Surviving the Pitfalls of Marriage Part 1

Statistics show that when a special needs child is involved, eighty to ninety percent of marriages end in divorce.  I find these numbers staggering.  I also understand a few of the reasons behind the numbers, so I feel it would be a disservice to write a complete blog on living with a special needs child without at least addressing a few of these pitfalls. 

The differences between Bob and I were always present, but they only became glaringly obvious after Caleb was born.  Within two days of Caleb’s birth, Bob was leaving the hospital every morning in order to return to work.  Part of this was due to his strong work ethic (he has never taken more than a day or two off with each child), but part of it was his way to cope with all that was happening in our lives.  He needed the normalcy and the routine that work provided, while I couldn't imagine leaving the hospital for an hour, much less an entire day.  Throughout all of Caleb's life, he has been present when I needed him, but has never wanted to sit around and discuss at length the emotions and feelings associated with any situation we have faced.  Initially, I resented and even judged him for his “lack of caring.”  I felt I was the better parent because I was the more emotionally connected parent.  Over the years, I have learned that Bob’s way of interacting with the situation, is no better or worse than mine.   He is as much emotionally invested in our lives as I am, but shows it in a very different way.  I have accepted who he is and what he has to offer to our lives.  If I had continued to feel superior,  we wouldn’t have made it through the first year of Caleb’s life for rather than working together, we would have been fighting each other and insulting the way we chose to live out our new lives.  

Although I learned to accept Bob’s way of coping while we were in the hospital,  things got a little more difficult once we were home.  Because I was home all day, most of Caleb's care fell to me.  Caring for a healthy baby, let alone a special needs one, is exhausting, as all new moms know, and my weariness came to a head one night when Bob called home to tell me he would be an hour late.  I had been home, alone with Caleb all day, and I was through.  By the time Bob made it home, I was so angry at him, not only for being late, but also for leaving all of the work to me, that I refused to let him hold Caleb.  One of our few intense fights broke out over this situation.  I was a new mom, overwhelmed with exhaustion and loneliness, and I interpreted his coming home late as a lack of love for me – uncaring and cruel.  I told him that if he didn't care enough to be home on time then he didn't deserve to spend time with Caleb in the evening. 

I am not proud of this episode, but it shows all of the different emotions that became part of the misunderstandings within our marriage.  Many of these issues could have been prevented if I had developed friendships with other stay at home moms.  Then I would have had  someone to call and a listening ear.  But I had just left the workforce and had not made any connections with other moms.  Even in today's world, with the Internet , I feel any mom coming home with a special needs child should have a few other women who have walked similar paths, who she can connect with and call during the hard times.   This struggle with loneliness continued for many years, but gradually I began to  develop close friendships with other moms.  Some are on similar journeys, and some are on very different paths, but they have provided me with a place to turn when life becomes too much.  I believe these friendships have helped me to accept Bob for who he is, rather than to try to mold him into someone who can meet all of my needs.  No one person can ever meet all of our needs, especially when that other person is living through a crisis, and placing that burden upon a marriage is often enough to make the marriage crumble.  

To Be Continued next week.

Frustrations in life

While we were still in the hospital, I remember thinking that once we made it back home and survived all of the grief and drama of the first couple months, I would no longer allow the "stupid" things in life to bother me.   How could I get upset over a broken down car, a lost book, or any other little thing when I had just survived the trauma of life with a sick child. The depth of emotions that I had been living through made everything else in life pale in comparison. Therefore, I was shocked to find so many things annoying me once we were back home.  

All of a sudden I was dealing with equipment companies, insurance companies, and nursing agencies. What I expected to be a simple call to order supplies for Caleb would turn into a half hour call where I was told, "the insurance company only allows a limited number of those items, and Caleb's need is greater than the amount allowed."  I would then have to navigate the insurance company in order to try to get the larger number approved.  Needing to push eight different buttons before I could even speak with an operator and then being put on hold was the limit to my patience.  I was so frustrated that at times I slammed the phone down in complete disgust.  

