Saturday, April 10, 2010

Saturday, April 10, 2010

Tonight's picture was taken in September of 2002, when Mattie was five months old. Mattie had a high chair, but preferred eating in his car seat. Actually Mattie loved being in his car seat, as long as the seat was NOT in the car! He was opposed to the car seat in the car, because he disliked being strapped into the seat and confined in any way. As you can see from this picture, Mattie loved eating rice cereal and oatmeal. His love for oatmeal started early in life. In fact, Mattie requested to start his preschool and kindergarten years each morning with oatmeal. He was naturally a healthy eater, and for the most part never liked candy, sugary treats, and junk food. When people would give Mattie candy, he always gave it to me. He honestly did not want it, but he knew, unlike himself, I loved sugar!

Poem of the day: Your Smile ~ author unknown

Though your smile is gone forever,
And your hand I cannot touch,
I still have many memories,
Of the one I loved so much.
Your memory is my keepsake,
With which I'll never part.
God has you in His keeping,
I have you in my heart.

Peter and I had a busy day. We decided to clean up our deck and plant flowers in all of our flower boxes and pots. We haven't cleaned our deck area for quite some time. A third of our deck is still being occupied by Speedy Red. I can't part with Speedy Red, so he will remain there until I can come to peace with it. At the moment, Mattie's sandbox is outside in our commons area. I never thought others would touch this enclosed sandbox. But Peter told me today that other children in the complex do come and play in it, and even showed me the sand that was all over the place as evidence. When Peter showed me this, at first I was very upset. I guess I did not want anything of Mattie's touched. However, Peter got me to think about that, and in all reality if other children want to play with Mattie's things, that shouldn't upset me. Mattie's things brought him joy, and I am sure he would be happy to know that his sandbox brings others the same kind of joy! However, our deck is filled with rocks, acorns, shells, and pine cones. These are all items Mattie collected on his various journeys. I compiled all these Mattie items and placed them in a beach pail. These collections meant a lot to Mattie, and therefore they mean a lot to me. The pail will remain on our deck filled with these found prizes! Mattie also had a large flower planter filled with all kinds of plastic bugs! Naturally! I can't part with these either. So they will have to learn to blend into our flowers displays.

Some times going through all of Mattie's things can become overwhelming. Which most likely explains why I haven't touched anything inside our house since Mattie died. It is an internal conflict. The conflict is between wanting to preserve and honor Mattie's memory versus the desire to recover our lives and our space. I still have every hospital supply and in home nursing care supply needed for Mattie's care. Nothing has been touched, except for the untouched toys that we delivered to Georgetown Hospital. As the months wear on the conflict becomes more intense, and the quandry about what to do and how to live our lives remains. Seeing all of Mattie's rocks, shells, acorns, and pine cones today brought both a smile to my face, and tonight a tear to my eyes. Tears because when I touch Mattie's things it just doesn't make sense to me, the only tangibles left of Mattie are things. Of course these things are vital to me, because things evoke memories.

I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "I was glad to see that you found the licensure board both challenging and interesting. I was relieved to read that you were then able to assess your own needs and go on and rest in the afternoon. Self care is so important but anyone who sees themselves as a "doer" as you certainly are, tends to treat a need for rest as self indulgent and not do what is needful. Today we had a number of new people in practice and we invited them to join us where they could, take options as necessary and always remember to be mindful and breathe. We all sent energy to help them accomplish what they were able to and the increasing reflection of that, we sent to those outside the class we know who also need that energy. I sent mine to you to help you continue to find your way as it says in Nancy's poem to allow warmth, joy, laughter, happiness and song into your world. That is not to say you won't grieve but that it becomes a part of your life, not all of your being. I hold you gently in my thoughts."
 
The second message is from one of Mattie's favorite HEM/ONC nurses. Some of you may recall that Sarah Marshall is our "angel of mercy." Sarah Marshall was the nurse who worked with us through the night and the morning that Mattie died. Her actions as a nurse that morning will never be forgotten. She performed one heroic act after another. I assure you watching Mattie die was traumatic to witness whether you were his parents or a health care provider. Sarah Marshall witnessed this trauma with us, and watching what she was able to accomplish on September 8, 2009, makes me quite sure that we will always be bonded by that intense experience. Sarah Marshall wrote, "I have been thinking about this email for a few weeks now and still don't know how to begin. I thought about Mattie on Sunday, I always think about him, but I thought about him and both of you even more on his birthday. I can't believe his birthday was on Easter this year! I can't even imagine how hard the day was for you. I read some of the blog and it gives me so much happiness to know that so many people were thinking of Mattie on his big day! Again, I am at a loss for words and the only thing I can really say is that I have been thinking of yall. I have a picture of Mattie on my bulletin board in my room so I see him every single day. I miss him so much. I get updates on yall from Debbi pretty often and try and keep up with how yall are doing. Please let me know if there is anything I can ever do. Debbi said yall were thinking of having some sort of birthday celebration in May. Please keep me updated, I would love to help or at least be there!"
 
The third message is from a former student and now my friend. Susan wrote, "I was reading your blog about returning to the professional counseling licensure board in D.C. and I had an idea....remember I am an idea person not an action person. Because of Mattie's dying and the toll it has taken on you (Peter and your families) it prompted me to do some research on the loss of a child so that as a mental health professional I would be better prepared to help others in your (G-d forbid) situation. What I couldn't find was a manual on bereavement for parents (particularly Moms). Here's where the idea came in. You would be the perfect person to write such a book. Now before you even say Susan how could you think that???? I am still grieving myself!!! I know and acknowledge that. This isn't anything you'd do now but if and when you ever got to a place where you thought you could. You're an excellent mental health therapist and with the road you've walked, and are walking you have so much insight and knowledge that others could benefit from. I think of you, and Sammie's mom, and remember how so many people are just not attuned to your situation. the book could also raise awareness for those of us who want to support people in this situation but are unsure how to go about it. With your blog following it could catapult right up the Amazon list of popular books!!! And your royalties could benefit MMCF."

Friday, April 9, 2010

Friday, April 9, 2010

Tonight's picture was taken when Mattie was two months old. As you can see he was quite alert and the defining characteristic of Mattie was his hands were always moving! As if he was conducting an orchestra. Hard to believe such an active and healthy bundle could develop cancer six years later and then die. It is a sobering reality check about how fragile life really is and how little control we have over it.

Poem of the day: A TEAR FELL THIS MORNING by Nancy Heller Moskowitz

A tear fell this morning
One of many felt.
A tear fell this morning
My sadness sure to melt.
I want my 'juicy' life back.
I need to stop my talk.
A tear fell this morning
I need to walk, my walk!
A tear fell this morning
It's health and healing.
A tear fell this morning
A sign of precious feeling.
A tear fell this morning
My creative juices flow.
A tear fell this morning
The next I'll know as well.
A tear fell this morning
I'm sure it's not my last.
A tear fell this morning
A sign of just my past.
A tear fell this morning
A blessing I am told.
A tear fell this morning
Saying so long to the old.
A tear fell this morning
Earlier it meant great pain.
A tear fell this morning
It showed such little gain.
The tears have all stopped flowing.
For words, I used instead.
To make more sense of all I'm feeling
In my heart and in my head.
I think I'll go to sleep,
For just a little while.
A tear fell this morning
Oh why, Oh why, Oh why!
For a tear to fall this morning
Leaves the opening in my world
For warmth, and joy, and happiness
For laughter and for song.
A tear fell this morning
One by one by one.
A tear fell this morning
The sorrow still not done.
 
