This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Friday, August 31, 2012

Not for the soft hearted

Helloooo!! Yes, I know it has been way too long since my last post.  We have had a fantastic summer and I will blog more about that later.  Lydon is doing very well over all and I will post some of the specific details in the near future but I need to get this one out first. I guess its more of the non specific little details that are weighing on me the most. Here goes...
 Having a child with special needs doesn't just start and stop with that child. Instead, it kind of takes everybody and everything within its near vicinty and encompasses all of it. For a while, after you adjust to being engulfed inside this label, you tend to forget about it. You go about your everyday life and things become for the most part "normal". Normal for us includes days of eating and not eating, often times gagging and vomiting, being short of breath with any activity and even sometimes turning blue. Sounds kind of scary and overwhelming when you think about it day in and day out but that is "normal" for us. Day after day, week after week these things have over time just become part of our life. That, I can deal with and have gotten very use to cleaning up vomit, watching Lydon's spoon with an eagle eye to make sure he doesnt put too much in his mouth and gag, and many times scooping him up and wiping him down with wet washcloths in an effort to cool him down and prevent him from turning blue or vomiting.
     What I am having a hard time dealing with is the fact that sometimes as routine as all of this becomes, the moment when you least expect it, it just hits you so hard in the gut that it almost takes your breath away. This week as Aidan began a new school year, I received paperwork from his teacher asking what important facts and  information she needed to know about Aidan. Did he have siblings and how old were they? What were some of his accomplishments/successes?  This is something so routine and "normal" to do during the first week of school but after several non eventful months, I was suddenly but so subtly reminded that I have a child that requires special care and I felt a sting in my heart so literally I was sure that something bit me.  A couple of nights ago, Lydon was very tired and wanted to watch "his" show and Aidan of course did NOT want to watch "that baby show". In one short sentence, I told him that Lydon was tired and couldn't stay up any longer but that he was a strong big brother and could watch what he wanted later. He acted like he instantly understood and quickly and willingly handed me the remote to change the channel. This made my heart swell with pride and admiration for my 6 yr old.  I couldn't help but include in the paperwork for his teacher what an amazing big brother he is!
     This morning, I met with the diagnostition at our local elementary school to discuss what programs and options we have for Lydon educationally speaking. The meeting went very well and the people were very nice and anxious to meet Lydon. As positive and encouraging as it all seemed, again it was hard not to notice the pages of notes she took and the overwhelming look on her face as I explained Lydons medical issues. Again, my heart stung. And as Jonathan and I were discussing some of the details and possibilities of working out a schedule and time frame that would work with Lydons medications and eating/feeding and somehow getting both boys to school on time, he said 'Well, that is just our life..I dont expect it to get any easier any time soon".  This was a very true statement and I understand exactly what he was saying but somehow in that moment of trying to figure out how to make the necessary accomodations for Lydon to attend school it too stung my heart. Our baby is almost in preschool. We should be done with bottles, and formula and vomiting and diapers and time sensitive schedules but...we aren't. And as much as I love every single inch of his newly pudged up squishy little body, sometimes I just wish that things weren't so complicated for him.

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