Soon the insurance claims started pouring in.  My degree was in social work, and so at least I had some idea how to order equipment, but I certainly had no idea how to understand the thousands of items listed on the insurance forms.  Nor could I understand why the ER we had taken Caleb to was in network, but the doctor that saw him at the ER was out of network. One night, after a particularly trying day dealing with all of these calls, I prepared to collapse into bed, only to receive a call telling us that Caleb's nurse could not make it. The agency would be sending a new nurse, but we would need to train her before she would know how to work the case.  I found these situations infuriating, and this anger began to consume my life. 

I am in complete agreement that every one of these situations is cause for annoyance, but the fact that I was becoming consumed with it, began to concern me.  I would wake up in the morning and already be thinking of the calls I would need to make, and I could feel my heart start to race.  I would go over and over in my head the injustice of it all.   I began to live in a state of justified anger.  The only problem was that none of this brought me peace.

I needed to return to a more relaxed way of living.  If these frustrations were only going to be short lived, I could have perhaps just pushed through.  But they were not going to be short lived; this was my new normal.   I needed a new way to cope.

This new outlook came in the form of putting my life back into perspective.  If I truly wanted my life to be used by God, then this was the way He had chosen.  I always imagined missionaries in other countries or people giving up their lives in order to stand for what they believed in, as being used by God.  So in comparison, if I had to sit in an air conditioned home on the phone for an hour every day, dealing with what I thought were incompetent systems, then I would accept my lot.  I began to look at every telephone call, every appointment, and every meeting, as an opportunity to care for Caleb and to serve God.  No longer did I see these situations as an intrusion into my day.  Peace began to return,  a little at a time,  as I began to practice this shift in focus.  Sure, I still didn't like the tasks, but I was no longer carrying around the anger or feeling the need to fix all of the systems.

Just a side note to anyone who is going through a crisis with their child.    Systems are broken and you will not fix them by becoming angry, yelling at others, or obsessing about the incompetency.  You need to save your emotional energy to meet the needs of your child.  Deal with the companies as needed, but then let go. 

Life is filled with little things that can become big annoyances.  I believe that if we continue to view every annoyance as a reason to fight, we will soon become weary and battle scarred.  It is in the letting go and the finding peace in the midst of the "stupid stuff" that we can travel through life and allow ourselves to become more patient and forgiving individuals.   

  

Home at Last

We were excited to be back in our own home and to begin sharing our lives with Caleb.  The first full day that we were home we wanted to take him on an outing.   Looking for something routine and normal, we packed Caleb, the ventilator, the battery and all of the emergency equipment and headed out to our local mall.  Pulling him around in the wagon that had been gifted to us by his doctor, we felt such a sense of freedom to be able to go wherever we wanted without being accountable to anyone.  It was the normalcy of life that we had missed when we were in the hospital. 

Back at home we were settling into a routine. We snuggled with Caleb in our favorite rocking chair, I was able to nurse him without others around, we read him books and basked in his presence.  When he slept in his crib at night we could sneak in and gaze upon him.  Everything was calm and quiet compared to the hectic hospital atmosphere. The only part of life at home that we didn't know what to do with, was the constant presence of a nurse.

When we left the hospital, sixteen hours a day of nursing had been arranged.  This was to allow Bob and I time to sleep at night but also to have the help of a nurse for a large part of each day.  Because of the great number of hours that the nurse was in the house, I began to feel displaced. The nurse was paid to care for Caleb, and so I felt my role was to clean, do the laundry, and cook. Except I wanted to spend my time holding and caring for Caleb.  In the evenings, it was awkward having a nurse at the house while we sat down to dinner.  If Caleb was out in the dining room with us, so was the nurse.  The other option was to leave Caleb in his room with the nurse, but then we missed him. 
 

Because of this discomfort, we quickly did away with most of the daytime nursing hours but knew that the night time hours were a must.  We couldn't risk sleeping through one of Caleb's alarms because that would mean death for him.

