Hi everyone, 

The first part of this journal entry will be the actual update of what has been going on in a nutshell. The second part will be about what I have learned and how I'm coping with the first Christmas season without my mom. 

Organizing my thoughts and having the time to express them here on the site have been few and far between. For almost 3 weeks Ben's Day Program closed down due to Covid, meaning that I had him every day, all day, from 8:30am- 6:30ish pm, with no breaks except for when I got to go home at night. It was definitely hard, and I had no ability to do much for paperwork because of the care and supervision he requires.  Despite getting behind on paperwork and being physically exhausted, I was so blessed the entire way through. Ben made a difficult situation tremendously easier by being so sweet, snuggly, and compliant for just about everything.  He finally got to go back to Day Program on Monday and he was SO excited to see everyone again. 

He is just now getting over a sinus infection which has made him extra tired. I have also discovered that a tooth has grown behind his front teeth, and it is turning black. He has a dentist appointment tomorrow morning. However, he doesn't like anyone messing with his mouth and he fights it. Most likely, they will do their best to see what problem(s) he is having with his mouth, then we will have to schedule him to go to St. Mary's Hospital to be sedated so they can get all the work done.  For those of you wondering, the dentist can't sedate him in office because of severe risks due to the medications Ben is on. Some the medications concentrate other medications, therefore giving him a normal adult dose of the anesthetic could be giving him enough to sedate 3 adults because of how his medications could concentrate it. Because of this, it has to be done in a hospital, with his Epileptologist on call.  To say the least, putting him under anesthesia can be done, but there are significant risks for him.  

Now that Ben has been in Day Program for the last week, I have actually had a chance to get semi caught up on paperwork, and have some time for me to just rest, think, and organize my thoughts. As hard as it was to have Ben in toe while also getting bombarded by the Christmas season and the grief that goes with that, I have recognized, learned, and absorbed some very important things about Christmas, which in turn has helped with my grieving process. Not to say that it has made it easy, because it certainly hasn't. This has been the hardest year of my life, and in the last few weeks I have never cried so much in my life.  Despite the pain, the sorrow, and challenges, there is still so much peace and joy in this home.  So get settled in, because I have a lot to say! 

Have you stopped to think about how many made-up  expectations we put on ourselves every Christmas? Lately, I've been humming a song by Francesca Battistelli and I think it really encapsulates the busyness of the Christmas season. Below I have the lyrics written for you to read, and attached at the bottom of this journal will be a link to the song if you want to listen to it. 

                                                                                               Christmas is-

Verse 1: "Christmas is music and family in town/ Christmas is Snoopy and Charlie Brown/ It's anticipating that snow is gonna fall/ And praying for some place to park at the mall/ It's mom going crazy cause the turkey got burned/ It's saying thanks for some gift you'll return/ Christmas is caroling kids at your door/ It's paper and ribbon all over the floor"

Verse 2: "Christmas is roof tops covered in lights/ It's away in a manger/ It's a wonderful life/ Christmas is caring for those who got nothing/ It's dropping your change in the bell ringer's bucket"

Verse 3: "Christmas is all of these fun things for sure/ But Christmas is really, oh so much more/ It's good news of hope for the whole world because/ Christmas is Jesus"

If you've never heard it, this song is upbeat and fun. It captures the fun and excitement of Christmas, but it also lists out just some of the things most of us do every Christmas- Playing Christmas music nonstop, traveling to or having family come over, watching lots of Christmas movies, wishing for snow, shopping to find 1 or more gifts for every important person in you life, waiting in long, crowded lines to buy your perfect gifts, wrapping those endless gifts in pretty paper and bows, keeping the gifts hidden and a secret,  cooking a traditional meal for everyone, putting up lights on your house and decorating inside,  doing charity of some form, picking out your festive holiday attire for each cookie exchange or white elephant party, rushing from one thing to another,  dressing up to go to Christmas Eve service, getting up early to open presents, and finally clean it all up and put everything away so that it is ready for next year. We do all this on top of working, keeping up on bills, budgeting, etc. 

I don't know about you, but just looking at/typing that list makes me feel tired, overwhelmed, and stressed. These things in and of themselves aren't bad. In fact they can be quite fun and memorable moments. I have lots of fun memories doing all these things and more! But this year I noticed something... If I were to ask you what your normal Christmas looks like, I bet most of you would have a list that looks similar to mine and the song I shared. What if I asked you "What is the meaning of Christmas?". Of course the Sunday School answer would be "Jesus!", or rather "the birth of Jesus", and that is correct.  Now, look back at my list or come up with your own list of all the things you do to celebrate Christmas.  

Do you see what I see? (Pun intended).  Although there a many fun aspects, we have created a holiday that puts extra burdens on us, extra stress, and just extras! Some of the extras are in the name of remembering Christ's birth, but many of them are just pagan traditions that, although fun, have nothing to do with the birth of Jesus. 