I started my day by receiving a lovely e-mail from my colleague and friend, Nancy. Nancy lives in New York and we do not see each other that often, but communicate electronically very often. Nancy wrote this poem, A Tear Fell This Morning, and wanted to share it with me. I told Nancy I related to this poem because just when you think there are no more tears to cry, they simply flow. The sorrow is just not done, and I am seeing that it may never be done. It will always be a permanent part of our lives and I see the challenge in life is how to live with this pain.
 
This morning I headed to my licensure board meeting. Remember I have been away from this position since July 2008. I was wondering if I would even recall my role, the dynamics between the board and the public, and the regulations guiding the practice of counseling in the District of Columbia. The board members and staff greeted me in a very warm and empathetic way. It seems like we mutually missed each other. Mattie's death has changed so much of my life, including how I think and feel about myself. To my surprise, re-entering the licensure board today was not a challenge at all. I slipped back into my usual feisty style. Unlike the doubts I have about myself in other aspects of my life, I had no doubts today. I felt confident in what I was doing, which was refreshing. I have always loved this position, and that feeling hasn't changed. To say I felt good about what I was doing today is something I haven't said in ages. I can't say that I forgot about my sadness for several hours, because that sadness is simply a part of me and my life. But I was able to think, concentrate, and interact with people, which can be challenging for me now.
 
When I got home after the meeting, I attempted to do some Foundation work, but I could clearly see I was simply exhausted. So unlike my usual tendency to work through that feeling, I instead decided to rest. I must have slept for two hours, and got up when Peter got home from work. We had dinner together, discussed our day, and are focused on starting our own garden this weekend. In the midst of garden planning, my downstairs is being transformed with all sorts of craft products as I design my next centerpiece for Ann's table. Even Patches is fascinated with all the materials. Now it is a matter of putting everything together. I promise pictures to those of you who expressed your interest to me.  
 
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It sounds like the foundation and the march are moving along well. I know they both take a huge amount of time and effort but I believe in the long run every minute you put in will pay dividends. I hope your licensure board meeting is not too taxing; long meetings are very difficult so remember to take breaks when you can. We were asked to invite someone to join with us in practice today who needs the healing strength it offers and so I "brought" you along with me. I hope you felt the positive energy flow I sent your way. I hold you gently in my thoughts."

Thursday, April 8, 2010

Thursday, April 8, 2010 -- Mattie has been gone 7 months today.

It is almost hard to imagine that Mattie has been gone from our lives for seven months now! In some ways it doesn't seem that long, and in other ways it seems like a lifetime ago when I was Mattie's mom. Tonight's picture was taken when Mattie was three months old. The irony is Mattie looked more like Peter when he was a baby. However, that did not last long, and by the time Mattie was a toddler, he clearly resembled me. I particularly love this picture, because even at an early age you can see how Mattie was very curious! It almost looks like he is trying to say something in this picture, doesn't it?

Poem of the day: May you be blessed by Kate Nowak
http://www.blessyoumovie.com/miami/?cm_mmc=MIAMI-_-NL-_-03.17.2010-_-MYBBmov

May you be blessed
with all things good.
May your joys, like the stars at night,
be too numerous to count.
May your victories be more abundant
than all the grains of sand
on all the beaches
on all the oceans
in all the world.
May lack and struggle
only serve to make you stronger
and may beauty order and abundance
be your constant companions.
May every pathway you choose
lead to that which is pure and good and lovely.
May every doubt and fear
be replaced by a deep abiding trust
as you behold evidence of a Higher Power
all around you.
And when there is only darkness
and the storms of life are closing in
May the light at the core of your being
illuminate the world.
May you always be aware you are loved beyond measure
and may you be willing to love unconditionally in return.
May you always feel protected and cradled
in the arms of God,
like the cherished child you are.
And when you are tempted to judge
may you be reminded that we are all ONE
and that every thought you think
reverberates across the universe,
touching everyone and everything.
And when you are tempted to hold back,
may you remember that love flows best when
it flows freely
and it is in giving that we receive
the greatest gift.
May you always have music and laughter
and may a rainbow follow every storm
May gladness wash away every disappointment
may joy dissolve every sorrow
and my love ease every pain.
May every wound bring wisdom
and every trial bring triumph
and with each passing day
may you live more abundantly than the day before.
May you be blessed
And may others be blessed by you.
This is my heartfelt wish for you.
May you be blessed.

My dad sent me the video link to this poem, "May you be blessed." I posted the link to the video above, and if you want a minute or two of peace and reflection, I encourage you to watch the video. Unlike the usual poems of grief that I post and relate to very deeply, tonight, I decided to share my hope for my readers..... may you all be blessed. Blessed because despite the pain reported here, you have the courage to come back to read what I write. Despite the fact that we lost the cancer battle with Mattie, you still haven't given up on us, and despite leading busy lives, you continue to open your hearts and minds to our tragedy. For your kindness, compassion, and loyalty, my greatest wish is..... may you be blessed.

When my dad sent me this poem today, I found it very moving. Clearly this is his wish for me as I try to cope with one of life's greatest sorrows. I watched this video twice today, because I found the sentiments in it so touching and moving. I think this speaks to my point I made the other night about a parent's love. Despite the fact that I am no longer a child, in my parent's eyes I am still their child, and they are grieving along side me. Not only because they miss Mattie, but for the deep loss in our lives. The bond between a parent and a child is hard to break, because I have witnessed that physical distance and even death can't destroy it.

This afternoon, Peter and I went out to lunch with Cynthia Duncan. Cynthia has been the executive director of Hope Street Kids for ten years. Hope Street Kids is an organization created by parents whose daughter was dying from Neuroblastoma. Tamra, a fellow SSSAS mom and member of our board, introduced us to Cynthia, and as Peter and I start learning more about the world of non-profits in the cancer community, such meetings are very important. Cynthia was delightful, and she gave us some good suggestions to look into as we learn more about networking in the world of pediatric cancer.

I spent the rest of the day at home. I literally was absorbed in my computer. Peter and I have been reaching out to all the leaders of our walk taskforce committees today. During the planning phases of last year's walk, Peter and I were inundated with Mattie's care. We literally had no idea of the level of effort and planning that went into a walk. We had some idea and of course appreciation, but I admit we were just physically and mentally incapable to manage any logistics for the 2009 walk. This year, is a bit different, and we wanted to reach out to our returning leaders, and let them know how much we appreciate their support. I know what motivates us to do this, but I continue to be in amazement by the level of commitment and support others continually show us. In fact, one of our walk committee leaders let me know today that she plans on supporting us into the future. That her presence is not a one year commitment. What can you say to something like that? Other than, we are humbly grateful and so touched that Mattie's memory and legacy is being carried forth by such wonderful people. Naturally we are deeply grateful to Liz Chiaramonte who chaired the entire walk process last year and did an amazing job, and to our dear friend, Ann, who has taken this role on this year and has her teams charged, brainstorming, and running.

