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.