Saturday, June 29, 2024

Saturday, June 29, 2024

Tonight's picture was taken in June of 2009. Mattie was in the hospital recovering from lung surgery. Literally Mattie had an incision in his chest which was bandaged up, and he needed oxygen to help his lungs recover. Do you see the little R2D2 Star Wars character in front of Mattie? Mattie's lung surgeon gave this to him post surgery. I want you to know that to this day, this surgeon still contributes yearly to Mattie Miracle! This is the kind of quality man he is, not only a competent surgeon, but devoted to his patients and families. The world needs more people like Dr. Chahine. 

Quote of the day: I gave you my heart, I just didn’t expect to get it back in pieces. ~ Unknown

My dad had physical therapy this morning. Both of his therapists see the decline in my dad's energy level and stamina that I am reporting. It takes a lot to get him moving, but as I remind my dad, this is important for his health and independence. My dad has two therapists. One who primarily works with him, and the other who worked with my mom for almost a year in the outpatient clinic of the hospital. I happen to love this particular therapist. She reminds me of me when I was in my late twenties. In any case, unlike the primary therapist, this therapist understands the multitude of things that I juggle in any given day and really tries to help and be supportive. This goes a long way for me, because there is NO ONE in my daily life that is physically there for me. Therefore, when I experience this attention, I take notice. 

I have to admit that I was extremely tired today. So much so that after we got back from a visit to the frozen yogurt store, I headed to the couch. I never sit still by day, but today I had no choice. I could feel that I was shutting down physically and emotionally. I am living under constant stress and heartache, that some days I do not know how I function. I literally rested on the couch for an hour.

When I got up, I made dinner and started right back up again. But I it is a very difficult existence, not just the non-stop caregiving, but to be abandoned by the one person that I thought I could trust the most in this world, and had trusted since I was 19 years old. Just devastated. 

I received this beautiful and heartfelt card from my cousin Maureen. Unfortunately she and I live in different states, which are not close by. But I admire my cousin, as she has devoted her life to caregiving for many people. She does it with grace, dignity, and kindness. Therefore, receiving her support at this very low point in my life, means the world to me. 

The front of her cards says....

The list of things I don't know

• Why bad things happen to good people
• All you're feeling right now
• Exactly the right words to say

Tonight's dinner:

Mushroom and carrot chicken meatloaf

Cole slaw with apple cider vinegar

Roasted sweet potatoes with cinnamon and nutmeg

The three things I am grateful for:

1. My cousin Maureen.
2. Chocolate covered pretzels!
3. The use of my arms and legs. As I was driving home today with my parents, we noticed a man on the side walk. He was in a wheel chair and missing a leg. He was moving himself down the sidewalk with one leg, in the terrible heat. My heart went out for him and literally I wondered to myself..... where is this man's family? As I absorbed this man's situation, I reflected on being grateful for being able to use both of my arms and legs. 

Friday, June 28, 2024

Friday, June 28, 2024

Tonight's picture was taken in June of 2009. Mattie received this gift from a friend. He worked on it all day. Mattie had to mold colorful clay into the plastic template. I WAS NOT a Sponge Bob fan, which was what intrigued Mattie to like this character even more. It is ironic, when your child has cancer, things that you may have steered him away from before, didn't seem to matter as much. Cancer puts everything into perspective! That evening, I wanted to snap a photo of Mattie with his Sponge Bob creation. As you can see, Mattie was in NO mood to pose, so he instead, he did this! Even sick, Mattie had a good sense of humor, and I will never forget my seven years with him. 

Quote of the day: I understand it, but I don't like it. I wish we could all be together like before: best friends, not heartbroken strangers. ~ Amy Plum

This morning when my alarm went off, I was so exhausted, I did not want to get up. What compels me to get up, and have the stamina to face another day is beyond me. I rather throw the covers over my head and ignore my reality altogether. I am tired of meeting everyone's needs. Listening to my mom's non-stop conversation, juggling bills, cooking, cleaning, caregiving, and of course heartache.

