Saturday, February 12, 2011

Saturday, February 12, 2011

Tonight's picture was taken in September of 2003. Mattie was a ball of energy then and though he did not like having to sit still to eat, he eventually got the hang of it. As you can see in this picture, he clearly fed himself, as evidenced by the food all over his face. It takes a great deal of patience to watch a toddler feed himself. After all it can be a very messy process and it can also take a while. However, over time I learned the importance of Mattie's independence and self initiation. It would have been much easier if I controlled the process and fed him, but then I realized Mattie would have missed the opportunity to develop his own skills on his own time frame.


Quote of the day: No one is exempt from grief. ~ Gregory Maguire


I woke up this morning, almost dreading the day. I have been preparing myself mentally all week for the fact that Peter and I would be cleaning out Mattie's room today. Cleaning out is a relative term. When I say cleaning out, I literally mean going through the numerous boxes and bags of things that completely filled his room. The dimensions of Mattie's room are 14x16 feet. However, picture half of this space absolutely piled high with things. In fact, over half of the room looked like a wherehouse rather than Mattie's bedroom. Naturally Mattie's room never looked this way when he was well, but through his illness and certainly in his death, we tried to pile all his belongings in one place.

Peter and I worked on Mattie's room for seven hours straight. Certainly cleaning out our walk-in closet last weekend, helped us organize things today. However, by the end of this process we donated over 14 large garbage bags full of things to Goodwill. There were aspects to going through toys, Mattie's school book bag, Mattie's books, clothes, shoes, and collectibles that were totally challenging and depressing. Peter came up to me at one point and said that today was much harder than the cleaning out we did the past two weekends. He said he felt as if he were dragging through the process. I related wholeheartedly, because it isn't easy saying good-bye to your child's things, especially since these things are our only physical connections to Mattie now. If I had taken on this project right after Mattie had died, I would certainly have been unable to handle it. However, now that I am one year and five months into the grieving process, I know that there are some things that I can give away, because they no longer tie me to Mattie. Despite my huge hesitation about this before, I can now say good-bye to Mattie's commode and IV pole. But it took me all this time to get to this place. While going through certain things of Mattie's today, I realized I couldn't process them, and therefore had to keep them and will revisit them on another date. His school bag was such an object. Mattie kept all sorts of things in his book bag, so reminiscent of Mattie (and his mom, since we both were pack rats). So basically I kept the bag and all its contends. I also put together a plastic memory bin of Mattie this afternoon. Some of the contents in the bin, I photographed below, because each one has a story to tell.

This is one of Mattie's box art projects. He created it during Halloween of 2008 in the hospital. As you can see it was a haunted house, with ghosts and a witch. It was actually an extremely creative project. Though we disassembled the box today, I kept the ghosts and other pieces of art on the box as reminders of Mattie and his creativity.

Some of you may recall Mattie's Roach! This roach came with us on EVERY hospital admission. Mattie and his art therapists created this beauty (I am being sarcastic!) out of model magic and then painted it. Mattie particularly loved freaking me out with it. This roach has a story to it of course! During one of our discharges from the hospital, I must have forgotten to pack Mr. Roach, and accidently left it in the room. So the next admission, as I was unpacking Mattie's things, he could see his model magic friend was missing and he wasn't happy about it. For weeks, he pined over the roach. Until one day, as we were talking to one of the residents about Mattie's art work, we mentioned the lost roach. She paused and then told us she swore she had recently seen the roach. So she left Mattie's room, and minutes later came back with the roach in hand. The roach had left the PICU and was now on display in the transplant unit. The nurses there liked it and adopted it. They weren't happy to part with it, but understood how much it meant to its creator. So this roach got around the fifth floor of the hospital. The story and memory of the roach can still get me to laugh.

When Mattie lost his third tooth (he was well at that time) he made a request to the tooth fairy for necklaces made out of pasta. I am not sure where this idea came from, but he was very certain that is what he wanted. He did not want money or a toy, but handmade necklaces. I kept these necklaces over the years and now they are in Mattie's memory bin. To me they speak to Mattie's whimsical side.


















Just like in the Olympics, where athletes receive medals for their performances, Mattie too received medals in the hospital for his amazing physical therapy work and bravery. Each physical feat he performed was acknowledged. It was his incentive system that Linda (Mattie's childlife specialist) helped to design to keep Mattie motivated. Though these Disney medals may look cute, there was NOTHING cute about what he had to do to earn them. Mattie worked extremely hard for each pin you see here. The bravery Mattie showed as he tried to learn to reuse his arms and legs again after limb salvaging surgery was remarkable. In addition, the scans, procedures, and numerous sedations Mattie underwent were grueling and scary. However, after each ordeal, he proudly added a pin to his medal collection. Needless to say, these medals to me speak volumes to Mattie's courage, capability, and determination and therefore had to be included in his memory bin.

One of the last things I wanted to share with you was Mattie's Georgetown University Hospital ID badge. Not every child gets one of these, but since Mattie liked Linda's so much, she promised him one day he could get one of his own if he complied and got the scans and xrays he needed. He did, and the rest is history. Though the ID represents Mattie's time in the hospital, I did add it to his memory bin. Because the ID symbolizes to me Mattie's great ability to negotiate and also the beautiful relationship he had with Linda. Linda made life bearable for the three of us in the hospital, and I know despite the pain and torture Mattie received there, his closeness and bond with Linda inspired him to always go back for treatment.

As I look at Mattie's room tonight, it still looks like a child lives there. It most certainly does not look like a guest room. Which I am fine with. However, what I can visibly see is that Mattie's room is returning to the way it used to be and it is no longer looking like a sick room.

