Transported in Time

The last 10 days or so have been extremely difficult.  It is funny how your heart remembers things that your head is not really focusing on.  October 9th marked a year ago that I took Travis to the ER.  He spent 10 days in NICU at TGH and then came home on the 19th.  Despite my best efforts to distract myself, my heart has relived every moment of those 10 days a year ago.  At the time, I do not really remember crying that much.  I remember just trying to hold it together, thinking that whatever we found out, it just would not be that bad.  Now that I am relieving those 10 days in hindsight, the tears fall very freely.

I did not even realize that October 9th would be significant to me.  I do not even remember where I was when it hit me what that date meant.  The correlation did not even occur to me until just a few days before the date.  Someone said the date aloud to me in reference to something else and it sucked the breath right out of me.  I remember the first thought being, “That can’t be true.  It couldn’t have been a year ago that I took him to the ER.”  The next thought was, “I never had any idea that when we walked into that ER, a year later I would be here without him.”  Then the tears started falling.

For 6 weeks, Travis had a continuous headache that never seemed to go away.  I would causally mention from time-to-time that he should probably see a doctor because that really wasn’t normal.  I didn’t really think it was very serious.  He was still working and participating in church and our family activities.  We had been through a lot in the previous 2 years.  We had followed a call that God had given us and things had not worked out they way we thought.  Things are not always easy when you follow God.  We knew that but those 2 years had been extremely difficult.  I knew that Travis, most of the time, felt very much like a failure as a provider for his family during that 2 years.  Looking back now, I can see other symptoms of the brain tumor.  Forgetfulness, lack on concentration, slight personality changes.  I remember thinking and even remarking to close friends that I thought he was depressed.  I can’t tell you how often I wish that had been the case.

The Thursday before the ER visit, he came home from work and began to vomit.  That was the first time that I began to think that maybe this was something serious.  The vomiting resolved though and he seemed to be okay.  As a person who suffers from migraines, I know how pain can make you sick so I chalked it up to that.  Friday, he was fine.

October 9th–Saturday morning, I was getting ready to head out for a meeting and I was going to be gone most of the day.  I was 10 minutes from walking out the door.  I came out of our bedroom to find Travis vomiting in the kitchen.  Something inside me really registered then and I had this very strong feeling that I needed to take him to the ER.  If you know Travis personally, then you know that was no easy task.  Thankfully, he didn’t fight me much on it.

Even as we waited in the ER, Travis would make remarks like, “They have an hour to figure it out and then I’m going home.”  The scans began to come back and it appeared there was something going on in his brain but no one seemed to be able to tell what.  A casual reference to being admitted to the hospital came up and Travis said, “I am not staying here.  I am going home tonight.”  After it became clear that he was going to be admitted, Travis words were, “They have one day to figure it out.  I’m going home tomorrow.”  I remember Travis’ parents arriving on that Sunday or Monday and his dad walked over to Travis’ bed in NICU and said to him, “I only have one question for you.  How big was the 2×4 that Tammy had to use to get you here?”  Everyone laughed because it was not really far from the truth.  Even in NICU, he kept assuring everyone that he would be home in a few days.

As the days dragged on and I left him in NICU every night and drove home to sleep alone, I kept questioning God.  “What are you doing?  What is going on?  Why aren’t you showing the doctors what’s wrong?”  I don’t really remember having a lot of peace or answers.  I remember trying very hard to keep my fears at bay.  That was pretty easy to do because Travis was healthy.  He had never been sick a day in his life.  Until that hospital stay, he had never had an MRI, CAT scan or anything else.  No one seemed to have answers for us.  It seemed to me that even God was not answering me.  I remember the day Travis had a spinal tap.  They allowed me to stay in the room with him.  I was at the head of the bed, holding his hands and stroking his head during the procedure.  Inside, I was crying out to God to do something, to end this now and let me go home with my husband.

Our children were scared, understandably.  One of the things that Travis said very early in that hospital stay was that we were not going to hide anything from the children.  We were going to tell them everything we knew.  I glad we made that decision then and that I honored that decision throughout the next 10 months.  The children will tell you that all they were really thinking everyday was that dad would come home tomorrow.