 Although we accepted the need for the night time nurse, we never really adjusted to the intrusiveness of having one in the house all night.   Because we lived in a small two bedroom apartment, this invasion appeared in many forms.  One night Bob and I wanted to be intimate.  The supplies that we needed were in the hall closet, so Bob went out to get them.  When he returned, his arms were filled with cough syrup, medicine bottles, and the needed items.  “Why,” I inquired, “do you have all these other things?”

"I didn't want the nurse to know what we were doing,” he shared.  And that became the crux of life with nurses.  We needed them; we even became great friends with many of them, but we were never able to get past the discomfort of having another person around for so much of our lives.  When we left the hospital, we were thinking that we would be returning to our private, intimate lives.  The intimate part returned, but the privacy never would.

Heading Home

The day had finally arrived.  We had been trained in CPR, ventilator care, and Emergency Procedures.  Equipment had been ordered, nurses had been hired to provide care in the home, and we were ready to go.

Prior to the discharge date, we had a planning meeting with the doctors, nurses, and social worker.  At this meeting I believe we were talking about what Caleb's needs would be when he went home and how we would meet them.  The only thing I can remember from the meeting were the questions Bob and I wanted answered.  Would Caleb ever be able to get married and live a normal life when he grew up?  And, what was the exact date of our discharge?  Of course, the doctors couldn't answer our question about what Caleb's life would look like when he grew up.  From the time of Caleb’s  conception I began to imagine the totality of his life.  His birth was not only the beginning of a life but the beginning of a dream that I had already sketched out .  I didn’t realize then that dreams can both give hope and cause great grief.  

 A few years ago our good friends’ ten year old daughter died unexpectedly.  She was best friends with my son.  We thought his grieving would be long and hard, but although he missed her in the day to day activities, his grieving was very different than mine.  I not only missed Sara in the day to day activities, but I also grieved for all of the things that she would never experience - her high school graduation, her wedding day, the birth of her own child.  My son lived in the here and now, while I lived both in the present and the future.  Bob and I experienced this same loss with Caleb.  Although we were adjusting to the idea of him on a ventilator,I struggled,  needing to make sure that my picture of his future would remain as I had planned.  Amazingly, as the years have progressed, it has not been the ventilator that has kept Caleb from achieving the dreams I had for him, but a very different diagnosis that we would not receive for a couple years to come

.As the nurses wrote out discharge orders, we got Caleb dressed in his "going home" outfit. Even though this outfit was larger than the one we had originally planned, it was just as exciting to put him in it. We were finally getting to walk the path that we had envisioned when we entered the hospital two months earlier,  we were walking out with our child in our arms.

 We headed out of the hospital, quite the entourage.  Bob and I and Caleb led the way, followed by the doctor from the ICU, the equipment company, and the home care nurse.  Everyone wanted to be sure that we got settled at home and that all equipment and systems were working as planned. 

It was an exhausting day, but as everyone left that evening, except for the nurse, Bob and I basked in the joy of having a "normal life again".  We thought we had made it through the toughest part of our journey and didn’t realize that the terrain would continue to be rocky with many more hills and a few  mountains still to climb.

Losing God

As the weeks continued and we began to make plans to take Caleb home, the doctor arranged for several trials of taking Caleb off the ventilator.   These trials consisted of removing the ventilator while still having Caleb hooked up to all of the breathing monitors, and because they were all scheduled ahead of time we would all be in prayer, believing for a miracle.  We could all then celebrate and head home with a "normal" child. 

As my prayers remained strong, my disappointment in God grew.  Each time Caleb was removed from the ventilator only to be put back on, my heart broke a little more.  And each time I felt a little bit more betrayed by God.  I had no doubts that God could fix my boy, and the fact that he wasn't fixing him caused me to feel hurt and angry.  I began to turn away from God, because how could I go to him when he would allow something so cruel to continue that was surely within his power to fix. 

I had loved and tried to follow God my entire life.  As a child my family attended a Catholic church, and I remember spending hours talking with God while I would play with my stuffed animals or play on the swings in the backyard.  As I entered high school, my parents switched to a charismatic church, and I attended college at Oral Roberts University.  Oral Roberts was an evangelist who greatly believed in the power of healing.  I understood what the Bible had to say about healing and faith and God. 