Friday, February 11, 2011

Friday, February 11, 2011

Tonight's picture was taken in September of 2003. Mattie was about a year and a half old. As you can see in the picture, we took him to a farm, and he had the opportunity to pet a goat. At first Mattie was quite timid about the whole experience. As you can see he was partly fascinated, and partly scared. He was holding onto Peter's left hand quite tightly and reaching out with the other to pet the goat. This was the beginning of his Farmer Brown status. Mattie loved being outside, he was almost born this way. When he was outside in the fresh air, he seemed calmer and happier. So it did not surprise me that his love for the outdoors extended to those living things which spent time outside, such as farm animals.

Quote of the day: You may my glories and my state depose, But not my griefs; still am I king of those. ~ William Shakespeare
 
 
 
I began my day with a four and a half hour meeting. That may seem like an endless amount of time to be sitting and processing information, but it really isn't with this particular group. Once a month I chair the DC licensure board for professional counselors. This is a board that regulates the practice of mental health counseling in the District of Columbia. A portion of our meetings is open to the public, and therefore each month I receive input and feedback from the public. However, the board creates the laws by which the profession practices, and we also regulate and enforce these laws. Which means that we process all ethical complaints against professionals in our jurisdiction. This can be a very time consuming, but rewarding process, and unlike so many other things that I did before Mattie's death, this is a professional activity that I still find enriching and stimulating.
 
I always come away from these meetings feeling as if we accomplished a lot for the profession and the community. Which at this point in my life, is a good feeling. I have to focus on the positive things some times, otherwise, I wouldn't be able to function.
 
However, when I got home, my mood began to change. Perhaps it was because I was undertaking chores again and seeing all the things I need to address in Mattie's room this weekend. In the midst of all of this, I received another Valentine's package today. My friend Tamra dropped off a lovely hand decorated package, with pretty red and pink bows. The colors themselves put you in the Valentine's day spirit. A spirit that I must say I don't feel. However, I appreciated her card, chocolates, and other gifts. It was a care package designed to make me smile and understand that I am important. When Tamra would visit me in the hospital, she always brought something for Mattie, but she also brought something for me. In a way, she was saying that she was thinking of me, and understood my role in Mattie's cancer battle. Now that the cancer battle is over, and Mattie is no longer physically with us, her gifts haven't ended. She still thinks of me and is trying to support me through a much longer battle, grief.  
 
My friend, Angie, and I were emailing each other today about Valentine's day. Angie told me about an article she read about this holiday, and basically the article's author interpreted Valentine's day "as a little bit of brightness in the middle of an otherwise gloomy season as we desperately wait for spring." This is a sentiment I completely relate to. Because it seems interesting to me that we give those we love flowers, candy, and gifts on this day, when really everyday is important, not just February 14. I couldn't help but laugh this morning as I was riding the Metro to my meeting. Metro employees were greeting everyone in the train station and reminding us not to forget our loved ones on Valentine's day. It seemed so contrived and amusing rather than sincere. Valentine's day shouldn't be about the THINGS, but it should be about the connections to others we have in our lives, and as Angie says, it is about the brightness. People we love do add brightness to even the gloomiest of days.

Thursday, February 10, 2011

Thursday, February 10, 2011

Tonight's picture was taken in September of 2003. As you can see Mattie was outside with Peter and his ride-on fire engine. Mattie loved ALL vehicles and he especially loved the color RED. I think it is ironic that Mattie began riding a red toy and as so many of you know his last toy (a motorized ride-on car, SPEEDY RED) was much larger and also very red.

Quote of the day: In youth one has tears without grief; in age, griefs without tears. ~ Joseph Roux


I began my day walking. I haven't done that in quite some time. I was planning on walking outside, but both Peter and Ann told me it was freezing outside and wasn't a good idea for me. So instead, I went to an indoor mall with Ann and we walked around. Not as nice as being outside, but it was better than walking on a treadmill. We walked over 2.7 miles together and talked about the Foundation Walk along our journey.

While I was with Ann today, she needed to stop at Mattie's school to pick up some materials she needed. I decided to wait in the car for her, and I figured that would be fine. What I did not figure on, was it was recess time for many of the younger children, and they exited their school building in groups and headed to the playground.

I have to tell you it was a very hard sight to see..... streams of children running to the playground, a playground Mattie spent many hours on. Yet in all the children I saw, something was missing.... Mattie! I remember Mattie bundled up and walking the same pathway as the children today. Some times I wonder why life is so unfair. Why are some children healthy and others are taken away from us? In the midst of all these thoughts, I could see Mattie's tree in the distance. Just like Bob's (Mattie's lower head of school) picture illustrated two nights ago, Mattie's tree has its leaves on it. I really do not understand this, since every tree around it is barren! Yet this tiny oak stands proud and strong. So between the children and the tree, it was a powerful visit. When Ann got back in the car, she could see that I wasn't in the best of places. If Mattie were alive today, he would be 8 years old, and in third grade. In Mattie's school, children who are in 3rd to 5th grade are in a separate building from where he was in kindergarten. So in essence Mattie would be older than any of the children I saw on the playground today. Yet in my mind, Mattie will always be 7, the age he was when he died. I unfortunately will never get to know Mattie at age 8, 9, 10, and so forth. These are years robbed from Peter and I, and I am not sure I can describe the feeling associated with this kind of loss, despite my best attempts each and every night.

