My husband and I noticed a magnificent sunset, on a weekend trip to New Orleans.  Coming through Alabama, we both were in awe. The colors were so intense that we reached for our camera.  And while we were trying to focus and capture every color, it made its way over the horizon before our eyes.  When I got home, I realized we had such a frenzied weekend that we did not take a single photo the entire trip, except for that sunset.

Joshua was our incredible sky.  He was a simple little gift that God used to get in our face, show us what  really had value in life, His tender mercies that are new every morning.  When I say “us” I mean everyone.  I mean friends, family, everyone on the beach with us, strangers on the street, all who came into contact with him. Joshua had so much to say for a little boy who could not speak.  He was always bursting with joy.  And we called him our sunshine boy.

He was our first child, born September 1, 1994.  Joshua means “God is salvation”.  Robert, his father’s name, means “overcomer”.  We felt this was truly appropriate given his circumstances.  He was born blue, and rushed to the nearest NICU hospital.  His heart was very abnormal and a condition called “aortic stenosis” needed to be repaired.  He had open-heart surgery at 2 weeks and was home in 3.  In the preceding weeks, we were told he had a genetic difference called Isodicentric 15, abbreviated idic(15) as well as the congenital heart disease.  This genetic disorder was rare and not much was known.  The geneticist did not give a positive prognosis for his future.  Idic(15) is a chromosome abnormality in which a child is born with extra genetic materials from chromosome 15.

We have noted many commonalities and now have a very supportive organization to turn to for support and encouragement.  IDEAS, an acronym for Isodicentric 15 Exchange, Advocacy and Support is a network of parents and professionals providing information and support to families of children and adults diagnosed with Isodicentric 15 or other abnormalities of Chromosome 15 (www.idic15.org).

Now, having 2 more boys, I realize how incredibly different and challenging it all must seem to those on the outside.  To us, it was just a normal day.  Joshie was our joy.  He began to laugh and smile and communicate with his eyes very early on.  I instantly became his advocate, his therapist, his dietician, his appointment manager, and his full-time mommy.

He had hypotonia ( low muscle tone), and required physical therapy, occupational therapy, and speech therapy.  He had hearing impairment, mild scoliosis, food allergies, a metabolism disorder, autistic symptoms, and was non-verbal.  The list of specialists was endless and appointments had to be prioritized, there were so many issues to confront.  His heart condition, which was not directly related to idic(15) had no apparent symptoms after his surgery.  Although his bi-annual exams never looked great, we were told he would not require surgery again until he was older and there were obvious symptoms.  Joshie never seemed to have a lot of energy.  He tired out easy and would ask to be carried.  But other than that, he was always eager to celebrate anything and everything in his life.

We had several years of therapies and walkers before he could walk.  It seemed that all we expected of him, he would accomplish in his own time.  His motor skills prevented him from speaking beyond a few sounds, and he expressed himself well with some signs and gestures.  His progress became slower as he aged, but he was always improving and overcoming in one area or another.  He was so eager to do more.  So we focused on our goals.  Every small accomplishment was such a reward for us all.  We had worked, he had worked, so hard to get there.

Having so many delays brought about a challenge for Joshua in almost every given situation.  What would seem like an obvious frustration, he would always innocently charge forth in complete faith.  That faith was just the most wondrous thing – for someone to have so much never-ending faith in us.  With our two sons now, we know as they grow, they will become more self-sufficient and independent.  Our goal will ultimately be to teach them to take care of themselves.  With Joshua, it was  bittersweet -  our sadness over his lack of development, mixed with incredible gratefulness, that he had been placed in our hands.  We were placed with the challenge to reach for our best, that potential down inside us, and show it for all its worth, because Joshua was counting on us to find it. I know now that I will never again feel needed so much in this life. To experience it for the years that we did, was immeasurable.

Aside from his many medical issues, one of Joshua’s symptoms was uncontrollable laughter.  This may be diagnosed as a stimming or perseverating behavior. We were never able to communicate with him to find out just what was so funny.  He would wake up at sometimes 4 or 5 in the morning and be screaming with laughter, having a party in his own bed.  We always said it was his own private joke between he and God.  But too much laughter, albeit uncommon, never seemed like a bad thing in our life.  He would eventually wander out of his bed and begin to dance with his shadows.  His little room of bugs and dragonflies was on the East side of our house and shadows cast everywhere just before dawn.  He loved this loyal waltzing partner. He would waltz his way in our room in the early hours, dancing and humming a tune of his own design, inviting us to wake up and join the party.  As tiring as it sometimes was to wake so early, we loved these simple moments and the comfort they brought.

