Sunday, December 15, 2013

A Mother's Guilt

As we settled into a routine at home, therapists began calling to set up their initial
evaluations of Caleb. The occupational therapist was the first to arrive. After
introductions, she got right to work. She began her evaluation with a questionnaire
on the milestones that Caleb should have reached. The first few I was able to answer
“no” to without any problem, but by the time I had reached the bottom of the list,
unable to answer “yes” to even one thing, my heart had dropped. I proceeded to tell
her all of the progress he had made, but none of it was enough for her to be impressed.

Now one could say that the very reason she was in my house was because Caleb was
delayed, but as a first time mother I began to interpret the delays as somehow being
my fault. I showed her how I held him, laid him to play, sat him in his little seat.
Everything I showed her seemed to be wrong. She wanted Caleb lying on his tummy
more; she wanted him being put in an upright position more; she wanted him out
of his little seat that provided so much support. I understood the logic in what she
was saying, but had I done nothing right as a mother? I thought motherhood would
come naturally. I hadn’t expected there to be so many rules. When she left, I sat
on the kitchen floor with Caleb and cried. I began to feel another heavy weight of
responsibility. Now I knew, I didn't just need to care for Caleb, I needed to do it the
right way. I wished I didn’t know.

The therapist would be back in three days, so Caleb and I didn't have much time to get
to work and make some progress. I began by lying Caleb on his belly, but he didn't
like it and started to cry. The crying set off the vent alarms, causing him to breathe
against the vent and turn blue. I picked him up to comfort him, remembering to hold
him in a way that would force his neck muscles to work. He cried more. I tried to
stop using his little seat so much, but then where was I to put him?  I couldn't win. I began to feel an underlying guilt that no matter what I was doing, it was never quite right or quite good enough. This feeling continues to this day.

For any parent with a special needs child, so much of the child's development rests on
you. Oftentimes services don't get provided unless you advocate for your child. In
Caleb's case, it started with the therapy. Not only did we have exercises from the OT,
but soon Speech and Physical therapy became involved. Each therapist gave me a
list of exercises that were to be done several times a day. Snuggling Caleb, just to
enjoy time with him, became a thing of the past. Now every encounter was filled with
therapy recommendations and every spare minute was spent advocating for additional

Many of Caleb's needs have changed, but they still remain ever present. Caleb needs
structure in his days. He has a very hard time without a schedule. But although I
have tried, I cannot pull myself together enough to have a daily schedule. Caleb still
does not speak. How much of this is our fault? I don't know. We have tried over and
over again to implement methods to help him, but we can only carry it through for
a short period. He has recently begun using a new communication app on his iPad.
Once again we are trying to implement “talking” into our daily routines. But for how
long? A week or two until we don't see any progress and give up?

The difficulty is that with Caleb, and most special needs children, the progress is so
slow. What takes my other children ten tries to master, will take Caleb perhaps a
thousand. And there are no guarantees that he will ever be able to accomplish the
task. So oftentimes, after two or three hundred times, we become discouraged and
quit. But there is always the nagging feeling in the back of my mind that Caleb could
be doing more if we were more persistent.

I think all mothers live with a bit of the "never enough" guilt but perhaps this is
magnified with mothers of special needs children. I wish I had an antidote and could
provide it in this post, but I have not yet found one. I do know that if I could get
beyond this feeling, I would be able to enjoy my time with Caleb so much more.

I have recently begun learning about truly giving up control of the outcome of things
and resting in God's provision. Perhaps as I begin to allow myself to rest in His
sufficiency, I will learn that what I have to give is enough, even if the results I am
looking for never occur. And perhaps in the resting, I will come to a spot where
Caleb is also enough, just as he is, and I will begin to let go of all of the expectations
that hold me bondage in this grip of guilt.

Sunday, December 8, 2013

A Word On Advice

A word on advice: Don't give it. 

I will step on many toes here, but know that I have no individuals in mind as I write this.

The reason this post will hurt so much is because I believe that all of us, including me, have failed in this area. Even as I type, I cringe at the memory of the times when I have gotten this wrong. We are in this together, so please let me be blunt and honest without the fear of spreading unintended offense.

Soon after we came home with Caleb, the advice began to poor in. It took on many different forms, but it all felt the same to me, as though the person giving it wanted to fix the problem rather than enter into my sorrow and grief. I needed someone to share my broken dreams, my heartache and my despair - someone who I could be real with, not put on a show for, having to act as if everything would be all right. I needed someone who could open up her heart enough to shoulder a bit of my hurt. But I could do none of this when the only thing being offered was advice.