This evening when I got back home, I received two packages in the mail. I wasn't expecting anything. But I received a valentine's day gift from my parents as well as a gift from my friend, Angie, in Boston. Angie and I went to graduate school together, and we both survived, and got our degrees, despite having abusive mentors. It is amazing how such an experience can bond people together. Angie is a faithful blog reader, and has followed our story since Mattie was diagnosed. To my surprise, Angie sent me chocolate heart shaped cookies. Needless to say, both packages brightened my day. I sometimes need brightening, especially when I have moments when the reality of Mattie's loss is just too much.

Wednesday, February 9, 2011

Wednesday, February 9, 2011

Tonight's picture was taken in September of 2003. Notice that this is the SAME location as last night's picture. The only difference is it was two months later and Mattie was walking by this point. You can really see the dramatic increase in his growth and development if you compare the two pictures! Mattie was always intrigued by my plant stand, and one day I saw him attempt to climb it. That was all I had to see, and that night I had Peter move this wrought iron stand against the wall, because I was afraid Mattie would hurt himself if he used this structure as a jungle gym. It is quite ironic, I spent my days trying to foresee danger and obstacles in Mattie's life. However when cancer struck, I realized just how powerless I was over protecting Mattie from life's greatest pains.


Quote of the day: The cure for grief is motion. ~ Elbert Hubbard


There is some truth with regard to tonight's quote. I think motion helps on two fronts. First, the motion of walking (or exercise) I have found to be very therapeutic and helps me feel physically and mentally better about myself. However, since I have returned from Los Angeles, I haven't walked much and kept up my exercise routine. Something I hope I can return to soon. Secondly, the motion of staying busy I have found at times to be very needed and helpful. This week has been a busy one for me with regard to planning the Foundation's Walk. I have found it stimulating and exhausting all at the same time.

I had the wonderful opportunity today to have lunch with my friend, Olivia. My faithful readers may remember that Olivia was instrumental in helping Peter and I plan Mattie's celebration of life event at Georgetown Visitation Day School. It was a very special remembrance and truly captured Mattie's spirit. This type of help and support, during such an amazingly challenging time, is something I will never forget. We are very grateful to Olivia, and I am so happy she has agreed to help us with the planning of this year's Walk. I have taken on the role of the Walk chair this year, and I deeply appreciate all my dedicated volunteers. I couldn't do any of this without their focus, efforts, and dedication.

Olivia and I discussed all aspects of the Walk today and I found her questions, insights, and feedback extremely helpful. I appreciated her acknowledgment of the mental energy I have put into the planning of the Walk already. That meant a lot to me because things are finally gelling in my head over the last three weeks and I am happy that actually comes across in my conversations.

Olivia and I were also chatting about one of her daughter's, who is Mattie's age. Olivia told me the following story. Florence, her daughter, belongs to her school's brownie troop, and recently she went around her neighborhood selling girl scout cookies. As some of you may recall, Mattie's school's brownie troop is giving some of their proceeds to the Mattie Miracle Cancer Foundation this year. One of Florence's neighbors did not want to buy cookies, so Florence suggested that instead she consider supporting one of the charitable organizations they were sponsoring this year. So the neighbor asked Florence about them. Florence told her one of the organizations pertained to diabetes, and then she explained the other is called Mattie Miracle. Naturally the neighbor asked her what was Mattie Miracle about. Olivia was with Florence, but Olivia (as was I) was curious how Florence was going to answer this question and therefore remained quiet. Florence told her that Mattie was a classmate at her school who had cancer. She said that Mattie Miracle is an organization created by Mattie's parents and the money would help his parents to always remember Mattie. I actually thought that was a very touching response, because in essence what Florence is saying is that through Mattie's Foundation his memory and legacy will always remain alive. I couldn't have said it better. Frankly Olivia's story inspired me, because it illustrates to me that children can understand cancer or illness on some level, and they too can advocate for a cause. I have no doubt that Florence's neighbor will remember her story, and in a way Florence enhanced her neighbor's awareness of pediatric cancer.

Later on this evening, after Peter got home from work, we loaded up the car and headed to the Lego store at the mall. Tonight we made a huge donation to Lego of thousands and thousands of bricks. The store will use this donation to make other children happy, and since Mattie spent so much time at that store, we felt this was the right thing to do. In addition, this store is helping us tremendously with activities at this year's Foundation Walk. We had the opportunity to meet Liz again. Liz is the store's assistant manager, and she remembers Mattie quite well. It was wonderful to see Liz wearing a Mattie Miracle Cancer Foundation pin on her Lego apron, and to hear all the wonderful plans she has put into place for the Walk. Clearly Mattie's story has impacted Liz, and though Mattie wasn't with us tonight, I felt his spirit within the store. I couldn't help but recall his last visit to the store. It was a special visit that Linda (Mattie's childlife specialist) arranged. A visit in which he got to go to the store after hours when no one else was there and met Lego masters and then created a self designed NYC taxicab (like the one he rode in during his trips to NY to go to Sloan Kettering). It was a night to remember, a night that of course flashes before our eyes, as Peter and I walked into the store.

