Monday, January 6, 2014

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.

Tuesday, December 17, 2013

The Perfect Present

This time of the year is a very busy time for many people.  Stores are crowded, music is playing and cash registers are ringing with the sounds of the season.  There is so much emphasis on finding just the right present for those we love.  Many items are considered until that one special present is selected.  This Christmas Season I have slowed down my hustling and bustling and remember that the most perfect present I have ever received was time with my Grandlove.  This picture was one of many times that I stopped what I was doing to cuddle with Stephen as he ate his meal.  He could cuddle and the world became so focused for me.  He would grab at me and close his beautiful eyes as he napped in my arms.  I knew that each time I held him it was one of the pre-determined times we had left. 

When he was born I listened in the hall and heard what I thought was odd for the early morning hours in the hospital, it sounded like a kitten.  That wasn't a kitten's soft cry, that was my brand new grandson announcing his arrival.  He was a wrinkly mess of love, even then.  Cuddling was our special time together throughout the years.  He slept the most soundly when he was in my arms.  Spoiled?  Naw, just good grandparenting.

Fast forward through many obstacles to a few weeks ago, Thanksgiving week.  He was approaching his angel wings and we all took turns holding, comforting him.  On December 1st, I said that I needed to hold him.  My son-in-law (Stephen's Nathan) gave over the rocking chair and his sweet boy.  Stephen's hospice volunteer and I cleared the living room of all distractions and the house settled down peacefully.  The hours passed with us talking about nonsense, eating cake and drinking tea, until a little after three there was a marked change in Stephen's breathing.  I said, "That's different," as he took a sweet, deep breath.  Susan ran to get Stephen's mom, dad and his Nathan up.  Stephen took two more sweet, deep breaths and then a soft smile was on his lips.  We all kissed him and told him how much we love him, but it was time to run with his friends and fly free of all his pain and suffering. (He had been looking at the angels all week and we knew that he would join them when he was ready.) 

I will never forget that moment that I watched him take his last breath and smile at the glorious angels who had come for him. 

That moment, that is my perfect present.  Can't buy it in the store, can't order it off the internet, can't duplicate it, 'cause it's imprinted on my heart forever.

Sunday, May 5, 2013

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. 

Friday, January 18, 2013

No Way Could I Balance Without Help

Since I started this journey with the Grandlove and his Leukodystrophy, I have learned that it's okay to lean on others when the my world gets a little shaky.  My mom raised me to be independent, but let me tell you, without others I would have literally crashed many times.  I don't always need a hand, but when I do, I can reach down and one will be there to steady me and mine.   What is even more incredible is that sometimes I don't even know that I am on shaky territory as soon as those in my life realize that I need a bit of assistance.  No one can take away my fears, sadness or anger, but they can make sure that those feelings do not become the focus of my life.  Keeping me in balance can be a very tiring responsibility. so I am thankful that that duty is shared by many.  My family, friends, hospice workers, and facebook friends all supply me with the stability that Leukodystrophy tries to shake loose.  Thank you for all the care and support I receive.  Without you all, this would be an impossible journey, especially on the unicycle that all Leukodystrophy families ride.

Thursday, December 13, 2012

A Special GPS is Needed for this Journey

As the weeks of this pregnancy pass, I try to wrap my head around the fact that this child is healthy and will NOT suffer as my Grandlove has.  He will meet and KEEP all of his milestones.  He will run circles around me, while babbling toddler words and capturing my heart and soul.  When he has the regular childhood bumps and spills, my heart won't stop and my breathing will continue its regular pace.  Doctors' appointments will be few and far in between and only for the "regular" little people stuff.  Clothes will be outgrown; shoes' soles will be worn out; toes will poke out of ends of socks from running around barefoot outside; food will be thrown from the highchair or painted on chubby cheeks with curious fingers; t-shirts will become so soiled from the multitude of staining items, that even using them as dust rags isn't an option; toys will find tender feet, because they are left out after a play date; crust less peanut butter sandwiches will be eaten on a daily basis; T-ball games will be attended, in spite of the hot weather; report cards will be displayed proudly on the fridge, along with drawings; and stinky boy smells will become daily perfume that will bring a smile to my reluctant soul.  When I think of how different this little person will be, I honestly can't even begin to grasp the reality that will be mine in just a few months.  Hang on with me and we will see what lessons this new journey teaches me.