There was still no answer as to the cause.  Because Travis presented with no other symptoms but a headache, they had started with a long list of possible causes and began to rule them out one-by-one.  All the while, they continued to say to me “it is highly unlikely that it is a tumor.”  Even as the list grew shorter, I never entertained the tumor idea.  I was actually hopeful because I thought that we were getting closer to answer.

October 14th–I remember the day they told us that needed to put a shunt in.  The CSF buildup had begun to put pressure on the optic nerve and they were afraid of permanent damage if they did not do something.  Travis was very reluctant to have the surgery.  He did not want to do it but the outcome of not doing it did not seem that great either.  They let me into NICU early that morning so that I could be with him and walk with him down to the OR.  My heart was in my throat and I couldn’t seem to breath.  I did not see any of the surgeons before the surgery but I was not that worried because we had already discussed the procedure.  They had performed a different type of scan on Travis the day before, something I had been aware of.  It is not a scan used very often.  What I was not aware of was the fact that they had crossed everything off the list except tumor.  I also was not aware that the scan showed possible signs of tumor and the decision had been made to do a small biopsy when they did the shunt.  I received all this information after the surgery.  I remember being stunned.  I remember the doctor telling me that Travis would be the 1oth person documented to have a tumor in that specific region of the brain.  I think I went into denial mode pretty early, telling myself we would just wait for the lab results.  After all, maybe they were wrong.  I would not say anything to the children or anyone else until we knew.

October 16th–I was at the hospital with Travis when a doctor came in and introduced himself.  He was a oncologist and wanted to talk to us about radiation.  I remember feeling like I had been doused with cold water in the face.  If they were sending in an oncologist, then this was serious and they were pretty certain even without the lab results.  I remember panicking a little a that point.  I think I told him that I didn’t want to talk to him until we had the lab results.  He looked at me funny but respected my wishes and left.  As Travis slept, I realized that I needed to probably talk to the children sooner rather than later.

October 17th–That Sunday, I gathered the children in the living room.  I had asked some close friends to come.  Friends that I knew would be there for my children emotionally, no matter what.  I remember feeling dazed and outside of myself.  It was almost as if I was on the outside watching myself tell my children that their dad had an inoperable brain tumor.  There was a lot of shock that day and tears.  The question came that day for the first time, “Is dad going to die?”  Everything in me wanted to reassure them and tell them “no” but I knew that I needed to be honest as much as it pained me to do so.  My answer simply was, “I don’t know but we are going to try to do everything we can to help him live.”

The days after the surgery, Travis had been completely changed.  He was not responding like he had been before.  I think we lost our first piece of him then.  The surgery seemed to aggravate the tumor and that seemed to affect abilities that he had before the surgery.

October 19th–We came home that evening to our children and friends.  The children had made a sign welcoming Travis home.  A sign that hung in our yard for a while until it finally tore.  Some wonderful friends had agreed to be on hand to help get Travis up the stairs and in bed.  He had lost a lot of muscle tone and strength from the hospital stay.  I remember laying in bed that night with him next to me for the first time in 10 days.  It felt so good to have him home, to have him with me and the children but I was terrified.  I cried a long time that night because I didn’t have a clue as to what the next few days, weeks or months would look like for us and the ultimate possibility seemed unfathomable.

This is what my heart has been reliving for the past 10 days.  All the feelings of unfairness, loss, unjustness, anger and everything else hit me full force.  After the realization about the dates hit me, my heart was drawn a few days later to go to Lake Rogers Park.  This park has a very special place in my heart.  Travis would go to this park to talk to God.  Sometimes he did that as he walked around the lake.  Other times, he had a favorite bench that he sat on.  I always called it Travis’ bench.  This bench is where my heart was drawing me.

View from Travis' bench

View from Travis' bench

I cried and sobbed on that bench that day.  I journaled a little but mostly I talked to Travis.  I felt closer to him there then I had felt to him since he passed away.  I miss him more everyday.

Advertisements

Identity and Loss

Below is a homework assignment from my counselor.  The following thoughts about my identity and loss were written on 9/12/11.

Identity and Loss

 

 

 

 

 

 

 

I knew from the moment that I was given this as homework, I was not going to like it.  I tried to shut it from my thoughts but it creeped in any way.  I put it off because I did not want to face it.  There is a lot of hesitancy in me to “go there” right now.