As we head into Friday, and I re-enter the world of licensure board meetings, I ask that you wish me luck and keep me in your thoughts. Typical board meetings can last six hours or longer. I will never forget one meeting, we may have been there 10 hours! But the staff I have the pleasure of working with are incredibly dedicated individuals, and the feeling of contributing to the direction of the field is very stimulating.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It sounds like yesterday was a productive day for you and somewhat more upbeat. Your comments about nature being necessary spiritually are right on target; studies show that being in a quiet, natural area like a woodland or park lowers blood pressure and calms even many hyperactive children. It has to be balm for a soul suffering from grief or loss. Unfortunately, many of our hospitals, chapels, etc, have few of these areas immediately available to them; they are worth their weight in gold in my opinion. Mattie was a child who really appreciated nature so his connection to it makes it doubly important for you to get a "therapeutic dosage" of nature frequently. I do understand why it is more difficult to plant in the boxes where you used to do that with Mattie but perhaps you can plant them in his favorite colors to celebrate his time here with you. As I practice today, I will send you the energy to help you focus and begin to pick up your outside responsibilities like the licensure board. I hold you gently in my thoughts."

Wednesday, April 7, 2010

Wednesday, April 7, 2010

Tonight's picture was taken when Mattie was two months old. At two months, Mattie scared me half to death. He was making gasping sounds. I thought he was having trouble breathing. I was worried, because he would periodically make a wheezing sound. When Peter got home from work, I was so worked up over this sound, that I called Mattie's pediatrician. The pediatrician asked me all sorts of questions and really had no explanation for what I was hearing. She did say if it persisted to take Mattie to the emergency room. Do you want to know what the sound was?????? It was Mattie's first attempt at laughing! At a young age he was a character, and probably thought I was absolutely hysterical to watch as I was working myself up into a anxious fit. Once we figured out it was laughter, I am not sure who laughed more.... Mattie or myself.

Poem of the day: Hugs From Heaven by Charlotte Anselmo

When you feel a gentle breeze
Caress you when you sigh
It's a hug sent from Heaven
From a loved one way up high.
If a soft and tender raindrop
Lands upon your nose
They've added a small kiss
As fragile as a rose.
If a song you hear fills you
With a feeling of sweet love
It's a hug sent from Heaven
From someone special up above.
If you awaken in the morning
To a bluebird's chirping song
It's music sent from Heaven
To cheer you all day long.
If tiny little snowflakes
Land upon your face
It's a hug sent from Heaven
Trimmed with Angel lace.
So keep the joy in your heart
If you're lonely my dear friend
Hugs that are sent from Heaven
A broken heart will mend.

Tonight's poem, "Hugs from Heaven," captures my attention because it rightfully points out how vital nature becomes when grieving. Because I feel desperate to find a way to connect with Mattie, and of course I know I physically can't, I feel compelled to observe the full "Mattie" moon in the night's sky, to experience the gentle breezes that cause Mattie's wind chimes to twinkle, to see the delicate and ethereal fluttering of butterflies, to hear the birds singing, and even watch the forget me nots planted grow. In these beautiful aspects of nature, I see and feel Mattie. I always appreciated my natural surroundings, but now these things are not only esthetically pleasing, but they are spiritually needed.

I stayed home this morning and went through paperwork, and I am working on getting ready for my DC Licensure Board meeting on friday. The DC Licensure Board of Professional Counselors meets monthly. As the chair of the board, I have been absent from this position since July of 2008. Clearly the board could have just replaced me, but they did not. Instead, they have been extremely supportive and have given me as much time as I needed until I felt ready to return. I am not sure I am ready to return on Friday, but I know how much this position has meant to me, and how important it is in guiding the practice of professional counselors in the District of Columbia. At some point in the morning, I took a break and went down to our complex's front desk. At the desk were several packages awaiting us. Many of which came over the weekend. In time for Mattie's birthday.

Peter and I received a beautiful basket of daffodil bulbs from Kristen, Mattie's oncologist and now our friend. Kristen deeply understands our loss, as is evident in her writings each Tuesday. The day of the week that Mattie died. Kristen wanted us to know she was thinking of us on April 4, and wanted us to plant the bulbs, so that each spring, we would be have these beautiful flowers to remember Mattie. I was deeply touched by this gift. The second gift I opened was from Denise, Mattie's social worker at Georgetown University Hospital. Denise sent us a gift that was wrapped in a beautiful circular box, with a lovely silk flower and butterfly on it. Inside the box were seeds to plant in our garden that are butterfly friendly, so we can attract butterflies to our flower boxes. Both gifts today made me smile. They made me smile because I could see Mattie's life touched these two people, and they are looking for ways to help us remember Mattie's beautiful spirit. Here is yet another example of our Georgetown family thinking of us and reaching out to help!

I can't help but find it ironic that Ann gave me a book on butterflies on Mattie's birthday, and Kristen and Denise gave me plants that will inspire butterflies to visit. You should also know that the centerpiece I am working on for Abigail's Holy Communion party is a butterfly flower garden. Seems to me that butterflies are definitely significant in my life, and you can rest assure that with each one I see, I reflect on the fragility of life and the beauty of the little boy who once filled my life. I no longer have his laughter, his hugs, his tears, or his physical being, but it is within the graciousness of these butterflies that I see his spirit captured.

I had lunch today with Ann and Dr. Bob. We talked more about the Foundation and ways to generate revenue. Later in the afternoon, I went with Ann to her son, Michael's, baseball game. I haven't attended a sporting event with a child for several years now. My last experience was when I would take Mattie to his soccer practices and games. Watching boys play, made me think of Mattie. It did not make me sad per se, mainly because I think I was so absorbed in the psychology of the coaches, how they instructed or praised the kids on the team, and of course watching the attendees at the game was entertaining.