The advice came in many different forms:

There was the well meaning church goer who prayed for Caleb's healing and then felt that we needed to believe and act like he was healed. This approach left no room for grief or sadness or sorrow. Once the prayer was done, it was time to cheer up and start speaking and living in faith. I believe that prayers are crucial, but when offering prayers, especially for healing, please know that the family must continue to live in the present situation until a miracle occurs. Just as Jesus wanted his disciples to stay awake and be present with Him as he was facing His final hours, please be present with the family until a time comes that God changes the circumstances. Allow them to feel the sadness and to be real with you. Continue your prayers in private, but when with the family be fully present to their current needs.

Then there was the well informed individual who provided us with articles on different ways to fix the problems. Nowadays, with the Internet, there is no reason to ever provide a family with articles unless they have specifically requested them. Trust me, they are getting plenty of advice from doctors, nurses, therapists, social workers and other professionals. Most families will have researched and read more than they can ever comprehend on the area of sickness that their child is experiencing. If a family feels that you have information they would like, they will be sure to ask you. 

The natural and holistic friends also began to offer names of herbal remedies and holistic approaches. The challenge here is that many families have just been going through months of medical interventions. They have now lost hope that the medical community can help them and so they are willing to reach out to anyone who throws them a life line. The danger in this is that these kids have many different things going on with their bodies. Without proper guidance, adding herbal remedies into the mix of all of their medicines can quickly become dangerous. I do believe that there is a time and place for holistic eating and wellness. I believe that changing a child's diet can often times help. But trust me when I say, if you are knowledgeable in this area, your friends are aware of your expertise. Again, they will seek you out if this is a path that they would like to explore. When you continue to offer them these choices, it feels that unless they try this path, it is their own fault that their child is still living with this illness. Just as someone who lives a more natural and holistic lifestyle might not choose to try a certain medicine or surgery, so a family may not choose to seek out natural remedies. Please still support them and enter into their lives. Be caring and compassionate and truly respect their choices. 

There was also the optimistic person who stated, "Everything will be all right. Just wait and see." This advice first of all is so wrong. Oftentimes, these families will never see a healing this side of heaven. They have now entered into a completely new way of life that they did not ask for. Of course, there will be good times and they will eventually adjust to this new life, but to rush that along is cruel and heartless. Try to imagine what your life would look and feel like if you had just experienced what they are going through. Spend some time with those feelings of despair. And then come along side the family with no promises of a brighter tomorrow, but with the offer of a helping hand to hold along the way.

Once you have walked with your friend for a year or two and have earned the right to give advice, you will know when the time is right to speak and when your words will no longer be looked upon as a quick fix but as a healing balm that will bring comfort and relief.

Again, I share this truly out of love. We so often get this area wrong and our well meaning intentions bring hurt rather than healing. Please take my advice to heart and the next time a word of advice forms on your lips, close your mouth, reach out your hand, come along side and begin walking the path with your friend.

Sunday, December 1, 2013

Surviving the Pitfalls of Marriage Part 2

As we continue to look at the pitfalls that are present in marriages with special needs children, intimacy is another trouble spot.  After Caleb’s birth Bob and I looked at intimacy in a very different light.  I felt that enjoying myself during this crises was somehow a betrayal to Caleb.  Bob saw it as a way to remain strong and continue on, both as a husband and as a new parent of a child with so many needs.  Many years before Caleb was born, I had read an article about how the act of intimacy helps a man to feel connected to his wife during a crises.  Somehow, knowing this information helped me to understand where Bob was coming from and prevented me from misunderstanding his advances.   I can see how a wife, who has not been given this information, could struggle to overcome her feelings of betrayal, her weariness, or her distraction with all of the new demands in life, in order to meet the needs of her husband and the marriage.  This area requires great care and communication from both the husband and wife.  Misinterpretations can cause deep wounds that can create a wedge in the relationship, and once a rift is formed, neither the physical or emotional needs of either spouse will be met. If you and your spouse are unable to talk about these issues, than I suggest at least getting information so you can become enlightened to the needs of your spouse.  Hopefully by seeking help, you will be able to navigate this area without going under.

The constant need to make life altering decisions is another challenge in our marriage.  Though people might imagine otherwise, Bob and I still do not agree on many aspects of Caleb's care.  We have different views on what Caleb is capable of doing, what classes he should take at school, and what his needs are for various interventions. Though we don't always agree, we have learned to respect each others' viewpoints.  Practically speaking, because I attend most of Caleb's appointments and school meetings, much of the final decision making falls to me. It can be tempting to just have my way, but I value Bob's input and strive to honor both of us in the decisions I make. 

