Tag Archives: developmental challenges

Let me tell you about my son – A guest post

BigGuy turns 12 this week.  Eleven years ago–just shy of turning one year old–he looked into my eyes for the first time.  That’s right: one year old.  We were already 4 months into “global developmental delay” hell.  He had been flagged with possible mild cerebral palsy and deafness–the latter quickly (presumably) ruled out with a test that showed his eardrum to be working, but couldn’t tell us if the messages between the eardrum and the brain were being relayed and interpreted properly if at all.

Eleven years ago we were roughly two weeks into removing the trace amounts of dairy that existed in our diet (I was still nursing) and rushing back to the immunologist that diagnosed his immune deficiency just a month before.  I wanted him to see my son–to see if I was just hoping to see something that didn’t exist or if an objective eye could say that there was change.  In fact, there was change; and the immunologist confirmed that the dairy could be the culprit.

BigGuy has presented us with challenges since conception and we spent a lot of years swamped in various developmental therapies, research, interventions–not being a family, but being a therapeutic unit for this small child who has come so far.  IT. WAS. HARD.

It was overwhelming.

It was exhausting.

At times, it was very, very scary–because we weren’t sure if he’d ever live independently (which actually didn’t occur to us until a round of tests at age 3).

So often we parents of special needs children come to live a life that inadvertently becomes defined by our children’s problems.  Life becomes a series of therapies and nights of research or online support groups.  It’s not intentional or malicious–it’s just how it happens.  We never know the delight of the moment because we are plotting the future… what else can we do?  Who can we see?  What can we give them to help?  Who on EARTH can care for them if and when something happens to me (and my spouse)?  Will they ever live independently?  It’s an organic process for sure.  But it’s not a positive one.

“Let me tell you what my son’s challenges have done for me…”

That is an excerpt from the guest post I did called “Let Me Tell You About My Son” over at my friend’s blog, “Unveiled and Revealed“.  She has dedicated the month to “Parenthood Perspectives” with each week dedicated to a very different parent experience.  I hope you will find beauty in the journey.  ❤

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Five Not-so-cliché Thanks for #FridayFive

When I taught Sunday school to teenagers, I used to tell them that I felt badly for them:  they had to live an honest, respectful life of service for a blessing they had to trust would come at the end.  For myself, I lived an honest, respectful life of service for that which I had already been given.  I meant it twenty years ago and I mean it all the more now.  I live my life in gratitude for what I have been given.  This week’s #FridayFive is a look at thanksgiving in all circumstances.  Some of my headings may look common or cliché but if you read on, you see that my reasons are not.

Years upon years upon years of therapy

Twenty eight and counting to be precise.  Inasmuch as it started with a backwards intent, I am thankful to have had enough years of counseling to make me a functional human being after living a life that started with my first conscious memory being a trauma incident (and with many more following it).  There is no question I suffered and my family suffered for my illness until just a few years ago when it reached a head and I found my way to the kind of help I really needed.  But we are all alive.  I’m not sure you can understand the magnitude of that statement alone.  One of my younger brothers is NOT alive and took his own life to end the pain just two weeks after I reached out to tell him how trauma therapy was different.

But I’m not JUST alive.  I have a marriage still in tact.  I have avoided drug and alcohol abuse to escape the pain.  I have been able to support myself since I left high school (albeit it occasionally at the charity of others).  I have been able to accomplish a lot of things that may never have been possible without years of therapy involved.  So I don’t really care what the motives were for initially putting me there–I’m thankful.

Being capable of affection & compassion

At some point during my treatment for my long missed and mis-diagnosed PTSD, it came to my (and my therapists) attention that as a child, I had never actually had affection.  In fact, when we sat down and really looked at my life, it became clear that for most of my years–I was a burden on the various people taking care of me.  They kept me safe, fed and in school, but I wasn’t enjoyed.  Ever.

My children, on the other hand, are shown more affection in any given day than I was shown in my first 18+ years of life.  There are no words for the gratitude I feel for being able to put my own needs aside to comfort my children when they hurt or need a snuggle.  So many people with my history have not yet overcome the pain enough to love outwardly when they ache for love for themselves.  They are hurting and are therefore hurtful.  In this way, the cycle of pain is passed down.  I see this in my own family history–but the chain has been broken with me.  My gratitude is deep and immense for what this means for my children’s futures.

My son’s developmental problems

I love my son.  Truly, I love my son.  Some people will never have a biological child and I know that it haunts them and I have one.  That alone is enough to be thankful for.

But I am thankful for the hell and back my son has put us through with his various developmental and physiological issues.  They have challenged me and focused me in overwhelming ways that kept me from falling into patterns of behavior that might have derailed my well-being.  My son’s care–the research involved in trying to help him and the hours upon hours of therapy–consumed several years of my life that may have otherwise found me doing less worthwhile or productive things that may have ended my marriage or worse.  I was not yet “well”.  His challenges and issues consumed me in a way that kept me on-track in a productive manner during a time in my life that was ripe for negative change (for many reasons).  I’ve learned so much that has benefitted our friends and our foster children over the years.  His struggles became our family’s blessing to others in need.  So there are multiple layers of gratitude involved.

My daughter

I’m going to be really selfish here; but it is truly what I am thankful for.  My daughter has shown me a world I didn’t know existed.  It’s a world of unconditional love.  My daughter–at age 6–will crawl into my bed at 2am and when she leaves it at 7am (with me still not ready to open my eyes) she will pull the covers up to my neck.  I am overwhelmed with the many gifted drawings, the thoughtfulness, the helpfulness and the infectious laughter of my girl.  I had no idea these things existed in the world until she came along and it is a gift that I can only hope I return in some measure to her.

A husband that is still here

My husband was the first person that ever made me feel truly loved without having to say it–and with that, I was sucked in.  The road has been hard.  This is true of most marriages, but ours came with layers of trauma on both sides that aggravated the problems of the other in ways that most people–let alone most marriages–don’t often have to tackle.  Even when they do, they generally don’t end well.  Throw in a brain injury and you have a recipe for destruction.   Like most families, we work at it daily.  Each day gets a touch easier.  There are conversations where there was arguing.  There are tears with hugs and understanding rather than isolation and loneliness.  There are plans in place to accommodate the needs of the other because we want the other to be happy rather than retreating to a place of pain and lashing out to hurt the other.

There are not enough words for all I am thankful for.  Not nearly enough.  But I offer you up my attempt to show you a glimmer of my joy and gratitude.  Every day.  Every. single. day.  There is not a day that passes in my life where there is an absence of gratitude because the gifts are too big to ever hide in a recess of my mind to be forgotten.

I am thankful for that, too.

There are millions of reasons to be thankful.  Hop on over the the #FridayFive linkup over at Mrs. Discipleand see what others are finding to be thankful at Thanksgiving.