So... I've been pondering a lot about the last three years. About life, about service, about people, about forgiveness, about perspective. It has come to my attention that people still don't understand my frustration about feeling lost and disappointed in the lack of people being there for me. By 'being there for me' during this journey, I mean someone to talk to, be a friend and a shoulder for me to cry on or someone to laugh with. There have been many people that have done nice things and offered us many prayers, which we are grateful for, but that isn't my point in this blog post. I wish I could thank everyone individually for all they've done for Oliver and our family, but I can't. I try to do it online or on the blog, but people still feel that I'm not grateful or not informed of the services rendered. I know most things and I am grateful to hear of them, however, if you do things anonymously and expect me to thank you publicly, what was the point of the anonymity in the first place?? Doesn't that defeat the purpose?? Just a thought.
As I was thinking about this, which some people just won't let go of, I was trying to find a way to put it in simpler terms for people to understand. As I've met with other grieving mothers, I've found a common thread that is woven through our journeys. We NEED a friend. We NEED support to be able to get through the journey. The most difficult time in our lives is when our child is terminally ill and oftentimes, the friends that we thought would step up... simply... step out. Some don't know how to handle grief, some have their own problems, some just don't know what to do. Well. I'm a firm believer in the quote, 'When you KNOW better, you DO better'. So... coming from my own personal perspective here are some of my thoughts... well... a story if you will. Stories help to clarify things when told by a good storyteller... hopefully this brings clarity as I'm not the greatest storyteller... so bear with me.
First of all... I was reading a General Conference talk by Elder Ronald Rasband (Video of talk here) about the death of his grandchild which spurred this story of mine. Here is the quote that stood out to me...
Paxton’s family has learned they are surrounded by countless heavenly
and earthly ministering angels. Some have quietly slipped in when needed
and silently slipped out. Others have been at the door with food, doing
the laundry, picking up the siblings, calling with encouragement, and
especially praying for Paxton. Thus another special lesson learned: If
you come upon a person who is drowning, would you ask if they need
help—or would it be better to just jump in and save them from the
deepening waters? The offer, while well meaning and often given, “Let me
know if I can help” is really no help at all.
So keep this quote in mind while reading on...
Imagine you are at a busy beach on a hot summer day. You are swimming and having fun when all of a sudden you are pulled under the water by an unseen force. A riptide has gotten you in its clutches and you are trying as hard as you can to break free from it's bonds. You are struggling with all of your strength to get your head above water. There are many people on the beach that day. Some people don't notice you are in the water and in distress. Many people look on in shock and are paralyzed with fear. They don't know what to do. They want to help, but they don't know how. They haven't been properly trained in how to save someone from drowning. With a powerful urge and want to help, someone scrambles to pick up a flip flop and throw it to you. Another throws you a beach towel. These things, although in an attempt to help, don't help you with what you NEED at that point in time. In the moment of panic, you are distressed and praying for someone to help you get to safety. Praying for someone that knows how to save a drowning person because you can't do it on your own. Finally, a lifeguard comes rushing over to help you. She throws you a life preserver, you latch on and she pulls you to safety. At this point you are still in shock, but you know that someone was there that was successful in getting to you. In helping you at your most needed time.
We are here to help one another. You need to have the desire to want to help someone and then act on it. But, before you act on it... you need to find out what they NEED the most. Your service doesn't go unnoticed, but it may not be what the person NEEDED at the time. I really hope people understand this. Like Elder Rasband said 'The offer, while well meaning and often given, "Let me know if I can help" is really no help at all.' Most of the time the offer is sincere and well meaning, but when you are drowning... you can't pick up the phone to call for help. So... you are probably asking... what should we do then?
