Saturday, December 30, 2023

Saturday, December 30, 2023

Tonight's picture was taken in December of 2008. That day we brought Mattie back to the hospital because he had a raging fever and was neutropenic from chemotherapy. While waiting in the clinic to get admitted to the in-patient units, he received a visit from Santa and Mrs. Claus. Literally before Santa came into the room, Mattie's head was done on the pillow in his lap. Mattie picked his head up long enough for a photo, received a boat load of gifts, and then collapsed back into the pillow. Putting this picture into context, makes me pause and say.... Mattie was extraordinary. Because if I were him, I would have cared less who came into the room. My head would have remained on the pillow. 

Quote of the day: Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. I miss you like hell. ~ Edna St. Vincent Millay

I moved my parents from Los Angeles to Virginia in December of 2021. I have been caring for them for two years straight now... not one day off. Caregiving is challenging enough, but caregiving for people with dementia adds a whole level of complexity to the role. With my parents, there is also a lot of anxiety, stress, and repetition. In fact, I will hear the same stories, reflections, and questions over and over again. Not only from day to day, but depending on the context, I could hear in multiple times in one hour. Honestly that I haven't cracked up yet is remarkable. It speaks to a human being's capacity for strength, compassion, persistence, and gratitude. Gratitude because all my life, my parents have looked out for my best interest. So there is no way in their time of need, I wouldn't do the same. Yet all choices have consequences. 

Today, Peter and I had the opportunity to chat and connect outside of the house. This is very needed for me because when I am home, I am pulled every which way but Sunday, and it is hard to be myself, to focus on conversation, and truly connect with someone in a meaningful way. We have a shopping mall about ten minutes from our home and finding a quiet place to talk within a mall can be a feat, but we found it.

Peter and I have been together since we were 19 years old. That is a long time. Through the years we have had many highs and many lows. The lowest which was and will always be Mattie's death. But through all these ups and downs, we have each other. We have always understood each other, respected each other, and could prop one another up in down moments. Somehow being in the mall away from home, enabled me to see that 19 year old that I fell in love with all those years ago. Certainly love changes and grows over the decades, but it is who I am, my love is always unwavering. It is fascinating how the human brain works, as I stared into Peter's blue eyes, memories of our life together flooded in and over me. As I sat in the mall, what I noticed about myself is that Christmas did not seem all that daunting, that life seemed more manageable, that with love anything is possible. Needless to say that was a intense visit to the mall. 

Meanwhile, I am slowly getting ready for family friends who are visiting with us on Monday. I set the table tonight and will continue food prep tomorrow afternoon. 

Friday, December 29, 2023

Friday, December 29, 2023

Tonight's picture was taken in December of 2008. This was Mattie's last Christmas with us. His entire preschool class added paper leaves to this wreath. There were messages of support written on them. It was a work of art, led by Mattie's art teacher. Mattie loved the wreath and even after he died, this wreath hung on the back of our townhouse door for years. 

Quote of the day: She wondered that hope was so much harder than despair. ~ Patricia Briggs

This afternoon, my mom and I were invited out to lunch with my friend, Denise. Denise and I have known each other from our graduate school days. I am very grateful to have her support and insights. Ironically I go to a therapist once a week, but Denise's insights are far more valuable. There is something to be said for someone who knows my history and understands what I value as a person. Any case, lunch gave me an invaluable outlet. 

I decided to invite some family friends over on Monday to acknowledge the New Year. I started prepping foods today, such a ratatouille. To me this tastes better the longer it sits in the refrigerator. 

I also made a twice baked mashed potato. I got this recipe from a Southern Living magazine years ago, and it is still a favorite of mine. Think about a twice baked potato (cream cheese, sour cream, and chives), just in a mashed potato form. It is a winner!

Thursday, December 28, 2023

Thursday, December 28, 2023

Tonight's picture was taken in December of 2007. Mattie was five years old. This was the last Christmas we had with him before cancer came into our lives. At that moment in time, Mattie was so happy! Look at that smile. Didn't he look like the picture of health?!

Quote of the day: The pleasure of remembering had been taken from me, because there was no longer anyone to remember with. It felt like losing your co-rememberer meant losing the memory itself, as if the things we'd done were less real and important than they had been hours before. ~  John Green

Thank goodness for antibiotics. Even with one dosage last night, it made a huge difference. I wasn't drowning in post nasal fluid. Of course I am finding that the antibiotics produce nausea. I learned this while driving in the car today to go grocery shopping. I literally thought I was going to be ill. I opened up all the car windows and tried to calm down. Fortunately the feeling passed, but I have more energy than yesterday and I am hoping to only take the antibiotics for five days rather than ten. 

