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.

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.