I would like to end tonight's posting with three wonderful messages I received today. The first one comes to me all the way from GERMANY! I was deeply moved by Claudia's message and how Mattie's blog touches the lives of complete strangers. His story is powerful and when I receive messages like this, it reminds me why I do what I do each and every night. Thank you CLAUDIA. Claudia wrote, "I don't know if this is the right way to write you an e-mail (I don't really want to comment on this particular post per se), but I couldn't read and not respond. A few days ago I googled something and a link to your blog came up. I've been reading since.  My name is Claudia, I live in Germany, and my (Canadian) husband and I have two children, Finn (5) and Lily (soon to be 4). Vicki and Peter, I am so sorry for your loss. The story of your lives is one of amazing love, dedication, strength and resilience, and I know it has a huge impact on so many people's lives. But I do wish it would have had a different ending for Mattie. Mattie will NOT be forgotten, he will be remembered and missed by many on this earth and I believe he is safe and whole now in the arms of the Father. I know that I will never forget him or his story. I've looked at countless pictures of him in the last few days and my heart is just broken for you. Some of the pictures literally took my breath away. The butterfly balloon his school counselor Susan gave him in March 2009 is the exact same we bought for Lily's 3rd birthday party. Every child was sent home with that butterfly balloon after the party. And I am pretty sure the pants Mattie is wearing in the bug garden party pictures (for his 7th birthday) are from Gymboree. I bought the same pair for Finn.  So, reading your blog and looking at all those pictures I actually feel like I "know" you. I just want to tell you that I am thinking of you and am praying for you. And, in a way, grieving with you, because I know just how deep our love as parents for our children really runs. Wishing you peace from Germany. P.S. And I think you are all aptly named: a Gift from God, a Conqueror, and a Rock."

The second message is from my friend, Charlie. Charlie wrote, "I read your Tuesday 7 Feb blog and all I can say is that going back into the hospital must feel something akin to going back to the scene of an accident that had a fatality; I can only imagine how difficult it must be for you and for anyone else who had a child die at a particular hospital to set yourself to walk through the doors again. It takes a special kind of courage to steel yourself so that you can be there to help others. I hope that eventually what you are doing helps you to deal with Mattie's loss however you can. You as always remain in my thoughts and prayers."

The final message is from my friend and colleague, Nancy. Nancy wrote, "As I sit at my computer with my notes on what I wanted to share with you, I am reminded of your beautiful descriptions and detail that occur each day on the blog. You write in a way that engages the reader and does transmit a lot of feeling. None of us who haven't experienced Cancer and its impact are truly able to feel exactly what Peter and you are feeling. What we can do is love, support, and be of strength to you when you are so vulnerable. One of my quirks regarding the blog is to view the counter. I imagine that some people are like me and might go back more than once within a day, others daily, and still others are discovering it for the first time. This besides the Foundation link and work is a daunting task. One that you, both, handle with dedication and humility. Two other qualities that many can't aspire to , yet, admire. As usual, there are so many prompts and thoughts that illicit a visceral response within me or cause me to pause and take a deep breath.The last two points revolve around Mattie's tree and Peter and Mattie. It was great of Bob to send the picture. How miraculous to see that it still bears leaves while other trees are bare. It is a fitting metaphor for Mattie's life and existence. I look forward to viewing it in person on my next trip to DC. The marriage of nature and man is often written about and this tree is a perfect symbol of this deep connection. Through your inclusion of pictures illustrating Mattie's life, those of us who never had the privilege of actually being in his life have gotten to know something about him. The picture of Peter and Mattie watering the deck in the Outer Banks is priceless. I love pictures like this one because they express the richness of a relationship. Mattie and you had one kind of beautiful bonding and Peter and Mattie's pictures show the tasks that 'Pals" do together. Here I am saddened for Peter too. I am so glad that I've met him and spoken with him. These pictures are richer for me as a result of our time recently. It evokes much emotion and says more in the picture than words can express. Again thank you for letting me know the Brown Family. It is a Gift of Living!"

Tuesday, February 8, 2011

Tuesday, February 8, 2011 -- Mattie died 74 weeks ago today.

Tonight's picture was taken in July of 2003. Mattie managed to scoot himself between all my flower pots and land up at the back of our plant stand. He wanted an up close and personal view of my violets, so he could feel their soft and fuzzy leaves. As you can see he was very successful, and despite not walking at 15 months, he had an incredible way of moving around quickly!

Quote of the day: One often calms one's grief by recounting it. ~ Pierre Corneille


It seems ironic that Mattie died at Georgetown University Hospital 74 weeks ago today, and that tonight I returned to the hospital for a three hour long parent advisory board meeting. As I drove into the hospital parking lot, I had an immediate reaction. Naturally I have returned to the hospital numerous times since Mattie's death, but today, as I drove to find a parking space, I couldn't help but remember Mattie and I struggling together in this concrete labyrinth. I can still vividly remember driving to the hospital when Mattie was sick, and trying to unload him and some of our things in order to check into the hospital. Finding a parking spot was nearly impossible and then I recall the elevators in the parking structure weren't always working, and I would then have to push Mattie's wheelchair through the parking lot, up the ramps, and finally into the hospital. Those moments of panic about Mattie's health, the desperation of trying to find a parking space during each hospital visit, and the feelings of sheer exhaustion from caring for Mattie all came back to me tonight. So this is the state I entered a three hour of meeting.