Peter and I had dinner tonight with Kathleen (one of Mattie's favorite HEM/ONC nurses) and her husband, Tony. You may recall that Kathleen called Mattie her "monkey boy." Mattie was always using "George," the name of his left leg (thanks to Dr. Bob), to fish around in Kathleen's pockets. One day Kathleen decided to put gak (a slimy green substance) in her pocket, and when Mattie's foot went into her pocket, he got quite a surprise. Needless to say he loved it! Mattie liked Kathleen a lot, and one day he called her into his PICU room. Why? She wasn't his nurse that day, but he wanted to give her a kiss and also show her his Curious George balloon. Mattie bonded with Kathleen and many of his HEM/ONC nurses. If it weren't for this special bond, for the fact that these nurses understood our stresses, and treated us with respect and as part of Mattie's care team, we would never have survived 15 LONG months of grueling treatment. In fact, I think if a HEM/ONC nurse isn't willing to get personally invested in their patients, they most likely won't make it in this profession long. That is a bold statement but most likely accurate. Their hours are extremely long and intense, and in the midst of this, they are observing parents who are frazzled and at their wits end. I believe that the connections they make with their patients further motivates them to do their job, but not just do their job, but do it with dignity and skill. Peter and I enjoyed this opportunity to see Kathleen, since at the end of the month she is moving to Kansas City. She may be moving, but the memory of what she was able to accomplish with Mattie will be alive and fresh in my mind.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am so sorry that you had a difficult day yesterday. Perhaps it was made worse because this physician is one who usually seems to understand and empathize with where you are. We come into those situations much more vulnerable than we would be if we expected poor personal treatment. I am glad that you had Ann and Alison to hear you out and that Peter also could be a sympathetic, understanding “ear.” Perhaps someday you will get to teach GWU medical interns about how to treat, talk to and really listen to their patients. I am sure you are working on all the doctors you already deal with and that they are growing and improving their personal skills as a result. One can only hope. As the weather warms up and our gardens bloom I hope that the seeds of serenity I wish for you also begin to bloom. I hold you gently in my thoughts."
 
The second message is from Mattie's social worker at Georgetown University Hospital. Denise continues to be very supportive of Peter and I, and writes to us on a regular basis. Denise wrote, "I did not want the month to go by without checking in and letting you know that I am always thinking of you both and Mattie. Time is funny how it can seem to go by fast yet slow at the same time. It hardly seems like six months have passed since we lost "our" dear Mattie. I say "our" because the team that cared for him have all pretty much adopted him as our own. Everyone still talks about him and their personal struggle in coping with the loss and missing the both of you, so please know that you are not alone. I find it comforting to look up from my desk and see his bright smile in the pumpkin patch picture or his signature on my little wall of "fame"(patient's whose talents I thought would make them famous one day). Then, there are the reminders of Mattie's days at Georgetown. I had to go to the playroom one day last week and I think it was the first time that I have been in it since Mattie was here. It seemed very different. He really knew how to command an audience and hold court:). I know this walk is difficult for you and it is one no parent wants to take. You may not see it right now, but as I have said before you are giving such a gift of hope to so many others who may be traveling this journey too. I admire your courage to share your pain with the world. That is not an easy thing to do. I do hope it gives you strength and comfort to know that so many people care for you and have come to love you. I still hurt for you and for Mattie and for all those who were and are affected by his lost. Yet, I feel so tremendously blessed to have known him and to have you all be part of the fabric of my life. I have put March for a Miracle on my calendar and hope to attend. I know that Mattie's birthday is coming up on Sunday. I can't imagine how difficult this must be for you. I just want to say, he lived with purpose and touched many lives in a very profound way. He was a blessing to each of us leaving us with some special part of himself. He's your angel and he is watching over you."

Tuesday, April 6, 2010

Tuesday, April 6, 2010 -- Mattie died 30 weeks ago today.

Tonight's picture was taken in June of 2008. One month before Mattie was diagnosed with cancer. Mattie was attending his friend, Campbell's birthday party. Mattie had a ball at this party. It involved all his favorite things, water and a moon bounce. In the picture you can see Mattie picking up items that fell from a piñata. You can clearly see him negotiating  items with the other kids.

Poem of the day: Four Candles for You

The first candle represents our grief.
The pain of losing you is intense.
It reminds us of the depth of our love for you.
This second candle represents our courage.
To confront our sorrow,
To comfort each other,
To change our lives.
This third candle we light in your memory.
For the times we laughed,
The times we cried,
The times we were angry with each other,
The silly things you did,
The caring and joy you gave us.
This fourth candle we light for our love.
We light this candle that your light will always shine.
As we enter this holiday season and share this night of remembrance
with our family and friends.
We cherish the special place in our hearts
that will always be reserved for you.
We thank you for the gift
your living brought to each of us.
We love you.
We remember you.

It seems to me that there is something about Tuesdays that just make this day of the week simply awful for me. Today did not disappoint. Just when I think a Tuesday can't get worse, believe me it can! Today marks the 30th week that Mattie has been gone from our lives. That simple fact clouds my day. I am walking around, yet over my head, I feel, floats a dark and ominous cloud. My cloud even has a name, it is called grief. However, unlike your world, where days can be somewhat clear and other days cloudy, for Peter and I the weather remains consistently the same. Mentally it is always cloudy and we are never sure when a storm of emotion will break through.

I had a follow up appointment with a doctor today. This doctor and I have a good rapport typically and she has helped me on many occasions. I will spare you the details, however, what consistently disappoints me about many medical doctors (NOT all, because I have met a handful through Mattie's illness that are special and unique professionals) is their inability to empathize, listen, and understand a patient's perspective. Hope is a very crucial word in all of our lives. Without it, what do we live for? As a mental health professional, I know that instilling hope is imperative in working with clients, who are dealing with just about any issue. After all, if there is no hope that things can change and get better, than where on earth does the motivation, commitment, or drive to hang in there, to learn new ways of thinking and coping come from? Instilling hope isn't easy, but necessary. Techniques and treatments are only as good as the hope they offer. Hope is not a concept that is only instilled by mental health professionals, I would also like to think this same vital concept applies to the medical profession. I learned through Mattie's battle that science can only take medical doctors so far in the treatment process, however, if these doctors did not instill hope in us, we could never have marched forward and helped Mattie through15 months of chemotherapy, limb salvaging surgeries, and cyberknife.

Hope is a powerful change agent, and unfortunately in my interaction with my doctor today, I felt that through her candor about personal issues she squelched my hope regarding just about everything. I also think that medical doctors sometimes do not realize that we listen to the words they use and can take them to heart. I am sure my thoughts are confusing to you because I am not talking in specifics. I am physically fine, so I don't want you to think she delivered me bad news of any kind. She did not. When she and I were talking, it had nothing to do with the medical issue I went to talk to her about. She was speaking about my loss of Mattie. My point is when talking to others, being cognizant of the words, we use with each other is important. How you express your thoughts can impact and hurt those around you. I am not suggesting you lie or suger coat your communication, but I am suggesting, if you place yourself in that person's shoes for a minute, I have a feeling you will find a more effective manner to communicate the intended information.

After this fiasco, I met up with Ann and Alison for lunch. They listened to my feelings about this doctor visit today, and then we also chatted about the walk. Mattie, Peter, and I loved last year's walk. However, being inundated with Mattie's care last year, I did not know all the behind the scenes operation of hosting such a walk. I am getting a quick lesson this year, and am SO thankful that we still have such wonderful support from our communities.

Tonight, we had our second Mattie Miracle Cancer Foundation board meeting. Our board is comprised of professionals, who lead very busy lives. Yet with that said, everyone participated in the meeting, whether live or by phone. The board has really helped us refine our mission statement and goals, and I felt as if I left the meeting charged with a more solid direction. As this unfolds, I am sure you will hear more about this direction. Peter and I feel very lucky to have connections with each of our board members and I greatly appreciate their insights and their sensitivities for how difficult a time this is for us without Mattie.

