My Grandlove

This is our journey.  Starts with an earthbound angel and ends on the first day of Advent, when he got his angel wings and entered Heaven to experience the childhood that Leukodystrophy stole from him.

Holding Stephen as he slept was one of my favorite things to do.  He would rest so peacefully and my arms never grew tired of holding him.  He did love his binky.

He loved his Papa Steve and boy did Papa Steve love him right back.  While he could still hold his head up, the shoulder gave him a great view of the world.  Sleeping or checking out the world was always better with Papa Steve.

When he rode his first merry go round, we knew that he loved it.  The music, the motion and the bright lights were fascinating to him.

Amelia had him Christened when he was seventeen months old.  Merisue and her husband Calvin became his God parents.  No one realized that the journey was about to become so different from anyone's expectations.  We couldn't have traveled this journey without these fine people.




Playing was a great past time for this little curly-headed boy.  He loved his toys and his books.  This is when we started noticing that he would fall down a lot. 

Took him to the doctor and it was decided that ear tubes would help him with his balance.  Surgery was successful, but the falling down continued.

Following the advice of Early Childhood Intervention, an MRI was done and the results came back during March 2011.  When we sat and waited for the doctor to explain what the results meant, my heart sank and I knew that our life had just changed in ways that we could never imagine.

 This is how old our little guy was when we heard the news that changed our lives forever.











Along the way, we were helped by some amazing people who heard our story and wanted to celebrate our life.  Belinda Higgins from Higgins Photography, arranged a couple of photo shoots, so that we could have physical memories of our precious boy.  She captured his angelic look and then she invited us back for a shoot with Santa.  By this time, Stephen could no longer hold his head or body up, but the fascination of Santa gave him a boost of energy and he checked out the big guy in red.  This was the last picture we would have with Santa.
 

 

 

 Between the Angel shoot and the Santa shoot, eating was becoming too difficult for Stephen, so he had to have a feeding tube placed.  In this picture, his momma and he tried to catch some rest in between nurses' visits and medication.  Feeding Stephen with the feeding tube saved him calories that were used by drinking and eating by mouth.  We had many times of learning what not to do and a few times of pure panic when his stoma gave us heck.  We became experts after awhile on how to feed, clean equipment and everything we didn't know before this.  In fact, we were amazed that more hospitals weren't ready for feeding tube children.

 Stephen handled the feedings well, but boy did he miss his eating and drinking.  For awhile he could still have ice cream (Red Velvet was his favorite), but then even that was a choking hazard.  We pretended that he was drinking coffee with us in the mornings, because he loved the smell and taste.  (A drop on the lips would bring a smile to his face.  But eventually that drop was even stopped.)

Throughout all this time, we made sure that Stephen's world was as happy and pain free as possible.  Medications and therapy helped him with his spasticity and pain.  He loved going to therapy (when he felt well) and the "ladies" all fell in love with him and his endearing spirit.

 When we met, Jamie from JME Portraits, we fell in love with each other.  She saw our little guy's wonderful spirit and captured it in pictures featuring her own children.  What a wonderful gift this was for us. Then when his little brother arrived, Jamie took priceless pictures of the two beautiful boys.

 Throughout the days, we found things to amuse Stephen and the amusement came from unusual places.  Like who would have thought that hippos would be so intriguing.  Well, Stephen loved his hippo and when we sang, "I want a hippopotamus for Christmas" his face lit up.  That song brought a smile throughout the years.  In fact at his memorial/visitation the song was the last song played after the rosary.  Got half of the people singing and the other half wondering, "What the heck?"

Trips were taken.  Make a Wish provided a dream vacation, including EVERYTHING you could imagine.  Hospice of South Texas's social worker arranged a behind the scenes trip to Sea World and it was unbelievable.  Stephen was held by "his Nathan" and they looked into the great blue yonder.  In September, Project Angel Fares reached out and we all got to go to San Antonio to stay at an unbelievable resort and then enjoy Morgan's Wonderland.  Memories of that time are held close in our hearts and brings smiles to our faces.

 

 
 
 
 
 
 

 

 The days turned into months and then the week of Thanksgiving arrived.  Early Monday morning, Stephen started to show signs that his little body was tired and he needed to rest.  The Hospice of South Texas nurse came out during the night and helped him get comfortable.  During the day, his nurse, Tammi and his doctor, Dr. Meyer came to see him.  We had discussed that one of these times, he wouldn't be able to recover from his "setback."

 By the afternoon, he had more energy and was more awake.  What we loved about our Hospice friends is that they were honest, when we asked them questions.  I asked Tammi, "Is this a rally or a comeback?"  Her reply was, "I am going to stay positively optimistic, but I am afraid it's a rally."

