Palliative Care: Home Again

            We have now been home for just over three weeks. J3s heart cath showed that everything was working as expected. Since, J3 was healthy but quickly out growing his plumbing, the cardiologists and the surgeon decided it would be better to proceed with the Fontan, the final surgery in a three part series. This went better than expected. However, I want to back up some.

            I have learned to trust my instincts when it comes to my children’s health. I knew we were approaching this phase of J3s care even before our last clinic visit. I had hoped to push it off to the summer, but it is far better to do the work while he has the energy to fight than wait until he is sick and struggling. I shed many tears, as did my husband, but it was my middle son, J2, who gave me an insurmountable level of comfort. He sought me out in those moments I needed to be alone. Knocked persistently when my door was shut. In his arms telling me, “Everything will be okay,” I found peace in his untroubled innocence. He above many who gave me comfort in my time of need forced me to reach down and remember to, “be still, and know that I am God” (Psalms 46:10). Did that mean that I felt everything would turn out great? No! What that meant was the acceptance that whatever was to come, things would be okay.

            I took my son to the threshold of surgery knowing that whatever happened, I would be okay. My family would survive.

            I am thankful that J3 went in and come out fighting. He fought the “goofy juice” that turned my strong little boy into bumbling comedic relief giving the situation. Surgery was both shorter and longer than expected. Two of the major concerns is the stopping of the heart and brain damage. There was a great since of relief to find out that his heart started by itself. As for the brain damage, well, we knew he was okay when he asked for pizza coming out of anesthesia. We returned home ten days later.

            Of course, we returned to two sick children, and have been passing around a number of illnesses for the past three weeks.

            I am thankful for my mother-in-law who came down and stayed for three weeks to take care of the older boys. For the church members who made her feel welcomed. I am thankful for the prayers and support we received during this time of turmoil. I appreciate my teachers, who allowed me to be absent, and the teachers of my children, who were understanding when they began to act out. I appreciate my mother who listened to my fears and rants and coming up for the heart cath just in case we ended up having to stay in the hospital at that time.

            I am a thankful person and hope that the next time I see the inside of a hospital will be many decades from now.

A 2017 Plan

            I realize this is coming a little late, but it is because I had other things I wanted to talk about before discussing my resolution plans. To be honest, these aren’t really New Year’s resolution plans. My husband and I sat down and discussed what we had discussed last year. We decided what worked and what didn’t work.

            We discussed how over the year some of our ideas, like a date night, turned into something new, like marriage counseling. This was a welcomed change. We are not having marriage trouble, but marriage is hard and we want ours to last. We discussed what didn’t work. He wanted to work on making YouTube videos but other things came up that were more important to him. Family days failed because I needed more time to study. Of course, at the beginning of last year we had not planned on me going to school. We had not considered that I would receive a publishing contract. These change time priorities. However, we still didn’t want to lose family time. We needed to find a way to make that a priority for 2017.

            We sat down and considered what our desires were and which ones we could make a priority for the New Year. The list is as follows:

• ·         Spiritual Devotion (family, personal, couple)
• ·         Homework with J1
• ·         Minimalize our house
• ·         Personal time for my husband
• ·         Personal for me
• ·         A summer trip to visit his parents
• ·         Reunion trip to visit my family
• ·         Watch Cars 3 in the theater
• ·         Weekend Getaway

            Some of these are already behind due to J3 having to visit the hospital again. Fortunately, when we discussed these plans we were not forceful that it had to be done every day. We knew things would come up that we could not control.

            We created a schedule, but again, it was not written in stone and if it was it included a side note that things would come up and that would be fine. Our weekly schedule, at least through the fall semester, is as follows:

·         Sunday: Family days

-        Games, movies, outdoors

-        Family devotionals that included the kids

·         Monday:

-        In house homework for me

-        I help J1 with homework

·         Tuesday:

-        Out of the house writing

-        Hubby helps J1 with homework

·         Wednesday:

-        In house homework for me

-        I help J1 with homework

·         Thursday:

-        Out of the house writing

-        Hubby helps J1 with homework

·         Friday:

-        First Friday of the month is Marriage Counseling

-        Forth Friday is a Skype Critique (Writing/Editing)

·         Saturday:

-        Second Saturday is Skype Critique (Writing/Editing)

-        Homework days for me

            Looking at the goals from 2016 and making an honest assessment of them allowed us to judge what we were proud of or disappointed by. We discussed the obstacles that had appeared over the year that forced a change to our original plans. We chose the things that we wanted to accomplish this year, even simple things like seeing a movie at the theater. Now, we have a new plan for this year. Can’t wait to see how we feel about it in 2018.

