Saturday, March 1, 2014

Saturday, March 1, 2014

Tonight's picture was taken in December of 2006. We took Mattie to Florida for New Year's. On our last day, we ventured to Flamingo Gardens, one of my favorite parks, outside of Butterfly World (also in Florida). We did a lot during our trip to Florida, but I did not want to head back home without taking Mattie back to Flamingo Gardens. This photo captures the last time we were there as a family. In a way this reminds me that you can't wait to do something, because the future isn't guaranteed. 


Quote of the day: I've helped people get rid of headaches by placing my hand on their forehead, and backaches by placing my hand on their back. It's a powerful example of love that really works. ~ Shelley Long


Maybe Shelley Long should come visit me, because I can't get rid of an absolutely horrible headache. I have had an intense headache now for weeks! Not to mention then battling on top of that the flu and then a sinus infection. It has been one thing after another and the whole picture is simply debilitating. I feel chronically ill now for almost a month. Some how feeling sick makes me sadder and more depressed. The fear being...... will this level of intense pain ever dissipate? 

Living life with chronic headaches is nothing new for me. This year marks the 12th year of daily chronic headaches, and though they aren't pleasant, I have found a way to work through them. When the headaches become extreme and migraine like, like today, then functioning is hard. Life seems much harder on days like today, and I envy those who don't get headaches much less migraines. So tonight's blog is short, with the hopes that tomorrow is a better day.

Friday, February 28, 2014

Friday, February 28, 2014

Tonight's picture was taken in February of 2008. Only five months before Mattie was diagnosed with cancer. That weekend, as we did on many weekends, went to visit Roosevelt Island. While crossing the bridge over to the Island, Mattie stopped to feed the ducks. It was a favorite past time for both of us. Mattie usually had crackers or bread in hand for just such moments! 

Quote of the day: Every winner has scars. ~ Robert Nix

I spent the first part of the day working on Foundation items and then jumped into the car with the motivation to buy my friend Mary a bird feeder. Mary is my 85 year old friend who was just moved into her daughter's home. Mary has a beautiful window to look out of and it really serves as an ideal setting and location to feed the birds. 

When Mattie was a toddler, we began to feed the birds in the winter time. It was wonderful for us. We spent a lot of time at home, and yet could look out the window, observe nature, the behavior of birds, classify birds, and truly become engaged with nature. Which is hard to do in the cold, grey winter months. The birds have been a refuge for me for years. After Mattie died, I truly needed the birds! The way I look at it..... we have been feeding the same sparrow population for years. We have troops of birds that visit us daily, and come back year to year. So much so, that I have to restock both of my feeders DAILY! That is how much seed they go through. I love watching them while I work by my desk! I can hear them fluttering about, squawking at each other, and chirping. It is my hope that I can bring some of this natural entertainment into Mary's world.

Unlike on my deck, I had some logistical issues to manage with regard to the placement of feeders by Mary's window. I couldn't use a bracket or hook, so I had to come up with another strategy. I spent some time at Home Depot, and even got a salesperson involved. But after several consults, they all agreed that my solution was best. So I bought a metal flower basket stand and got two bird feeders to hang off of it. It is my hope that Mary can see this and that the birds decide to visit! It may take them a while to figure out this location, but my wish is Mary can see the excitement I live with daily. Watching nature has a way of being therapeutic and also engages the mind and spirit.

This afternoon I had the opportunity to spend a few hours with Mary. Mary sleeps most of the time, but on occasion wakes up. When she wakes up she does look to see who is sitting with her. Mary is used to my presence, in the years past, it wasn't atypical for her to wake up and find me in her room. I am quite sure despite being unable to talk that Mary is very aware of her surroundings and who is with her. While feeding her ice cream, which to me is the food of champions, I was sitting on her bed and leaning over her. Though she is weak and not moving much, her finger managed to find my hand. She used her finger in such a way as to hold my hand and then decided to play with my charm bracelet. Mary and I both wear charm bracelets. 