One of the hardest things about living with a special needs child is the deep feelings that we aren't able to speak.  Because end of life issues often arise with these children, they have to be addressed.  And who can admit that there are days or moments when we wish a different decision had been made.  After spending Caleb's 16th birthday at Chuck E Cheese, rather than celebrating his new driving abilities or anticipating college choices, Bob and I sat together and cried.  What was going to become of our child?  What had we gotten into?  Should we have made the decisions that we had made along the way?  The depths of these feelings are real and a sense of shame accompanies them.  The only person who can truly understand and relate to my thoughts is Bob.  I have realized, through both error and success, to allow our marriage to be a safe place for Bob and me to share our deepest fears and hurts; we have learned to never pass judgment or express shock at what the other has to share.  In this area of being vulnerable, we can be the closest of allies or the worst enemies.  The outcome rests in our response to each other.

Another area that continues to be a struggle for Bob and me is arranging a night away.  I truly believe that as a couple, we need to have a date night at least once a month, but in all honesty, there are times when two, three, or four months can pass before we get a nurse scheduled and a babysitter for the other children.  When this happens, I begin to feel disconnected and out of sync with Bob.  I interpret actions in a negative light and problems arise where no problems really exist. I need the time away to enjoy our friendship and to remember our relationship before children became a part of our lives.  I believe that couples often feel date night is a luxury that they don't have the time or resources to implement, but without time away, couples will begin to only connect on a practical level, losing the friendship and closeness that is needed to sustain a marriage for the long run.  If the time is not invested on this end, more often than not, couples will need to invest it on the other end, either in counseling or working through a divorce.  Please take the time and enjoy your spouse.

The above is certainly not an exhaustive list of the areas that a couple may struggle with, but it does reveal many pitfalls a marriage can experience. Without deliberate attention, these trouble spots can destroy a marriage. As I write this, I feel the weight this challenge brings, because couples living with a special needs child are already feeling stretched in too many ways. I know this post adds even more areas that need attention, but I believe that the marriage is the support that will hold the family together. Please take the time to keep your marriage strong because through the years you will cherish the bond that will form between you and your spouse. You will look back in amazement at the journey you have been on and will be forever grateful to have had someone by your side.

Monday, November 25, 2013

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.

Monday, November 18, 2013

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.   

Monday, November 11, 2013

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.

Monday, November 4, 2013

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.

Sunday, October 27, 2013

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.

Monday, October 21, 2013

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.

Monday, October 14, 2013

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.

Monday, October 7, 2013

The Day That Changed Everything

Although we had trouble conceiving,  the rest of the pregnancy progressed uneventful. At 37 weeks, Caleb was ready to make his arrival.  We had the nursery ready, my bags were packed, and we were so excited that we were going to be parents.  All ultrasounds revealed a healthy baby boy,  and so we had no expectations of what was to come.  I can remember sitting in Caleb's nursery,  imagining life with my little one.  One night,  I put my hands on my belly and thanked God for the little miracle that was growing within me.  Just as Hannah had done in the Bible,  I prayed and dedicated this child back to |God.  I felt both his conception and the fact that we had made it so far into the pregnancy was a miracle.  I prayed that God would use Caleb's life to bring Himself glory and that our family would be used to touch others.  Little did I know how God would answer this prayer.

As the contractions got stronger,  we headed off to the hospital.  Once we arrived and were admitted, things began to happen quickly.  I had chosen not to have an epidural,  not because I feel there is anything wrong with having one,   in fact I had an epidural with all 3 other pregnancies,  but because both of my sisters had gone natural and if they could do it,  I needed to prove that I could also do it.  Let's just say that my pride and my need to prove myself,  cost me a great deal of pain.  And for anyone that knows my family,  not one person cared whether I went natural or used all the medication they had to offer. The only positive to this course of action was that I never had to question whether my use of an epidural affected Caleb.  Just this past year I read an article where they were trying to show the correlation between epidural use and an increase in the rate of autism.  I was glad to dismiss that questionable cause in his diagnosis of autism.   

After much pain Caleb emerged a healthy baby boy with apgar scores of 9 and 9.   I held him and looked into his beautiful face.  As he began to fall asleep,  I handed him back to Bob.  Within a moment,  the course of our life would be changed forever.  The nurses noticed that he wasn't looking so well and as they whisked him away, our room filled with specialists.  Soon after,  he was  taken to the neonatal intensive care unit(NICU).  One would think that at this moment I would be in a panic,  but I truly thought it was just a little glitch in the newborn plan.  So I got cleaned up,  ate lunch,  and continued to wait.  When the doctor came in to talk with us,  he said that they were suspecting a blood infection,  which a few days of antibiotics would clear up.  Although I wasn't thrilled with this change in plans,   a few days delay in bringing our little one home wouldn't be too bad. They wheeled me down to the NICU to see Caleb and before I was even allowed in the doors,  I had to scrub my hands and arms.  To this day I cannot walk into a hospital and not feel  a tightness in my stomach at the smell of the special soap they use. Once the hand washing routine was complete,  I was allowed to enter the NICU.  I wasn't prepared for what I would see.  My little baby, that was lying in my arms so peacefully just a few hours ago,  now lay on a bed hooked up to numerous wires with a  tube down his throat that was breathing for him.  It broke my heart.  We sat next to his little bed and didn't even feel comfortable stroking his hand without permission.  Thankfully there was a nurse on staff who saw our hesitancy and encouraged us to touch him.  But picking him up and holding him would have to wait for another time.  I sat next to his bed in disbelief.  How does one begin to process life when everything that you had planned begins to change.   For me , I turned to my faith.  I truly believed that God had a plan for this little boy,  and so I began to figure out what that plan was.  I suppose you could say that this helped to carry me through the next two months, but in the long run,  this became a stumbling block.  The Bible tells us ," Many are the plans in a person's heart,  but it is the Lord's purpose that prevails",  Proverbs 19:21.  It is a very good thing that our future is not revealed to us.  If it had been,  I never would have had the strength to make it through the day.


