Saturday, May 18, 2013

Saturday, May 18, 2013

Tonight's picture was taken in July of 2003. Mattie was 15 months old and apparently Peter captured one of my many entertaining moments with Mattie. Needless to say the goofier I was the more intrigued Mattie became with me. Mealtimes were always an experience mainly because Mattie HATED being confined to his high chair, so it required high energy and a bag of tricks on my part to get Mattie to focus and eat.


Quote of the day: Happiness is a by-product of an effort to make someone else happy. ~ Gretta Brooker Palmer


After a year of planning for the Foundation's Walk, tomorrow is practically here! In 2009, Mattie's care community planned a Walk for him. Mattie attended the Walk and was so happy to see hundreds of family and friends in attendance, united to show him their love, concern, and support. The Walk has a very emotional component for Peter and I, and in some ways it is hard for me to plan an event in which I know Mattie will not be enjoying and participating in. It is also hard to plan an event in which I see children all around me having fun and a good time. These are all bittersweet feelings. At public events like this it is easy for me to feel like others do not understand the true internal battle Peter and I live with daily, and yet such events are needed in order to promote the Foundation and connect with our community. Losing a child to cancer has forced me into a world in which it is hard to explain and in which at times I am sure people view me as the one with the problem. All quite possible, but the fact of the matter is after a full year of planning and working 16 to 20 hour days for the past two weeks, the Walk will be over in four hours and then what? Post-Walk maybe just as challenging emotionally as the Walk itself.

In any case, I am signing off for tonight. Peter and I spent today with my parents, Peter's parents, and my lifetime friend, Karen. All of whom came into town to support us and remember Mattie. Some Walk attendees have never met Mattie, and therefore maybe motivated to attend the Walk for different reasons. However for me, the Walk will always be about Mattie, my love for Mattie, and the pain that remains within our hearts and mind. Let's hope that the massive amounts of rain and thunder predicted for Sunday will dissipate. Mattie Miracle Walks have always brought out the sun in the past and to me this is one of the gifts Mattie gives me each May. It is my hope that Mattie is with me tomorrow on some level, and I will be looking for those glimmers of sunshine as his sign to me!

Friday, May 17, 2013

Friday, May 17, 2013

Tonight's picture was taken in July of 2003. Mattie was 15 months old and this was his first trip to the Outer Banks, NC and to the beach in general. That first visit was difficult. Mattie wanted to have nothing to do with the sand or the water. He did not like how the sand felt on his feet or the crashing sound of the ocean. Which is ironic because as Mattie got older and entered preschool, he developed a great affection for playing in and with sand! It is funny, when your child is a toddler you think that this challenging phase will never end. Now looking back, I wish it never had.


Quote of the day: As you grow older you will discover that you have two hands. One for helping yourself, the other for helping others. ~ Audrey Hepburn

Tonight's posting will be short! It was another whirlwind of a day. Walk registrations keep coming in, which is a wonderful problem to have. The Foundation Walk has received an all time record high level of pre-registrations for Sunday. That is fabulous news as we are very committed to meeting our targeted goal of $40,000. This money helps us run our programs, and without it, we couldn't continue to support the psychosocial services we offer to children with cancer both at the local and national levels. For those of you who registered for the Walk, contributed, or bought raffle tickets...... we THANK YOU!!!
 

Thursday, May 16, 2013

Thursday, May 16, 2013

Tonight's picture was taken in October of 2002. Mattie was six months old and to me his facial expression says it ALL! Mattie strongly disliked being strapped down to anything, including his stroller. He did not like being confined at all and actually preferred being carried or even walking with me supporting his arms. Mattie wanted to move past the crawling and toddling phase right to walking. It frustrated him that he couldn't do this.

Quote of the day: We can’t help everyone, but everyone can help someone. ~ Dr. Loretta Scott

Peter is still not feeling great, and I am exhausted. Yet we moved past these feelings today and kept plugging away. Of course the question is how much longer can we endure this pace? I know for me the answer is NOT much longer! I am pulling in 16 hour or more days and managing everything from the administrative aspects of the Foundation to a great deal of the Walk logistics. Peter took today and tomorrow off from work, and I am glad he did, because we both needed to go at it today to make our Sunday deadline. We have family coming into town Friday and Saturday, so basically from my perspective things need to be solidified by tomorrow afternoon!