Naturally because Peter and I lived at the hospital for over a year, we know many people there. In three hours, I ran into three people in the hallway that we knew. The first person I saw and chatted with was Sharon, Mattie's hospital chaplain. Sharon and I caught up with each other and the running commentary I heard from everyone tonight is they are all thinking of us. Later on in the hallway I then ran into Julia, one of Mattie's HEM/ONC nurses from the Lombardi Clinic. Julia was one of our favorite nurses in the clinic. She has a calm demeanor, which was needed by both Mattie and I. Unfortunately Mattie did not get assigned to Julia often. I was very touched to hear that Julia continues to read our blog, and loves looking at the nightly pictures of Mattie. After I saw Julia, I then ran into Dr. Abu-Ghosh. Dr. Abu-Ghosh is Brandon's (Mattie's big buddy) doctor and she was also Cody's doctor. Some of you may recall me talking about Cody. Cody was Mattie's age and died from Neuroblastoma about 7 months before Mattie. I still recall the video I saw of Dr. Abu-Ghosh holding Cody as a baby (since he battled cancer for years), and it can still brings tears to my eyes. Mainly because you could see the hope Dr. Abu-Ghosh and Cody's mom had in their eyes, as they were caring for Cody. In any case, Dr. Abu-Ghosh was surprised to see me, we gave each other a hug, and it seems to me in the hug many memories were exchanged between the two of us. Words weren't needed, since we lived through many anxious Mattie moments together in the PICU and the clinic.

Tonight's meeting was in a way bittersweet. The sweet portion is I am hearing and learning about the needs of parents caring for hospitalized children and through my position on the board, I am able to participate in some exciting projects. Projects that The Mattie Miracle Cancer Foundation maybe able to fund and oversee. I am working on two initiatives in particular and I hope to unfold my thinking at our Foundation Walk on May 22. However, there is also a bitter side to these meetings. Tonight, our pediatric advisory board met with the Neonatal Intensive Care Unit (NICU) advisory board. Since our groups do not know each other, we all went around and introduced ourselves. Every board member is intimately involved with the hospital because his/her child was treated there. So naturally I have this in common with these board members, however, what we do not share in common is that special club I write so often about. The grieving club. Each time I have to introduce myself in this type of setting, I find that I want to scream. I want to scream because others can't possibly understand my pain. Their children are alive, their children survived. Most of them do not know how hard it is to come back to the hospital and try to help, to try to run a foundation, and to try to keep Mattie's memory alive. After the meeting was over, the woman sitting next to me came over to talk to me. She wanted to tell me that she admired me and also couldn't understand how I look so together. She told me if she were me, she doesn't think she would be able to participate in tonight's meeting. While chatting with her, another mom came up to talk with both of us. This other mom lost her premature baby after a six month battle. This other mom sits on the NICU board and she basically said the same thing I did. She said that no one understands her, no one sees that before she enters the hospital, she debates for minutes whether she is up to going in. Her internal dialogue goes like this..... Am I  up to helping someone else? Am I up to accepting that others don't understand and can be insensitive to me? I told her I appreciated her sharing her feelings with me, because we are definitely in the minority, but clearly feeling in a simple fashion.

In the midst of the meetings tonight, I learned that the fish tank Mattie loved on the fifth floor of the hospital has been removed. I can't tell you how upsetting that was for me to hear. I honestly don't know how we would have gotten Mattie out of his hospital room during the weekends without those fish. Mattie felt responsible for them, and would get up and out just to feed them. I am not sure why the loss of the fish tank seems so huge to me, but it does.

I am signing off for the evening because I feel extremely worn out from the day. As I repeat to myself often........ one day at a time, and maybe tomorrow will be different.

Monday, February 7, 2011

Monday, February 7, 2011

Tonight's picture was taken in July of 2003, in the Outer Banks of North Carolina. Fortunately that summer we stayed in a house right on the water, because that was the extent of us seeing the ocean that July. Mattie did not like the sand or the ocean for that matter in the beginning. He was far more interested in the garden hose on the deck. I love this photo because if I could give it a title, I would call it, Monkey see, Monkey do! Mattie was ALWAYS interested in whatever projects Peter was doing. Despite not walking independently, Mattie desperately tried to keep up. They were quite a twosome together!



Quote of the day: She was no longer wrestling with the grief, but could sit down with it as a lasting companion and make it a sharer in her thoughts. ~ George Eliot



I suppose George Eliot's quote is something to strive for. I want to thank so many of you for reaching out to me last night and today and sharing your thoughts about my weekend postings. My writings this weekend focused upon the challenges of cleaning out a closet filled with history and memories. Or perhaps in my case, the challenge was really to confront grief head on. I have been unable until now to really contend with the piles around me. As things came home from the hospital, and I dropped them all over the place, that is where they remained. Every living space in our home is occupied with Mattie's things, and it is hard to face the fact that I have to address this. For over a year, I wouldn't, couldn't, and refused to. But the thing is, seeing these piles is not making me feel any better. In many ways it makes me feel further trapped and isolated. So it is a catch 22. I am conflicted to live this way, and I am conflicted when I touch the piles, clean out, and reorganize. I wasn't sure I adequately conveyed in the blog the level of difficulty and pain this weekend brought, but clearly from the feedback I am getting, my words obviously struck a chord. So thank you for sharing your thoughts and support with me.

I began my day with a lovely picture of Mattie's tree. This picture was sent to me by Mattie's lower school head, Bob, aka "the magic man." Bob wrote, "As I leave my office in the evening or come in on the weekend, in the quiet of the campus I will often pause to look at Mattie’s tree. On a breezy day, of course, I can listen to it as well! This weekend I took a picture of it on my phone as I passed by. Despite some of the harsh weather that we have had, the beautiful cranes remain on its branches. And it still has its leaves!"

I agree with Bob. Isn't it fascinating that this tree doesn't lose its leaves? All the other trees around it are barren, but NOT Mattie's tree. It is a tiny but strong tree, which seems to be a very meaningful symbol of Mattie. The tree not only holds it leaves but it has a birdhouse on it, praying origami cranes, a butterfly wind chime, and its most recent addition, a butterfly Christmas tree ornament. As many of you know this tree was a gift to the school from Mattie's classmates and parents, and to us, it is a very important living symbol of Mattie's memory.