I don't believe that putting up a tree, or giving gifts, etc. are wrong. In fact, I have a tree up in my house and I have bought things for my loved ones, and enjoy going to look at the Christmas lights. If you enjoy the craziness and all the extras that this season brings, then go for it! My point is not to say we should do away with them. My point is this: Christmas is simply Jesus.  

For many people, Christmas is tiring, overwhelming, and stressful. Many people become depressed during the Christmas season for various reasons. Maybe they are hurting financially and they are feeling the burden of trying to afford all the extras of the season. Maybe the relationships in their family are broken, causing built up tension and uncomfortable family reunions. Maybe they are like me, and they lost someone they loved dearly and are struggling to cope with the emptiness of not having that person there to celebrate with them. Whatever the reason, the Christmas we made-up adds extra pressure and expectations.

If you are struggling with Christmas this year for any reason, remind yourself of this: Christmas is simply Jesus. Don't feel pressured by the artificial dates and expectations that people have put on you this season. It doesn't matter if you pull out the decorations and lights, it doesn't matter if you have a gift to give or not, it doesn't matter if you celebrate Christmas on December 25th or July 25th. NONE OF IT MATTERS! The only thing that matters is knowing, trusting, and believing in the birth of Jesus Christ and the sacrifice he made for us to release us from the burden of our sin.  Jesus is peace, he is a comforter, and a provider. What he did for us is big and exciting, but the way he came into this world was small and humble for a king.  So can't our celebrating reflect the humbleness, peace, and simplicity of his birth?

This year it took everything in me to put up my Christmas tree. It's the most painful thing I've done since my mom died. In my family, the tree isn't picture perfect. It doesn't have matching ornaments, or a nice color theme.  But it is filled with memories. Each year my grandmother gives us each an ornament that is unique to us and represents something important that happened that year. Each year with my mom we would carefully unbox each one and talk about that year and the memories we had. Like the year I got my first car, I have an ornament that looks very similar to my sweet little red pickup. We would talk about me learning to drive a stick shift or having to shovel snow and dirt into the bed of the truck so I wouldn't slide in the winter. Or the little redheaded figurine that reminded my mom of how I would get dressed up after a bath and then walk around the Livingroom pretending I was a queen and making everyone tell me I was beautiful before I would get into my PJ's and go to bed. 

My mom and I would laugh and debate about the way we remembered things versus what actually happened. Then once we were done, we would top the tree off with our favorite angel or star, then grab some hot chocolate with marshmallows and watch a Christmas movie. But this year, I did it without her. With each step of setting up the tree I cried and with everyone ornament and memory I unboxed I sobbed, with Zeke right there to comfort me. I did it not because I was expected to, but because it was both painful and healing to acknowledge these memories and therefore my emotions. But that is really all I've done. I've bought a few gifts because giving gifts is something my mom LOVED to do. But other than that, I have been focusing on the simplicity of what Christmas is about. I love my memories of Christmas with my mom and other family, I love the traditions and festivities. But what Christmas is about is simply Jesus. My job is to trust and lean into him. My job is to remember how he humbled himself into human form in order to save me from my sin. But that's it. And that's all I can handle this year.  

One tradition that I will always do, even this year, happens on Christmas. It's something that reminds me of the simplicity of Christmas. Ben doesn't understand Christmas or most other holidays, but something he does understand is Birthdays. He likes the candles, the cake, and he particularly enjoys the song Happy Birthday. He understands that birthdays celebrate a particular person and that they are fun and exciting. So to help him understand what Christmas is about, we make what we call a "Happy Birthday Jesus Cake", complete with candles, and in the center of the cake is a nativity scene. We light the candles and turn out all the lights. Then we sing "Happy Birthday" to Jesus several times over which usually gets Ben very excited. Then once the candles been blown out, we clap and cheer for the birth of Jesus.

Ben is very simple minded and finds joy in the simplest of things. This tradition was started to help him, never realizing how much it would help relieve my stress  and simplify the Christmas season so that I could reset my focus on what this season is truly about. Christmas is simply Jesus. And that couldn't be more beautiful. 

Our Christmas this year will be a silent night. A holy night. All will be calm and we will all be filled with joy. "For unto us a child is born, to us a son is given... His name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. (Isaiah 9:6)

Thank you all for never ending prayers and support, especially through this difficult holiday season. Words truly can't describe how thankful we are for you. God is good through the mountains and valleys of life. He has provided peace, comfort, and joy for us. 

Specific Prayer Requests:

• Ben's dentist and staff would be able to get his mouth fixed up and get him feeling better and for a safe procedure.
• For us to figure out Ben's increase in seizures (could be the dental work needing done).
• For Zeke as he continues to be a rock for Ben and I.
• That we would be able to find people to hire for the day shifts for Ben's care.
• That I would be able to get important legal documents without much trouble or too much time.
• For peace and comfort that surpasses understanding as we stumble through the Christmas season. 

Merry Christmas,

Amanda