In honor of Mattie's 8th birthday that is approaching, I will be posting birthday pictures over the next three days. This, of course, is the quintessential birthday picture. This picture was taken on April 4, 2002, the day Mattie was born. Mattie was born at Virginia Hospital Center and though he was delivered by c-section, he came into the world quite healthy. Or at least this is what his APGAR scores indicated. The APGAR(Activity, Pulse, Grimace, Appearance, and Respiration) test was designed to quickly evaluate a newborn's physical condition after delivery and to determine any immediate need for extra medical or emergency care. I will share the story of this actual day with you on Sunday. Mattie's birth story was something I shared with Mattie often. He loved to hear about that day, especially during times when he wanted to cuddle and be held, and I noticed in particular he wanted to hear this story when he was frightened while battling cancer. During Mattie's celebration of life event, I shared Mattie's birth date story in written format on a large poster board. I will post the story on Sunday as we remember Mattie.
Poem of the day: How We Survive by Mark Rickerby
If we are fortunate,
we are given a warning.
If not,
there is only the sudden horror,
the wrench of being torn apart;
of being reminded
that nothing is permanent,
not even the ones we love,
the ones our lives revolve around.
Life is a fragile affair.
We are all dancing
on the edge of a precipice,
a dizzying cliff so high
we can’t see the bottom.
One by one,
we lose those we love most
into the dark ravine.
So we must cherish them
without reservation.
Now.
Today.
This minute.
We will lose them
or they will lose us
someday.
This is certain.
There is no time for bickering.
And their loss
will leave a great pit in our hearts;
a pit we struggle to avoid
during the day
and fall into at night.
Some,
unable to accept this loss,
unable to determine
the worth of life without them,
jump into that black pit
spiritually or physically,
hoping to find them there.
And some survive
the shock,
the denial,
the horror,
the bargaining,
the barren, empty aching,
the unanswered prayers,
the sleepless nights
when their breath is crushed
under the weight of silence
and all that it means.
Somehow, some survive all that and,
like a flower opening after a storm,
they slowly begin to remember
the one they lost
in a different way…
The laughter,
the irrepressible spirit,
the generous heart,
the way their smile made them feel,
the encouragement they gave
even as their own dreams were dying.
And in time, they fill the pit
with other memories
the only memories that really matter.
We will still cry.
We will always cry.
But with loving reflection
more than hopeless longing.
And that is how we survive.
That is how the story should end.
That is how they would want it to be.
Peter and I went back to Georgetown University Hospital today. Our goal was to meet Linda (Mattie's childlife specialist) and donate, on behalf of the Mattie Miracle Cancer Foundation, about one hundred toys and books to the childlife program. All the items were unused toys or books which Mattie never had the chance to see or play with. That alone is a rather sad commentary. However, in honor of Mattie's 8th birthday on Sunday, we felt compelled to bring these toys to Georgetown so that children who are sick could use and enjoy them. New toys brought Mattie great joy and happiness, and if we can give this gift to other children, this would make us feel like we accomplished something. We also felt this would be a lovely way to honor Mattie's memory on this important week.
Linda met Peter and I by the entrance of the hospital with two empty wagons to cart things to the fifth floor. I haven't been to the fifth floor of the hospital since the day Mattie died. When I returned to the hospital back in November 2009 (two months after Mattie died), that was simply overwhelming for me. Mind you during that time, I just traversed the main floor of the hospital and went to the atrium outside the Lombardi Pediatric Clinic. I never visited the fifth floor until today. The fifth floor of the hospital, as many of you know, was in essence our home for over a year. It was my community, and I not only knew the facility well, but we also knew most of the staff who worked on that floor. Nurses, doctors, and support staff became our family. A family fighting very hard to cure Mattie's cancer. Before I went to the fifth floor, Linda asked me if I was okay doing this. That was a good question, and as I told her, I was going to have to do it some time. I might as well attempt it today. When I arrived on the fifth floor, we immediately bumped into staff that we knew. I spoke to cleaning staff, administrative staff, nurses, and doctors. Basically everyone in our Hospital community! Everyone felt that I looked much healthier and they liked my haircut. It was certainly nice to hear this feedback. I spoke with Miki, Nicole, CR, and Jenny. All of whom were Mattie's HEM/ONC nurses. What I quickly could feel internally was that I was NOT upset being there. It did not feel awkward, it did not make me upset. I wasn't expecting that reaction. My conclusion is.... yes, you can go home again. Visiting today seemed very natural, and I was happy to have the chance to tell these women how special they are and how I think of them each day.
I did not visit the PICU however. At the time Mattie was receiving treatment at Georgetown the HEM/ONC unit was integrated into the PICU. However, the HEM/ONC practice has their own wing on the fifth floor now. So entering this HEM/ONC unit really seemed fine because Mattie was NEVER in it. The space itself held no memories for me. It was the people who held memories for me, and my memories of these professionals are very positive and loving. So I believe this is why the visit today was so successful.