When I first met Mary five years ago, she told me about her charm bracelet. Back then she wasn't wearing the bracelet, but NOW she does. Her charms are special to her. She has one charm for her daughter and one for her son. After she described the bracelet and I saw her interest in it, I asked her where she kept it. She wasn't sure, but she gave me a general idea. After doing some searching, I found it in her assisted living room, and literally placed the bracelet on her wrist. She has been wearing it ever since I put it on her! 

Like Mary's bracelet, my charm bracelet is special to me because it is a memory bracelet in honor of Mattie. We have talked about our bracelets before, so I was not at all surprised that Mary began playing with my charms today. Yet another thing we shared in common. 

Thursday, February 27, 2014

Thursday, February 27, 2014

Tonight's picture was taken in February of 2009. At first glance this photo may seem innocuous. But it really wasn't! It captured Mattie's antics in the hospital. He had a glue gun in his hands and of course that was what he wanted his nurses to focus on. But look closely at Mattie's foot! What was sitting on top of it??? A PLASTIC ROACH! Mattie was full of this kind of humor. He loved to see his nurses jump, scream, and laugh! I will never forget some nights in the PICU, Mattie would send a battery powered tarantula down to the nurses' station, or better yet, one night (and I am talking around midnight), Mattie had Peter blow up rubber glove balloons. He then attached every balloon to a remote controlled car and sent it zooming to the nurses station, with an "I LOVE you" sign! He was hysterical! Despite being six, Mattie was fully plugged into human dynamics and quickly in the treatment process Mattie assessed that he could trust his nurses and his behavior illustrated this feeling. 


Quote of the day: What a different place this world would be if people remembered that grief is born of love and all acts of grief are normal, healthy, and expected. ~ Rae Anne Fredrickson


As my faithful readers know, I have a friend named Mary. Mary is 85 years old and for the passed five years has lived in an assisted living facility. As Mary's life is coming to a close, her daughter decided to bring Mary to her home so she could be around family as she dies. Where a person dies is a very personal decision. Does one die at home or in a hospital or other facility? In theory there is really no right or wrong answer to this dilemma, but there is always a right or wrong answer for the person in question and the family. Finding the best solution for all involved is key. 

I must admit I am biased about where one dies. Fortunately for us, Mattie chose to die at Georgetown University Hospital. Mattie had the where with all to realize that he wanted to be surrounded by his hospital family. A family he deemed trustworthy and who could meet his medical needs. He was brilliant, because there was ABSOLUTELY NO way Peter and I could have managed Mattie's death. Mattie's death was horrific. He was drowning from within, he was gasping for air, his whole chest was vibrating with a "death rattle" and he was in agonizing pain. So much pain that IV pain killers and boluses of pain killers every two minutes weren't cutting it! We needed a PICU team helping us. So having experienced death in this fashion with my own child, it is therefore my hope that my reader could appreciate my bias on this subject matter.

I went to visit Mary last night for a few hours at her assisted living facility. I also got to see two of Mary's aides who I have come to know over the years. One of whom thinks I am Mary's other daughter. Of course I remind her that I am only a friend. Today, I got to sit with Mary at her daughter's house. Mary was more alert today and opened her eyes many times to stare at me and to listen to me as I was talking to her caregiver. Mary was always a social person and when she opens her eyes, I can see she is indeed with us. She is not glazed or dazed out. She tracked me and looked at photos I showed her. So I know she is in there! It may seem inappropriate to talk in the room of someone who is dying, but I truly don't believe that it is. While Mary is part of this world, I think it is important for her to live in it, in whatever capacity she is able to. So I opened the blinds, gave her a weather report and got her oriented to the fact that it was day time. 