After the meeting, Peter and I walked to a restaurant close to our home. We ate dinner outside, and I filled Peter in about my day and the whirlwind of emotions going on in my head. Despite Peter having a full day at work, he seems to manage to be able to have the energy to deal with my ranting and ravings. He listens, understands, and empathizes. If that is not the sign of a true friend, then I don't know what is. At this point in my life, I feel as if I have self perception problems. I no longer feel like an educator, counselor, or parent. My public speaking abilities have suffered greatly from dealing with Mattie's cancer. I went from a person who could easily talk in front of people or in meetings each week, to having little or no interactions with groups, and thereby I no longer feel capable of doing this. I express this as an illustration to the profound impact Mattie's cancer has had on our lives, so much so that it has wreaked havoc on how I define myself as a person.

I would like to end tonight's posting with five messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I, and many others, thought of Mattie this Sunday. I believe those thoughts transcend and Mattie knows how much he was thought of, and by so many. I hope you also realize we not only think of your brave and courageous little boy but we think of you and the love that you have for him. That love too, transcends. It is felt by all of us in your writing, in your generous gifts, and your time. On this Tuesday and everyday, I remind you of how great an impact your Mattie has made on our little world. It is truly an amazing feat."

The second message, I meant to post on Sunday. It is from Meg, Mattie's racing pal. Meg was one of Linda's childlife interns, and Mattie loved her. Meg wrote, "Happy Birthday Super Mattie! You'll always be my hero. We miss you very much and your Mom and Dad are laying out a legacy for you that will last forever, just like your amazing spirit. My Easter prayer is that you are happy and curious, like always. Love you Buddy!"

The third message is from my friend, Charlie. Charlie wrote, "Somehow yesterday's blog made me think of this poem about candles. Perhaps it is because we are still discussing Mattie's birthday (and birthdays should have candles) or perhaps it is reference to candles and holidays (many light candles at Easter and we light them for Passover as well). Usually birthday candles have one for each year and one to grow on; Mattie's "grow on" candle represents the growing spread of his spirit for living and loving to so many people so spread out across the world. I can't think of a better symbol. As I practice today and work to accept the feelings that practice always seems to bring to the surface for me, I will send that energy and willingness to accept what arises to you to help you today. I hold you gently in my thoughts."

The fourth message is from one of my first teaching assistants at the University. Liz is a faithful blog reader and I appreciate her support. Liz wrote, "I have no doubt that the past few days have been particularly challenging for you and Peter. The emotions come straight through the blog and are palpable. I wanted to write on Ann's butterfly book gift to you and how Mattie is all around you in nature. You and Mattie had such a strong connection, it doesn't seem hard for me to believe that he will make his spirit known in special ways and across contexts. For years before my grandmother passed away, she would always tell me that when she was gone, she was going to come back and visit me as a butterfly. Whenever I least expected it, she'd pop out to make me smile or laugh. I always brushed it off but she was telling the truth! I can't tell you how many times since her passing a butterfly has flown by me at the most opportune moment---when I'm feeling sad, happy, pensive, you name it. I seemed to see the most butterflies in the year after her death, making me feel like she was just checking in to let me know everything was ok. These moments are heartwarming and really help me to feel connected to her. I wish you many moments like that with Mattie and I hope it brings you some peace."

The final message is from my mom. My mom wrote, "The Easter blog was a beautiful tribute to Mattie and the spirit of respect for humanity that he inspired in all who knew him in his brief but influential life. All who wrote to you expressing poignantly their grief for his loss acknowledged the power of his legendary heroic actions to change lives and make people more responsive to the trials and tribulations of others and not just walk by ignoring the suffering and pain that is so often conveniently ignored. Your blog is of great importance to anyone who has lost the ability to appreciate the daily blessings so often taken for granted and who in so doing has lost a perspective of what really matters in life!"

Monday, April 5, 2010

Monday, April 5, 2010

Tonight's picture was taken on May 4, 2002. Mattie was one month old. Peter's parents were visiting with us and bought Mattie this cute bunny. Mattie was fascinated by this bunny, and it is still in his collection today. Which for those of you who know my pack ratting tendencies, must realize that this bunny is right where Mattie left it. In his baskets by his bed filled with his favorite stuffed animals.

Poem of the day: Gone but Not Forgotten by Kelsey Y. Sheppard

You were so full of life,
Always smiling and carefree,
Life loved you being a part of it,
And I loved you being a part of me.
You could make anyone laugh,
If they were having a bad day,
No matter how sad I was,
You could take the hurt away.
Nothing could ever stop you,
Or even make you fall,
You were ready to take on the world,
Ready to do it all.
But God decided he needed you,
So from this world you left,
But you took a piece of all of us,
Our hearts are what you kept.
Your seat is now empty,
And it's hard not to see your face,
But please always know this,
No one will ever take your place.
You left without a warning,
Not even saying good-bye,
And I can't seem to stop,
Asking the question why?
Nothing will ever be the same,
The halls are empty without your laughter,
But I know you're in Heaven,
Watching over us and looking after.
I didn't see this coming,
It hit me by surprise,
And when you left this world,
A small part of me died.
Your smile could brighten anyone's day,
No matter what they were going through,
And I know everyday for the rest of my life,
I'll be missing you.

As Peter summed it up.... today was a hard day. The aftermath of Mattie's birthday put us both in a lower place than we typically are, which isn't saying much. Or actually it is saying volumes, because we operate most days with a steady level of sadness under the surface, but now this level is heightened. Some how spring and the warm weather have always brought such happiness for me, I certainly appreciate them now but I feel almost numb to the joy of such warm weather possibilities. As a parent, the warm weather can mean so many things from the end of school to summer camp plans and summer vacations. Without Mattie, even our summer seems directionless, and I did not really think about that until today.

I knew today was going to be challenging so on Saturday, I decided to make an appointment today at a spa for a pedicure. I went with the idea that I was going to sit and read a book. A book that I have been trying to read for months now. It isn't hard reading, but it does speak to my inability to focus and concentrate. Anycase, I never got to my book today. Instead I landed up talking the whole time to the lady working on my nails. She moved here from Michigan, and we talked about the comparison of Midwest and Midatlantic lifestyles. We had fun chatting, but I would imagine from my conversation she would never have guessed that I lost my son almost 7 months ago.

While I was at the spa today, I received a beautiful e-mail from our friend Carolyn. Carolyn's daughter and Mattie were in the same preschool class at Resurrection Children's Center. Carolyn's e-mail was so beautiful and so meaningful, that while reading it I landed up crying. Right in the middle of the spa.
It is funny about my crying. When you would expect that an event or situation would make me cry, I don't cry, but it is in the unexpected situations or circumstances, that things just hit me. Most likely because I am not prepared for them! I can feel that glossed over feeling of numbness taking over me this week. I worked many months to move passed that, but I am right back to square one this week. I suppose this is how grief works, and sometimes I just have to accept it. I am protecting myself for some reason, and I am sure in time, I too will understand why. However, despite being numb, Carolyn's message got to me today. Maybe I needed to hear what she was telling me. That I am making a difference, that Mattie will continued to be remembered, not only by the adults that knew him, but in the young hearts and minds of his friends. I posted Carolyn's message below tonight, so you can read it for yourself.