I had the wonderful opportunity to have lunch with Linda today. As many of my faithful readers know, Linda was Mattie's childlife specialist at Georgetown University Hospital. Linda was an integral part of Mattie's life and ours as well. She helped us survive many horrific days and also worked hard to make Mattie feel important, special, and normal. Linda is an amazing professional and I told her she is also part therapist. She assesses situations and people very well, and also is a beautiful patient and family advocate. Needless to say, Linda's professionalism, kindness, and compassion will remain with me always. We had a lovely lunch together and I chatted with her about ways the Mattie Miracle Cancer Foundation can help the childlife program at the hospital. One of our Foundation's goals is to address the psychosocial needs of children with cancer and their families. The term psychosocial may sound amorphous, but it actually describes very commonplace issues. In fact, every human being on this planet has a psychosocial issue and concern, and naturally when struck by cancer, such concerns, if left unaddressed, can escalate into full blown mental health issues.

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is published by the American Psychiatric Association and provides a common language and standard criteria for the classification of mental disorders. It is used in the United States and in varying degrees around the world, by clinicians, researchers, psychiatric drug regulation agencies, health insurance companies, pharmaceutical companies, and policy makers. When diagnosing a client, mental health professionals consider the extent and type of psychosocial issues present in one's life. According to the DSM,  "A psychosocial or environmental problem may be a negative life event, an environmental difficulty or deficiency, a familial or other interpersonal stressor, an inadequacy of social support of personal resources, or other problems relating to the context in which an individual's difficulties have developed. Psychosocial and Environmental Problems fall into nine categories, including:

1) Problems with primary support group
2) Problems related to the social environment
3) Educational problems
4) Occupational problems
5) Housing problems
6) Economic problems
7) Problems with access to health care services
8) Problems related to interaction with the legal system/crime
9) Other psychosocial and environmental problems

 
The point is when cancer hits a family, almost all nine categories of psychosocial issues arise. Cancer can impact your family relationships, so much so that sometimes it separates people rather than brings them closer together. Cancer can also severe friendships and leave you feeling very socially isolated. Naturally as with Mattie's case, he was unable to go to school, and missed the ability to attend first grade. We certainly had a housing problem, because we lived most of our life confined to a two by four of a hospital room. Keep in mind that meant that I slept in a chair and also shared a shower with other families! Economic problems are huge for families living with cancer. The cost of cancer care is enormous and a good percentage of families are left bankrupt from the battle. Access to health care services is also a problem, because depending upon the type of health insurance coverage you have, you quickly will see what types of services and medications your child will have access to. Plainly stated, CANCER affects individuals' ability to function in their daily activities of life. So from our Foundation's perspective cancer is a psychosocial concern and one of our mission's is to help children and their families manage the issues that arise from these categories listed above. 
 
Linda and I chatted about specific needs she sees within the hospital, and her insights helped to stimulate my thinking. As our Foundation is growing, we are in the position to begin to make a difference in the lives of children and their families, and I want to make sure whatever we are involved in, that it will be helping families psychosocially and naturally would be something that captures Mattie's incredible spirit. 
 
Peter and I received this wonderful sermon below from a colleague of Peter's. She attends The Old Presbyterian Meeting House in Alexandria, VA and the pastor at her church recently lost his son in an accident. I was so moved by this meaningful sermon, that I wanted to share it with you. I was impressed with his honesty, openneness, and his permission to be vulnerable with his congregation. Here is a man who has helped many people grieve over the years, and yet, he freely acknowledges that in all his year's of service, the death of his son has been earth shattering and unlike anything he could ever image. I can appreciate his questionning God's existence, and I understand when he is feeling uncertain about his faith, he looks to others in his life to help ground him. In a way he sees the face and hands of God in every kind action and support offered to him by those around him. I couldn't have stated it better myself. The whole message is very thought provoking and powerful and I hope you enjoy reading it as much as I did.  


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The Problems and the Promises of Waiting by Dr. Robert R. Laha, Jr


Psalm 130; Romans 8:18‐27, 31‐39

I stand here before you today to tell you that what you have heard all of your life is true, there is nothing worse than the loss of one’s own child. I am well acquainted with death. I have experienced the death of countless numbers of people over the years‐ some old, some young, some well‐known, others less so‐ and I can tell you that each and every one of them was dearly loved by their families, their churches, and by me, their pastor. I have also experienced the death of most of my family members‐ grandparents, parents, aunts, uncles, and numerous cousins. I dug the graves of my mother and my father and laid them to rest with my own hands. But in terms of their affects on me, there is not a one of those deaths or burials that can compare to the death of my son, Rob. It feels as though something or someone has reached into my chest and torn my heart into pieces.

As so many of you have said to me, “It is not supposed to be this way. Children are not supposed to die before their parents.” But they do. They die and leave big holes in our lives that can never be filled. They die and leave us changed, never again to be the persons we were before. But worse than that, their dying changes the future‐ not just theirs but ours as well. Their dying leaves us to face a radically altered future, a future with nothing but their memories to guide and console us. The theologian, Nicholas Wolterstorff, says something very similar about the death of his son. His words give voice to the tragedy of a life lost too soon and the grieving that inevitably follows such a tragedy.