Naturally as I reflect on the fact that my friend is dying, this is a hard reality. Mary and I may not share a long history together, but the history we do share is intense. I spent a great deal of time with Mary once Mattie died. She was my first friend that I met who lost a child to cancer. This was a huge commonality for us. Others may try to understand us, but we got each other immediately, despite our large age difference. About a month after Mattie died, Mary's husband also died. So literally we were grieving huge losses at the same time, together. Both of us were stunned, dazed, and confused. Yet we had each other. When I was feeling down or without a purpose, I had Mary who needed my help, and through that help, it forced me to re-engage in the world. It gave me a purpose and a reason for living. With the pending death of Mary, a part of me pauses and wonders what will I do without this friendship? A friendship that has helped to ground me, made me feel needed, and understood. Mary used to call me, "her angel," when she could talk, and though I am no angel, some people have the way of bringing out the best in you. Mary was that kind of person for me. Yet who really knows this? After all, I am not Mary's family member, and Mary can't talk and express herself now. I suppose some gifts in life are best known for one's self and having the confidence in knowing what was between us, will always be between us. 

Wednesday, February 26, 2014

Wednesday, February 26, 2014

Tonight's picture was taken in February of 2009. Mattie was home between treatments. Our therapy was building with Legos. As you can see Mattie constructed this beautiful row house with Peter. This house is still on display in our living room. When Mattie was battling cancer, we were up at all hours of the night. It is funny how the body can get used to practically no sleep and yet function under the most dire of circumstances in which Peter and I made life and death decisions daily for Mattie's care. 

Quote of the day: Connecting with those you know love, like and appreciate you restores the spirit and give you energy to keep moving forward in this life. ~ Deborah Day


Today I had the opportunity to have lunch at the Georgetown Hospital. I went to meet with the team who coordinates and runs the monthly pediatric nurse support group luncheon that Mattie Miracle funds. This coming year will be our third year funding this important psychosocial resource. However, planning a support group for nurses is super challenging. It is challenging because of timing and the environment. In a pediatric unit there is really no set schedule per se. So there isn't a set lunch break. Nurses are juggling giving chemo, charting, meeting with doctors and other personnel, and of course managing family concerns. This makes it almost impossible for them to take 30 minutes even for lunch, much less to attend a support group meeting. In addition, given the fact that they are dealing with crises and life and death issues, I imagine it is very hard for nurses to step out of that environment into a support group to talk about feelings and thoughts. Honestly when working in such an environment, you have to hunker down, focus, and put emotions on the back burner sometimes. I am learning a great deal about the complexities of hosting such a support group in an in-patient pediatric setting, but given all the obstacles that the setting provides, the support group is still necessary, it is still attended, and progress is being made. I meet with the support group planning team every couple of months for updates.

The two individuals I had lunch with today, I also happen to know quite well. One was Mattie's nurse and the other was Mattie's chaplain. It was lovely to be able to sit down for two hours over lunch and talk about the support group and in the process talk about Mattie and my own experiences. Experiences which do give me important insights into the climate faced by nurses. I may not have been a member of the hospital staff, but after living there for 14 months, you would be amazed what kind of information Peter and I learned. Living in a hospital is a lot like going into a foreign land. You have to learn the timing of things, the hierarchy, who is in control, the checks and balances, and the overall language and values. When I met with Anita and Sharon today I felt like I understood the language they spoke, I understand what they are seeing and experiencing, and most of all it reminds me of my time with Mattie in the hospital. As Sharon said to me today, coming back to the hospital requires super human strength and to be grounded spiritually. Sharon was with us for the last several hours of Mattie's life, so she knows what we experienced, because she was in the nightmare with us. Being with people who were on the journey is very helpful to me, because I don't have to explain to them what I went through. They know it all too well and when they wonder how I have made it and keep coming back, this makes me feel good. Because I feel....... YES YOU GET ME! 

When I came home this afternoon, I worked on Foundation items. While at my desk staring out the window, I noticed all my sparrows who I feed were flying in a frenetic fashion. No wonder!!!! Look who came to visit!!! Our resident falcon and I got a close up of him today!

Tuesday, February 25, 2014

Tuesday, February 25, 2014 -- Mattie died 233 weeks ago today.