This afternoon I headed to Ann's house. I got there before she was home, and started working on watering and weeding her garden. She hasn't asked me to do this, I have just taken this upon myself. Being outside and gardening are therapeutic for me, and right now seeing things grow and look healthy seem to help me focus upon something other than my usual feelings of sorrow and sadness. The irony is, neither Peter or I feel motivated to tend to our own garden at home. Some thing we ALWAYS loved doing. But for us, our gardening helper was Mattie. Without his presence, it seems like we don't even know where to begin. Or that we don't want to begin. Which leaves me without things to care for. So Ann's garden serves multiple purposes for me. Later in the day, Ann handed me a wrapped present. I could feel it was a book, and I figured she was giving me something for Easter. I knew Ann wouldn't give me a book to read per se, because our continual joke is.... what page are you on now in the book you have been reading for months!? When I got home, I opened the present and saw it was a Pocket Guide to Butterflies and Moths. Inside the book, she wrote me a beautiful note. Which in essence was wishing Mattie a happy 8th birthday, reminding me that I will always be his mom, that Mattie wants me to happy, and that Mattie's presence surrounds me in nature, especially in the butterflies that flutter by. Mattie loved butterflies, and he savored every butterfly garden he visited, which is why a book on butterflies seemed so appropriate for the mother of a BUG lover. I am not sure why this gift meant so much to me. Maybe because I wasn't expecting a gift. However, this gift somehow made me concretely see that I once was a mother, that there was something tangible to open to prove my role and Mattie's existence. I am sure that sounds strange to my readers, but I will not forget that on Mattie's 8th birthday I actually received this gift from Ann.

When I got home today, I met up with Maria. Maria manages the leasing office in our complex. Maria has known us for 15 years, and is a faithful blog reader. She has seen me develop from graduate student, to wife, and then mother. We talked about many things, and she wanted me to know how much she admires Peter and I, and under the circumstances how well we are managing. Believe it or not, I do need to hear this feedback, and it meant a lot to me today to receive it.

Peter and I had an hour long conference call today with Sean Swarner's agent. We discussed the "March for a MMCF Miracle" in detail, and how we can connect Sean's mission with the mission of our Foundation. After this call, Peter got home, and we went for an hour long walk by the Potomac River. It is our hope that we can do this on a regular basis. We need the physical activity and this time to connect with each other.

This evening, I had the opportunity to read a blog that is maintained by Sammie's mom, Chris. As many of my readers know, Sammie had Osteosarcoma as well, and died about a month after Mattie. I started reading Sammie's blog in the spring of 2009. I found Chris' insights into the dying process and how she felt emotionally, very meaningful and helpful. Now that we are both dealing or trying to deal with the loss of our children, I find that she and I parallel each other in feelings. Chris lives on the West Coast, but for all intensive purposes she might as well live in my house. She expresses the same feelings I do, and though I am deeply saddened to read what she is coping with, it makes me understand that I am not alone. That our feelings of sadness, directionless, and at times hopelessness are a part of our lives now and into the future.

I would like to end tonight's posting with four messages. The first message is from my friend, Charlie. Charlie wrote, "Yesterday was a day full of Mattie. I know it was tough for you but his spirit was met with rejoicing by all of us who remembered and honored who he was. It was lovely to read about where you and so many others planted the seeds that will remind us of Mattie. As Tanja said in her email to you, the seeds of the forget me nots, like Mattie's spirit and memories, have spread far and wide and will take root and bloom in places we can't even imagine. What a wonderful and fitting memorial to a special boy. And his spirit continues to grow and bloom in his friends as well. May today be a day in which some joy begins to bloom in your heart. I hold you gently in my thoughts."

The second message is from a fellow RCC parent and friend, Mary. Mary wrote, "We did plant our forget me not seeds for Mattie today. Abby asked me if it was okay to sing Happy Birthday to Mattie. Of course, we said yes. What you have to realize is that when we sing Happy Birthday in our family, the whole family sings, right down to our dog, Max. For some reason Max just howls when he hears the tune. I hope Mattie heard this today! We also purchased a few cups of lemonade at the Henshaw’s house today. We thought about your family a lot today!"


The third message is from my colleague and friend, Nancy. Nancy wrote, "We just got home from visiting friends. I had wanted to send you wishes earlier today as I remembered that it was Mattie's birthday. I understand what a difficult day it was , yet, was so taken with the generosity and friendship displayed today. How beautiful an idea to float the balloons and eat vanilla cupcakes on Roosevelt Island! Rituals are so important in our lives and this just may be a blessed way to honor Mattie each April 4th. I was talking and thinking about you yesterday as I took a Magnolia Walk with approximately 20 people on our Roosevelt Island. I told everyone about your trips to your island. Of course, we live on ours as well as enjoy the beautiful trees, the East River, and other natural wonders. I learned that your Roosevelt Island honors Teddy Roosevelt as ours honors FDR. Your Mom's poem was so beautiful and captured Mattie's essence. He does teach so many of us to appreciate our time together. I am sorry that you had to have such sadness today. As with most days of mourning you found a special joy in being with that little girl as she showed you something that Mattie would have loved. I think he was visiting you through her. I loved that Patches enjoyed Speedy Red and think of that car often. In order to appreciate our blessings, we need to acknowledge our pains. I hope that you slept ok tonight and had good memories of your happier times with Mattie. He did look happy in today's picture and how lucky was he to have two great celebrations last year."

The fourth message is from a fellow RCC parent and our friend, Carolyn. Carolyn wrote, "I know I start each of my e-mails to you by apologizing that it has been so long since I last touched base – and, unfortunately, this one is no different. It is sad to say that “all of life’s little things” seem to consume my days and leave me with very little personal time for catching up with friends (but I’m working on this). I had fallen a few days behind in my blog reading – and after catching up this morning, I just have to write to tell you just how amazing you are and comment on all of the beautiful sentiments expressed by so many this birthday/Easter weekend. I can not begin to imagine just how difficult this particular weekend was for you and Peter – but I hope you find some peace and comfort in knowing how many of us were thinking of you, Peter and Mattie this weekend. I have to tell you that I obviously think of you guys every day as I am a faithful blog reader. I tend to start my day at the office with a cup of coffee and by checking the blog. It starts my day off by setting the tone to “not sweat the small stuff” and appreciate every second I am given with my kids, my family and my friends. In all honesty, through your blog writing, you have made me a better mother, friend and human being and my life is so much richer because of that. I can not thank you enough for sharing the past 18 months of your life with me and opening my eyes to what is truly important in life. Although I consciously choose to reflect and remember Mattie on a daily basis, what continues to amaze me is Ellie’s reflection on Mattie. Please know that Mattie’s memory is also very alive within her. Although Ellie never really had the opportunity to play with Mattie much outside of RCC, she refers to him as one of her best pre-school friends. And it seems that about every 2 weeks or so she brings him up to me in one way or another. For instance, last week while driving home from school (after what was apparently a little bit of a bad day for her) she was very quiet and then randomly asked me “Mommy, why did Mattie have to die?” As we talked through this I asked her what made her think of Mattie – and her response was “when I am sad I think of Mattie and I miss him.” This weekend we were also doing a lot of yard work and I pulled out my packet of butterfly seeds as well – but before I told Ellie that we were going to plant them for Mattie this weekend we went to Home Depot for the long list of home project items we needed. Ellie insisted that she wanted to buy some seeds and make her own garden – and, wouldn’t you know what seeds she picked out - “forget-me-nots” – so when I told her about the forget-me-nots I had at home she was so excited and decided to buy even more and plant them all around our yard so that Mattie could see them from heaven. Ellie, and Gavin and I lit candles after Easter mass yesterday for Mattie – to wish him a happy birthday – and to acknowledge that, in my heart, I believe he is in a much better place than we are – where he can be a happy little boy, without pain and suffering. And I added an extra prayer for you and Peter, that you may continue to have the strength to get through each new day and continue to educate and motivate everyone that you come in contact with. You are both such amazing people and deserve only the best."