The highlight of my day today was receiving a link to the article that Amber Healy wrote for the Connections Newspaper about Mattie Miracle and the Walk. The title of the article was..... Miracles Continue in Mattie's Memory. Some of you may recall that I had a phone interview with a reporter last week, and we chatted about Mattie and the Foundation for 40 minutes. She then asked to talk to a few people in our care community, so I connected Amber with Ann (our Team Mattie Coordinator), with Tricia (Mattie's outstanding and all time favorite nurse), and Linda (Mattie's incredible Child Life Specialist). When Peter and I read the article today, I have to say that Tricia's comments truly moved us. In fact we were both crying. We both reacted to her comments the same way and keep in mind that we were in two separate rooms while reading the article. Tricia was able to capture the dynamics we lived through and she deeply understands the bonds that we formed within the hospital and within our care community. I know health care professionals are supposed to maintain emotional boundaries, but early on, I realized that these were impossible to maintain given our situation. With a grave crisis like ours, guess what? Boundaries go out the window and instead the only way to truly help people is to relate to them as humans.... on an emotional level! Not every one is capable of this, and what happened over the time Mattie was in treatment was we migrated away from those health care professionals who were incapable of being real and invested. After all, they weren't just prescribing antibiotics, these were people who held Mattie's life and future in their hands! I am sure these special bonds explains why we remain very close to Tricia even today, three years after Mattie died. The fact that Tricia could elucidate on this feeling and actually stated it, made me smile. She said what I had always felt, but no one had the courage to say, and that was nurses connected with Mattie, Peter, and I on a deep level. This deep connection is important to me and I admire those who are courageous enough to share with me what is in their heart.

Miracles Continue in Mattie's Memory
http://www.connectionnewspapers.com/news/2013/may/16/miracles-continue-matties-memory/

I end tonight's posting with a beautiful picture that Peter's mom sent me today. Around Horn Pond was a mama swan with three of her cygnets. This is a sighting Mattie would have absolutely LOVED! Just seeing the picture today reminded me of Mattie. To my Missouri friend QueenB, add swans to your Mattie list. He loved them, and I can't think of swans now without thinking of my own cygnet!

Wednesday, May 15, 2013

Wednesday, May 15, 2013

Tonight's picture was taken in September of 2002. Mattie was five months old. As a baby, Mattie had some girth to him. As he developed from a preschooler into an elementary school student he became long, tall, and very slender. In fact, most kids and teens who I know have osteosarcoma have this same physical build... tall and lanky. What I love about this photo was Mattie was looking right at me, smiling, and absolutely was in love with rice cereal! In fact, Mattie's love for oatmeal also began as a baby. After he graduated from rice cereal, he moved onto baby oatmeal. The simple fact about Mattie was EVERYDAY of his healthy life he had oatmeal for breakfast. That was his food of choice!


Quote of the day: To ease another’s heartache is to forget one’s own. ~ Abraham Lincoln


The Foundation Walk is days away and today alone I have put in a 16 hour day. The night is young and I still have more to do. I had to go to AC Moore today to buy ribbon to make volunteer nametag lanyards! Typically I like going to AC Moore, but trying to calculate how many overall yards I would need today was higher order math and reasoning. Of which my brain just couldn't compute. I literally was in the store for over an hour and I caught the attention of the store manager because I was stacking and restacking ribbon spools! He never stopped me, but I am sure what I was doing was odd or intriguing. I wanted this to be an economical purchase, which is hard to do when I needed 490 yards of ribbon! Needless to say, I was free entertainment to many in the store!

I am headed back to do more work, but I appreciated the lovely message a Holton-Arms student posted to the blog yesterday. This is the school I visited last week. This student wanted me to know that she is coming to the Walk on Sunday because of me! Very sweet indeed!
 

Tuesday, May 14, 2013

Tuesday, May 14, 2013 -- Mattie died 192 weeks ago today.

Tonight's picture was taken in July of 2002. Mattie was three months old and from my perspective full of smiles and laughter. Mattie was born on, engaged, and hard wired. There was NO down time with him since he rarely slept! As I am struggling with my own exhaustion right now, I found this photo inspirational tonight.


Quote of the day: I'm so exhausted and yet I feel like I'll never sleep again. ~ Maya Banks


I relate to Maya Banks quote tonight. Just when I think it isn't possible to feel worse or more tired, I reach a new low. When I am stressed out, I don't sleep well or at all. Now Peter is sick and running a fever and it feels like.... and then there were none here in my home! I am not sure what I am balancing first with Sunday's Foundation Walk. I am sure to the outsider one wonders how hard could it be to host such an event?! What is she talking about???!!! Well all I can say is you would have to follow my life for the last few months to get the level of intensity it takes to run such an event. There is a great deal of pressure associated with the event as well, because it isn't simply the notion of planning a fun day, but it has to be a day that achieves a financial goal. Without meeting the financial goal we set it is hard to continue the high quality psychosocial services we offer at both the local and national levels.

For example, this year in order to run our event we need about 70 volunteers! Just managing the spreadsheet on this is a riot! As I have said to Peter today, I am simply exhausted and I am not sure why this Walk seems harder than those in the past. I have several theories as to why this is the case. In the midst of doing Walk planning, I had a think tank conference call with psychologists from around the Country. I participate on several conference calls a month to help generate a national standard of psychosocial care. But focusing today was next to impossible.