While I was grocery shopping, my dad's physical therapist came over for a session. I expressed to her my concerns about my dad. His decline over the last week is huge. He moves slower, is having trouble standing from a seated position, and climbing stairs are labored. In fact, I would say any movement produces shortness of breath. I was so concerned about his huffing and puffing last night that I ran downstairs to get the blood pressure cuff and pulse oximeter. Needless to say his blood pressure and oxygen levels were all normal. As they were today during exercise. 

It was constant chores for me today. After putting all the groceries away, I had to pack up Sunny and take him to his oncology appointment. He was having blood work done to see if the new chemo was impacting his blood chemistry. Sunny is over 60 pounds and his back end needed to be lifted into the car, because he can't manage it alone anymore. So what I am saying is it is a labor intensive journey to the vet. Thankfully Sunny's blood work is stable and he can remain on the new chemo drug. The main blessing for today! I take all blessings when they come, as Sunny is a crucial part of my life and a loving and loyal companion. 

Wednesday, December 27, 2023

Wednesday, December 27, 2023

Tonight's picture was taken in December of 2006. Mattie was four years old and by that time, taking photos for our Christmas card was much easier. Mattie loved the Christmas train that we got for him, and it became an annual tradition. No tree was complete without it! After Mattie died, we did not decorate. I just did not have the heart for it. When we moved into our house in 2021, because my parents are with us, I decided to decorate again. That may not sound like a big deal, but it was huge! Decorating meant resurrecting Christmas ornaments and lights, having a Christmas tree and of course re-assembling Mattie's Christmas train. It was lovely to see our tree in 2021 and 2022, and appreciate Mattie's hand made ornaments and other things we collected over the years. Though I decorated this year, I did not feel emotionally up to having a tree. So in some ways it feels like I have regressed back to my state of intense grief. 

Quote of the day: If all else perished, and he remained, I should still continue to be; and if all else remained, and he were annihilated, the universe would turn to a mighty stranger. ~ Emily Jane Brontë

In my office, I have built in book shelves. Yes I do have some books on these shelves, but for the most part I decided soon after we moved in, that I would devote these shelves to all things Mattie. Over Christmas, my friend in childhood cancer, Ilona, gave me two gifts. One was this butterfly demi tasse cup and saucer. It is whimsical and charming. Naturally all butterflies connect me to Mattie. So I felt this cup belongs on Mattie's shelves. 

Ilona is also an artist. She created this beautiful 'Lollipop Tree' (framed) for me. The significance of this tree is it represents Mattie's memorial tree at his school, dawned with all the ornaments and keepsakes I add on holidays and milestone moments. The Lollipop Tree sits right next to Mattie's Lego taxi that he designed from scratch with two Lego masters. 

Meanwhile, this is what Sunny is doing to our pillows. This is the third one he has destroyed. Sunny used to do this when we lived in the city. Typically he would act out when he felt he wasn't getting enough attention. But Sunny never did this at the house! This behavioral component is a new addition to my daily routine. No matter how much attention I give him, the fact that we go on walks, that I hand cook his food, I still get this! So now I am concerned he is acting out because he isn't feeling well. He goes to see the oncologist tomorrow for blood work, so I will be updating the staff on what's going on. 

For about a week and a half, I have been suffering with sinus pressure, pain, and a post nasal drip. Over the last two days it has gotten worse. I feel like I am drowning in fluid. I contacted my doctor's office and asked for antibiotics. You would have thought that I was asking for narcotics! They wouldn't give me antibiotics without an appointment. I literally said NO, that I wouldn't come in. So they went to tell the doctor I refused to come in. The doctor's nurse then called me and gave me some lecture on rules and regulations. Again, I really don't care! I am balancing a circus show and I told the nurse I needed compassion NOT a lecture. So instead, the nurse booked me for a virtual visit today at 4:15pm. I complied! Of course after a 15 minute appointment with the nurse practitioner I was prescribed antibiotics. The system sucks, as I could have saved them the 15 minute appointment, if they had listened to me in the first place! It's not like a sinus infection is new for me. I get one or two a year, at almost the same time each year! All I know is this sinus infection is exhausting me and I could literally fall asleep standing up. 

Tuesday, December 26, 2023

Tuesday, December 26, 2023 -- Mattie died 743 weeks ago today.

Tonight's picture was taken in December of 2005. That day we took Mattie to Tower Oaks Lodge in Maryland. This was one of his favorite restaurants, because out front they had a little pond filled with fish and turtles. That day, I had Mattie pose by some of the bushes and this cute photo was featured on the front of our 2005 Christmas card. 