Sunday, April 4, 2010

Sunday, April 4, 2010 -- Mattie's 8th Birthday

Tonight's picture was taken last year on Mattie's birthday in the PICU! Mattie received many wonderful balloons from his friends, and he was thrilled to be the proud recipient of all of them. Mattie had two birthday parties last year, one in the hospital on his actual birthday, and one in May with all his friends. I couldn't plan either party. Linda, along with Ann, Ellen, and Christine, took care of the hospital party. Then Christine hosted a "reptiles alive" party for Mattie at her house. Ann arranged for this company to bring all sorts of bugs and creepy crawling things because she knew how much Mattie would love it. Christine's husband, James, even dressed up as a cockroach at the party. Mattie had a fabulous 7th birthday! But honestly I never knew I wouldn't have him here with me this year.

Poem of the day: The Magnificent Seven by Virginia R. Sardi

Sun, moon, stars above the earth so high,
Precious jewels aglow in a heavenly blue velvet sky,
Awake a longing to see your incredible smiling face,
And the unforgettable magnetic essence of your inner grace,
When the wonder of you vanished in thin air leaving not a trace,
Dreams alone seem powerless to capture,
The radiance in life with which you could so magically enrapture,
All who so loved you and watched you fight,
The toughest battle of your life,
Your courage was heroic in the struggle that you endured,
The Mattie Miracle Legend lives and its promise can be assured,
That new research and drugs for the future is insured,
So that other cancer children will live long and have hope of being cured
Contemplating those precious moments spent with you,
Worth more than silver and gold,
Implanted in our hearts,
Forever to cherish, love and hold,
Makes our hearts pursue a thought imaginative and bold,
Let’s reverse the clock, so its magical powers cast a spell,
As our journey begins with the sound of an enchanted bell
Let’s rotate the hour hand backwards on its circular track,
Taking us through time forever going back,
To the days of Mattie Magic in one explosive blast,
Where Mattie time will be made to last and last and last,
For no more like the grains of sand in an hourglass,
Will time vanish as it once did when it went by much too fast
Now at peace, no more pain, frustrations and fears,
Nothing else could ever take your place or dry our endless tears
God granted only the magnificent seven,
Then took our little angel with Him right back to heaven,
On Easter Sunday, the Risen Lord inspires our abiding faith
That we will meet again somewhere again at a future promised date
Until that new beginning, we must learn to cope
Accept our fate and aspire to that elusive but eternal hope

My mom's poem captures all the sentiments of today. Mattie gave us 7 magnificent years, and it is quite painful to accept on his 8th birthday that he is not here with us. We only can hope that he is at peace, not in pain, not missing us, but happy. Easter Sunday is a very meaningful holiday in the Roman Catholic religion, and on some level I can only hope that Mattie's 8th birthday fell on this holiday NOT by coincidence, but perhaps as a symbol that he too has been resurrected. Nonetheless, Peter and I both braced ourselves for a cataclysmic day. We spent the day together, made no phone calls at all, and interacted with no one. I am not sure if this was the best way to spend the day, but it was the way we decided to spend it to survive. Being Easter, we just couldn't handle the festivities associated with the day, the joy on children's faces, the happiness families feel, and all the while quietly managing the despair within our hearts.

I had no real motivation to wake up this morning, but as I was coming into consciousness, I was receiving text messages from Tanja. She was letting me know that her family was on Roosevelt Island and celebrating Mattie's birthday by releasing 8 balloons (1 star happy birthday balloon, 6 red balloons, and 1 yellow balloon for Easter) and then eating vanilla frosted cupcakes (another Mattie favorite). Tanja let me know when she was releasing the balloons so that we could look out our windows and perhaps see them. I was deeply touched by her family's strong desire to remember Mattie, that I got out of bed, looked out the window and continued writing Tanja back and forth for updates. I have included pictures in tonight's blog so you can see the balloon release and as well as the lemonade sale that Ann's children did today to raise money for the Mattie Miracle Cancer Foundation. The children raised over $22 selling lemonade, and I was very impressed with their entrepreneurial spirit and also their desire to remember their friend. I must believe in Mattie's death, that his friends are learning on some level that life is precious, and not always a guarantee. In addition, they are learning at a young age, that keeping a memory alive in one's heart and mind takes effort, and through these memories it inspires us all to be better people and to fight for the causes we are passionate about.

Center: Katharina and her mom, Tanja, releasing 8 balloons on Roosevelt Island. Where they were standing, happened to be one of Mattie's favorite places on the boardwalk.

Left: Katharina and Tanja on the bridge leading to Roosevelt Island, holding two of Mattie's favorite things, balloons and vanilla frosted cupcakes

Right: The Lemonade Sale for the Mattie Miracle Cancer Foundation. Pictured from left to right is Katharina, Katie (Ann's daughter), Abigail (Ann's daughter), Lexi (a friend of Katie's), and Jackson (a friend of Abigail's)

I am so pleased to hear about all the wonderful forget me not flowers being planted all over the country in Mattie's honor! I thank many of you for writing to me and keeping me posted. My lifetime friend, Karen, wrote to me today and let me know she was planting flowers at her Uncle's house in New Jersey. She told me while planting her teenage cousins (who lost their mom to cancer) were watching her and absorbing what she was doing on Mattie's behalf. They did not say anything, but Karen said these two teens landed up leaving the house for a while. She did not know where they went with their father. When they got back, they told her they went to visit their mother's grave. I was very moved by this story. Through Mattie's birthday memories, this helped these children to stop and realize they missed their mom, and wanted to spend time with her, even if that meant visiting her grave. This story gave me pause, because even in Mattie's death, he is teaching us a lot. He is teaching us to feel, to express these feelings, to understand that there is no greater bond than between a child and a parent, and that this shouldn't be forgotten.