Tonight's photo was taken in February of 2009. I honestly do not remember who took this picture, but I remember this moment distinctly. Jenny (Mattie's art therapist) and I were pushing Mattie's wheelchair to the outpatient clinic. If you look closely you can see that Mattie's right leg was back in a cast. Because Mattie wasn't able to fully participate in physical therapy and regain the use of his operated leg, the leg became permanently bent at the knee. The cast was used to try to straighten out the leg. What you may not be able to tell here was that Mattie's wheelchair was going down a ramp. However, he wanted Jenny and I to literally let go of the chair, to allow the wheelchair to go flying down the ramp. Note that Mattie, unlike me, LOVED roller coasters. Notice the person in the background watching this scene and smiling. Any case, because Mattie was adamant, we did slightly let go of the chair but ran down the ramp after the chair making sure Mattie did not get hurt. After all, an injury of any kind could have been deadly for Mattie. Not only for his surgical sites but anything that could have delayed chemotherapy would have been life altering.  


Quote of the day: The quality of life is more important than life itself. ~ Alexis Carrel


As I reflect on those around me who are quite ill and incapacitated, tonight's quote comes to mind. I think it is easy to say that we value life over everything else, but before coming to that quick conclusion, I think we always need to evaluate a person's quality of life. My clinical experience involved working with caregivers who had to make difficult decisions about the care of their aging family members, but in addition to that experience, I watched the complexities of aging with my own grandmother. My grandmother suffered a massive stroke when I was in college which completely transformed her life, she was paralyzed, unable to swallow, and had a personality change. This personal insight gave me the necessary where with all to try to assist others. Because I wasn't just talking about theory and clinical experience, but knew first hand the ramifications of an illness on a family system. 

Talking about life and death decisions are very different when the person who is ill is an adult versus a child. Frankly, it is very hard for a parent to accept that there is NOTHING left to medically do other than to focus on the child's quality of life and the dying process. A child dying, or let me restate that..... YOUR child dying is NOT normal and therefore I think having a quality of life discussion is super difficult if not impossible. In most cases, most parents fight for life at all costs, even when others may deem the quality of life to be poor if kept alive. 

But what happens when the person in question is an adult or an older adult? We as a society may think that dying for someone older is just an acceptable part of life and therefore the debate of life or quality of life most definitely comes into the picture. I am just as guilty for having this internal debate. Yet at the end of the day, whether the person is a child or an older adult, really doesn't matter. This is clearly someone's mother, father, sister, brother, husband, wife, etc. The thought of losing a loved one at any age is awful and painful. Yet when we have a history with someone and have known aspects about their life, how they lived, what their priorities are, what they valued, and so forth, it becomes very disillusioning to see the person unable to move, unable to talk, and basically unable to function in any capacity. The body is living, but is this really living? Is this a good quality of life? Is this how a loved one wanted to live out his/her remaining days? I don't profess to know the answer to any of these questions. Such questions must be answered on a case by case basis, with the family, always respecting their values and beliefs. 

I think the one thing I have learned in the process of Mattie dying, is that the dying process really served two fold. Our ultimate goal was to make sure Mattie wasn't suffering. Unfortunately we did not do too well on that front. Mattie had an agonizing death and literally had to be put into a coma in order to die. But secondly, the dying process has a lot to do with who is left behind. The caregivers and family members are left with these memories and one of the worst feelings to have upon a loved one's death is regret, guilt, or remorse. So helping someone die is complicated because it isn't only about the person in question, but the people left behind must also be factored into the equation. As I have two friends who are gravely ill, my mind always swirls around these topics. My natural instinct is of course to help..... to try to shed light on the situation from my professional and personal standpoint... but no matter how well the intention, sometimes I have learned that the best thing to do is stand back.        