“I give of myself to the formation of this other person, from helplessness to independence…I take it on myself to stay with him so that he has a future, a future in which I can delight…But now he has slipped out my arms. He’s gone and that future has been destroyed…He’s only in my memory now, not in my life. Nothing new can happen between us. Everything is sealed tight, shut in the past. But I am still here. I have to go on. I have to start over. But this new start is different from the first. Then I wasn’t carrying this load, this thing that’s over.”

As you can imagine, it is hard for me to believe that Rob’s life is really over, hard to believe that I and other members of my family have to start over without him. For the first few days after his death, I found myself in denial. It’s just a bad dream, I thought to myself. I’ll wake up and see him walking into my house, or meet him at the Home Depot, or share a meal with him at some restaurant. But I soon woke up to the realization that it was true, he was dead and I would never see him again. And then I got angry‐ angry with Rob and angry with myself. I made myself sick playing the coulda, shoulda game, second guessing all we had ever done or failed to do. Only then, did I begin to grieve in a way that I had never grieved before. And only then, did I begin to question God in a way that I had never questioned God before. I am supposed to know something about grieving. As a pastoral theologian, I have taken and taught numerous courses on grieving to seminarians and church members. As a pastor, I have grieved with and for many people. Even so, I find myself ill prepared for the kind of grieving that now consumes me and my family. Like the Psalmist, I find myself crying out from the deep, dark, and deathly places of another world, a world that I have been forced to enter against my will. I cry out “Why, God? Why did you let this happen? Why didn’t you do something to help my son?” For years, I have prayed for you to heal his mind and body from the terrible of effects of war, drugs, and alcohol. I have prayed for you to help him chase away the demons of his past so that he might find his way in life. I have prayed that you might show him how to use the enormous talents you gave him to some good end. I have prayed for you give him a home and family of his own, things for which I know he longed. But you did not do any of these things, God, a fact that hurts and confuses me.

The poet, Ann Weems, speaks to my hurt and confusion in a heart‐wrenching psalm of lament written after the death of her son, Todd.

O God, I live in the land of the forgotten.
I stretch out my hand to you
and there is nothing.
I cry night and day,
and you do not take pity on me.
I pray to you,
but you turn away.
O God, why won’t you help me?
You show compassion for your enemies
and long for the faithless to return to you,
Yet I have worshiped you
since I was a child,
and have lived in covenant with you,
yet, like a fly,
I am brushed away
from your throne
as though I don’t belong
in your presence.
How long will I have to live
outside your holiness?
How long will I have to endure
the unholy hell
of the presence of death?
How long will I have to feel
the ever‐fresh wound
of the absence
of him whom I loved?
Undo it, O God!
Give him back!
O God, why did you create a life
that includes death?
Why did you create us
to love one another
and then take from us
the ones we love?

Like Weems and so many others before me, I cannot make sense of what has happened. I cannot bring myself to say that God caused Rob’s death but neither can I say that God could not have done something to prevent it. This is what hurts and confuses me so. I grieve the fact that Rob is dead, that he did not have the time to realize his hopes and dreams. I grieve the fact that neither I, nor Sally, nor Jenny, nor Ben, nor Robyn, nor little Grace will ever again see his face or hear his voice. I grieve that none of us will ever again feel his arms around us, or ours around him. I grieve the deep, painful wounds that his death has brought to me and my family. And like C. S. Lewis, I believe that our wounds, and the wounds of all humanity, are
unanswered questions for which God must one day give an account. I have no satisfactory explanation for Rob’s untimely death. I do not know why God did not intervene and save my son. But then again, I do not know why God did not intervene and save his own son who also cried out from the darkness, “My God, my God, why have you forsaken me?” So, like the Psalmist, and like Jesus, I have to wait in the darkness for the answers, hoping that, sooner or later, I will see the light. Waiting is hard to do. I don’t like being kept in the dark. I don’t like the questions that hound me in the night. Waiting induces its own kind of suffering. But I am learning that what the scriptures say is true‐ suffering produces endurance, and endurance leads to a hope that doesn’t disappoint us.

In a sermon preached some 20 years after the death of his daughter, Laura Lue, the late John Claypool noted that there are times when the only thing God offers us “is the power to endure what cannot be changed, to allow the change to take place within us rather than in the outward circumstance we face.” For Claypool, and for me, the power to endure the death of one’s child and not fall into a deep and debilitating despair is perhaps one of the most relevant and miraculous things God can do for us. But how, you might ask, does this power manifest itself?

For me, the power to endure comes with knowing that I am not alone in my suffering, that even in the darkest valley with the shadow of death all around me, God is with me. In A Letter of Consolation, Henri Nouwen speaks to both the problems and the promises of waiting and, in doing so, he helps me to understand that death and darkness will not hem me in forever.

“If the God who loved us so much that he wanted to experience with us the total absurdity of death, then‐ yes, there must be hope; then there must be something more than death; then there must be a promise that is not fulfilled in our short existence in this world; then leaving behind the ones we love…cannot be just the destruction and cruel end of things; then indeed I have to wait for the third day.”

This, of course, is what the Apostle Paul is getting at when he says that our present sufferings are not worth comparing to the future glory that will be revealed to us. He knows that waiting is hard for us, that it makes us groan inwardly. But he also affirms that while we groan and wait for the redemption of our bodies, the Holy Spirit helps us in our weakness and intercedes for us with sighs too deep for words. The Spirit knows what we need. The Spirit also knows what God wills for us and all of creation. And the Spirit works to bring those things into harmony, doing for us what we cannot do for ourselves. Just so, we can endure this time of waiting because, as God has shown us in the work of both Jesus and the Holy Spirit, we know
that nothing, not even death, can separate us from the love of God. But the power to endure this dark and deathly time of waiting has manifested itself to me in another way that is every bit as remarkable as the first. It has come to me through other people‐ friends and family members, preachers and poets, known and unknown members of the faith community. It has come to me through people like you, people who dare to enter into my grief, people who dare to stand with me in my dark time of waiting. While I am weak, you
are strong. While I am blind, you see. While my faith falters, you stand firm in yours. While I am lost, you know the way home. And so I give thanks to God for many ways in which you ministered to me and my family.