Peter and I planted the 8th set of forget me not seeds today at Huntley Meadows. Mattie loved visiting this wildlife preserve. While walking the park to find the right planting place, we walked along the boardwalk. There was a little girl on the boardwalk with her parents. She must have been about 6. When she saw Peter and I pass, I read her face with excitement. She clearly wanted to show us something. So I walked over, and she showed me a brown water snake slithering by in the vegetation. She was fascinated because it was after a frog. I thanked her for pointing this out to me, and I couldn't help but wonder if Mattie was with me at that moment. He loved snakes mainly because I hated them. He loved scaring me with these kinds of creepy crawling things. We saw many beautiful sights along our walk today from turtles, geese, and ducks. Huntley Meadows is another special find in the Washington, DC area, and we selected a planting place near one of the look out towers that Mattie used to love to climb!

Peter and I had dinner outside on our deck tonight, and while eating, Patches (our calico cat) walked outside and jumped right into Speedy Red. I couldn't get over what I was seeing. When Mattie was in Speedy Red, Patches was deathly afraid of the car. However, Patches felt compelled to check it out and sit inside it tonight. I don't think that was by coincidence. Patches loved Mattie, and she spends most of her days now in Mattie's room sitting on his bed or on his clothes. She realizes that an important member of our family is missing and is trying to understand this in her own way. So all three of us were trying to connect with Mattie in some way today.

As the day is coming to a conclusion, I feel I have regressed back to feeling numb again. Perhaps this is the mode I have adopted to get through the day, and as most grief counselors know, it is the following days after preparing for such a day that emotions usually hit quite hard. As I promised, I want to share the story I used to tell Mattie about the day he was born. I wrote this story and displayed it on a poster board during Mattie's celebration of life event. I hope you enjoy reading it, because I know Mattie always loved hearing it.

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My Dearest Mattie,

It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.

This video (the one we showed at Mattie's celebration of life) is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.

Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.

So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.

I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.

When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.

The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.

Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!

Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!

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I would like to end tonight's posting with 8 messages I received today. The first message is from Mattie's head of St. Stephen's/St. Agnes School, Joan Holden. Joan wrote, "Dear Vicki and Pete, Although it is Easter I know it is also Mattie's birth date. My heart is heavy and I am thinking about you. We all loved him so much."

The second message is from my friend, Charlie. Charlie wrote, "I read your comment about the phone with great interest. I am the same way. I would prefer to be with someone or to communicate via the computer. I think may be because we are communicators who depend on body language with voice cues to understand what someone is saying to us. I have great difficulty processing one without the other. If I have neither one, (that is, reading text or email) it is more like reading a personal letter and doesn't bother me. Perhaps it is that way for you as well? I decided to plant my forget me nots under my butterfly bush. I know Mattie loved all sorts of insects and so I thought that would be an appropriate place for his flowers. In addition, I will be sending you a check today for the foundation in honor of his birthday and my father's (may their names be for blessed memories) since they share the day. On this, Easter Sunday and tonight, the start of the last night of Passover, may you find some comfort in these joint holidays of rebirth and renewal. I hold you gently in my thoughts."

The third message is from Brandon's (Mattie's big buddy) mom, Toni. Toni wrote, "We planted our Forget Me Nots while listening to ABBA music! Ashley (Brandon's sister) also planted some flower seeds in New York."

The fourth message is from Tricia's (one of Mattie's favorite HEM/ONC nurses) daughter, Nicole. Nicole wrote, "Happy Birthday Mattie! We all love and miss you so so much especially my mom and dad. We think of you all every day and I read the blog daily. Your mom and dad are making you proud by standing up and fighting against Osteosarcoma."

The fifth message is from a former student and friend of mine, Susan. Susan wrote, "I wanted to let you know I was thinking of you, Peter and Mattie this morning! As I read about your love of gardening, I wish you were available as a landscaper because boy does our back yard need help. Because of this Eric and I were looking at gardening plans from Better Homes and Gardens last night. One of the plans we selected has a type of forget-me-nots in it. I don't necessarily believe in coincidences but rather a type of life force (I call it G-d but whatever appeals to a person) so when I realized there were these flowers in the design, it made me smile. Even when we aren't consciously thinking of Mattie.....there he is, popping up all over."

The sixth message is from a colleague and friend of mine, Sara. Sara wrote, "I know this is a difficult weekend for you. I just want to let you know I am thinking of you and wishing you peace. On this day, a beautiful, wonderful little boy was born and your lives were blessed. I know you had many wonderful times with him, although too few. He is on my mind today, and many days, as are the both of you."

The seventh message is from a former student of mine, Betsy. Some of you may recall that Betsy and I bumped into each other several times this winter at Abigail's ice skating rink. Betsy wrote, "Just wanted to tell you that I'm thinking of you today. I know today is not an easy day. I can't really fathom your heartache. I can only share my thoughts about how Mattie is doing today. I like to think that Mattie is celebrating his birthday in heaven today, on a day that must be a joyful day there already. My hopes are that he is having a great day and while obviously missing you and Peter, he is being made to feel very welcome in his new home. I'm sure he has an enormous group of supporters up there in heaven who have fallen in love with him in the short time he's been there, and are making this day very special for him. In the mean time, know that you will get through today a stronger mom. And even though you probably don't feel very strong, that strength is helping you to continue living and touching others in a special way every day. I'm sending a hug through e-mail, as ridiculous as that sounds, but it's what I wish I could give you today."

The eighth message is from our friend, Tanja. Tanja wrote, "I just wanted to tell you a little bit about our Mattie Birthday trip to Roosevelt Island. We were quite a sight to see. Everybody's eyes followed us and had questions on their faces. One lady asked Tyler if the balloons were for a birthday and he briefly explained to her that they were for a little boy - a dear friend of ours - who passed away of cancer. As you can imagine, she did not expect this answer and did not know how to react. Clearly, Mattie continues to surprise, stun and make people think! As we finally found a spot where we had a clearing to let the balloons fly, we said a loud Happy Birthday Mattie - and released them. Initially, the wind carried them straight to a tree and I was scared that they would get stuck. To my surprise, the balloons navigated through all the branches!!! All of them made it! None of them popped although I was sure they would get stuck or pop. I'm sorry you were not able to see them. But I hope the pictures will speak their own words to you. Also, I wanted to say a few words about the "Forget me not" seeds. These flowers have been my most favorite ones since I was a little child and saw them in my grandmother's garden. I always loved the delicate shape and beautiful tiny petals. What I liked most about them was that they seemed indestructable. I could pick them, create arrangements, braids, etc. and they continued to look gorgeous for a long time. So when you passed out the seeds at Mattie's celebration of life, I could not think of a better flower to remember Mattie - not just because of its name but also for its characteristics of beauty, delicacy and endurance. Another characteristic of them is that they continue to spread .... Once you have planted them, there is no getting rid of them! Even if you rip them out of the ground, the following year you will find new Forget Me Nots in places in you garden where you didn't even plant them. At the end of their blooming time, they have thousands and thousands of tiny seeds that can be easily blown to many different places by the wind. I strongly believe that Mattie's spirit and the story of his life will spread forever just like those flowers. Your Foundation and your dedication to it will spread the word about Osteosarcoma and childhood cancer. You will make a difference and be successful in your goals."