The Chaos Continues

I had full intensions of updating everyone on my summer activities. I knew my summer was going to be full, but I had a lot of plans. Read, for fun, not for class. Study French, because I have one more year of classes to take and I am very rusty. Finish Book 2: Ethrelguard. Start planning for the release of the Mandate. Study for the GRE. How much of that did I get done? About half, and I mean half of each project.

I knew my summer would be busy, I already said that. But. I was not expecting to be out of town every other weekend, which is basically what happened. First, we went as a family to a reunion and dropped of J1 and J2 with my parents. A couple weeks later, I traveled with J3 to another reunion. A couple of weeks later, my in-laws came to visit. Then my parents came down with J1 and J2 and sent them on their way with the in-laws. I didn’t even get 24 hours with my children. I cried. They had a hard time with it as well. After that was the St. Louis conference. I was exhausted. The theme was racism and reconciliation and over the course of three days I realized how much worse the problem is. So much traveling, so many hours in the car. I needed down time. My writing suffered. Naps were high on the priority list. Finally, there was the WordPress conference, which pushed back our last vacation of the summer by three days. We literally left right after the conference for a twelve hour drive to the in-laws for a four day vacation and to pick up the boys.

Now, we have been home for about three days. I am making sure we have appointments to various doctors and dentists. We need to start getting ready for the school year. New backpacks and school supplies need to be purchased. The boys have tried on their clothes from last year and they have each grown a size or two.

As I write this, J2 is telling me about his robot, J1 is playing Legos and already complaining that J3 won’t leave him alone. I have figured out a couple of things. First, I love the chaos of the normal day. I love having too many things to do and my writing thrives off the fact that I leave my house to work and to get away for a break. Second, I am not able to work on a schedule, to have hourly or even daily things to do. I am envious of people who can. I stayed at home for years with the children and still cannot figure out how my husband gets the entire house clean on Saturday when he is watching the children and yet I could not despite having five days to get it done.

This is actually my last blog post here. Come check me out at eschierschmidt.wordpress.com as I continue this journey into something new.

E. Schierschmidt

2017 Much Needed Update

            I have taken on a tremendous load of work. As many of you know my first novel, The Mandate, has been accepted for publication, as well as, two more works. One needs to be edited and the other rewritten. I also have a fourth novel that is in the works. All of this work will take up the majority of my summer. As I get reconnected with my publisher, Pen-L Publishing, I will be keeping people updated as we prepare for the release of my new novel late this year or beginning next year. That is writing stuffs.

            J3 is doing amazingly well. He goes in for an echo tomorrow to make sure all the work from the last surgery is functioning like it should. The echo is in preparation for his cardiology appointment next Wednesday. Looks like he has a couple of stitches that might need to be removed surgically and we might need to have a plug placed in his heart where they left a pressure release valve open just in case. Both of these things is a day visit to the hospital. Thank you for the prayers and support many of you have given.

            As for my education. I did have to drop a class, which still bothers me but I felt it was better in the long run. I ended the semester with two ‘A’s and a ‘B’. I wish I had done better but it is what it is. I am studying to take the GRE at the end of the semester. I am studying to catch up in French for next year and I should only have one year left of my undergraduate degree. The degree itself is an English major with an emphasis in creative writing and a minor in medieval/renaissance studies. It is a mouthful but it will help propel me into my future endeavors as a graduate and seminary student.

            How am I going to pull this off this summer? With a lot of help from the parental units who will be watching the older boys this summer. J3 is working on developmental issues through a preschool program which gives me a chance to focus on my writing like I focused on my education during the school year. None of this has been easy. The path I desire to follow will not be easy, but I have an amazing support team. I have spent nearly ten years dreaming of this and to watch it unfold has been amazing. I look forward continuing this journey will all of you.

E. Schierschmidt

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.

Palliative Care: The Hospital Again

J3, my youngest, has been turning purple and breathing heavily. His pulse/ox has dropped about ten points. We took him in to see the cardiologist and my fears were realized. Although he is a year younger than we originally discussed, it was time to process with the third round of surgeries. Did we know it was coming? Yes. Were we ready for it? No. Do I wish we could postpone it until this summer? Yes. Do I think we will be able to? No.

            I start school again in a little over three weeks. My older two boys go back to school in a few days. We are terrified. Why we? Because my husband is by my side. This time I am determined to remember this. At the mere mention of returning to the hospital I break down into tears. Why? Because every time we go in with him, there is a chance that we will not walk out with him.

            His first surgery is on Jan. 5^th. It is a heart catheterization, which will tell us exactly how things are going and determine how soon we need to do surgery. Personally, I would prefer now. I would chose to get it over with rather than have it hanging over our heads and the semester. I might miss a week or so of school but it is better than missing during midterms or finals.

            I realize that this sounds selfish, but this disrupts the lives of my other two boys as well who have to live without their parents, but at the same time continue their educations like nothing is wrong. Of course, that is asking too much. I understand that they will act out and they will have earned that right to voice their disapproval with the situation they have zero control over. This disrupts my mother’s life who will drop everything so that she can come down here to care for the children in my absence. The life of my father will change when he can no longer come home to his wife. And it disrupts my husband’s life who has to balance work and the hospital, being by my side as well as our son, but also needing to collect a wage to feed and house everyone.

            We are not ready for this, but we will be packed for more than just a day trip if necessary.

            I wrote that to be released on Jan. 4^th, but I got side tracked by the sheer number of things that needed to be dealt with. I have zero plans to hash out all the details. However, the end product … was a continuation of where we already are.

