Feeling Extra Thankful for Lauren, Justin, Logan and Ethan Today

Living with a child who has a disability can be a very difficult thing for the entire family.  There are just some spoken and unspoken rules that the other family members need to embrace.

Today was an especially difficult day with Jameson (we've had a lot of those 
lately).  As I tried to deal with yet another "in public" tantrum, I was once again amazed at how well my 11 year old, Ethan, handled Jameson's outburst.



I have been thinking a lot about the impact that Jameson has had on our family.  He has taught us all a new level of loving someone.  He has shown us that there is something to be said about "nature" in the "nature vs. nurture" argument.  He has taught us patience beyond what any of us dreamed we could possibly demonstrate.  He has given us a new love, respect and appreciation for races other than our own.  And he has made us laugh.  A lot! 

But there has also been a lot of crying.  Mostly from him.  But a fair amount from me.  There are some days when I am overwhelmed by the enormity of caring for a child with fetal alcohol syndrome. 

Always having to be on guard for the next meltdown.  Trying to mentally plan out each day so as to avoid any potential triggers to a meltdown. Deciding ahead of time which errands will be possible with Jameson in tow and which ones are just better left undone.  Always thinking ahead and taking Jameson into account every where I go and often times with everything (literally) I do.

There are days when I grieve for our other children, when I think of the things they have sacrificed by having Jameson in our family.  The days when "peaceful" cannot describe our home.  Like the times when I have picked one of them up from school and as they open the van door, they are greeted by one of Jameson's "out-of-control" meltdowns.  Welcome home!

There are days when Jameson will verbally tell all of us how much he loves us.  And there are days when he says things like, "Nobody loves me!  Everybody hates me!  I want to live in another house!  You are a 'meanie'!"





We all know that he does not really think these things, but when he is in the midst of a meltdown, these are the hurtful words he will hurl at us.  And there is no easy way to calm him down.  Once he has started this downward spiral, he cannot receive anything in a rational way.  There is no "lesson to be learned" after the meltdown.   It just was.  And then we move on.  Even though we know the words spoken (or yelled) by him in the moment are not true, the words are still hurtful.


Our other children have learned what many of Jameson's triggers are, and they have become wise beyond their years in trying to divert a meltdown.  They have endured meal after meal of Jameson changing the seating order for dinner.  They have learned to discern whether this game of Uno (or Chutes and Ladders, War, Memory or Go Fish) is one where Jameson can handle losing, or if it will just send him over the edge.  And they can even tell if he is in the midst of a teachable moment, where losing would be sad, but okay, or if it will disrupt the rest of his (and our) day!

They have learned that with Jameson, we truly have to "pick our battles" and we need to have as few battles as possible on any given day.



They have learned how to quietly slip outside to play with friends, because if Jameson hears them, he will be running outside and demanding that they all play with him.

They have learned that sometimes, it really is better to let him "get away" with something, rather than make a big issue of it.




Honestly, our other four children have been amazing through this whole journey!  I truly can see how they have grown in compassion for others and will often look out for other's best interests before their own.  They have a greater understanding of child development (and delays) than most children ever will.

And they have learned how to forgive.  Again. And again!  They have a greater understanding of what it means to love the "unlovable" or the undeserving.  They keep a very short account of the difficult things about Jameson.  I am always amazed at how even after a very difficult morning with him, they will frequently argue about who gets to wake him up from his nap!

They dwell on all his amazing attributes.  His tender love.  His humor.  His childlike faith.  His loyalty to his family.  His desire to belong and be loved.  His zest for life.  His energy. Just him - all of the wonderful with all of the difficult!

I know I have blogged about it before, but I truly wish there was a way to let every woman know that the choices they make to consume alcohol (any kind, any amount) while pregnant, can have irreversible, lifelong ramifications for not only the child, but every family member, friend, co-worker and neighbor of that child.

There are so many aspects of Jameson's disabilities that I wish I could change.  But in the midst of it, I am so thankful that God chose our family, and our other children, to love him and help him be the best Jameson that he can be!   I know that God has big plans for him and am honored to be a part of that.  One day at a time!