I drove my dad to his memory care center, and on my way home, I saw this lovely sight in the neighborhood. It is one of the many reasons why I fell in love with this community. The natural beauty!

When I returned home this morning, this is what greeted me. I hardly could get down the road to my driveway. This is the chaos I have been enduring each and every day, for a year now. It is the construction project that just won't end! Frankly at this rate, it would have been faster to throw down my neighbor's house and build a brand new home on the site. This is just another frustration on my already full plate! 

Three things I am grateful for:

1. Having friends who care about me, who want to listen and help. 
2. The morning deer sighting.
3. Being healthy. This morning while dropping my dad off, I passed the kidney dialysis center (right next to my dad's center). I could see a patient being transported who clearly was unable to walk and was very sick. I never take a health day for granted since Mattie's diagnosis. 

Thursday, June 27, 2024

Thursday, June 27, 2024

Tonight's picture was taken in June of 2009. Mattie was in the outpatient physical therapy clinic. This mess was taking place within a session. Anna (PT) and Linda (child life) were working with Mattie to get him to use and exercise his legs. Naturally if you asked Mattie to do traditional exercises, the answer would be no! But if you threw in shaving cream and the opportunity to make a mess, he was all in! I always say that Mattie encouraged all of us to think outside the box and to rise to the occasion. 

Quote of the day: What a painful thing to taste forever in the eyes of someone who doesn’t see the same. ~ Perry Poetry

This morning, I got up at 5:15am, in order to get everything done before the Verizon tech visit. Our tech came at 9:15am and what an amazing fellow. Abdullah was fantastic. His family is originally from the Bronx, NY, so we immediately connected, because that is where my parents were born. Abdullah identified my cable issues and fortunately I did the right thing by scheduling this repair. As this issue was NOT going to be corrected on its own, and couldn't be addressed remotely either. Abdullah and I walked through each cable box, he helped to reprogram my TVs and even gave me his business card. So I now can contact him directly as well as his supervisor. We need to clone Abdullah! When I experience stable, kind, and capable people, it transforms my day. It also restores my negative view point on humanity. 

Since this appointment went so well, I had time this morning to go grocery shopping while my dad's physical therapist was giving him a session at home. The grocery store was featuring 80s music today! It literally brought me back to a better time in my life. Some songs I remember from high school and others from college. Fortunately I did not know what a disaster my life was going to be back then. Instead, I grew up in a loving and very happy home, and one would have thought that this happiness would have traveled with me throughout adulthood. So what started out as a positive visit to the grocery store, turned out to be a bittersweet journey down memory lane. As I shop, I naturally pass things I would have gotten for Peter and for my Sunny. Both gone from my life. Just way too much trauma and loss. 

When I got home, I wanted to put away groceries! However, my dad's physical therapist started in on me. She had suggestions about adding another railing on our staircase! Truly YOU HAVE GOT TO BE KIDDING! I am on overload on every front, paying bills and keeping this house afloat, do you honestly think I want to hear about a stair railing?! The answer in NO! Instead, I told her I will have him go up the stairs at night sideways. A technique he learned when he was in the hospital. We go down the stairs sideways together, so now I will just have him reverse the process. My dad doesn't negotiate stairs alone anyway. I have a gait belt around him and guide him through the process. 

Later this afternoon, I took my parents out! However, as you can see I couldn't get out of my driveway! My neighbor has a never ending construction project going on at her house. This is in addition to what has happened to my marriage, and also living in daily chaos for over a year! Trucks, debris, and constant noise. 

This evening while working on the computer, I had a crow visit. I am not sure the significance of this, but I have a feeling this is some sort of omen.

Mattie Miracle just launched a fifth Snack & Item Cart and I was asked tonight to generate signs to go on the Cart. This was a detail that I always turned to Peter to handle. We would talk about the concept, but he would execute on it. Of course, now that I am the one woman machine, I had to remember what company we used in the past and then I had to design and create the products. Since Peter left in September, I have been on a 9 month journey through hell, with a steep learning curve on every front.

