That first conference I spent dazed, crying and so terrified - I didn't know how I was going to be able to take care of Kaleb in the manner in which he would need taking care of. I didn't know the first thing about seizures, secretions, breathing treatments and suction machines, terrified doesn't describe how I was feeling. In all of my days, I know I will NEVER forget our first conference....
We had just checked in at the hotel registration desk, we were heading to our room to drop our luggage and then we would go check in with the conference. We were standing at the elevator, Kaleb was in the stroller in this picture, sitting up. Two women approached us, one bent down to talk to Kaleb, asked me his name and then said "which disease does he have?" - What??? Why would should say this about my normal looking child...I look at this picture, a mere five years later and I get it! Really, it didn't take me five years to figure it out but then I couldn't see it. Our conferences are only three days - that first one was the longest three days for me. I spent the entire weekend in a daze, terrified by the sights and sounds of these diseases. I remember feeling shocked at how "at ease" all the other parents seemed to be, how easily they cared for their affected children, while I felt like my life was falling apart around me. How can they seem so "normal" when they are caring for a child they know will die...soon. I was amazed also at how many parents continued to attend conferences after their child(ren) passed away. There was laughter, smiles and tears - by nearly everyone in attendance.
That conference, I met some extraordinary people, people that I admired, and still do, for their strength and courage, because I felt like a blubbering idiot. I couldn't form an intelligent sentence, all I could do was cry. It is one thing to read about these diseases and it's an entirely different thing to see it. The sounds of the machines everyone was using scared me and I remember thinking this was not going to happen to MY Kaleb...I was wrong, I knew then I was wrong, but I refused to believe it.
One of the first things that happens at this conference is that the newly diagnosed families get together for a meet and greet. There were four children, including Kaleb, that had recently been diagnosed with the infantile form of Sandhoff's or Tay-Sachs (2 of each actually) and there were 2 children with the Juvenile form of Tay-Sachs, five years later only one is left to continue this battle....
We've missed only one conference which was 2011, in Boston - we didn't want to put Kaleb on a plane, leave the warmth of Florida for the cold of Boston (it snowed that year in April!) We struggled with the decision to cancel this year but sometimes, life gets in the way and we just can't make it. I will miss seeing my dear friends - there's something comforting about sitting with a group of people who know exactly how you feel, without you even having to say it. In this group, I am Kaleb's mom first and Shelly second and that is perfectly fine with me. I love being able to talk about him for an entire three days. It is an emotional roller coaster but I also find it to be cleansing.
A couple of posts ago, I shared one of my favorite poems (since Kaleb's passing), it is quoted frequently but I never had occasion to know the authors name...until he read his poem on my blog - with his permission I'd like to share another one:
A Childs Headstone:
Time has passed our little angel,
since you were called away,
but you are not forgotten
we still think of you each day.
A tiny little headstone marks
the place where you now lie.
A peaceful spot that's just a dot
beneath the big blue sky.
The birds are sweetly singing.
Like us, they feel you near.
You've left your earthly home,
but your spirit lingers here.
You are loved by all your family
and though we're now apart,
the memory of your precious life
lives deep inside each heart.
We know, in time, we'll be with you
up there in heaven's skies,
and tears will cease to fall
where your little headstone lies.