Monday, February 24, 2014

Monday, February 24, 2014

Tonight's picture was taken in February of 2009. Mattie was home between treatments and as you can see was camped out playing on the floor. This was Mattie's vanilla frosted dunkin donut phase. He had the donut in his left hand and was playing with his right. Mattie was the ultimate multitasker! During Mattie's cancer battle, my friend Susan coined the phrase..... one donut a day and everything will be okay! In our case, a donut was the only thing Mattie craved at that point and frankly whatever he would eat, we supported! Mattie loved playing with water and though he couldn't get in a bathtub anymore because of his physical disabilities and the fact that he had a broviac (a catheter which dangled from Mattie's chest, and was used to deliver all sorts of medicines and IVs), we always brought the water to him! 

Quote of the day: There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow. ~ OS Marden

If I did not know I was recovering from the flu, I would swear I have chronic fatigue syndrome. The greatest gift I got when visiting my doctor's office a few weeks ago was that I was given vital information about the flu. I had no idea it can take some people weeks or even months to recover from such a viral take over. The last time I had the flu, I must have been a child. In my mind, it takes 10 days to recover from the flu! I am very wrong about this and luckily my doctor's office clued me in. Perhaps it is the strains of viruses we have now, I have no idea, but getting the flu, can be life altering. I am seeing it first hand. 

We live in a fast paced society where we want instantaneous fixes. We want to see the doctor and recover by tomorrow. However, there are some recoverable illnesses which don't have one day fixes, and the flu is just such a culprit. Yesterday was a particularly difficult day in which I did not even have the energy to put clothes on. So I stayed in pajamas all day. I am not happy about my physical condition, but I understand where it is coming from. I can't imagine if I was feeling chronically fatigued and had no explanation for this. Yet according to The National health organizations, more than one million Americans and approximately a quarter of a million people in the UK have Chronic Fatigue Syndrome.

Chronic fatigue syndrome (CFS) is a debilitating and complex disorder characterized by intense fatigue that is not improved by bed rest and that may be worsened by physical activity or mental exertion. People with CFS often function at a substantially lower level of activity than they were capable of before they became ill. The cause or causes of CFS have not been identified, and no specific diagnostic tests are available.

As the name chronic fatigue syndrome suggests, fatigue is one part of this illness. With CFS, however, the fatigue is accompanied by other symptoms. In addition, the fatigue is not the kind you might feel after a particularly busy day or week, after a sleepless night, or after a single stressful event. It's a severe, incapacitating fatigue that isn't improved by bed rest and that is often worsened by physical activity or mental exertion. It's an all-encompassing fatigue that can dramatically reduce a person's activity level and stamina.

People with CFS function at a significantly lower level of activity than they were capable of before they became ill. The illness results in a substantial reduction in work-related, personal, social, and educational activities. The fatigue of CFS is accompanied by characteristic illness symptoms lasting at least 6 months. These symptoms include:

• increased malaise (extreme exhaustion and sickness) following physical activity or mental exertion
• problems with sleep
• difficulties with memory and concentration
• persistent muscle pain
• joint pain (without redness or swelling)
• headache
• tender lymph nodes in the neck or armpit
• sore throat

The symptoms listed above are the symptoms used to diagnose CFS. However, many CFS patients and patients in general may experience other symptoms, including:

• brain fog (feeling like you're in a mental fog)
• difficulty maintaining an upright position, dizziness, balance problems or fainting
• allergies or sensitivities to foods, odors, chemicals, medications, or noise
• irritable bowel
• chills and night sweats
• visual disturbances (sensitivity to light, blurring, eye pain)
• depression or mood problems (irritability, mood swings, anxiety, panic attacks)

I have known several people over the course of my life diagnosed with Chronic Fatigue Syndrome and the scary part about all of this is friends and family usually feel like the symptoms are all in their heads. That either they are lazy or have a mental health issue as the underlying cause. I would have to say if you have personally experienced such fatigue through an illness, then I have a feeling you would be cautious before telling anyone that such symptoms are all in one's head. The unsettling part about Chronic Fatigue Syndrome is many of the symptoms do have a mental health component to them and frankly on any given day dealing with grief, I too could feel overwhelmed from it and have several of the symptoms above. So it is a hard disease to pin point, understand, and diagnose. Yet I have great empathy for individuals living with chronic fatigue and chronic pain. It is life altering, very depressing, and at times it is hard to have hope. The fear is life will always look and feel this bleak. I am not sure why we are forced to endure some experiences or illnesses on this earth, but at the very least, I believe it is crucial to learn from them and to try to help, educate, and support others from the insights we have gained. 