Quote of the day: When someone is in your heart, they’re never truly gone. They can come back to you, even at unlikely times. ~ Mitch Albom

This cute light up glass Christmas tree came from my mother-in-law. She kept this tree in the guest room and whenever we were there at Christmas time, we used the tree as a night light. Now this tree has been passed down to me. It symbolizes happier times, when Mattie was still alive, our parents were healthy and strong, and anything in life seemed possible. 

Both the roses and the vase were gifts to me at Christmas. Don't you just love these big and bold Mattie orange roses? I also love the vase with bright red cardinals on the glass. Both symbolic of Mattie!

This afternoon, I had a friend over for lunch. I haven't seen him for two years since my parents moved in. We had a good time reconnecting and I served homemade turkey soup, rolls, crackers, and left over stuffing and sweet potato souffle from Christmas. I am so glad I invited friends over yesterday and today, as it helped to brighten a very dark time in my life. 

Monday, December 25, 2023

Monday, December 25, 2023

Tonight's picture was taken in December of 2008. A colleague of mine designed this quilt by hand and sent it to Mattie for Christmas. He indeed was and will always be SUPER MATTIE. He was an extraordinary boy, who remains forever in my heart and guides how I live my life. Christmas 2008 was not the best of times, as it was during that time at home that I figured out that Mattie had a form of PTSD. I later learned after he died that he had medical traumatic stress. What you may not see was behind Mattie we had a hospital bed and IVs in our living room. It was a time in our lives that I do not know how we survived. What I do know is I forget nothing because being Mattie's mom was a privilege and an honor. 

Quote of the day: Grief is like living two lives. One, you pretend that everything is all right, and the other is where your heart silently screams in pain. ~ Unknown

I literally could have curled up in a corner today and not acknowledge Christmas. But with my parents here, there was no way I was going to make the day pass without it being somewhat special for them. I invited two good friends over and we got to chat, reconnect, and they provided me with an outlet and support. I am quite aware that I am not picnic to be around right now, as I am not in a good emotional place. 

Despite how I feel internally and the fact that I have lost 20 pounds, I was compelled to cook. Tonight's menu was

1) turkey (with an orange marmalade glaze) with gravy

2) fresh cranberry sauce

3) sweet potato souffle

4) stuffing with dried cherries and apples

5) ginger carrots

6) string bean with mint and lemon

There were five of us at dinner and then after dinner two of my neighbors, who have adopted me, joined us for dessert. 

My dinner plate. I have bought so many different turkeys over the years! But this year's gets an A+. It was an Empire Kosher turkey. I read about this company, as the turkeys eat a veggie diet, get no hormones or antibiotics. Given that it is kosher, the birds are cleaned in a special way. All I can say is after buying an Empire bird, I will never buy another variety. It was so tender, tasty, and easy to cook!

My coconut layer cake!

Friends gave me all sorts of cookies this week and I put together this cute tray! The one thing I forgot to do was take a photo of all of us together. It completely slipped my mind given my emotional state. But what I do know, is regardless of how I am feeling, I am blessed with amazing friends. 

Sunday, December 24, 2023

Sunday, December 24, 2023

Tonight's picture was taken in December of 2004. Mattie was two and half years old. By that point in time, Mattie got the whole notion of Christmas and sitting still to capture a photo for a family Christmas card was manageable. When I look at this photo, to me Mattie had the most angelic face! Oh how I wish he were alive, because I have no doubt that our bond and connection would have only grown and he would have been a fierce advocate of his mom!

Quote of the day: When someone is in your heart, they’re never truly gone. They can come back to you, even at unlikely times. ~ Mitch Albom

This afternoon, I took my parents out for Christmas Eve lunch. My mom tried to take a photo of me with Cheryl, one of our favorite servers. Cheryl knows all about the ups and downs in my life and is so kind. She mails me cards all the time and she made sure we all felt appreciated today! She got each of us gifts, and of course we brought gifts for her as well. 

When we sat down, Cheryl wanted us to know that Dawn, who is our favorite server in Rockville, MD, was paying for our entire meal. Dawn also knows about the issues in my life and truly it is remarkable the kindness and out pouring of love I am receiving, from people who have known me decades and from those who have known me only a few years. They are all here to remind me.... I am special, my life matters to them, I am a loving, caring, compassionate and incredibly strong woman. 

The three of us today!

When I got home, I continued food prep for tomorrow. I truly could have completely forgotten that tomorrow is Christmas. But instead, I invited some friends over and I look forward to the company and the diversion from the intense pain I am managing daily. 

I love my card corner in the kitchen!

I have invited two friends for Christmas dinner and then later in the afternoon, two of our neighbors are joining us for dessert. 

I absolute love the snow globe centerpiece I bought last year at the Hallmark store. It looks like an old fashioned lantern and the animated snow inside is hypnotic. 

