Muddled thoughts

I started to write a post the other night after I came across a picture of a child younger than Sonzee diagnosed with CDKL5 who was sitting.  I couldn't shake the feeling that came over me, so I opened up blogger and scribbled down my thoughts.  In summary, it was happiness panged with being envious that Sonzee's mutation was not affording her the same capabilities.  Naturally, life got in the way so I have not had a chance to finish those initial thoughts.  Then today, completely unexpectedly, it was me witnessing and then posting a video with 13 seconds of my child with CDKL5 sitting.  It wasn't pretty, it wasn't the way any of my typical children began to practice when they were 5-7 months old.  She was completely wobbling, her body awareness was completely off, she required multiple touch cues, and she fell over every single attempt, BUT she sat.

I hesitated about posting it, even though it is only 13 seconds, it is 13 seconds longer than so many children diagnosed with CDKL5 or other various causes to their medical complexity have been able to do.  While it by no means can count as hitting the milestone, I am feeling a pang of milestone guilt for the other mother's who have not experienced these 13 seconds.  I still cannot leave her on the floor to play, sit alone on a couch, put her in a shopping cart, or place her in any other situation that the majority of parents of 6-8 month children get to celebrate doing, it is 13 seconds longer than I expected at this point in her life, and 13 seconds longer than some of my special needs mommy friends haven't been afforded. 

4 years into this life and I feel like I am still figuring out how to make it all work.  The desire to celebrate milestones met by our children's friends, yet silently mourning the fact that our child can't or won't meet them.  The desire to want to celebrate our child's accomplishments without making another parent cry themselves to sleep because of it.  The doubt we feel about what we are doing to support our child when another parent says all that he or she has their child participating in.  The wondering if what we are doing is ever enough.  The confusion of if our choices are right or wrong, and if those choices are the causes of the negative outcomes that ensue.  And the ever-present, always lurking question of despite what we may or may not have our child try, despite them ever officially meeting any standard milestone, does everything we do at least add up to a desired quality of life. 

Wrong

Yesterday was a big day in our house as we celebrated Sonzee's baby brother's first birthday (officially it is Wednesday, although I am still in denial how that much time has flown by already), and her biggest brother had his final championship game for ice hockey (that we did not anticipate his team qualifying for).  It was a jam packed day, but filled will the typical chaos that comes with life of multiple kids; except for the fact that overshadowing it all was that Sonzee has been sick since Friday with the medically complex version of a common cold and she spent the entire weekend in her room, missing it all.

The saddest part was not even the fact that she was missing from the festivities or that she won't be in any of the pictures from the day, or that she spent the entire weekend rotating pain/fever medications and having constant seizures (which is not her typical "sick routine").  The saddest and worst part of the entire situation was that, I have come to expect this in our life.  The disappointment and sting was not as strong as it once was.  This has happened so many times, it is now part of our typical.  I was just beyond thankful this was one of the Sunday's she happened to have her nurse, so she could stay home and in her room to rest quietly and neither Sam or myself had to miss out on the festivities.  Despite the normalcy of the situation lies still a blanket of guilt.

Guilt that it is okay for us to go on our day without her present.  Guilt that we are used to it.  Guilt that there was relief in having her nurse care for her.  Guilt that life continued to go on without her being there with us in the same room.  Guilt that I didn't cry over the situation.  Guilt that it was better for her to spend the day in her room and not with the rest of us.  Guilt that this is her life.  Guilt that there is nothing we can really do to help her.  There is just so much guilt.

I was partially proud of myself for not letting the situation get the best of me, but partially upset that I didn't.  It continues to be a common recurrence, especially as she gets older and each time I am unsure what reaction is right.  I know nothing about our life is really normal, so there is "not really a right"...but it all seems to wrong.

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