I am mentioning Chronic Fatigue Syndrome tonight because it is the reality for many people, a misunderstood (by the public) reality, and if you happen to meet someone who suffers from the illness, think twice before summarily dismissing them and thinking the issues are in their head. My own bout with fatigue from the flu has opened my eyes with regard to those who suffer from it chronically. 

Sunday, February 23, 2014

Sunday, February 23, 2014

Tonight's picture was taken in November of 2007. This is another favorite photo of Mattie. Peter and I took him to Roosevelt Island that weekend and on our journey Mattie found and brought home this crinkly hedge apple. Of course we had to explore this fruit when it got home, so we cut it open and smelled it and also looked it up on the computer because at the time we had no idea what Mattie found. Nonetheless, we were all intrigued to find out that the fruit had a beautiful citrus fragrance when it was opened. Certainly if I went to Roosevelt Island, I may have observed the fruit, but as an adult, I wouldn't have been so intrigued to pick it up, take it home, and dissect it. That was the beauty of life with Mattie! 


Quote of the day: It has been said that time heals all wounds. I do not agree. The wounds remain. In time, the mind protecting its sanity covers them with scar tissue and the pain lessens. But it is never gone. ~ Rose Kennedy

A friend of mine sent me Rose Kennedy's quote a few days ago. I have posted it on the blog before but each time I see it, it resonates with me. The reason the quote resonates with me is because it was spoken by a woman who lost several of her own children. 

I would have to say that time is a mixed blessing. She was correct in that with time, the mind plays tricks on you. Or as she puts it, protects your sanity. I clearly know Mattie died and isn't a part of my life, but the feeling isn't as raw as it used to be. That alone is hard to admit and come to terms with! It isn't as raw because in some cases time enables you to develop walls, barriers, and forms of protection so that you don't live facing the actual reality every minute of the day. In other words protecting YOUR SANITY! Without these mechanisms of protection, I do surmise a parent could literally go crazy. 

Yet I would say when I am sick, these defenses become less secure. I have spent the entire weekend at home. I haven't had much energy to move about or even get dressed. This is not my usual mode of operating, so I would imagine when I get to this state, it is scary for Peter. While I was home today, Peter was rehanging two of the large photos of Mattie that hang in our living room. One of the photos in question, is the one I posted to tonight's blog. When I say large, I mean large. It has to be four feet wide and they are framed beautifully. In fact, several large photos were made for us and put on display during Mattie's celebration of life event. After the event, we professionally framed two of these wonderful photos. While I watched Peter rehanging the photos, I couldn't help but watch him and also look at the content of the photos. Seeing Mattie's eyes and just observing him in action in the photo was actually overwhelming. It saddened me and sticking with Kennedy's analogy, it was as if someone accidentally pulled off the scar tissue of a wound. 

The uneasy part about grieving is you just never know what will cause the "scar tissue" to be pulled off. The incident or event may change in any given month or year. It is the unpredictable nature of grieving that makes it so hard to cope with at times. All I know is when I am not feeling well, I dwell on Mattie's cancer battle and his death in a more raw way, and of course, who could forget Nurse Patches (our calico cat who died almost a year ago!). In the past, if I wasn't feeling well, my trusty nurse would always be by my side. Which was interesting, since she really responded and preferred Peter. I was considered the help! Yet when I was sick, she stayed very close to me and made sure in her own vocal way that someone was attending to me!