Yet all weekend, God seemed to keep bringing things to me that spoke of this.  The phrase from A Grace Disguised came first:

“…I did not get over the loss of my loved ones; rather I absorbed the loss into my life, like soil receives decaying matter until it becomes part of who I am.”  I feel an immediate pain and ache in my chest with that statement.

Then God seems to call me to something deeper with the next phrase:

“…the deeper we plunge into suffering, the deeper we can enter into a new and different life…a willing to face the loss and enter into the darkness…”  It seems that this crossroad is where I stand.  I have a choice and I have known it for a while:  either walk into the darkness and embrace all that it encompasses or to run from the darkness and ignore all that it represents.

I think that the darkness represents part of the identity for me, an acceptance on some level.  Maybe it is more about letting the loss become a “part” of me instead of something that happened “to” me.  That involves a deeper level of grief and sorrow, maybe even joy, then where I am now.

Yet if Travis truly was a part of me and my identity, it makes sense that the loss of him would have to be a part of me as well.

I think the only way that happens is for me to enter the darkness.  What if I get stuck in that darkness?  What if I sink into that darkness and can not get out?  What if the pain of that darkness overwhelms me?  What if I do not find God in the darkness?

Yet it seems that the means God is providing for me to experience Him now is darkness.

The following seems to be the best picture I have found about loss and identity for what I feel right now:

“…Lovers still reach out in the night to embrace one who is no longer there.  Its like the phantom pain experienced by those who have lost a limb.  Feelings still emanate from that region where once was a crucial part of them, and they will sometimes find themselves being careful not to bang the corner of a table or slam the car door on a leg or arm long since removed.  Our hearts know a similar reality.  At some deep level, we refuse to accept the fact that this is the way things are, or must be, or always will be.  Simone Weil was right, there are only two things that pierce the human heart:  beauty and affliction.  Moments we wish would last forever and moments we wish had never begun.”  That is where my heart lives right now, in between beauty and affliction.  All those moments with Travis that I wish would have lasted forever and that moment when I took him to the ER where I wish it had never begun.

When I think about the picture of image of someone who has lost a limb, the first thing that you notice about that person is their evident loss.  You can not help it, it is just obvious.  Even if they have an artificial limb, it is not the same.  They have just learned how to live with the loss.

That picture is one that I feel like is me without Travis.  My loss will always be evident and obvious.  I will always have phantom pain.  I may learn to live with it but it will be part of me.  Not in a physical representation but in an emotional representation.

Struggle and Shock

This past Monday marked four weeks since Travis passed away.  On one hand it does not seem possible and yet on the other hand it seems much longer.  I have struggled to journal, struggled to blog.  Not because I do not have anything to say but because I have too much and it is hard to sort through.

We are struggling and yet in many ways, still in shock.  While watching a movie last week, I had this thought/feeling come upon me that Travis was going to walk in the door any minute.  In talking to the children, they seem to experience the same kind of things.  I still have to remind myself at times that he is not just off with friends for the weekend or at some event.  To some extent that shock did not just begin now, it began last October.  While 10 months seemed like a long time to us while we were living in the middle of it, it was really quick in the scheme of time.  I do not think we ever even really came to a place of acceptance in the 10 months, we struggled to stay ahead of the diagnosis and the reality.  In that sense, most of the counselors have commented to us that because of that fact, reality and acceptance may take a lot longer for us. That seems true to me at this point.

There are moments when we feel the absolute rawness of our hearts and emotions.  We feel even small things so much deeper because our hearts are just so bare and laid open.  Things that brought me comfort and solace before Travis’ diagnosis hold nothing for me know.  I struggle to find something to give me relief from the pain at times.  I have never been in that place before.  It is very unnerving on many levels.  Most often I reach a place where I just have to shut down or compartmentalize my pain to get something accomplished.  I realize that it may not always be this way but it is what gets me through the days now.