~ YOU call THEM. Don't wait for THEM to call YOU. When you are in this journey of despair and grief, you can barely get yourself out of bed in the morning. Some people, like myself, find it extremely difficult to ask someone for help. You never know when someone is in dire need of a phone call or a friend to just drop by and talk. No one knows when you are a bawling mess, and you most likely won't grab the phone and call someone, but if you follow the spirit and just call or stop by, it may be just the thing that person needs. I know many people have told me, well I just didn't want to intrude. If you stop by or call, they can say that it's not a good time, but they KNOW that you are trying and hopefully you will CONTINUE to try. The point is... you made yourself available for them.
~ Continue to offer assistance, but do it in more specific terms. Tell them that you have this Wednesday open and would like to help them out in any way. This gives them the opportunity to say yes or no right there and they know that you are genuine about your offer to help. Not just something you automatically say to someone that is struggling. This is also true for stopping over. If you are at my door, I am more likely to accept the help and feel like I'm not burdening you.
~ Don't give up on the person that is grieving. It is a nightmare to go through the diagnosis of your child, to know that they will die, never know when it's going to happen, watch their decline and finally their death. This is just the immediate mother/child relationship. There are social, spiritual, mental, physical challenges along the way as well. I'm trying to educate you in how to help them socially and in effect... all ways. This is a roller coaster ride of emotions that changes daily... actually from minute to minute and is never the same roller coaster ride so you never know what to expect. Sometimes we need someone to talk to and sometimes we need space. If I don't answer a call or get back to you, you have to try and understand what we are going through. We are being torn apart in all directions... in every way you can think of. If I don't answer the phone, it's just my way of saying I need space, I need time. We do know if you call and are grateful that you are reaching out. Just don't give up on us. It may take us a long time to open up to people again. It's a long process... a life long journey.
~ Don't judge. I can attest to the fact that going through this changes who you are. Sometimes you aren't the person you want to be, but it's all a part of the learning process. Many talks from General Conference recently have been about child loss. They are faithful and strong now... but when it happened I know a few of them said they were bitter. Well... it's only been a year since he passed. It's still raw... it's still fresh. I haven't been able to forget things and forgive as I know I need to. Give me 10 - 20 years like these men and their families and I hope that I can emerge stronger than I am now. So if I snap at you out of frustration... I'm sorry. There are many aspects of this journey that really suck and mood swings are one of them. I know that many other parents can say the same thing. Don't judge us too harshly. I'm trying to learn how to see things from the other side and give people the benefit of the doubt as well. Life is freaking hard.
~ Don't give advice to people that don't ask for it. If someone wants advice... they will ASK FOR IT. Sometime people just need to vent without the feeling that someone is trying to FIX you. Sometimes what is good for you isn't good for them. Just learn to keep your ears open and your mouth shut... if you don't want to get a mental punch in the face. The fastest way to get ignored is by giving advice when it is not asked for. Learn how to be a good listener. You can be if you genuinely want to help.
Okay... that is all for now. I hope that this helps. I could just sit and stew about how I feel I was let down in some aspects, however, I want to inform people HOW to help because people in our society don't know how to truly help someone. Be a lifeguard for the people around you. Get trained, get the knowledge you need in order to help someone that is in desperate need of help. You may be the only one that is knows what to do. I hope this post has given you the knowledge to help someone else. I KNOW I'm not the only one that has dealt with death and grief and I KNOW I won't be the last.
Again... thank you to everyone that has thrown a flip flop in an effort to help. It is and always will be appreciated. Thank you to the few lifeguards that have been in my life and helped me get back to safety. ALL OF US, me included, have room to grow and knowledge to gain. Praying for a softer and more compassionate heart... like Oliver's.
Wednesday, March 27, 2013
Monday, March 25, 2013
I knew this was going to be a bittersweet event because it was the first U of I Dance Marathon without Oliver. He LOVED going to DM's and was usually found playing video games in the Best Buy room and making new friends there. I had a migraine and felt horrible so Ed took the kids down by himself on Friday night. I watched the family introductions and beginning of the DM online streaming live! I got a video of them all walking across the stage. It was Finn's first year going to Iowa's DM so I was sad to miss his first experience with it. Ed said that since it was our first year as a 'Forever Family' they keep you on the stage and after all of the families go through, they read off all of the names of the children that have passed away. We got a button as well that had 'Forever Dancing in our Hearts' on it along with all of the names of the children that have passed away. It was so difficult to listen to.