Linda unpacked all of our donations and arranged them on a table, so we could take a picture with them and the staff. It is our hope that we will be able to make continual donations to the childlife program at Georgetown. Mattie loved Linda, and we most certainly couldn't have survived without Linda and her interns. We are forever grateful to her, and Mattie would have wanted Linda and the children to have all these toys today. We placed a Mattie Miracle Cancer Foundation sticker on each of the donated items. The sticker had a beautiful picture of Mattie on it, as well as the name and website of the Foundation. Below you can see the donated items and part of Mattie's care team pictured. Debbi (Mattie's sedation nurse angel) isn't pictured, but she did visit with us!
Pictured from left to right: Miki (HEM/ONC nurse), Dr. Aziza Shad (Director of the Lombardi Pediatric Center, and the doctor on call the week Mattie died), Norma (the sedation nurse who worked with Mattie during all of his cyberknife treatments), Nicole (HEM/ONC nurse), Jenny (HEM/ONC nurse), Vicki, CR (HEM/ONC nurse, who returned after a year working in Ethiopia for the Peace Corp), Linda (Mattie's Childlife Specialist) and Peter.
After we said our good-byes, we were off on another Mattie mission. The mission was to plant forget me not seeds in different locations. At Mattie's celebration of life event, as a momento, we handed out butterfly shaped pouches that contained forget me not seeds.We have many left from that day, so we decided to honor Mattie's birthday this year by planting 15 seed packets in 8 different locations. We selected the number 15, because that is the number of months Mattie battled with cancer, and we selected 8, because Mattie would have turned 8 years old on Sunday. The first location where we planted forget me nots, was at Ann's house last weekend. Ann and her family meant a lot to Mattie, and it seemed like a fitting way to begin the planting process. The second location we selected was the rose garden at the Georgetown University Hospital. Today, Peter dug a spot between the roses and a holly tree, and planted 15 seed packets. Peter attends meetings at the Hospital once a month, and I look forward to hearing his report on how this planting is doing. The third, fourth, and fifth locations, were all special Mattie spots on Roosevelt Island. Peter and I walked the Island today and planted 15 seed packets in each of the three locations. The sixth location is in two of our flower boxes at home, and the seventh location is within the common garden area in our complex. The eighth location is to be determined on Sunday, Mattie's actual birthday. That will be our final planting stop for this year. We contemplated planting seeds at each of Mattie's schools, but RCC is planting their own set of forget me not seeds in their butterfly garden to memorialize Mattie, and SSSAS is planting a tree in May as a memorial to Mattie. So I did not think it was appropriate to start digging on these campuses without their approval. Therefore, the final stop will most likely be another place Mattie enjoyed visiting.
I have been receiving many e-mails as well, telling me that you are planting forget me not seeds or plants in your gardens this sunday. What a lovely and meaningful gesture, and a beautiful and visually pleasing way to keep Mattie's memory alive. Mattie loved the outdoors and nature, and I can't think of a better way to symbolize his life than with a forget me not!
Midafternoon, Peter and I stopped at McDonald's and ordered shakes. Mattie loved vanilla shakes. In the spring and summer time, they were one of his favorite things. Also during the beginning of his treatment phase, shakes were the only things he would consume. So in honor of Mattie, we had shakes. Today was an emotionally tiring day, but in the end, Peter and I felt as if we did the right thing. We felt good about our donation, seeing our Georgetown family, and planting flowers on behalf of Mattie.
Throughout the day, both Ann and Karen were checking in with me through text messages and e-mails. Naturally based on the things we wanted to do today, it could have been a very challenging day, so it was nice to have this support. As I was telling Ann about our planting journey, she asked me whether this could be a tradition each April 4, to tour the Mattie forget me not gardens we planted. I hadn't thought about it, but it seems like a very touching journey to think about and undertake.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I know you are worried that people may be growing bored with the blog or are turning their attentions elsewhere. I periodically check the counter that is on the blog and you are over 210, 000 hits to the blog. That's a huge number. That's more than 10 thousand hits a month for the time the blog has been up and running. Yesterday sounds like it was a day of intense ups and downs; I know we all admire the way you do your best to ride out the waves and stay somewhat close to an even keel. Today's practice was very difficult and intense and centered around change, accepting it without fighting. I am one who either fights or throws myself into something wholeheartedly and just staying, breathing and accepting even for a few moments is so very difficult for me. I could see the value of it; could feel the difference it made but I could not sustain where I was. However, by the end of the session I could see where I had improved and had a glimmer of where I could eventually go if I was patient with myself and the process. As always, I dedicate that energy to you; know the process of dealing with grief is there, it will eventually come but only if you let it. I hold you gently in my thoughts."
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