Just as “struggle” seems to define our days right now, it holds true for us with God as well.  The other day, a melt down happened with the children over a bag of popcorn (no emotional margin for any of us right now) and resulted in an episode of tears and words from their hearts.  “It feels like God hates us.  Why did He have to take our dad?”  I have no words.  No one does.  We just hold each other and cry.  I think that this is just as much childlike faith as anything else is.  Does not faith require not only a belief in what we know to be truth but also in the face of circumstances that make it hard to believe?  Faith requires a level of honesty before a God who expects nothing less from us.  We know in our heads He does not hate us but in our hearts it feels true for now.

God has not seemed to show up in the way we thought He would.  Not only in terms of healing and miracles but in terms of His presence, comfort, answers.  I read the following last week in the book Shattered Dreams, “If you are seeking God in the middle of shattered dreams, if you’ve become aware of your desire for Him but are having trouble finding Him, be encouraged that it bothers you.”  It does bother us.  Our heads know the truth but the our hearts have yet to feel or see His movement on our behalf.  Not to say that He is not moving, He probably is.  We just emotionally are not aware of His movement.

Early on in this journey, I had a friend, who has suffered her own deep personal loss, make the following statement to me.  “There are no words that I can offer you that will make any difference.  All I know is this.  God will hold onto you until you come to a place where you can hold onto Him again.”  That phrase has become my life preserver in the midst of an emotionally turbulent sea.  That is what I am holding on to for now, knowing that it is true.

An Excerpt from Sacred Romance

The following is an excerpt from John Eldridge’s book Sacred Romance (pp. 56-57).  If you have never read the book, I would encourage you to.  You will see not only God in a whole new light but your thoughts and views on relationship with Him will change dramatically.

This excerpt came through my email inbox (part of their Daily Reading email) on July 8th.  I have not been able to get the words out of my head since then.  For me, right now where I am, it depicts my struggle in my relationship with God.

Suspended over Pits of Snakes

When we were young, most of us loved adventure. There is something about the unknown that draws us, which is why we like stories so much. But I like to leave the theater at the end of the play, knowing that the dilemma of evil has been resolved by the characters on the stage or screen. Like Peter, Susan, Lucy, and Edmund, to find ourselves not as spectators but as central characters in the play itself is somewhat daunting. The stakes are truly high, sometimes literally life or death, and God rarely if ever yells, “Cut!” just as the dangerous or painful scene descends upon us. No stunt doubles come onto the set to take our places. Many of us feel that we have been playing these kinds of scenes ever since we were children. We wonder if the hero will ever show up to rescue us.

We would like to picture goodness as being synonymous with safety. When we think of God being good, we perhaps picture someone like Al on the popular TV program Home Improvement. He is someone who carefully plans out each task ahead of time and has all the proper tools and safety equipment in place; someone who has thought out every possible danger ahead of time and made allowances to ensure our safety as his workmate; someone who goes to bed early, gets plenty of rest, and wears flannel shirts as a mark of his reliability.

Being in partnership with God, though, often feels much more like being Mel Gibson’s sidekick in the movie Lethal Weapon. In his determination to deal with the bad guy, he leaps from seventh-story balconies into swimming pools, surprised that we would have any hesitation in following after him. Like Indiana Jones’s love interests in the movies, we find ourselves caught up in an adventure of heroic proportions with a God who both seduces us with his boldness and energy and repels us with his willingness to place us in mortal danger, suspended over pits of snakes.

Trying to Find Life in the Middle of Pain

I know that many of you have been wondering how we are doing. There is not a lot of positive or good things that I can say right now for where we are. I think most of you probably know that. This part of the journey, while I have dreaded it for 10 months, is much harder and painful for the children and I then I imagined it could be.

The service for Travis, while hard for us in many ways, was exactly what we felt like God had put on our hearts. We left there that day, with a peace and comfort that all involved portrayed his life well that day. The children even remarked that “dad would have been really proud of that.” And he is. We left from the service and headed out-of-town for a few days. We all felt that we needed some time to ease into coming home and the reality that Travis wasn’t there. That was very good for our hearts. All the emotion that is associated with our house was absent. It many ways, it was still hard. We would be doing something, fishing, hanging out, whatever and it wouldn’t be long before someone would say, “I wish dad were here.” or “Dad should be here” or “Dad would love this.”

