Day 89 - THE CHOICE FOR HAPPINESS
Today was the third day of round #5 of chemo. It's so hard to believe that we're already here.... 5 treatments in.
This week's meeting with our doctor brought a blow that we were expecting. The tumor's continuing to not shrink, but it is believed that the treatments are keeping it contained. So we'll proceed the way we're going, in the anticipation that it could take up to a year before we get where we want to be. We'll treat, and evaluate, and treat, and evaluate, and treat...... our heads are spinning. We're back to the mindset we tried so hard to attain in PICU days: One second at a time, then a minute, and then a day. Tomorrow can worry about itself. God just get us through today.
Last weekend we enjoyed a weekend away, provided by the extreme generosity of others. It was a much-needed break from our life, and allowed us to sit, smile, relax.
Before we got there we made sure the route to the hospital was mapped and ready, just in case (only 20 min away!), and we had all of his medicine carefully measured and arranged. I think I spent two hours packing his medicine and necessities, and about 5 minutes stuffing random clean items of clothing into a bag. Of course, within a few hours of arriving at our destination Redden had suddenly yanked his ng tube out. Before I could even process it, I turned and swiftly put it back in, exactly as I've seen the nurses do many (thousands?) times. And just like that I reached another cancer Mom milestone. Given that at the start of this I almost passed out when the nurse brought the ng tube into the room, I would say progress is being made.
We spent most of the weekend just relaxing. Being together. Normal family vacation things. When we stopped for dinner one night, per the usual, we were a spectacle. I was trying to feed the baby and the older boys acted like they had never seen a booth before, and sought to conquer it like mountain climbers. It's the table scene that my pre-parent self would have side-eyed, and said 'Wow. Our kids are not going to behave like that at the dinner table.' But at one point we looked at each other and I started to cry and said 'This is exactly what I wanted for us... normal chaos.'
The weekend gave us the opportunity to have conversations we've either avoided, or not had time to have. The conversations where we verbalize how absolutely terrified we are. How much it cuts into our soul when we see him in pain. How much we struggle with the unknown. How much WE. HATE. CANCER.
Something about being able to finally have time to talk gave us a much needed perspective shift. A reminder of how much good is going on in our lives right now, and how much we have to be thankful for. So, we got home, and hit the ground running. Knowing the challenges that these weeks bring, we shipped our oldest two off to grandparents houses for the entire week. Thank God for grandparents as we couldn't survive these weeks without them.
Here we go, Chemo Round 5.
'You are so brave and quiet I forget you are suffering.' Ernest Hemingway
Chemo weeks are so very hard... Extreme highs and lows for me as our visitors in hazmat suits pump my boy full of drugs each day. And he laughs and smiles and gives me such hope that he's ok. That everything will be ok. But sometimes when he's sleeping I see how pale he looks, I see his face look drawn, I see the patches of hair and eyelashes missing, and I am reminded that my perfect boy is fighting a bigger battle than I comprehend.
I try to quiet my mind by filling time with lots of little distractions to keep us going... such as stringing all his new beads. Three giant strands in right now, and we will be starting a fourth soon.
He's made a choice so young to embrace happiness in his battles. He's teaching us everything.
Comments (19)
I am so thankful that you had beautiful family time...prayers continue...Redden is precious and looks so good despite all he is going through...you are both doing an amazing job!
Beri, with your beautiful photographs, and poignant words, you should consider publishing this journal as a book. I know that anything beyond the necessities of your days must seem superficial, and a waste of needed energy, however, what you have created is both beautiful , and powerful...just like you, and your family! Sending good energy and thoughts to you all!
Dear Irving Family, Thank you for sharing your pictures. Your family is beautiful. God has given you the Grace to appreciate all your children whether they are healthy and active or your little hero, Redden. They are all truly gifts. Love and prayers to enjoy being together.
The Lord God is my strength, my bravery. He will wall me through places of trouble and suffering. - Habakkuk 3:19 'The enemy always fights the hardest when he knows GOD has something great in store for us. "And that could not be more true already at 4 months REDDEN has captured the hearts of some many people. raised awareness for such an amazing cause and has taught his mommy and daddy and his big brothers one of life's greatest secrets. CHERISH the everyday, the mundane, the chaos and EMBRACE it. Live for the Now and live life in laughter love and fearlessness! Love you all. xoxoxoxoxo
Redden is just so beautiful.....I wish I could open up to you and tell you what joy your little boy has brought to my heart. I will save it for another day. I cannot imagine how hard this is for you and your beautiful family, I just love to hear from you, and know that all is still as normal as it can be. My prayers continue for all of you. Miss Patty
My God, I say through the tears after reading every beautiful word you have written. Each of you has amazing strength and may God ever Bless your precious family. Pray for me as I lift my voice for you.
ha ha made me laugh.....I had flash back to when I first met Robin at Home School skating. Since mine were 7 years apart is was so easy (in comparison) to keep Josh under control....well my first recollection of your mom is Seth mountain climbing on the back of the booth, then catapulting to the arm banister around the rink, attempting a tight walking feat of magnificence. your mom just took it all in stride. I was totally impressed. and look He survived and is a successful well balanced young man :) smiles for the day.
We re glad for the little things you have to make you happy and offer our moral support always.
Praying for your sweet baby boy and your entire family!
Amazed at your ability to verbalize so beautifully every high and low, and each picture of your family is better than the one before...in awe of you all,inspired ..and we all continue to hold you close in all our thoughts and prayers..amen. 💜🙏
Beri, I must agree with one of the previous comments. Your writing is very powerful and inspirational. Sending much love and prayers to you and your family!
Mema's really do show up when you need them most. It's amazing you can be this eloquent with the things on your plate. I hope he continues to do well and give red an extra hug from us.
So glad that you and your family had a break away from the ordeal that you are going through. How beautiful are these moments and photos! Our prayers continue to wash over all of you, especially that strong baby, Redden.
You are a beautiful Moma. I know God has his arms around you and your family. I think about Redden everyday. I pray for all of you. From your whole family we could all learn what is important in living life. Thank you so much for sharing with us. Love to all of you. Brenda
You guys are doing such a great job & we are praying for you. Your family is so beautiful and Redden is such an inspiration. Thanks so much for your posts.
Continuing in prayer for precious little Red. Asher ( my 4 month old) and I pray often for our little brother in Christ. We would love to meet Red one day.❤️
Love love all of you!!!!
Hang in there guys! So glad you had some time together to relax as a family, have your chaos back, and talk. Love you so much!
So glad you were all able to escape. Next time I hear a family meltdown in the booth across from me, I'll smile. We all need a little of that. Every single time I read your journal entries I cry - why is that? I like to think that tears are God's reminder that there is an ocean and a tide that He created and He houses in each of us. Decided the tears are an overflow of your authenticity, endurance, strength, transparency and the title of this entry - your second by second choice to be happy.