He loved to greet people, shake hands, give hugs, everywhere that he went.   He wanted to be out greeting everyone.  He would seek out someone in the crowd, and look straight in their eyes, and reach for them like a long lost friend.  Of course, he could not speak their language, but he shared with them his own.  And his affection for them was too deep for words anyway.  He would beam at them with his smile, shake their hand, then wave at them as long as they remained in his view.  I always imagined that no matter what they encounter the rest of their day, he loved on them in a way they would not forget.

When he was eight, he was scheduled for a very serious heart surgery called the Ross-Konno Procedure.  We had been told that it was imminent.  His heart’s pressure gradients were bad.  Although we did not visually see symptoms, we were advised that we should not wait until his heart was weaker, or the surgery would not be possible.  So we confronted this hurdle as we did the first – with faith that God’s grace would see us through it.

The 5 hour surgery became a 20 hr surgery, as they found new complications with Joshua’s abnormal heart.   That is one of the most painful moments for any parent, to see their child hurting and reaching out to them.  He has always counted on us to make things better. This time we could do nothing but remain at his side, love him, and pray.   Having children can be one the most out-of-control experiences in life.  But even more, seeing that child hurt-You realize how powerless you are and how much you need God.

He did come home, and he was so glad. He was obviously still very pale and weak, and surviving on 4 different heart medications.  But they sent us home, and he did get back into his routine of enjoying life.  We had some good times at the beach, playing with his brothers in the yard, and bath time which he loved the most.

After a month, we were told his heart was just not improving as it should. We lost him in our van, on a Sunday morning. We had been told his heart had been climbing up stairs his entire little life.  The surgery was just too much for it to overcome, and it just needed to rest.

GRIEF-

Throughout the last year, I have passed thru several stages of the grief process, but it helped me so much to read about these stages from a book that was given to me called “A Grace Disguised”.  I remember for several months, I was not speaking to God.  I was not mad at him, and I definitely had a perspective of the bigger plan and how He works things for the good.  But I just did not have much to say.  I guess you could describe it as a numbness, from the pain.  It was too painful to talk to him and I did not know what to pray for anymore anyway.  I knew he loved me, and all I could do was just feel his love.  I did not have anything left over in me to be there for my husband or my 2 remaining boys, who needed me so. I was allowing myself to be consumed by my grief, for what I once had, even to the hurt of those that were still here to love me.

In the book by Mr. Sittser, he spoke of loss and how we live in a world where there is always loss of all kinds.  What he noted was that in this life, loss is actually a constant.  Many people are born into another country, another culture, and experience loss from the time they enter this world until they leave.  We are so blessed to be in this country.  We are so blessed with freedom, with families, with food, with health.  And then we are surprised when loss hits us.  Everyone has loss in their life at some time. We live in a fallen world!  What is NOT a constant, is how we let loss affect us.  That is our choice, just as good and evil are our choice.  Do we allow ourselves to be consumed by this circumstance, or do we get out of ourselves and find out how we can use this circumstance to benefit the Kingdom of God?  How can you use me Lord?

Joshua has passed away and yet he lives.  I am still the mother of a special needs child.  I have earned the PHD of experience, which has changed me forever.  He is still alive in us.  He lives on in us as we recognize the sanctity of this life and the profound impact that we can have on others, as we share the love of God.  He lives on in every tender mercy that we take the time to notice, or to share.  Our sunshine boy shines on.

My 7 year old, said, “ Mommy, when we get to heaven, I wonder what Josh will sound like now that he can talk!” We have the assuredness of knowing he is now dancing and talking and no longer bound by his earthly limitations, and we will look forward to seeing him again one day.

I did not realize what kind of storm we would sail through.  I still cannot tell you why.  I know there are wonderful, loving families out there that are going through all types of storms, and they feel helpless. Some of you may have lost your child before its birth, some maybe were able to hold your child for a few hours, or days or months.  And some of you are faced with an entire lifetime of caring for a severely disabled child.  And you have so many questions, and you feel so alone.

I do not have the answers.  But I do know this:  Although we were born into a world of imperfection, God is working all things for the good of His kingdom, for those who love Him and are called according to His purpose.  He does have the answers and  He is promising you His unconditional love and his guidance throughout your special journey.

“It is because of the Lord’s mercy and loving-kindness that we are not consumed, because his compassions fail not.  They are new every morning; great and abundant is Your stability and faithfulness.” Lam.3:22