Today I assembled my coconut layer cake! To me coconut reminds me of snow, and a White Christmas. I am in such a state this Christmas, that I haven't watched one Christmas movie. I literally can't!

When I was driving home from the restaurant today the radio commentator was talking about the origins of the song, the 12 Days of Christmas. I have to admit that this has never been a favorite of mine. However, when I heard the meaning behind these silly lyrics, my appreciation grew. In case you aren't aware, I have copied some interesting information below for you to read. 

The religious wars in sixteenth century England made it dangerous to be a Catholic. Many people practiced their faith in secret. As the legend goes, Catholic families courageously developed unique ways to secretly pass the faith onto their children, like “The 12 Days of Christmas.” The well-known song was used to teach children about the Catholic Church. Although the lyrics may sound like nonsense, the song actually contains hidden references:

The First Day of Christmas: A Partridge in a Pear Tree

A partridge in a pear tree symbolizes Jesus Christ, with the partridge representing Christ's willingness to sacrifice himself and the pear tree symbolizing the cross.

The Second Day of Christmas: Two Turtle Doves

Two turtle doves represents the Old and New Testaments, highlighting the harmony and connection between the two.

The Third Day of Christmas: Three French Hens

Three French hens signifies the three theological virtues: faith, hope, and love (or charity).

The Fourth Day of Christmas: Four Calling Birds

Four calling birds symbolizes the four Gospels: Matthew, Mark, Luke, and John, which spread the good news of Christ's life and teachings.

The Fifth Day of Christmas: Five Golden Rings

Five golden rings represents the first five books of the Old Testament, known as the Pentateuch or the Torah, emphasizing God's covenant with His people.

The Sixth Day of Christmas: Six Geese A-Laying

Six geese a-laying symbolizes the six days of creation, emphasizing God's power as the creator of the world.

The Seventh Day of Christmas: Seven Swans A-Swimming

Seven swans a-swimming represents the seven gifts of the Holy Spirit: wisdom, understanding, counsel, fortitude, knowledge, piety, and fear of the Lord.

The Eighth Day of Christmas: Eight Maids A-Milking

Eight maids a-milking symbolizes the eight Beatitudes preached by Jesus in the Sermon on the Mount, highlighting the virtues and blessings of a righteous life.

The Eight Beatitudes:

Blessed are the poor in spirit, for theirs is the kingdom of heaven.

Blessed are those who mourn, for they shall be comforted.

Blessed are the meek, for they shall inherit the earth.

Blessed are those who hunger and thirst for righteousness, for they shall be satisfied.

Blessed are the merciful, for they shall obtain mercy.

Blessed are the pure in heart, for they shall see God.

Blessed are the peacemakers, for they shall be called children of God.

Blessed are those who are persecuted for the sake of righteousness, for theirs is the kingdom of heaven.

The Ninth Day of Christmas: Nine Ladies Dancing

Nine ladies dancing represents the nine fruits of the Holy Spirit: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control.

The Tenth Day of Christmas: Ten Lords A-Leaping

Ten lords a-leaping signifies the Ten Commandments, which provide guidance for a moral and righteous life.

The Ten Commandments:

1. I am the Lord your God: You shall not have strange gods before me.
2. You shall not take the name of the Lord God in vain.
3. Remember to keep holy the Lord’s day.
4. Honor your father and your mother.
5. You shall not kill.
6. You shall not commit adultery.
7. You shall not steal.
8. You shall not bear false witness against your neighbor.
9. You shall not covet your neighbor’s wife.
10. You shall not covet your neighbor’s goods.

The Eleventh Day of Christmas: Eleven Pipers Piping

The Eleven Faithful Apostles: Peter, Andrew, James the Elder, John, Philip, Bartholomew, Matthew, Thomas, James the Younger, Simon, and Jude.

The Twelfth Day of Christmas: Twelve Drummers Drumming

Twelve drummers drumming represents the twelve points of doctrine in the Apostles' Creed, which summarizes the core beliefs of Christianity.

The Apostles’ Creed:

1. I believe in God, the Father almighty, creator of heaven and earth.
2. I believe in Jesus Christ, his only Son, our Lord.
3. He was conceived by the power of the Holy Spirit and born of the virgin Mary.
4. He suffered under Pontius Pilate, was crucified, died, and was buried. He descended into hell.
5. On the third day he rose again. He ascended into heaven, and is seated at the right hand of the Father.
6. He will come again to judge the living and the dead.
7. I believe in the Holy Spirit,
8. the holy catholic Church,
9. the communion of saints,
10. the forgiveness of sins,
11. the resurrection of the body,
12. and life everlasting. Amen.