We spent the last 10 years or so making our marriage and our family the priority. When I say that we did everything together, we really did. I do not think that we consciously at the time realized the importance of those decisions but we established a strong family identity as a whole and with each other individually. That was good and I don’t regret it but it makes this place that much more painful because the hole is that much more evident. It is felt in every moment and in everything we do.

We lived the last 10 months, moment by moment. We are still doing the same now. We are not requiring much of ourselves. We are struggling to figure out to “be” now in this place and that takes most of our energy. Grief itself is exhausting. Even among the 5 of us in this house, we are all processing grief differently. We are also learning to offer each other a lot of grace and mercy in this place as well. Our youngest said it best the other day when she said to me, “I walk around all day and there is always this tear in the corner of my eye that is ready to fall any moment.” That about sums it up.

There is an actual physical pain and ache in my chest that never seems to go away. Some days, that pain is intensified like on Mondays which marks the day of Travis’ passing or when I had to pick up his remains. It still seems surreal. I keep thinking that this is a nightmare and I will wake up. Acceptance seems to be hard fought for all of us at this point. I think one of the most freeing things that the grief counselor said is that there is no time limit on the stages on grief. It might take 3 weeks for me to accept Travis’ passing or it might take 3 months.

This will be the last post on Care Pages. Care Pages are meant for patients and their families and we no longer fall into that category. This is not the venue for me to use to post about our journey from this point on. I have moved all of these Care Page posts over to my blog site: https://tjmcclelland.wordpress.com/
(I apologize to those of you that keep receiving notices that a new post was up. I could not figure out a way to move them without notices being sent out.) If you wish to follow the continuation of our family’s journey then feel free through my blog.

Thank you again for all your cards, texts, FB messages, etc. While I have not been able to respond to all of them due to the emotional energy that requires on my part. They have always seemed to come at the most opportune moment. A moment when I really needed to know that there really were people lifting my name to God even though they were unaware of where I might be in that moment.

290 Days and Travis Reached His Final Destination

Travis passed away at 10:30 p.m. on Monday. I think to date, this will be the hardest post that I will write. By Monday morning, Travis was in a coma. He most likely had slipped into one on Sunday at some point. Having never experienced any of this before, I did not realize that had happened because he was still opening his eyes some. At about 1:30 p.m. on Monday afternoon, his breathing began to change a little. I was not sure what was going on and I was afraid that I was making something out of nothing so I was very cautious in making decisions. The nurse was due from Hospice within the hour so I waited for her to assess Travis. After she assessed him, she felt that we probably did not have much longer, that Travis would most likely pass later that day or that night. It was felt that the tumor had probably reached the brain stem and that was accounting for the breathing and heart rate changes. At that point, I felt safe to sit the kids down and let them know. Of course, our youngest was the first to respond, realizing that Travis was not going to make it to her birthday. At this point, I was so grateful that the children and I had taken time to say our goodbyes weeks ago. There was no urgency or rush, just a realization that the end was near as painful as it may be. A nurse friend of mine offered to come over and manage Travis and stay through the night if need be, so I could just be with Travis. Other people stepped in and stayed with the children and hung out with them so I could be with Travis. I spent the last few hours with Travis. It seemed like it happened so fast compared to the months that it took us to get here. The children seem to be doing well. Believe it or not, as the details were being seen to and arrangements being made, there was quite a bit of laughter coming from the other end of the house where the children were. Only God. I am still pretty numb. I do not think that it has settled in yet. I am not sure when it will. I do not think I will know what to do with myself in the morning. Everyday when I awoke, I got Travis’ medicine and started the day with taking care of him. I guess I will see tomorrow.I will post details on Travis’ memorial service once they have been arranged. Thank you again for your love and prayers.