            The heart cath went great. J3 is doing better than we expected. They are supposed to discuss his case either today or next Monday and schedule his Fontan procedure. Are we nervous? Of course. But once again I have reached the peace that comes with “God’s will be done”. I hope I get a long life with my son and I will love to give all the happy go lucky news, but the facts are:

1)      J3s heart is unbalanced. One side works twice as hard as the other. It will give out and he will need a heart transplant. The doctors told us this at the start of everything. If we are lucky we will get ten to twenty years before this happens.

2)      The Fontan will fail. This we did not know. There are some indicators to watch for but even the doctors do not know why or when it will fail. It could fail within the next six months or it could fail twenty years from now.

3)      We are blessed to have him in our lives and while he is fighting we will fight with him. We will give him the best life we can and as his is a very happy boy I can only assume we are succeeding.

This is yet another aspect of our lives. I am preparing for school. The older two boys will continue school. My husband continues to work. And for those moments when we can come together and etch out meaningful time together we do.

2016 was a Success

I am beginning to notice a pattern. I get really excited about the New Year and all the changes I plan to make and I start off strong and then sometime around mid to end March I disappear. I have done that the last two years. I hope not to do that again this year. Last year, my husband and I sought out changes, some of them worked, some of them didn’t. This year we are tweaking the plan and hope for some improvements. I will post about this more in a later blog. However, the changes we did make have been incredible. I cast the net wide and captured more than I could have dreamed.

            I was accepted into college and managed to balance a marriage, children, writing, and school. It was not easy. We needed help from friends and family in order to make it work. But the first semester was successful. Turns out that I will only need two years to finish a B.A. in English instead of the three I feared.

            I got a publishing contract. This is something that I have worked on for over five years now. I owe a lot to Nanowrimo, who I highly support, my critique group, which I recommend for anyone hoping to become a published writer, and my mother, who edits my atrocious grammar. There is no release date yet, but I hope to be starting a pre-promotion campaign soon.

            I just celebrated my six year anniversary to an amazing man, who has supported me through all the insanity and I can only hope it will pay off for him in the end. My boys are now, five and a half, five, and two and a half. They are growing by leaps and bounds and never fail to surprise me daily.

            Also, and this idea took a very long time to come around to, I am already planning to attend seminary for my master’s degree. This summer I was attending a Synod meeting through my church and through a series of coincidences ended up speaking to the keynote speaker for nearly half an hour before she was called away. I explained to her what was going on in my life, what was important to me, and how inspirational I found her message to be. She gave me encouragement to press ahead. A couple of months later, I spoke to another woman, asked her how she knew God had called her to her work, told her I was considering seminary. After speaking to her, again I was encouraged to continue on my path.

            There is still a lot of work ahead of me. I have gone from being a stay-at-home mother to a schedule that I wouldn’t wish any anyone and I am beyond excited.

            As always, stay with me as I continue on my journey and maybe my journey will encourage you.

Palliative Care: Part 4

            There will be more surgeries. At least one that we can count on, the Fontan, but it is, hopefully, a couple of years away. Still, our last visit with the doctors and trip to the hospital was comical. After all the stress we went through just attempting to have some semblance of normalcy, we walked into, well …

            We thought everything was going great. Our little man was full of energy, rambunctious, and working on trying to keep up with his brothers. So when time came for our six month checkup, I was ready for it. We went in Friday for the ultrasound, J3 was a champ, and we continued on with our weekend. Wednesday rolls around for the actual doctor’s appointment, they only come down to the clinic once a week, all five of us are chilling in our room when the doctor walks in.

            “So, have you decided to have the surgery Friday or wait until Monday?”

            We were shocked, having no idea what he was talking about. The doctor quickly realized the problem and explained that the archway that had a last minute procedure done to it during the bilateral Glenn was kinking and causing a drastic blood pressure difference between his upper and lower extremities. I should mention that he is always a little purple so we didn’t notice the difference. The doctor explains that they want to do an angioplasty to fix the problem.

            I call my mom and the decision is made for Monday. We have to go down Sunday to do all of the pre-operation procedures. We get a hotel for the evening and are back at the hospital early the next morning. At this point I would rank us as pros at dealing with the hospital. We take him to the back, they put him to sleep, my hubby and I go get breakfast and we wait.

            “Well, the procedure went great.” I do a little mental dance and cheer. “Unfortunately, it didn’t work.” Well, crap.

            The doctor explains that they want to go in through the side so that they don’t mess with the heart because it is working perfectly, as perfect as it can work, but that it will have to wait a couple of weeks until he recovers from the angioplasty. And it is at this point that my son shows just how strong he is.

            By the time he has recovered from the anesthesia, he is already standing up in bed. The nurse is doing the best she can to keep him preoccupied and sitting down. The surgeon comes down to check on him and decides that since he has already recovered so well, they can do the surgery in a couple of days. This works for us so that my mom doesn’t have to leave and then return two weeks later. The drive between us and where she lives is a ten hour drive. My hubby and I spent two days trying to keep our son happy. The nurses have brought in enough toys that our room looks like a play center.

            Wednesday comes and J3 goes back early. Hubby and I have breakfast, take a walk, and wait. The procedure went great. J3 is now more part cow. This is a personal pleasure of mine. I love cows and he has cow grafts because there is a less chance of rejection. So, now my son is part cow. :squee:

            First day out of surgery and he is already sitting up and spinning in circles. The poor nurse spends more time untangling J3 than anything else.

            Second day out of surgery and J3 is now actively trying to remove his cannula and Foley. The doctors decide to discontinue both. If he makes it through the night without any issues, they will pull his lines and downgrade him to intermediate which makes my hubby and I responsible for his care.

            Considering everything we went through during the first seven weeks at the hospital, everyone is surprised by his size, his amount of energy, and his recovery time. In a single week, he was prepped, went through two surgeries, rebounded from both, and was discharged.

            J3 is resilient, happy, and loving. He is smart and curious. He is my daily reminder that God exists and is amazing.