Blessings in 2011

Well, in keeping with practicing my writing by blogging; I thought I would use our blog to write my first ever yearly update letter.


In January we were blessed by several pieces of accessibility equipment which were desperately needed by Gabriel.  First, we had ADA compliant ramps installed at the front and back doors.  Second, we traded in the Sedona Minivan for a Mazda 5 wagon.  In the Mazda 5, we put a full support car seat that can potential serve Gabriel until he weighs 120 pounds.  Third, we procured an accessibility van.  We can now safely transport Gabriel in his wheelchair or stroller.

Finally, three lift systems were installed in the house.  A fully portable system currently stands in the great room.  A semi-permanent track runs from the door of Gabriel's room to the window of the other side.  Finally, a permanent track runs from the door of the master bathroom into the shower.  The lift will allow family, friends, and caregivers to lift Gabriel and maneuver him as we meet his basic needs.

In March, Glen began Partners in Policymaking.  This program, which required Glen to travel to Raleigh, North Carolina one weekend out of each month, instructs parents of individuals with disabilities, self-advocates, and career advocates in skills necessary to effectively advocate for individuals with disabilities at the local, state, and federal levels.  Glen will complete the program in September.

In April, we traveled to Washington DC for the second stateside Aicardi-Goutieres Syndrome conference.  We learned that an international consortium has formed to continue research into the causes, pathology, and treatments for individuals with AGS.

In July, Emily marked her fifth anniversary working for Muzak, Inc.  Which recently emerged from Chapter 11 protection after being acquired by Mood, Inc.  Emily is now the most senior member of the Purchasing Department.  She continues to enjoy the challenges that the job brings.

In late July, we traveled to the foothills of North Carolina for our fourth Joni and Friends Family Retreat.  These retreats provide respite and care for individuals with disabilities and their families. We all had a great time, and Gabriel was the most responsive to his caregivers.  We even went up in a hot air balloon.

In August, a prayer was answered about which we have blogged before.  God brought to Calvary Church and our lives the Heloties.  Mark, Lucette, Daniel, AJ, and Lydia have quickly become dear friends.  AJ and Gabriel have developed a friendship about which authors write books.  AJ loves talking to Gabriel, and Gabriel shines with a large grin each time he hears AJ's voice.

October brought one of the greatest blessings given to us by others.  In Charlotte we have two radio personalities, Ace & TJ.  Years ago they started a non-profit, Grin Kids.  Each year they take around 21 children with disabilities, their entire immediate family, and one caregiver for the family to Walt Disney World Parks and Resorts.  This past October we traveled to Orlando with Emily's best friend Andrea all expense paid.  We enjoyed three full days in the parks.  With the exception of quite a bit of rain, we all had a great time!

After 26 months of extremely late nights, in December Abilene Christian University conferred on Glen the degree of Master of Education in Curriculum and Instruction.  With Gabriel as his inspiration and Emily as his encouragement, he completed the degree with a 4.0 average.  He is currently applying to have the degree added to his certifications for both North Carolina and South Carolina.  He is looking forward to the opportunities that his work in Partners for Policymaking and new degree with afford.

The year ends with Gabriel in a great place!  He is making great strides medically and developmentally.  With the exception of a seizure in November, we continue to enjoy a span of good health which has really lasted 18 months.  Gabriel continues to do well in school, and has started experiencing simple readers online.  We also experienced Gabriel first independent steps in his gait trainer in which he was able to propel himself 20 feet over a forty-five minute period.

So, God has richly blessed us this year.  We praise Him for the family and friends who are taking this journey with us.  We praise Him for a wonderful son who brings us great joy every day.

We wish everyone a Merry Christmas and may you be richly blessed in the New Year!

A Best Friend for Gabriel

I really don't want anyone to misunderstand what I am about to write.

There are many adults in our lives that love Gabriel a great deal.  Most of these friends pray for us on a regular basis.  Many of them have visited us at one time or another when Gabriel is in the hospital.  One couple keeps Gabriel over night every three months or so while Emily and I go away to our little "retreat."  So Gabriel and our entire family are surrounded by a myriad of  adults who love him, shower him with gifts, pray for him, and wish him well.

But it has long been a prayer of ours, especially Emily that God will bring Gabriel a friend.  That someone will come into Gabriel's life, overlook that Gabriel doesn't communicate in the same way as other boys and girls, and accept him exactly as he is.  A few weeks ago our prayers were answered.