I am signing off for tonight, but to my blog reader who left a very thoughtful posting to me on last night's blog.... A BIG THANK YOU! You gave me the energy to put two words together tonight! Thanks for reading and coming to the Walk on Sunday!

Monday, May 13, 2013

Monday, May 13, 2013

Tonight's picture was taken on April 5, 2002. The day after Mattie was born. After Mattie was born, I did not know if I was coming or going. Between recovering from a C-section and emergency bladder surgery, I was in terrible pain and knocked out on pain killers. Fortunately the day after Mattie was born we were moved to a private room and Peter was able to stay in the room with me. His help was imperative because during that whole week in which we were in the hospital Peter changed every single diaper of Mattie's. Not to mention helped me get up and try to move. He had his hands full with both of us, and yet in the midst of all of this I captured this peaceful moment between father and son.

Quote of the day: To do more for the world than the world does for you, that is success. ~ Henry Ford

I was up and down like a jack rabbit last night. I used to be such a great sleeper before Mattie developed cancer. So good that I could sleep sitting up. Now forget it. I am lucky if I sleep through the night. When under stress and pressure, sleep just doesn't happen. When I finally got up this morning, I felt like I had been up the entire night. Unfortunately I wasn't the only one wiped out. Peter is now sick and was unable to go to work today. Despite his protest, I put him on antibiotics! I may not be a medical doctor, but I have become savvy enough to know how to get prescriptions. I suspect this has a lot to do with Mattie's cancer. I now never want to be without needed medication. Given all my medical issues, having access to all sorts of antibiotics are crucial. So I chalk up my issues to benefiting Peter. It is my hope he feels better soon. As I told him today, he has to take antibiotics because I am not doing this Walk without him. To that Peter laughed!

In the midst of Walk stress, I visited with my friend Margaret today. We had lunch together and just escaping my home, computer, and my blackberry for a few hours was absolutely delightful. Margaret noted that I looked better after we spent time together. The beauty of friendship!
 

Sunday, May 12, 2013

Sunday, May 12, 2013

Tonight's picture was taken on Mother's Day of 2007. Peter and Mattie took me out for an early dinner that day. Mattie's crossed arms were meant to illustrate to Peter and the camera just how much he loved me. Fortunately I have pictures because they will have to last me a lifetime. Since Mattie's death I wouldn't dream of going out for lunch or dinner on Mother's Day. The irony is I checked in with my friend Annie today. Annie lost her daughter Eloise about eight months after Mattie died. I told her I was thinking about her and hoped she was surviving the day. Ironically Annie retreats as well on Mother's Day and doesn't like going out and being forced to see moms with their children. Not that this notion makes me feel any better, but I appreciate that I can turn to Annie and get her perspective. Having similar perspectives on our losses, it does help to normalize my feelings at times. Feelings which are very hard to convey and understand if you haven't lost a child to cancer.

Quote of the day: But there's a story behind everything. How a picture got on a wall. How a scar got on your face. Sometimes the stories are simple, and sometimes they are hard and heartbreaking. But behind all your stories is always your mother's story, because hers is where yours begin. ~ Mitch Albom


I started my day by opening cards that Peter, my mom, and Peter's parents sent me. They also sent me gifts which were lovely, but it was the sentiments in ALL their cards that truly got me. Later in the morning I spoke to both Peter's mom and my mom. Despite how I am feeling about the day, I was happy knowing that how we recognized our moms made them happy! That was the highlight of my day.

Years ago, Peter planted this beautiful rhododendron
in our commons area. I have to tell you, I have NEVER seen it bloom! I mean EVER! Until this spring. But look at how stunning it is!!! While I have been working on the Foundation Walk items in Mattie's room all week, I have been looking out Mattie's window and seeing this beauty.

I am not the only one who appreciates Peter's common area plantings. Check out this robin! We have a lot of robins visiting now which is very unusual for us. In addition, we have two doves that visit our kitchen windowsill every morning. I view that as a positive sign or a meaningful sign of Mattie's presence. However, Peter reminds me that the last time we had doves visiting, we later learned Mattie was dying. Frankly I am sticking with my interpretation!

The beauty of our perennial garden!!!

Peter and I went out today to run more chores for the Walk. While out, I got a text message and phone call from my friend Tina. She was in the city and wanted to stop by my home to give me these beautiful Mother's Day Butterfly Cookie treats. To me they are just stunning, but putting that aside, it meant a great deal to me that my friend would be thinking of me, seeing the symbolism of these cookies (since butterflies have become my personal symbol of Mattie), and finding her way to my home to give them to me. Tina is my first friend I have made since Mattie's death. We are not connected through our children, just through our own preferences and bond. Needless to say, receiving these cookies made me feel special.