Now though, my faith and my life were not connecting.  How could I continue to believe when everything I was believing in was not working.  I began to question if I wanted to continue in my faith.  I had known no other way, though, and so to turn from God at this point would have left me completely deserted..

As I look back at this time from where I am now, I realize that God was present all along.  I couldn't find him because I was looking in the wrong place.  I believed that the only way God could show up would be in healing my child.  Because I wouldn't turn around and look for God any other way, I missed him.  I now know that God had hand picked Caleb’s doctor.  Dr Rodriquez's first day at the hospital was the day that Caleb was born  If he hadn't been there, Caleb would have been sent to another facility and the entire course of his treatment would have changed.  God was present in all of the amazing nurses that we had.  They became God's hands of love to us, and although I could receive from them, I never made the connection back to God.  The family and friends that reached out also became extensions of God's grace and love.

Over the years I have often grappled with the idea of faith.  At one time I believed faith was to continue to pray for and fight for what I wanted no matter what the circumstances looked like.  I now wonder if faith isn't trusting in God's love and goodness even when the circumstances don't look good, believing that God truly has a plan that is much different than my own.  I believe that had I prayed as Jesus did, "My Father, if it is possible, may this cup be taken from me.  Yet not as I will but as you will," I would have truly been living in faith.  How I wish I had cried out to God and allowed him to bring comfort rather than to hold on to my "faith" and almost lose Him.

Home away from Home

Now that we had a diagnosis,  Bob and I were ready to move ahead and get Caleb home.  Except that "getting Caleb home" would take another 1 1/2 months.  At the time,  we couldn't believe that it could take so long to get some training and have our son released,  but  we now know that most children with a diagnosis similar to Caleb's, will be in the hospital for at least 6 months with an extended stay at a rehab facility afterwards..  We had no idea that 2 months was a very quick time to get a ventilator dependent child ready and out of the hospital.

So began life in a hospital.  We moved into the private room, the one we had paid extra for when we thought Caleb was going to be born and home in two days.  We watched as family after family who we had attended Lamaze class with came in, delivered their baby, and returned home.  We also made our first trip outside of the hospital without Caleb.

Family that had come into town wanted to take Bob and me out to lunch.  I hadn't left the hospital since Caleb's birth, and everyone thought it would do me some good to get out for awhile.  Reluctantly, I agreed.  I didn't realize the sadness that climbing into the car,  with the car seat all set and ready,  and not having my son with me,  would bring.  As we entered the restaurant,  I couldn't believe that the world was still going on so normally for everyone else.  People were eating and laughing while my baby lay hooked up to a machine, fighting for his life.  I sat at the table,  surrounded by family who loved me,  but all I wanted to do was get back to the hospital and be near my little boy. I don't know if I ate anything or just made it through that first meal.   For the rest of our stay at the hospital,   times of leaving would get easier,  but they would never feel natural. I completely trusted the care that my child was receiving, but my mother's heart knew that right by Caleb's side was where I belonged. 

As the weeks continued,  word spread throughout our friends and acquaintances of Caleb's illness.  We began to receive calls and offers for help.  Friends came to visit, but it was difficult because only one visitor was allowed in the NICU at a time, and I did not want to leave Caleb's side to go to the lobby or cafeteria for a visit.  The most memorable help we received was a meal that a family brought down on Thanksgiving day.  It so touched me that my friend was willing to leave her out of town family and take time to bring us a home cooked Thanksgiving  meal.  This same friend also offered to do our laundry,  but I was too prideful to have someone washing my clothes.  Each weekend when I left my little boy to drive home and do laundry,  I wished that I had taken her up on the offer.  Another friend came down to the hospital on Christmas day and brought a gift for Caleb.  The holidays were such lonely times at the hospital,  and the selflessness of others who reached out to us during these seasons will always remain in my memory.