Tuesday, December 11, 2012

GRANDLOVES aren't for Wimps

This picture of my sweet, precious, Grandlove and his future brother (with his mom, of course) was provided by a very wonderful person.  Jamie took many hours and many photos during this sunny day to capture the best of all of us.  She does this for families with children who are fighting for every day of their lives.  That few hours was filled with laughter, no medication, no tears and for that we are forever grateful.  Thank you, JME Portraits of Cypress, Texas.  You and your family are part of ours, now.
I wanted to use this picture for my blog, because this blog is about our future, one with a little boy who will be unlike his big brother, my Grandlove.  The past few years I have adjusted how I "grandmother" to the point that thinking about a grandson, who is different from the Grandlove, scares the beejeeus out of me. 
I know how to do feeding tubes; around the clock medication; pediatric hospital stays; botox injections for spasticity; physical therapy, occupational therapy; speech therapy, wheelchairs; specialized car seats; AFOs; wrist splints; communication switches; IEPs; ARDs; and Hospice of South Texas.  Each item listed has become ingrained in my everyday "brain" and has become second nature to me.  It's nothing to deal with a runaway feeding tube (unaware that it's unhooked) or juggling the appointments that fill my calendar.  The trade off is that our daily routine has given me a false sense that I can handle a three year old.  Only when we are out and about and I see other little guys running about causing normal little boy chaos that I realize that I don't know how to grandmother that type of boy.  How do I answer all the "Why?" questions that little boys gleefully throw back at adults?  How do I keep a little boy safe, while he explores all the places in his world that aren't meant for little boys, but little fingers always find?  How do I keep up with the energy of a little boy who only has two speeds, fast and asleep? 
 Don't misunderstand, I pray everyday that our new addition will be able to do all the things that little boys are suppose to do, and right on schedule and keep on doing everything "perfect" throughout his whole life.  His big brother is the sweetest, most precious little guy in our life, so we are hoping that the sweetness will be a brotherly trait.  If by a slim chance I ever need them, I've already been practicing my lines to this little rascal, once he finds his own voice and spirit.  IF he ever decides to try to talk "smart" to me, I will simply remind him, "Your big brother NEVER talked back to me."  In fact that line can work for many situations of being naughty. 
Just in case all that doesn't work out, I have already called dibs on my Grandlove.  He fits just fine in my heart and on my shoulder.

Wednesday, October 24, 2012

Our Angels Here on Earth: Hospice workers

There was a day, a couple of months ago, when a very difficult decision was made concerning my Grandlove.  My Heart had researched what services could be provided for her little boy by our local non-profit Hospice.  Meeting with the pediatric nurse and discussing the monster, Leukodystrophy, brought out many feelings that we put aside during our day-to-day activities.  To keep his days as stress-free as possible, we try to provide a positive environment, thus we don't address "what he used to do" and "what he won't be able to do" very often.  It's not that we don't realize that our time with this sweet, little boy is very limited; it's just that we don't want to focus on the sadness.  Our nurse listened with her heart and gave us her strength to get through that meeting.
During that initial intake meeting, his school called that he was sick.  So not only was my Heart starting Hospice for her son, but she decided that school was just too much for his energy level.  We finished the meeting with the wonderful nurse and then picked up our little guy from the school.  Grieving happened in the day; grief for not being able to have the "normal" experience of school and grief for the fact that Hospice was necessary in his little life.  That hit me very hard and I didn't know how I would handle Hospice coming by to provide services to Grandlove and us.
Well, my misgivings were very quickly dissolved when the first visit occurred.  In the door two wonderful souls came wrapped in the bodies of two nurses that would provide relief to this tired family.  Medication has always been a major "headache" for us because of the complexity of the prescriptions.  No more would we have to stand in the lines, wait for the compounding, keep track of the interactions or any other unlimited stressors we have endured.  Hospice nurses call in the prescriptions and the pharmacy delivers the medicine to the front door.  Sounds like a minor thing, but anything that could take a burden away from us was a welcomed relief. 
Relief from the craziness of local pharmacies that don't "get" what is needed for our little guy, is a very appreciated gift from Hospice.
We discussed all of our medical decisions with the Hospice workers (nurses, doctor and social workers) to make sure that the preventative procedures we wanted, could be done.  What a relief to know that things like flu shots, physical therapy, speech therapy, occupational therapy and botox injections could be administered, because we are all in the fight for quality life for our little one.  Amazingly, when the Grandlove gets hit hard by respiratory situations, the nurse comes out, no matter what time they are called.  No more ER visits; no more exposure to everything in hospital waiting rooms; no more having to "teach" medical personnel about Leukodystrophy; and no more questioning the care that was given at the ER. 
Freedom from worry, is a wonderful gift that we have received from Hospice.
During the visits from the nurses, volunteers, social worker, and doctor we find that these people are focused on the whole family's needs.  We laugh much more than we cry, because of Hospice.  They are here for us for anything that we need to make the Grandlove's life richer, more comfortable and as pain-free as possible.  I don't know about all Hospice situations, but I tell you Hospice of South Texas workers have taken so much stress from our lives.  No they can't cure our sweet boy, but they can do so many wonderful things in our lives.  If they could take our heartache away, I know they would, but since that is impossible, then they have joined us on our journey. 
Hospice has joined with us and we will never be alone, no matter how scary this whole process can get.  Our Angels, our Hospice workers wrap up our breaking hearts with their wings and let us know that they are with us.