DAY 271- LOOKING AHEAD
Sorry it's been awhile since the post, but the last+ week has been very hard, and I completely forgot to update and spread the surgery outcome.
THE PORT IS OUT!!!!!!!!!!!!!!!
We are so thankful to have been in the hands of a truly excellent surgeon/team... surgery was smooth, and we only had one brief hangup in the recovery room when his oxygen level didn't return as quickly as they hoped. So, we got some extra snuggle time, checked our numbers a few (ok, I made them check a lot) and then headed home. Within an hour of being home the sedative had worn off and Red was 100 miles an hour. So fast, we grew concerned that they had given him a version of speed instead of a sedative.
The next couple of days he had some pain on and off, and we struggled to get him to take his meds. We really grew to rely on that feeding tube as a quick and easy way to give him everything, and without it, getting Red to take medicine is a battle. He has become very skilled at holding his breath and refusing to swallow, and then spitting everything back at us.
The incision is healing beautifully, despite it's large size surrounded by colorful bruises that have let us know it's there. We're hoping that it will only barely be noticeable one day.
One HUGE cancer milestone is complete. Life will never be 'normal' for us again, but we've found a new definition of normal... we are settling into the new life we've been given.
Several months ago, when we were in the thick of the battle, our struggle was to survive. So we put our heads down and we pushed through it. There's no choice to step away, no break, no time to understand how hard it really was. Just full speed ahead. Surrounded by our army. Now, our battle is the aftermath. The moment when things slow, and you turn and say 'what in the hell just happened?' The depression has hit full force, and PTSD has shown me how very real it can be. We're sad that our son has had such a hardship so very young. Seeing him fight doctors and nurses away, seeing how much pain he goes through with procedures... it's just awful. We're broken at how much our family dynamic has changed. How much time is spent talking about death and cancer. How much time I've lost with the older two with my extensive hospital stays. We grieve how lighthearted things were before, and how normal conversations feel lost on us now. We don't feel like good parents, and we know we aren't good friends. We're tired, and the road ahead feels far and uphill.
And we're tiptoeing into the winter flu season with a lot of fear. Hoping that we can spend more time at home than the hospital.
The end of this week brought another blow as we found out someone extremely dear to us is just starting their battle with cancer. There's a sad familiarity to this to this journey... once cancer has touched your life, you know it can. Again, and again, and again. This disease feels ruthless in it's quest to destroy. But when you step onto the battlefield of cancer, you are not alone. Red's story is such proof of that.
Comments (11)
You guys are doing the best you can do...and thats what matters. And I doubt I could do it as well as you both. The prayers continue for the sweet little guy...and for the rest of your family. xoxo
Thank you for letting us know - never far from mind or prayers. We celebrate the success with you and hold a vision for complete restoration for baby Red + the whole clan. Restoration with a knowing of how precious every moment is. Once someone told me or I read somewhere this practice a family had with marbles. They filled a jar with enough marbles to be from day 1 of their children's life until 18 (although we know parenting can last long beyond that, if we are lucky). Each day they take 1 marble out of the jar. Cancer, in a way, has been a marble in this journey for all of us. Thank you Red for carrying the marbles to remind us.
Thanks so much for this honest update. My heart hurts for and with you. Much love and prayers...
So happy to hear that the port is out and Redden is on the mend. All of you are a part of this journey and it is not an easy one. I can only say that you and Brian are soldiering through with grace that you might not see but others do. My prayers continue for Redden and the rest of you! Those lovely pictures tell a beautiful family story!
Beri, Your words are so beautifully written. I can not express how I feel about all this until I read your update. It is so true these feelings. I only hope my prayers for all of you will someday ease the pain and somehow, I hope sorrow will turn to joy. Love you. xoxoxo
Your words continue to move and inspire me, and I am so glad redden is full of beans and has such a fighters spirit, all positive traits much needed for his ongoing battle...just know that you and Brian are amazing parents struggling down the toughest road most of us will never know....and doing an outstanding job, and the fact you can verbalize it and share it with so many others is truely a gift...as always prayers and love.💜🙏🏻
you both are amaaaaaaazing parents and even better friends by being an example to others, us, the ones who are outside looking in...putting OUR very own lives and cares into perspective without saying a word...just by your actions in your fierce love and commitment to YOUR family, the family God has placed in your much deserving hands... YOU ALL are living examples of God's grace and 'REAL-ness' in the face of the enemy...whatever that enemy may look like. much love and prayers for your continued healing, mind, body & soul, everyday...xoxo
Hi, Thanks for the update. So glad the port is out and surgery went well. All parents know how kids fight to take medicine, but that will get better one day. Both of you are wonderful parents. You have did everything the medical team have asked of you and more (plus you had to watch Redden's every move and listen to every cry and decide what he needs). As far as being good friends, "oh my" you have that wrong!!!! With all your posts, you have given your friends (plus all the people you do not know, but that are praying) all the info they need to continue to help you in the ways they can. True GOOD Friends are Friends forever!!!!!!! Depression is Tough. Hang in there, think good thoughts, smile, enjoy the Small Loving Things that happen everyday. Love, Peace, Strength, Courage and Patience.
Beri - You continue to serve as a beautiful example of love, compassion, sincerity, and true grit. Thank you for your courage and willingness to be real with all of us so that we can serve you in love and prayer. And as for the parenting part: I see a beautiful and intentional mom in you. Go easy on yourself. I know you two are doing everything the best that you know how and your boys are strong, adorable, fun and compassionate. Sending you light and love. xoxo - Betsy
I continue to pray for Red, your immediate family and your extended family. I am also praying for that newly diagnosed one. Blessings and Peace, Jane Thompson Debby Hancock Nifong ' s friend