289 Days and Calm at the End of the Week

This week started out with some very chaotic activity but by the end of the week everything was been calm and peaceful. I guess those are two odd words to use in the midst of this but it is true. There have been no more seizures. The new medication plan seems to be working and for that we are glad. The Hospice doctor was in on Wednesday. By then, he felt that Travis had stabilized and I agreed. The nurse was here on Friday and everything was about the same. Since the seizures, Travis seems to have a harder time communicating. I don’t think this is related to the seizure but more an energy factor. Whether it is the energy it takes to process a question and then not only think up the response but then communicate or just the energy to communicate, either way, communication with Travis has dropped off dramatically. Not only verbally, but head shaking or even blinking is not really even being used by Travis. So with communication dropping off, it has made my job a little more difficult. Trying to read signs and things that might give me indications as to pain. I noticed on Wednesday that Travis seemed to be restless, just moving around a lot. He was not moaning or grimacing, just moving more than usual. At first I didn’t think much of it. Then I noticed he was rubbing his head a lot. Again, no other signs just holding or rubbing his head. By Friday morning, I wondered maybe if Travis was experiencing maybe a low level of pain or discomfort thus causing the restlessness or head holding. When the nurse came, we discussed it and decided that next time I viewed those signs, I would give him pain medicine and see what happens. That decision seems to have resolved the situation, so apparently there was some low level pain or discomfort that he was experiencing. After the pain medicine kicks in, Travis calms right down. Travis is still not eating but that started before the seizures so that is not new. He is able to swallow small pills and water if he is awake. He has been sleeping quite a bit more than before the seizures but not anymore than he was when he would be in a decline. The children were able to hang out with some friends this week and I think that was good for them after the emotional start to the week. An opportunity to just be kids and live life. My biggest concern now is that our youngest child’s birthday is in 3 days. Not like I have had any control over anything that has happened so far but I have had to give this to God just like everything else. All of the children are aware of the circumstances and that Travis’ passing maybe days or weeks away. We just have no way of knowing. I have especially talked to her though, about her feelings about her birthday and what her desires are. It just gives me a way to pray. She really wants her dad to be here to see her turn 11. My prayer is not only for that but also that no matter when Travis passes, that God is able to handle her heart in such a way that her birthday will always be joyful and not painful in the years to come.

285 Days and Another Seizure Yesterday

Travis had a minor seizure yesterday morning. It seems odd to combine the words “minor” and “seizure” in the same sentence but that is the best way to describe it. It only lasted about 2 minutes. We were just about to administer the medicine when he stopped seizing. Whenever he has a seizure, it starts the clock over as far as recuperation. So yesterday, he slept a lot and was pretty unresponsive. If I walked through his field of vision, he would track me with his eyes. Last night I noticed that he would watch the t.v. for a few minutes a couple of times. Mostly, he just stares off to the side. Last night, he began to move his left leg and arm more, which is a good sign. This morning he has responded verbally a few times and been awake quite a bit more this morning.Monday evening, the children started asking questions after everything had calmed down. Things like, “What does this mean?”, “What if he has a seizure while you are sleeping?”. Things like that. I explained that this didn’t mean anything really. It does not make anything more imminent. He should have been having seizures all along and he was not. Now he is. I explained that I am sure I would wake up if he was having a seizure. In the event of another seizure, we would simply administer the medication and it should stop within 15 minutes. The children then, of their own accord, came up with a plan and they gave each other jobs as to what their role would be if Travis had another seizure. I then explained that if the seizure did not stop, we would simply call Hospice and they would come. Interestingly, they were very concerned if Travis would go to the hospital. It seemed that they did not want him to leave home. I explained that he would not go back to the hospital. That if we encountered a scenario where it was hard to control the seizures that Hospice would give us a 24 hour nurse to manage the seizures so that responsibility did not fall to us anymore but that Travis would stay here. By the time they went to bed that evening, they seemed to have all settled into the fact that this was just the new “normal” and it was not a big deal. Even yesterday with Travis not really responding and sleeping more, they still came in the bedroom quite a bit and just talked and interacted with him as they always had. It didn’t matter if his eyes were closed or if he responded, they talked anyway. That was a beautiful thing to watch. As parents, we know that our children love us even if they do not always show it. Watching the way that our children have poured love out on Travis has awed and humbled me on more than one occasion.