Monday, September 30, 2013

The Road to Becoming a Mom

My journey into motherhood began 18 years ago.  Bob and I had become friends at college and married soon after. Because I wanted to utilize my degree in social work,  I chose to work for several years before we began having children.  I had no reason to suspect that I would have troubles conceiving , and yet , that is what happened. 

The first few months, after we decided that it was time to begin our family, were exciting times, as we imagined the possibilities of being pregnant and having a little one.  But after six months of trying, the excitement wore off and things became a little more scheduled and stressful.  Of course the doctors would not intervene until we had been trying for a full year,  but this did not stop me from reading every book I could get my hands on and implementing the temperature chart, and the proper positions, and all the other fun things that the books said would help our chances of conceiving. ( My heart goes out to all couples who walk this road for years on end.  I can only imagine how difficult this would be).  The months began to revolve around my cycle.  For two weeks we would be filled with hope and anticipation,  only to have that all come crashing down when my cycle began..  But then, two weeks later, we would need to begin trying again.  And that meant that all systems had to be go on the exact date and time.  And, just in case we were off a little,  I would want to take all precautions and try a day before and after.  So,  needless to say,  all passion was gone and now it was a mission that was to be accomplished.  This added  such emotional stress to both the marriage and to myself.  And then to have others tell me to "just relax".  Of course the advise was accurate,  but almost impossible to do,  and adding the knowledge of what I should be doing only heightened the anxiety that I wasn't doing it.  After a year of this roller coaster ride ,  I visited the doctor and was told that my hormones were off.  We were started on a regimen of clomid, with three months at one dose, documenting all temperature fluctuations.  After 3 months,  the dose was increased and two months later we had conceived.  Not only were we excited to be having a baby,  I think we were both relieved to be done with the trying.  Now our lives could become "normal" again.

I share all of this, not because I am an expert on infertility,  for I realize that for many women,  a year and a half is nothing.  But I tell this part of my story because I believe that it impacts my determination later on, to fight with all I have to save this child.  I did not know if we would be able to conceive again and we had worked too hard to get to this spot.

Two months into the pregnancy,  I began to spot.  It wasn't tons but it was enough to put fear in my heart.  A trip to the doctors again revealed that my hormone levels were off and I was started on progesterone.  This stopped the bleeding, and I continued this regimen for several weeks.  Again,  I share this detail, because when our child was  born with special needs,  as a mother, I went back to see if anything I did could have caused the trouble.  Many years later,  we were told that the mutation that caused Caleb's breathing problems occurred at 5 weeks gestation.  I do not question whether the progesterone caused the problem,  I just wonder if nature was trying to take its course and we circumvented the process.   I wouldn't change what I did,  but again,  once I was pregnant, I would do anything to hold onto that little one inside of me.  I am no longer going to be pregnant, but, after much soul searching,  I believe I would make the same choice today. 

Wednesday, September 25, 2013

The Journey Begins

For years now people have been telling me that I need to share my story. I didn't ask to have a story, but life happens, and along with it came my story. So, 17 years into this journey of motherhood, I finally have decided that I will begin to write about the adventure that I call life. My preference is to sit with a friend, over lunch, and share our stories that way, but many people that are experiencing the life that I have lived are not able to meet for lunch. They are too busy caring for their child in a hospital, or advocating for their child in order to get the services they need. Or they are just too worn out and exhausted by the demands that life has given them. So, I will begin my blogging career with an invitation to all of those mothers out there, who need a shoulder to cry on, an older woman to seek advise from, or someone to listen to their worries and fears. I will share my story, along with the joys and sorrows I have faced. I will be honest, though at times it will hurt, and I will paint a true picture of life in our home. I do not do this for sympathy or accolades, but to help others know that they are not alone. There are many of us on this journey, and if I am able to bring encouragement and help along the way, then I am greatful for the time I have spent on this road.