A new family started attending Calvary recently.  AJ, started attending Gabriel's class.  As the story goes, on one particular Sunday the class was getting to be a bit rambunctious.  Because Gabriel is unable to physically get out of the way of any foot traffic, the class's teacher asked AJ to "protect" Gabriel.

Well, that was all the invitation AJ needed to befriend Gabriel.  Since that time, AJ has been Gabriel's most ardent supporter.  Recently, Gabriel has his second visible seizure while at church.  One of the pictures with this post is actually from an performance their class did in the sanctuary a mere minutes before the seizure.  To say that AJ was worried about Gabriel is an understatement.  His mother relayed to me that AJ was walking around the house asking his family to pray, pray, pray “that Gabriel’s brain would behave.”

AJ is Gabriel's greatest cheerleader.  I have been posting videos of Gabriel's first steps online.  This past Sunday AJ was very excited to personally congratulate Gabriel on his walking success.

We've experienced a great deal of blessings this year!  God has been truly gracious to us.  But, no blessing of the past year is as cherished as a best friend for Gabriel.

Thank you, AJ!  And thank You, Lord!

 Glen

God's Unexpected Blessings

Hi All!
Just when our lives seems the darkest, God arrives is a powerful way.  Please, let me explain.  Most readers will remember that our five year old son, Gabriel, has Aicardi-Goutieres Syndrome.  This genetic neurological condition has left him with severe cognitive and physical disabilities.  For at least the past 2 1/2 years we have been working on teaching him to walk in a supportive device called a gait trainer.


Well, Gabriel has not been able to do much therapy or school for the past ten days due to a respiratory infection.  The infection and the medicines to combat it have turned Gabriel's gentle disposition into that of a wolverine.  He has not be willing to sit without being held or sleep for more that 30 minutes at a time at night.  This has taken its toll on me (Glen).


I contemplated cancelling all of his appointments for another day.  As Wednesday turned into evening, Gabriel began to show signs that he was feeling better.  As a result, I decided to at least attempt all three of his appointment.  If I had to cut them short, I would have tried.  Unfortunately, Gabriel did not sleep well again last night.  So, I woke this morning discouraged, tired, and a bit angry.


I took him the first two appointments.  He tolerated the range of motion exercises without much complaint.  This encouraged me to take him to our community elementary school where he gets some physical therapy services when the weather does not allow us to take him out.  As wheeled him out of his van, I began to see a change in Gabriel's countenance. In the main hallway, I took him out of his stroller and put him in his gait trainer and attached all of the supports.


Well, almost before I could unpack my DSLR to start taking pictures, Gabriel began to take his first step.  Why is this remarkable?  Gabriel almost never initiates his first step without a cue.  But that would not be the most remarkable thing.  My mouth opened with astonishment as I watched Gabriel begin to push with his leading leg and move the gait trainer and himself forward two or three inches.  (I am beginning to cry as I remember this.)  Until today, Gabriel has never propelled the device forward.  His steps have always been in response to some moving the gait trainer forward.


Soon after Gabriel started walking, his school physical therapist came up.  I quickly motioned for her to remain silent and watch.  I watched as her mouth opened in astonishment.  For a total of forty-five minutes, we watched as Gabriel inched his way down the hall for a total of twenty feet!  Every few steps he would pause as if seeking our reassurance that he was doing exactly what we wanted of him.


Suddenly and quite unexpectedly, my gloomy week was transformed into a joyous occasion as I rushed home after the appointment to begin sending out the good news that Gabriel had taken his first self-initiated, propelling steps!


So, this is what it feels like to see one's child take his or her first steps!  Thank you Jesus!


Thanks for your prayers, kind words, and warm thoughts!

Glen Stephens

New Blog for the Stephens Family

Hi Everyone! When our son, Gabriel, was 2 1/2 years old; he went into the hospital for failure to thrive. He was in the hospital for twenty-four out of twenty-nine days. At that time, I (Glen) started to journal our experiences with Gabriel's needs in a blog. That former blog format worked very well for the past three years. As Gabriel grew, his condition improved, he started school, and we were afforded new opportunities; it became clear the former format would no longer meet our needs. So for all of you following us from the former blog, "Welcome!" For new followers, we hope in the posts to come you will learn about our wonderful family; and especially our terrific young son, Gabriel.