 I was at home that evening and packed a bag to go back to stay with the family.  Stephen wasn't doing well, and as each hour passed, we realized that he was holding on, because we loved him so much.  As the days passed, I don't remember what we ate, when we bathed, who was with us or what we talked about.  I do know that Hospice of South Texas people put their families on the back burner and took care of us that entire week.  We held a vigil and we made sure that Stephen was held, comforted and loved on during this time, just like he was for his previous four and half years.  Medication, oxygen and comforting touch kept pain as far away as possible, but there were times that his pain was stronger than any human concoctions.  His nurse, Tammi and his Dr. Meyer worked tirelessly to make sure that whatever he needed they would provide.  The pharmacist came back from a family gathering, so that Stephen's pain could be managed.  Hours ticked by, people came and went and days became night and then daylight would come.  On Thanksgiving, Stephen was stable enough that the nurses and doctor went home for awhile and Amelia laid on the couch with her precious boy for a comforting time. 

















The vigil continued with our presumed "deadlines" unmet.  We tried to figure out why Stephen was fighting so hard and then we realized that we had always taught him to never give up.  Sleep for us was grabbed as we could and on Saturday night, I got up after a couple of hours and went into the kitchen and said, "I need to hold him.  I need to hold him."  Sweet Nathan was in the rocking chair and he very graciously handed my sweet boy to me.  After the house was quieted down, Stephen's volunteer, Susan, sat next to me and we visited.  Coffee and cake was shared as we talked about nonsense.  At a little after three, I said, "That's different," indicating Stephen's breathing.  He took a sweet breath, Susan went and woke everyone up and after two more breaths, Stephen had a soft smile on his face.  We all hugged, kissed him and told him how proud we were of him and how much we love him.  Hospice was called and the nurse came to pronounce his passing.  By then his God parents had come back, along with his Papa Steve and all his hospice angels.  We sat around and talked about our favorite times with Stephen and celebrated the sweet, little guy.  Finally, the funeral home lady came and we walked our boy out to his stretcher.  He had a pillow and blanket and she was kind enough not to cover his face before she rolled the stretcher into the vehicle. 

Later that day we went to the funeral home and made his final arrangements.  The funeral home people were outstanding.  Our little boy was treated with the dignity and respect that he deserved.  We held a visitation and rosary with over two hundred people in attendance.  He touched so many people in his short life, that it takes my breath away, sometimes.  He was the joy of our life and he resides in our hearts to this day.

 

Hospice: Not what you think it means!

 

 
 

HOSPICE:  Not what you think it means!

For over two years now, we have been living with the reality that our sweet, precious little boy will not live long enough to get his second set of teeth; double digit birthday cakes; or even kindergarten pictures.  In late Spring we will celebrate his fourth birthday and everyday the realization that he is declining is slapping us in the face.  You see, when the diagnosis of Leukodystrophy is given to the family, since all the family is affected, you reset your priorities. Comfort, smiles, laughter and downright silliness are the things that we pack in the day.  We know more about medications and comfort measures, than first year med students.  There is an unspoken routine that is followed by everyone involved in his care.  The complexity of Stephen's care is not unique for other Leukodystrophy families, but we are one of the exclusive club that watches milestones slip away and in their place come feeding tubes, communication systems, constant monitoring of respiratory and digestive systems, as well as the normal daily care of a toddler who depends on someone for everything.  Anyone can wonder how we manage and that is the purpose of this article.  I would like to point out that NO ONE could be on this journey alone.  Without intelligent, compassionate support, Stephen would have already earned his Angel wings.  That intelligent, compassionate support for our family is Hospice of South Texas. 

Hospice of South Texas has been taking care of our whole family since last fall.  The day that my daughter concluded that school was too energy draining for Stephen, was the day that she enrolled him in the Hospice of South Texas program.  We had believed that a person had to have only a short time to live, in order to receive services, but we were wrong.  The law has changed to include pediatric patients without any time constraints.  (Even though I had been trained as a volunteer years ago, this fact was something I wasn't familiar with, because after all, who wants to think of pediatric hospice services? )

Admittedly, in the beginning we cried a lot, because the mortality of the disease is quite breath-taking.  We were also a bit overwhelmed with all the "new" people in our lives.  It was difficult to keep everyone's names straight, and jokes were made about certain people, like, "Oh, yeah, that's the nurse we like," when in fact, we absolutely adored all the nurses.  All the nurses are unique in their own ways, with a very important factor that ran through each caregiver; each one kept our family's best interest in the forefront of their hearts.  We have always wanted Stephen to have as much comfort and laughter that is possible. 