I would like to end tonight's posting with three things. The first is a message from my mom, the second is a message from my friend and colleague, Nancy, and the third is an article sent to me by my friend Denise. Denise sent me this article on my first Mother's Day without Mattie. Nonetheless, the article is still relevant today. To all my blog readers who are mothers, I hope you had a beautiful day no matter what you did. If your children are alive and healthy, you received life's greatest gift today.

===================================

A Mother's Love Transcends Mortal Bounds by Virginia R. Sardi

Your bonds to Mattie are as real today as when he was a physical presence in your life. Mattie loved you and Peter so much that is was painful for him to say goodbye in the final moments of his life. His love endures today though he may be gone. You have taken that love and transformed it into a living and breathing Foundation dedicated to the benefit of children stricken with cancer which gives validation to Mattie's life and ensures that his memory will live on in the good deeds accomplished in his name.

You were an exceptionally devoted mother to the little Mattie that grew up to be a beautiful, gifted, happy toddler who is still revered by his family, friends and teachers who reminisce about his life and hold fast to their memories of him, keeping his spirit alive by supporting your efforts to benefit his Foundation through which you have succeeded in keeping his bubbling personality and intensity for life alive and well.

Without him, you have found a very real place for him in your heart which has given you the hope to dream those ambitious dreams of making this world a better place for children like Mattie in whose name all your energies are devoted and for whom you seek to make a difference! Mother's Day is your day because you have shown that in spite of your great loss that your love is immutable and enduring, setting the example for all mothers to know just how infinite a mother's love can be!
==================================

Nancy wrote, "Although, Mattie isn't with you, in life, he is always and will always be in your heart. I know that you understand this, yet, I also know how painful this day is for you as you aren't able to wrap your arms around him. I remember you saying that the Foundation has become your baby and I think that you are correct. It is your baby because it is about your baby. Mattie has given new meaning to the importance of cherishing each day that we have with our children/grandchildren. Of course, not everyday is filled with sweetness and calm. You've shared so much of the realities of raising a child in the blog. You have allowed all of us who care about you to know how unnatural it feels to be around others especially on this day. I admire how you have taken care of yourself and Peter takes care of you as you navigate these difficult days. I hope that you know that you are always and will always be a Mom and are Mattie's Mom. I believe Mattie's gift to you everyday is having the strength to keep getting up and getting out, reaching out to as many as you can to share your story and support those who have to go through the same pains that you did with more support and care. I know that I'm only one of the many who wish you a gentle day on this Mother's Day. I can't believe that the Walk is only a week away. I know that you will be very busy this week and wanted to touch base before I see you. I'm so glad that I can be there, in person this year, to see the fruits of Peter and your hearts."
==================================

Mothers who have lost a child - May 14, 1995 by Erma Bombeck

If you're looking for an answer this Mother's Day on why God reclaimed your child, I don't now.  I only know that thousands of mothers out there today desperately need an answer as to why they were permitted to go through the elation of carrying child and then lose it to miscarriage, accident , violence disease or drugs 

Motherhood isn't just a series of contractions. It's a state of mind.  From the moment we know life is inside us, we feel a responsibility to protect and defend that human being. It's a promise we can't keep.  We beat ourselves to death over that pledge. "If I hadn't worked through the eighth month."  "If I had taken him to the doctor when he had a fever." "If I hadn't let him use the car that night."  "If I hadn't been so naïve, I'd have noticed he was on drugs."

The longer I live, the more convinced I become that surviving changes us.  After the bitterness, the anger, the guilt, and the despair are tempered by time, we look at life differently. While I was writing  my book, I Want to Grow Hair, I Want to Grow Up, I Want to Go to Boise, I talked with mothers who had lost a child to cancer.  Every single one said death gave their lives new meaning and purpose.  And who do you think prepared them for the rough, lonely road they had to travel?  Their dying child. They pointed their mothers toward the future and told them to keep going. The children had already accepted what their mothers were fighting to reject. 

The children in the bombed-out nursery in Oklahoma City have touched more lives than they will ever know.  Workers who had probably given their kids a mechanical pat on the head without thinking that morning are making phone calls home during the day to their children to say "I love you."

This may seem like a strange Mother's Day column on a day when joy and life abound for the millions of mothers throughout the country. But it's also a day of appreciation and respect.  I can think of no mothers who deserve it more than those who had to give a child back. 

In the face of adversity, we are not permitted to ask, "Why me?" You can ask, but you wont get an answer.  Maybe you are the instrument who is left behind to perpetuate the life that was lost and appreciate the time you had with it. 

The late Gilda Radner sums it up well: I wanted a perfect ending.  Now I've learned the hard way that some poems don't rhyme and some stories don't have a clear beginning, middle and end.  Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what is going to happen next.  Delicious ambiguity.