 Oftentimes people ask me how they can help others that are in the hospital. Although each families' needs are different, there are a few things that everyone could use:  gift cards to take out restaurants near the hospital,  money for parking or a parking pass,  little gifts of things they can do while in the hospital (magazines,  notepads,  games,  books,  a book of stamps and thank you cards,  snacks, ),  and homemade meals or cookies are always a treat.    If the family has a child that has been newly diagnosed,  don't plan on staying long, as they will want to return to their child.  But if they have been in the hospital for several months,  perhaps an afternoon away will be a welcome relief. 

Bob and I were very fortunate that Caleb was our firstborn.  For families that are juggling other children,  remaining at the hospital for extended stays is not possible.  In order to offer help to these families, I might recommend providing childcare for their other children so they can get up to the hospital.  These families will need all the more help with cleaning, laundry,  shopping,  cooking and normal homemaking tasks. 

Oftentimes,  as families enter into a crises like the birth of a sick child,  they will not have the knowledge of what all of their needs are.  Take the initiative,  and rather than saying ," Give me a call if you need anything," give them some choices of what you can provide and then follow through.    If you don't receive the proper thank you or appreciation,  do not take offense.  Their minds and hearts may be too consumed with grief to follow proper etiquette.   But know that the love and support that you share will help to strengthen and encourage the family.

The Diagnosis

As the tests began to come back and the idea of an infection in his blood was proven negative,  I began to realize that this would not be just a couple of days extension.  Sending out tests and getting back results can take weeks.  As I was quickly to learn,  hospitals do not run on my schedule.  On the weekends no testing occurs.  Holidays are out,  and in the midst of waiting for answers,  a large snow storm hit Cleveland.  Who would have thought that would have delayed everything,  but it did.  Even though it was only a few days,  it seemed like an eternity when all we wanted to do was bring our little boy home.

 Family began to come in town to visit and we all began to pray for Caleb's healing.  Here is where my faith in God became tricky.  For the only reason that I could imagine that Caleb would be born sick, was so that God could heal him, and show everyone how mighty He is.  I was willing to be part of that plan,  because how much time could it take God to heal him?  I didn't figure very long.   And then we would have an amazing story to tell.  Unfortunately, this wasn't God's plan. 

At the two week mark,  the doctor informed us that they had found a diagnosis for Caleb.  The news was not good, for with this diagnosis, Caleb would be on a ventilator 24 hours a day for the rest of his life.  We were heartbroken , but even as my heart cried out in grief,  my mind reminded me that I serve a big God, and  the miracle would just be that much more amazing. This struggle within myself, to live through the grief, but also hold onto my faith, would continue for the next 2 years. 

 At the time that we received the diagnosis,  the doctor  gave us the option of having Caleb disconnected from the ventilator and letting him peacefully pass away in his sleep. I was both shocked, that we had been offered this choice, and sickened by the thought of choosing to end my child's life. The fact that God was going to heal Caleb,  made the decision a mute point. Bob and I looked at each other and instantly made the decision to move forward with life and to implement whatever interventions would be necessary. 

Although we did not make the decision to have Caleb disconnected from the ventilator,  I am aware of families that have chosen that path.  At one time I may have passed judgement,  but no more.  For in choosing the path we did,  we committed to making sure Caleb's needs are met for the rest of our earthly lives.  We did not know the magnitude of this at the time,  but perhaps some families do and realize their own limitation. Or perhaps they feel removing medical interventions will be best for their child.  With all of the ways that doctors can save lives,  this decision is more and more placed into the hands of  families.  No mother or father wants to have to make the decision that will end the life of their child,  but I respect and honor each and every decision and the doctors that offer these choices.   Just 40 years ago,  these choices would not have had to be made because many or our children wouldn't have survived.  I am not saying that wouldn';t have brought its own horrible grief and pain,  but at least the parents wouldn't have felt the weight of having made that decision.  As medical advances continue,  this struggle between saving life at all costs and choosing when to let a child pass,  will continue.  If you ever have opportunity to walk through these choices with a family,  please extend support and grace,  because regardless of the path they choose, they will forever feel the weight of the decision they have made.