Three things I am grateful for:

1. 80's music.
2. Abdullah and kind, customer focused professionals. 
3. Continuing education on sale! My mental health license is up for renewal this December, and with that, I need more CEUs. I received a flyer in the mail today and was able to purchase several trainings that are right up my alley. 

Wednesday, June 26, 2024

Wednesday, June 26, 2024

Tonight's picture was taken in June of 2008. Hard to believe this was a month before Mattie was diagnosed with cancer. That weekend, we took Mattie for a walk on Roosevelt Island. It was an amazing gem, practically in our backyard! We walked this Island in all seasons and as you can see, Mattie never walked empty handed. In his hands were typically a toy car or some other vehicle. In so many ways, my life ended the day Mattie died. I am trapped at FOREVER SEVEN. I wish Mattie were alive now. I sure could use his love, support, and I know he would have been a great ally. 

Quote of the day: The saddest thing is to be a minute to someone when you’ve made them your eternity. ~ Sanober Kahn

I have to tell you, I really wonder about my own profession. Tonight I went to therapy (something I have NEVER had to do my entire life, even with Mattie's death) and sometimes I want to just say..... REALLY!? I feel that the therapist is so overwhelmed with what I am dealing with that she doesn't know how I manage. I am living the perfect storm between intense caregiving and being abandoned by my husband. She wants me to find joy, hope, happiness, and peace. I get it, but as I told her I haven't had these things since Mattie died. So the notion of finding them now, is hilarious. Even better, what I think is absurd is she thinks that adding anti-depressants to my life will make a difference. Mind you I am way too busy to be depressed. I find it amazing that someone can think that taking meds is going to make me feel better, as if this nightmare I am living, is going to poof away and with it will come a whole new life. In fact this suggestion makes me feel like.... you don't get me! Unfortunately grief, loss, and trauma don't have easy fixes, as I reminded her, I know what I am talking about as I have already suffered the worst trauma a woman can face, the death of her child.  

Any case, what should be an outlet, a place of support, turns out to provide me more upset, more angst, and frankly it isn't worth the money. When I arrived home, I immediately hit the chocolate and went out to the garden. 

I was just talking about these rubrum lilies last night and low and behold, the first bloom presented itself to me today. 

A beauty! Meanwhile, all the cable boxes in our house are not working well. That is a major catastrophe, since my parents love watching TV. Thank goodness I have a scheduled repair appointment tomorrow morning! In order to make this happen I have to wake up at 5:15am, because the repair person is coming at 9am. If I don't get up at this awful hour, I won't be able to shower, get dressed, make breakfast, get chores done, wake my dad up, shower him, dress him, make beds, etc! I am on a constant treadmill in my home, with each day being just as intense as the day before. 

Three things I am grateful for:

1. Chocolate
2. The kindness and generosity of friends!
3. The power of music. 

Tuesday, June 25, 2024

Tuesday, June 25, 2024 --Mattie died 769 weeks ago today. 

Tonight's picture was taken in June of 2008. That weekend we went to the Cardboard Boat Regatta with one of Mattie's best buddies in kindergarten, Campbell. This event at Lake Accotink Park is something I will never forget. Teams build boats out of cardboard and then compete to float, navigate, and win races. The creativity of design and style were amazing, and the whole thing fascinated Mattie. I always thought this would be an activity he would have done with Peter as he got older. Mattie LOVED boats and if you asked him, he would have told you that he was saving money in his piggy bank to buy a boat (a real one!). 

Quote of the day: I will never love another. Not like I loved you. I just don’t have the love for it again. ~ Atticus

Last night, after putting my parents to bed, I went to my bedroom. Despite how tired I am, I typically turn on the TV and watch comedy shows. It is my way of unwinding, forgetting my reality, and trying to distract my brain enough to fall asleep. When I went to turn on the TV, the cable was acting up. The picture was freezing every 20 seconds making it impossible to watch TV. That may not sound like a problem, but for me it is. It is part of my bedtime routine and without it, I have a hard time relaxing. So for two hours I tried everything, from rebooting the system, running a diagnostic, to even going to the basement to reboot the router. NOTHING worked. Instead of calming down, I worked myself up into a tizzy. I was highly anxious as technological problems are not my strength. Needless to say, I did not get to sleep until after 2am. Of course, I am up at 6:30am. 

