more hard truths

In the last few years, when I was seriously dreaming about starting a family, I often thought to myself that I could never handle a child with special needs.  I am not sure I understood exactly why I felt that way, but I think I understand now.  It has nothing to do with not being able to love them or not dealing well with them being behind or “abnormal” – it has to do with my anxiety and stress level.

You see, I am a worrier.  I always have been, and, despite trying many strategies over the years to change this, I think it might just be too deeply embedded in my DNA.

This morning, I had a very normal Mom moment.  I cut my poor baby’s finger while trying to trim his fingernails.  I knew this would happen – I was warned by my pediatrician it happens to almost every mom at some point – so I wasn’t too worried – at first.  But then it wouldn’t stop bleeding.  Ten minutes went by.  Ten minutes is a long time.  I broke down and called the pediatrician’s office and talked to the nurse.  She assured me it should stop bleeding; some babies just take longer than others.  If it didn’t, I was to bring him in.  Thirty minutes later (I kid you not), it finally stopped bleeding.  There were moments during that time I was convinced this would be what he would die from – blood loss from his mom’s failed attempt at trimming his nails.  Yes, my mind went there.

So you can only imagine how I handle some of the harder stuff.  Last week was especially hard.  I went into the week knowing it would be a busy week.  Monday morning, my incessant worrying about his coughing got the best of me, and I went to see the pediatrician with fears of aspiration.  No signs existed to indicate he was taking food into his airway, but she ordered a swallow study to be done anyway.  With a heart baby, it’s better to be safe.  I went home with that worry lodged into my brain, and every bottle was a possible landmine for the rest of the day.  I worried with every cough – every cry – I was home alone with him all day (due to our internet being down, Arif was working at my parent’s house)  and all evening (Arif plays pool on Monday nights)…He was crying so hard at one point Monday night, I was panicking – were his lips turning blue?  I couldn’t tell.  Maybe they were.  Should I call 911?  I had lost all confidence in my ability to notice if something was wrong with my baby boy.  I am still not convinced I will catch everything – I am so afraid I will miss something vital to his well-being.

And that was just Monday.  The week pretty much continued on like that.  The home health nurse put my mind at ease about some of it on Tuesday – for a little while – and Wednesday was a bit better.  The worries were still there but quieter.

Thursday morning, we had the swallow study.  Lo and behold, though they didn’t see aspiration, they did see pooling in that direction.  Recommendation: Go back to the preemie nipple and feed him side-lying.  It was good to know I wasn’t crazy with my worries, but this has been a difficult transition.  Kiran was taking bottles in 15-20 minutes, and now it takes him a full half hour…Although today, he has taken two bottles in just over 20 minutes, so maybe we are making progress on this.

And Friday, we went to Iowa City.  Casts came off; brace went on.  I had some worries about that, too, of course – I already called – twice- to speak with the orthopedic nurses about his feet this week.  At least I am learning to call and ask questions – to get help – instead of just stewing in my worries.

But the biggest worry, threading in and out of all these other worries, is in the last week, we have noticed Kiran’s oxygen saturation levels start to go down.  We were seeing him firmly in the low 90s/upper 80s, and now he seems to be dwelling in the mid 80s most of the time.  It is hard to see this change, as I know it means surgery is drawing closer.  I have had to continue to remind myself that surgery is still going to happen – sometimes, because things have been going so well (for the most part, all my other worrying aside), I forget this reality of ours.

I just don’t know, sometimes, if my heart can take it.  I don’t know if I was cut out for this – any of it.  The flat foot with casting and braces would have been enough to worry me immensely.  The feeding issues we have experienced would have been enough to stress me out.  But these things are the least of it, and that is why I’m not sure I can handle having a child with special needs.

But I do.  And I have something else to worry about today.  We are going in for his third hearing screening – he failed his first two.  And as I look at him sleeping in his crib next to me as I write this, I can only hope one thing: that he doesn’t inherit my anxiety.

 

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