283 Days and Grand Mal Seizure

Travis had a grand mal seizure this afternoon. He has not had a seizure since about February. Funny enough, the Hospice nurse had actually just been here and had only been gone about 5 minutes. The girls and I were at the table working on a puzzle. I heard a funny noise from the bedroom and when I looked into the room, I realized Travis was having a seizure. I immediately went over to make sure that Travis was safe and would not hurt himself. It seemed like chaos ensued all at once. Our youngest child had actually never seen Travis have a seizure, so she immediately fell apart. Pretty quickly I realized that I needed to prioritize what I needed to do. I called Hospice and let them know what was happening so they could dispatch the nurse back. I then called someone who could come and sit with the girls until everything got resolved. Once that was taking care of and while I continued to make sure that Travis was safe, I calmly explained to girls again what was taking place in Travis’ brain and that he was not in any pain. (Travis will still seizing during this whole time.) It had been so long since Travis had a seizure and of course, we are very aware that the end could be near. After the explanation, the girls seemed to calm down quickly enough. The boys had been outside during this time and finally came in the room. At this point, Travis was not seizing anymore but I let them know what had happened and that we were waiting on the nurse to arrive. The seizure lasted about 4 minutes and then Travis pretty much fell asleep after that, which is pretty common after a seizure. The nurse and our friend both arrived at about the same time so the children were occupied while I dealt with the nurse and what a plan of action would be if Travis had another seizure. We have an anti-seizure kit here so that immediate medication can be administered to stop a seizure should it occur. They also decided to increase his anti-seizure medications hopefully to reduce the occurrence of more seizures.Travis will pretty much be out of it, so to speak, for the next few days. While he might be awake, there will be little response or recognition and he will sleep a lot. After a seizure, it takes the brain time to recuperate. Seizures are very taxing on the body and the brain and everything will work in slow motion for a while. I do not really know how I seemed to keep a calm head in the middle of all this. I do not know how I just immediately knew just what needed to be done and in what order. The only explanation would be that whether I felt him or not, God was here and orchestrating everything, even clear thinking on my part.

282 Days and 9 Months Since Diagnosis

It has been a little over 9 months since Travis was diagnosed with a brain tumor. Things are pretty much the same. We seem to go through some very extreme ups and downs. Travis will go through several days in a row where he does not eat, rarely speaks, sleeps a lot, has irregular breathing, etc. Then all of the sudden, he will turn everything around and be back to eating, being awake and not exhibiting anymore signs of decline. This is very hard for me emotionally. It feels like I am attached to a bungee cord that keeps going up and down. The children are doing well even with the extreme ups and downs. Since Travis has been bed bound, the children have each in their own way naturally gravitated into taking care of Travis. They seem to get such joy from being able to take care of their dad anyway that they can. They are always asking if he needs something to eat or drink, if he needs his pillow adjusted, making sure that he is not in pain and other things. While that is definitely a role reversal, it seems to bring them great joy and allow them ways to be even closer to their dad.The only way to really explain this plateau is to share with you a conversation that Travis and I had a few weeks ago. I was sitting by his bed and we were talking. He said that he was tired of fighting. I told him that it was okay to stop fighting, that the children and I love him and we will miss him. I also told him that I and the children loved him enough to let him go. He then looked at me and said that he didn’t want to leave. From that point on, he made up his mind that he was not going to leave his wife and children. So the days that he levels off are days that he can, by sheer will, overcome the things that are going on in his body. The days that are lows, I believe, are the days where the battle gets the best of him. I don’t believe that his desire to leave has to do with worrying about us or how we will live but more the fact that for Travis, his family has always been a high priority. Wherever his wife and kids are, then that is where he wants to be. Just for the sheer joy that he loves being with his family almost more than anything else. The chaplain from Hospice came in last week to visit and spent some time talking to Travis about this. He did a great job talking about it and even seemed to put into words what I had been thinking and asking God for in regards to this. He talked to Travis about how it seems that God has built this innate desire into men to want to finish a job and see things through. Yet, Travis is 39, his children are still being raised, he still has years of marriage to live out with his wife. Then he said that unless a miracle occurs, that God is telling Travis that he will not get to finish those jobs, that God has another plan and way to finish those jobs. The chaplain then confessed that he could not imagine what that would be like but could only assume that the only way a husband and father could come to a place of saying, “Not my will but yours”, would be if God granted him the grace to do so. He then prayed along those lines with Travis and I. I know that is true. Travis’ desire to remain with his wife and children and to finish the jobs that God originally gave him the day that we got married is a noble, honorable and just desire. So I have been asking God to give Travis whatever it is that the needs, whether that be grace to accept or something else, to be able to come to a place where he can let go.

« Older entries Newer entries »