Over these past few weeks, I have learned, as if for the first time, that nothing, not even death can separate me from the love of God. I have learned that, with your help and God’s, I can now wait with a new confidence that there will come a time when “God will wipe away every tear from our eyes, a time when death will be no more; a time when mourning and crying and pain will be no more, for the first things will have passed away…and the glory of God will be our light.” And I can wait with the confidence that such a time has already come for Rob; that for him a new morning has dawned, flooding his darkness with the glorious light of our loving God. Amen.

A sermon preached on
January 30, 2011 by
Dr. Robert R. Laha, Jr. at
The Old Presbyterian Meeting House
Alexandria, Virginia
after the death of his son, Rob.
In memoriam:
Robert R. Laha III
February 1, 1979‐December 19, 2010
Copyright 2011
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Sunday, February 6, 2011

Sunday, February 6, 2011

Tonight's picture was taken on our deck in July of 2003. Mattie had just begun to enjoy being in water, and what he really loved was playing in it. Particularly he was fascinated by things that would float, sink, and so forth. He was our little scientist, full of investigation and curiosity.

Quote of the day: There are places in the heart that do not yet exist; suffering has to enter in for them to come to be. ~  Leon Bloy

Despite the fact that we had a hawk visit us yesterday and basically devour a pigeon on our balcony, the sparrows fortunately did return today. I asked Peter what the chances are of having a hawk visit us, when we live right in the middle of the city. Our goal is to feed sparrows and small birds, and it upsets me when this hawk stops by. Mattie and I have experienced this sighting one other time, in which a hawk came down from the sky and grabbed a sparrow right off the bird feeder. Needless to say, Mattie and I were stunned and we talked about this for years.

As you can see the feeder was very busy today! In the corner of the picture, you can also see Mattie's purple stained glass butterfly that remains on our window.


I spent the entire day at home, cleaning out our walk-in closet. I was at it for over six hours. I am happy to report that I can now walk into the closet, see actual shelf space, and a level of organization. I couldn't have done this without Peter, who was removing bags as quickly as I was generating them. In the midst of all of this, Peter would come up and give me a pep talk, and acknowledge the progress being made. This is not a project I would take on during the week alone. It is something that I need support on, encouragement, and at times we land up chatting.

Peter told me tonight, as he was throwing out things I gave him, that he in essence was saying "good-bye to our future." That may sound strange to our readers, because you most likely are saying.... aren't they cleaning up and throwing things out from their past? The answer is yes, but think about why you keep things. In our case, we held onto things because it was our hope to share them with Mattie in the future. A future that will never happen. In addition, Peter and I saved things because we were not sure if we would need them again. What we learned from cancer and Mattie's death is we really don't need THINGS anymore. The objects that once meant so much to us, no longer mean a thing.

Last night, Peter and I chatted about the cleaning up and reorganization process. We are not going through things and crying, we are going through it and are simply numb. Numb again, a feeling I am well acquainted with. Though this time I am numb and disgusted at the same time. Disgusted because we can't believe what happened to our lives. I told Peter that I feel in many ways that I have jumped through several developmental stages, and instead of being where I should be chronologically, I have aged dramatically and find myself dealing with death and dying issues. As I was going through the closet, I came across the cub scout uniform I bought Mattie. I literally bought him this outfit a month before he was diagnosed with cancer. He was looking forward to starting cub scouts in the fall of 2008, and having Peter as his den leader. In addition to that, I came across Mattie's baby shoes, his baptism outfit, and several more cards that he wrote to me. So naturally none of this was easy to see and go through. There was just so much in this closet, and as we were either throwing things away or making piles for Goodwill, I just felt unhappy. This is not how life was supposed to be. I had accumulated many books over the years while raising Mattie. One of them was "What to expect during the toddler years." I asked Peter if he thought we would find a chapter on pediatric cancer in this book. Of course not! Who expects their baby to develop cancer and die!? No one!

I am exhausted tonight physically and mentally, and though I could try to describe the chaos I am cleaning and sifting through or how hard this really is on a grieving parent, no words I feel will do this justice. Sometimes only a visual picture will do. Image if you spent the last two days cleaning out a closet in your child's room. The task alone is challenging, but then factor into the equation that your child died. Typically we clean out our children's closets because new things are going in. However, in this scenario nothing new related to your child is going in, ONLY out. In a way, what is happening to the closet is it is looking more like you and LESS like your child. It is an illustration of loss in a major way.

While I have been contending with the closet, Peter has been going through thousands and thousands of Lego brick pieces. Many of the Lego bricks we are donating, but I know this task has to be hard on Peter. Peter and Mattie connected over Legos. Through Legos they created, chatted, and learned together. Legos were our saving grace through Mattie's 15 month battle with cancer, and during that time we bought every Lego kit on the market. So needless to say, Peter estimates that we have over 80,000 lego bricks in our home! We are saving some of Mattie's special creations, and the rest we will have to make peace with and say good-bye to them. Though I feel we made a significant dent this weekend, there is still so much to do, and looking at it in total is overwhelming. So we take it bit by bit and one day at a time.