Baptism

            This past Sunday, my three sons were baptized. Not at all J3s decision, although when asked he did answer, “Yeah.” And I am fairly curtain that J1 only agreed to it because J2 was going to have it done.

            What started this event occurred Christmas Eve 2015. I stood up, leaving my sons with my parents and proceeded to partake in communion. The fact that J2 was left out of something, obviously important to a large portion of the church, deeply upset him. This, I was already prepared for. I used this opportunity to discuss baptism with my son.

            It went something like this:

                            

Me: Sweetie, it is not right to take communion without being baptized.

J2: I’m a big boy, I want to be baptized.

Me: Sweetie, choosing to be baptized is a big decision. It means that you understand that Jesus loves you and choosing to love Jesus. It means that you are going to try to be a good person and walk the path Jesus would have you walk.

J2: I’m a good boy. I love Jesus. Jesus loves me. Also, He made the worms.

Me: Okay, well, let me talk to Daddy about it.

            And I did. We waited a couple of weeks to see what would happen. Then one morning as we were getting ready for church J1 and J2 come in. J2 asks if they can be baptized. J1 simply nods his consent to wanting an answer to the question. Once again I explain that it is a big decision and that they need to be sure. J2 was jumping up and down as if my answer had been yes and he was ecstatic. I did the next thing I could think of. I made an appointment for our family to talk to our pastors. The resulting decision was that all three of our boys would be baptized together. The baptism was still weeks out and without fail, every Sunday, J1 or J2 would eventually ask if today was the day.

            Finally, the day came. Mother-in-law had already arrived. We went through an early morning rehearsal. I had explained, multiple times, the schedule for the day. Everything is going smoothly, at least, as smoothly as it ever does. J2 was running around, not loudly, but out of reach for me to be able to stop him. This is a new behavior that I have not yet figured out how to negotiate.

            Then children’s time occurs. This is the point where all the children sit in the front of the sanctuary and have the sermon explained to them in terms they can understand. J2 uses this time to crawl around and under the communion table. Usually, it is after this that the boys go down to the nursery and play. Not today though. This leads to the first melt down. J1 begins to cry. I carry him to the back and explain that because he is being baptized today he cannot go to the nursery. I add that if he would rather not be baptized I would take him to nursery. No harm. No foul.

            No, he wants to be baptized.

            As we return to the pews, I find J2 sitting as far away from everyone as he can get. This of course gives me easy access to him and I take the moment to pull him into the back as well. This conversation is a little different. I take him all the way to the back, through the choir room, and into a bathroom. I expect that a spanking is coming and a resulting screech of outrage to proceed.

           

Me: We talked about this last week and you are too old to roam around and cause mischief. I will not have it. Do you understand me?

           

J2: Now covering his backside, knowing that I am unhappy and that he knows better and deserves a spanking. Doesn’t actually say anything. He simply nods.

           

Me: Good, then you will return to the pew and sit down and behave or we will be back in the bathroom and you will receive a spanking. Do you hear me?

J2: Another nod.

            The culmination of our day arrives as the five of us are standing around the baptismal font with our pastors, an elder of the church whose family means a lot to me, and the children of our church. One woman is taking pictures for her mom who could not be present. Another is taking pictures to be helpful. As well as my mother-in-law, who is taking videos for my father-in-law, who could not be there either. Of course that is not the circus I am watching.

            I am watching J2 play in the water and then wipe his hands off on my backside. For whatever reason the decision was made to baptize J2 first. I didn’t even get to enjoy the moment as I see another melt down pushing the edge of J1s sanity. J1 realizes that the pastor is going to pour water on his head. He quietly removes his hand from the font and backs up beginning to shake his head.

            “I don’t want to do this.” He says in such a quiet voice that I am the only one who hears him.

            I reach out to grab his arm doing my best to get hubby to take J3 who I have been bouncing in my arms as he has already signed many times that he is done. Hubby takes J3. I lift J2 into my arms and hand him off to the pastor, who is already noticing the issue. Our other pastor steps in to attempt to keep him as dry as possible and to J1s everlasting credit his melt down is silent. He is passed off to the other pastor who is doing her best to dry and comfort him. My focus is on J1 and wanting so much to hold him and tell him how proud of him I am that I miss J3s baptism as well.

            This ends with the boys being lead around the church. J3 leads the procession in the arms of the pastor. J2 is waving to people smiling. I still have no idea what was going on through his mind. J1 is desperately holding onto my hand still patting his head from time to time to see if there is any water left.

            At the time, I was just so relieved that things went as smoothly as they did. Now, I can reflect on the idea that every year we can celebrate their adoption into an endless family of brothers and sisters.