sent to Stanford unexpectedly in November of 2012, where we remained for a year waiting for a heart transplant (and eventually had a risky open heart surgery to prolong the inevitable), I never once started a crowdfunding site. Nor did I, when once again my baby took a sudden turn for the worse shortly after his 4th birthday, and we were life flighted down to Stanford to await transplant once more. So why a Plumfund now?

Well, my worst nightmare came true! My amazing, smart, and funny heart warrior lost his battle on July 20th. Sebastian loved life and was loved by so many in his short 4 years! He fought hard and overcame so many odds that no matter what, we thought he was going to make it. His story always amazed and inspired all who heard it. So his death shocked all of us. Adding to the blow came the cost of burial. Having to pay not one, but two, mortuaries and transportation to get him back home to Oregon from California and laid to rest in just the right spot, was more than I could have imagined. But of course, being the responsible person I am, I had a life insurance policy to cover it all right!? WRONG! I am responsible. I did have a policy for Sebastian at one point. I did not have one when he died.

Shortly after Sebastian was born, Gerber sent me (like they do all new parents) a packet of information on buying life insurance policies. I knew the road ahead was going to be hard and the odds were stacked against my beautiful baby boy, who had just undergone his first of three major open heart surgeries at three weeks old and come back to us after his heart stopped just an hour post-op (something the surgeon told us was “a miracle”). So like I mentioned, being that responsible person that I am, I contacted Gerber about buying a policy. I was saddened to find out that because of my Miracle Monkey’s congenital heart defect (CHD) they would not sell me any kind of coverage for him. I called other life insurance companies and got the same response; they don’t cover children born with CHDs. Fast forward two years and I was back to teaching public school full-time. Part of my benefits package included the chance to buy a life insurance policy for dependents. Naturally, I was excited because they couldn’t exclude him. I paid on the policy for almost two years, but during Spring Break we got the news that his heart function was decreasing and that he would need more surgeries or a transplant soon. I left my job to take care of him. By Mother’s Day he was in heart failure and within a week we were back at Stanford waiting for heart transplant. Since I had to leave my job, I lost my benefits, including the life insurance policy.

The day Sebastian left us, another heart mom asked if she could start a Plumfund to help with the cost of his memorial. Faced with something a parent should never have to do: bury their young child; I said “okay”. No parent should have to take out credit cards and put their house on the market to cover funeral expenses because they were denied a life insurance policy they were willing to pay for. My new mission is to bring awareness to, and hopefully an end of CHD and other childhood illness exclusions by life insurance companies.

With help from many loved ones, Sebastian was laid to rest after a perfect service. His presence was felt in the train whistle that blew in the distance as we put his favorite Thomas the Train engines on his casket. And when he shined a ray of light down on us as the balloons released by all the children in attendance floated up into the vast blue sky. I thank everyone who was involved in helping honor his sweet spirit and I send blessings to those who have said prayers or words of comfort, shared his Plumfund, or donated to his memorial.

Thursday, August 11, 2016

Sebastian's Last Words

Today I got the call I've been looking forward to and dreading for the past 21 days. The doctor from LPCH called to go over the autopsy report. It appears Sebastian went peacefully and in no pain, with no one at fault. Thank God!!! What I hadn't told everyone is that he passed away before they started the actual surgery. They had been prepping him, got him sedated and intubated, but when they started the ventilator the new pressure was too much for his already overworked heart to take. I was surprised to see they hadn't started yet when I walked into the OR to hold his hand while they stopped doing CPR. I was worried that something had gone wrong with the level of sedation or when they put the breathing tube in, but it doesn't appear to be the case. I don't know what I would have done if there had been medical malpractice! I'm so relieved!!

Now, what I wasn't expecting to find out from Dr. Sacks was the last thing Sebastian said....

Apparently, the attending who was at Sebastian's side when they wheeled him to the OR told Dr. Sacks that Sebastian had been nervous and restless as they went into the OR, then looked at her and said, "I just want to close my eyes and rest." Then he calmed and laid still as they put in the IV and gave him the sedation meds.

Sebastian was ready to be done with all the pain and struggle and wanted to go peacefully in a way that he knew his mommy and daddy couldn't blame each other for or feel guilty about in any way. He also knew how much his mommy hated blood and knew I would insist on going into the OR, so he went before they started the surgery to spare me from seeing more than I should.

I love and miss him so much and am grateful that he left this last message of peace for me.

Sunday, August 7, 2016

The Memorial Fund



I am so blown away by everyone's generosity and truly grateful beyond words!! Thank you from the bottom of my heart to all those out there who knew us or even just heard our story and said a prayer, word of sympathy, donated, or shared the site. I certainly feel wrapped in the loving energy each of you send!

What I'm dealing with is something no mother should ever have to do: bury her young child. Adding to the stress and grief is the financial burden that goes along with the cost of burial services. What hurts even more is that I tried to do the responsible thing and buy a life insurance policy when Sebastian was born, but was turned down by each one I looked into because of his congenital heart defect (aka: they won't insure people they are more likely to have to pay out on). Once I started working for the school district again when Sebastian was two, I was finally able to obtain a policy for him (and one for myself). After paying on the insurance policy for two years, I lost it when I left my job to take care of Sebastian's medical needs in March.

I am not alone in this messed up life insurance policy business. So many other parents of medically fragile children wind up in the same predicament. I will be using this blog as a way to fuel my mission to get Gerber Life Insurance to change their exemption policies. Be on the lookout for future blogs or petitions to help other families not have to suffer thru the same thing I'm facing!