Some situations have called for house calls from the doctor and medication was adjusted.  These were very scary times, because the little guy seemed to be so miserable and slipping away in leaps and bounds.  No heroic measures were done, just a tweak of medication, more respiratory activity (nebulizer and chest repercussions) brought back happy days for Stephen.

Since Hospice of South Texas has been in our lives, other life events have added stressors to our already complex situation and our support staff have stepped up to the new challenges laid before us.  My Heart (daughter) and her husband wanted to have a baby in their marriage, and everything was wonderful during the pregnancy.  We found out that there would be another little boy in the household and we breathed a sigh of relief, since "we know how to handle boys."  Everything went along as planned until the actual day of delivery.  When my precious, brave daughter was in labor upstairs in the hospital, I was downstairs getting a biopsy of a tumor in my breast.  Before our new little guy was home from the hospital, I received the diagnosis of breast cancer. 

Breast cancer, which has been attacked through surgery, chemo and medication, will not define me, but let me tell you, it has surely knocked the wind out of my ole sails.  In this part of the journey our Hospice support staff have gathered even tighter around us to make sure that we get what we need to have quality of life.  Food has been brought, rides to the doctors have been given, hugs have been shared, shoulders to cry on have been offered, jokes have been exchanged and the many burdens have been shouldered by our friends at Hospice of South Texas.  Rocking new babies, holding Stephen, picking him up and entertaining him are "chores" that I have learned to share with these marvelous people, because when I am not able, these boys deserve to have their needs attended to with the love and devotion, that is the hallmark of Hospice of South Texas. 

Training a husband: Silk is better than Steel

When I married, I wasn't any spring chicken, so I did know a thing or two about the male species. With that being said, I've learned exactly how much I didn't know about the male species through my interactions with my husband of more than thirty years.

Let's start with the simple idea of expiration dates on milk. I remember clearly, waiting in the car and looking at the huge smile on my husband's face as he handed me the gallon of newly purchased milk, "I really had to look hard, but I finally found today's date!" I thought he was joking, until I read that indeed today's date was stamped on the milk jug.

Taking a deep breath, I calmly explained that even though I appreciated the effort of reading all the dates and finally snapping up the last of "today's date" he would need to go back in and find a date far into the future. I was afraid at this point to tell him to find a date far away from today's date, because I surely didn't want last week's expiration date on our milk. He did huff and puff, but finally he took the jug back into the store and slumped back, wordlessly handing me the milk. To this day, he finds the best date in all the dairy case.

Back when we first married, ice was made in metal trays in our refrigerator's freezer. I suppose that there was a manly rule somewhere that stated that the person who took the last cube was responsible for replenishing the liquid to the tray. I don't know, although I did ask. Aggravation met me many times when I wanted a glass full of ice and there were only two cubes left (one from each of the trays in the freezer.) It got to the point that I began to learn to drink lukewarm sodas and water, until I came up with a brilliant solution. When he wasn't looking I loaded up the freezer with ten ice cube trays, so that at least I would have ten ice cubes, if needed. Many the times I found out the filling all ten trays was an act requiring balance and the ability to hold open the refrigerator's door with my knee, because the freezer door was spring loaded. Finally, a few years ago, we were able to purchase the appliance of my dreams....a refrigerator with an ice maker. No more warm drinks and glares in my husband's directions have decreased remarkably.

We were blessed with my mother for transportation of our daughter from school, except for rare cases when she couldn't because of doctors' appointments. My husband assured me that it wasn't a problem, as his office was only a few blocks from our daughter's school. Armed with sticky notes and verbal reminders, my husband gallantly took up the duty of picking up our girl from school. Luckily, our daughter learned to be calm and not panic, even when she was left standing outside waiting for her dad.
A call to his office, "Dad, how are you?"
"Fine, Hon."
"Dad, how was your day?"
"Okay, what about yours?"
"My day was fine, Dad. Hey, Dad, did you forget anything today?"
A pregnant pause and then, "Nope, don't think so, Hon. Why?"
"You forgot to pick me up at school, I'm still here."
A very pregnant pause, "I'll be right there." He was there in five minutes and she forgave her dad.

Two days later and I won't repeat the above dialogue, as it was basically the same, except, she added, "Again!" to her last statement. So, we all learned an important lesson that week, in spite of adoring someone to the ends of the Earth, you can forget to pick them up from school.

What other lessons have I learned these last thirty some years with the man I love? I know that in spite of all of MY faults (I do have many) he loves me and would do anything to see me smile. He is my closest friend and confidant and the best milk buyer in the world.