As DM starts there is a candle lit in memory of all of our angels and remains burning throughout the entire 24 hour event. There is a quilt that the children get their names added to as well. I found it fitting that Oliver was listed right below Adnan Malkic as they are both kids from Waterloo. Adnan was in middle school and passed away from stomach cancer I believe. His father came to one of Oliver's benefits and was super nice. I still need to meet his mother, but will have to have a Bosnian interpreter come to help with the language barrier. My mom said she's very nice as well and wants to meet me sometime.
My mom and I drove up Saturday morning so we could spend the rest of the day with everyone. There are a few families that I like to catch up with. It's also nice to meet new families each year and learn more about their children as well. There was a 'Dancing in our Hearts' Luncheon that they do every year offsite at the Sheriton, so we went to that. They catered some BBQ pork sandwiches and a nice meal. We wanted to sit with someone so we could get to know another family. We met the Reinier Family, whose son Ben, passed away from cancer 9 1/2 years ago. They were very nice! I hope to see them at more family gatherings in the future. We ate lunch and then people got up if they felt moved to do so and share a little bit about their journey. There were people that have been there for like 15 years or more and some as little as a few weeks since their child had passed. It was a very touching and emotional time. It's so nice that they do that because you can just relate to everyone in that room and know that you all are missing a huge part of your heart. They get it. We also received a brick with Oliver's name on it that I'm going to put in his memorial garden in our back yard this summer.
Jaren and Finn
Woody, me, Kim. Please pray for Woody's son, Brady (he's in middle school), as he recently had a cancer scare. He is in remission for rhabdomyosarcoma, a muscle cancer, and they found something new. He'll be having surgery in May, so please keep him in your prayers. Woody and Kim were so amazing during Oliver's journey so I would love to have tons of prayers sent their way!
Phineas, Rachel (our new DM Family Rep), Jaren
The boys playing with their new friend, Sam, who we met at the 'Dancing in our Hearts' luncheon. His brother, Ben, passed away 9 1/2 years ago. Sam was so sweet and reminded me so much of Oliver. The boys just clung to him!
Eden doing 'Just Dance'.
Phineas dancing with the ladies!
Some of the kids pillowcases in the Main Ballroom where the music and dancing was.
Phineas and Jaren playing football with some new friends! Amy is sitting in the black shirt. Her niece, Jordyn is battling cancer. She is so sweet and she always honors Oliver... his name is on the back of her shirt. I should have snapped a pic of it. Wish we lived closer.
Someone is tired!
Rachel and Eden. I'm so glad Eden had such a fun dance partner this year!!
THE BIG REVEAL!!! $1,529,650.19!!! I still can't believe they raise that much money in one year!
This was after the final slide show of the children that have passed away. Surprisingly I wasn't a blubbering mess this year. I think I'm still numb. I don't know. I've heard that the second and third year following a child's death are even harder than the first. Everyone's journey is different. Phineas was running around and wouldn't sit still for a photograph. Jaren was so tired!
Phineas, Kathryn and Eden. It was Kathryn's last year at DM. We will certainly miss her! Eden loved dancing with her at the last couple of Dance Marathons down there!
They have luminaries in memory of all of the cancer angels as you walk out of the building. It was a bittersweet not. Definitely harder to make ourselves go since he's gone, but still so important to go. These kids do so much throughout the entire year raising money, spreading awareness, visiting the kids, planning family outings and planning for the big event... it is something that the kids really look forward to. It was nice meeting a few new families this year. We are very grateful for all that these students do for our kids and how they honor and remember those of our children that are no longer with us. Thank you.