After I dropped my dad off at his memory care center, I ran home to call Verizon. I was on the phone for 90 minutes with a tech. He tried everything on his end, but the problem remains. So now I have a service ticket open for Thursday. If managing that call wasn't bad enough, I then called Amgen. 

Recap, I am trying to access my $1,500 co-pay from Amgen to help pay for my Prolia injection that I received in March. The infusion center wants to get paid and I am desperately trying to work out this problem. My co-pay went to a specialty pharmacy, which I used with prior shots before switching to the infusion center. In any case, the pharmacy obtained my co-pay and they are sitting on it. Yet I did not get my prescription filled from them. The irony is the specialty pharmacy says they don't have my co-pay and they blame Amgen. Amgen tells me that the issue is with the specialty pharmacy. I have been fighting this battle for a month and a half. I have a long file of call logs at Amgen and am very frustrated.

Any case, I spoke to a representative at Amgen today and basically he told me that NOTHING has been done since my last call on June 10. I was LIVID. I told him I needed to speak to someone who could give me answers TODAY and I was not getting off the phone until he made this happen. In the past, Amgen would placate me and would tell me they would call me back with updates. Updates that never happened. So today, I wasn't falling for the.... we will call you back with an update. After my persistence, I was finally connected with a manager based in Pittsburgh. John is a God sent. He read through my file, asked questions and quickly got up to speed. He actually called me back twice today with updates and now it is my hope he can track down my money. He has asked me to wait 72 hours and would call me. I now have John's full name and know how to get a hold of him. The question is, why aren't all people like John?

Later today, I went out to the garden to stake up these huge rubrum lilies. Peter knew how much I love these particular lilies, so he planted them for me last year. But like with any bulb, they seem to multiple from year to year. So I will have many lilies this year. They are a reminder to me of the love Peter once had for me. 

These giant lilies are OVER my head and their stalks are heavy!

One of my rose gardens!

Do you see the oak trees in the brown flower pots!? Well here is the story on them. They came from acorns we picked up around our townhouse in Washington, DC. We planted them in tribute to Mattie. Mattie loved our oak trees, for two reasons. One, he loved to collect acorns and two, we used their leaves each spring to feed his tent moth caterpillars. So this is a part of Washington, DC that we took with us and of course a tribute in memory of our Mattie. 

Three things I am grateful for:

1. Advil and Icy Hot patches! As I am still in great physical pain. That doesn't stop me from moving, but each move is exhausting. 
2. John! Thank goodness for kind, competent, and pro-active people who are committed to helping their patients. 
3. Columbo! I found a channel today that had several episodes back to back. I am a big Columbo fan and my dad enjoyed the change of pace on TV. 

Monday, June 24, 2024

Monday, June 24, 2024

Tonight's picture was taken in June of 2009. This photo was taken a few days after Mattie's lung surgery. As you can see, Mattie was exhausted! His cancer buddy, Jocelyn, gave Mattie, 'Sunshine!' Sunshine was a stuffed animal -- albino boa constrictor. Jocelyn knew that Mattie loved all creepy crawlers. It is hard to image that both Mattie and Jocelyn died from osteosarcoma and they are no longer with us. 

Quote of the day: You weren’t just a star to me. You were my whole damn sky. ~ Unknown

I am in so much physical pain today, I do not know how I even got out of bed. In addition to back and hip pain, I also have a full fledged migraine. But in my house, things do not stop for me or my issues. After dropping my dad off at his memory care center, I drove my mom into the city for a nail appointment. 

