Staying up late enjoying food and family is the theme of our holidays which translates to late night cannulation. This has a trickle effect as completing dialysis doesn’t happen until 8+ hours later. Well, when your children wake up at the crack of dawn to open gifts it’s another life lesson of patience, love and understanding. They have learned how to help themselves to snacks (used to leave cut up fruit and yogurt on a lower fridge shelf) and keep quiet as dad is on the machine. I get to sleep in until 7am, but Franklin still has 3-hours to go. So, I make them a smoothie and they have a bowl of cereal while they wait. I get some whines of opening gifts. I’m upset that they whine. I’m tired. I wish my husband was awake with us. But, it’s another Christmas of being on our own waiting. Then like a switch my emotions flip from pity party angry to thankful parental mind phucker. “Well, it’s up to you if you want to open gifts without dad and share in the Christmas spirit to enjoy with ALL the family. Is that what you want to do? Open without dad?”. I see the internal struggle. Of course he wants to wait for dad, but he also wants to open presents.

Middle boy: says right aways says “I want to wait for dad!”.

Big boy: master negotiator says “can we open only 1 gift?”

Me: I think dad will want to see your happiness for all the gifts, but I will let you decide.

Big boy: OK. (Sigh)

And so we wait. Only 2 more hours to go. But I know it will be longer. It’s not like dialysis stops and he hops out of bed energized. The complete opposite. He will be exhausted. And depending how much liquid he will need to lie down and recoup for a bit before facing the world. On the weekend it’s always a fine balancing act of feeding the kids enough to hold them over to whenever Franklin actually gets out of bed and wants to go out for breakfast.

One more hour to go so I start cooking. Pancakes, baked beans, cheese omlettes, fried sliced Polish sausage and I peel some clementine oranges. As soon as the hubby comes the stairs kids ask enthusiastically (scream) if they can open presents now. The King of the house says “Go ahead. Start opening presents”.

I love that we are all together. I want to burn this feeling into my soul. As it takes longer and longer for Franklin to recoup when he finishes dialysis the last 10 years of it is taking its toll. The last 16 years of diagnosed ESRD and all the ER visits, hospital stays, surgeries, blood transfusions, emergency dialysis, freedom yet short lived transplant and its subsequent failure, EPS and it’s complications, work, kids, and all the adult responsibilities of life just leaves me and him tired, frustrated, cheated, but also blessed to have each other through his journey with our healthy kids and an amazing family support that not everyone has. I am thankful my parents laid a foundation, my dad kept it up after my mom’s passing and I hope we (the next generation ) can keep us all together for our kids like our parents did.

As I see my kids get older it puts a spot light on my aging father and my husband (since his health issues have aged him and his health is like an old man). I fear losing them. I will have family I can call on, but not like how I can count on them like them. I try and keep my fear and anxiety (which seems to grow with each passing day/year) buried down about being a single mom/widower having to do it all on my own. I haven’t kept up friendships as life just feels over whelming on the best of days. I’m drowning on my worst days. I know I need to put some time for myself where I do something for me. Whether it’s connecting with friends, going to a spa, etc., but I feel guilty. I should just do it anyway. I know. Baby steps. Get to the gym.