The salon we go to, is like going home to me. It is located right next to where we used to live, and I started going to this salon when I was in my late twenties. They make the best cappuccinos. Typically I don't drink coffee, but there I do! This was made for me today. I celebrate all these little perks and I reflect on when my marriage was intact.

When I got home later today, I found several packages at my front door. Chocolate and IcyHot Patches (for my intense back pain)! It is like receiving a big hug from my cousin Cheryl. Cheryl and I are NOT related by blood and ironically we have NEVER met one another. Yet through my writings over these 15 years, Cheryl has gotten to know me and I am grateful for her support, love, and belief in me. 

Since December, one of our video cameras outside our home has not been working. I had asked Peter to help me call the company and get it fixed. Since that never happened, I scheduled a call with the company today. I was on the phone with David, a tech, for over an hour. I was running in the house, out of the house, on a ladder, and juggling a cell phone and an ipad! Needless to say, between David and I, we got the system working again. I know this may sound silly, but I felt like I accomplished something. Another task done that I wasn't sure I could figure out on my own. I may not be able to figure stuff out by myself, but I am good at asking for help, direction, and guidance. 

Three things I am grateful for:

1. Icy Hot patches and CHOCOLATE!
2. A beautiful cappuccino. 
3. David, the patient, kind, and capable tech who solved my problem.

Sunday, June 23, 2024

Sunday, June 23, 2024

Tonight's picture was taken in June of 2009. I typically do not post photos of Mattie in treatment anymore, but tonight, I decided to post this photo which was taken right after Mattie's sternotomy, to remove seven tumors in his lungs. Even if I am not posting photos like this each day, that doesn't mean that these images, these experiences, and the ramifications of all of this doesn't dwell within me. It does. I recall all these painful moments, life and death decisions, and the agony that Mattie endured. A mom never forgets. 

Quote of the day: One day you're going to remember me and how much I loved you … then you're going to hate yourself for letting me go. ~ Aubrey Drake Graham

Another glorious moon through my bedroom window! I am certain I am seeing this for a reason. It has been a hard week and to add to the emotional pain, I also have physical pain. My back aches tremendously. So much so that Advil isn't helping. I do find heat helpful, but that would mean that I have to sit still long enough. Once my parents are awake, my opportunity to care for myself is non-existent. 

It is so hot that I am checking on my garden at least twice a day now. In fact, after I write tonight's posting, I am heading outside to water my green babies. 

I planted these knock out roses about a month ago. They are thriving and glorious!

I did not realize that Peter planted Alliums. He knew I liked them a lot. I first got introduced to Alliums at a farmer's market in 2022. I learned that chefs use the flower of the allium in lieu of garlic. Literally the stalk and flower smell just like garlic. But I also love the flower from an aesthetic standpoint. Now I have the flowers, but I do not have Peter. Some days I truly am so disoriented and disillusioned about Peter leaving me. 

Welcome to the June beetle. These pests are eating my roses. I sprayed the roses today and will be working my best to remove them from my garden, because when you mess with my roses, there are consequences. 

How do you like my "Sunny" hibiscus? I admit, that I bought them a month ago because of the name. They are my tribute to my beautiful pal, Sunny. Oh how he is missed. 

When I bought these plants, they were much smaller. They are thriving in my pots and wow do they love water!

Three things I am grateful for:

1. Friends who write, check in, and think about me. I feel terrible that I can't be a friend to anyone now. Life is chaotic, devastating, and beyond overwhelming. I am grateful that my friends understand. 
2. Being able to return things easily through Amazon! I can't wait to get rid of the TENS unit and Water Pik tomorrow! Not good purchases. 
3. 
   I took my parents out to brunch today. Typically my mom wants to order the same thing I do. I don't mind for the most part, though I am cognizant that she won't eat many things, so it limits what I can order. Today she ordered her own thing, and I got to order what I wanted, BBQ ribs. This is not something I will make at home, since my dad no longer likes ribs. In any case, I can't tell you how many times Peter and I cooked ribs together in the summer months. Today's meal reminded me of happier times. Times when I was happily married and knew that Peter loved me.