Today was one of those days.  Anyone who has read any part of our story knows that feeding has always been – and continues to be – the hardest challenge of our entire heart journey.  And today, I had a particularly emotional and overwhelming day around feeding.

Kiran has been in feeding therapy at Childserve for a few months now.  He is making some progress – slow and steady – but today, he didn’t have a good session.  He coughed and gagged pretty badly, on a Cheerio, which is a food he normally does really well with.  On the drive home, he started coughing and gagging really badly in the backseat … badly enough that it scared me and I pulled over to check on him.  He was okay, but I was shaken…so I spent his lunchtime literally sitting in the backseat of the car (with the car on – it is stupid hot this week) in the Target parking lot tube-feeding him.  I just needed to have my eyes on him for awhile, to be near him.

I just wish his eating skills were improving at a much quicker pace.  I wish he could figure this whole thing out.  I get so tired of the tube sometimes.  It is a lot of work – the poor kid spends at least four hours every day just eating (1/2 hour of oral followed by 1/2 hour of tube meal, 4x a day).  I hate how much time he spends in a high chair.  I hate how messy syringe-feeding blended food can be.  And today, it all just felt like so much.  I was so overwhelmed, to the point where I was questioning where I was going to find my next hidden pocket of strength to continue with the day-in, day-out care Kiran requires.

I found it.  Today was the day I needed to change out the g-tube.  This is the first time I have had to do it when I have not had a nurse in the room talking me through it.  I have never felt particularly successful or confident in putting the new button in, and the whole process freaks me out a little.  When you pull the tube out, you are (of course) looking at a hole in your child’s stomach.  It’s all a bit too…medical…for me.  Needless to say, I was incredibly nervous about this afternoon.  Arif came down and supported me and one of my best friends – who has been trained on g-tubes and put plenty in – came over as well.

And it went flawlessly.  I did the entire thing by myself, and it just went incredibly smoothly.  It took all of 20 seconds.  I did it!  Finally, I felt confident and comfortable with the entire process.  It is what I needed today, to feel like “Hey, I’ve got this”  I’m so relieved.  Bring it on, life.  (Just kidding, life.  Lay off.  We don’t need anything else; we are good here.)

 

 

A picture of Jalebi (as we called him in the womb) popped up on my facebook memories this morning.  His 20 week anatomy ultrasound photo op.  I get emotional seeing it.  I sometimes wonder if this grieving process will ever be over.  It is unlike any grief I have ever experienced, because he is still here.  And he is such a joy!

But I still grieve the baby in that ultrasound photo.  That moment.  When all we knew was we were having a baby boy.  We assumed he would be healthy.  We assumed by now, at 19 months old, he would be walking and talking and driving us crazy in all the best ways.

It is such a complicated bundle of thoughts and feelings to hold inside oneself at one time.  My brain constantly barrages my heart, telling it all the reasons why I shouldn’t feel sad, all the reasons we have to celebrate.  And my brain is absolutely right.  But my heart…my heart still aches sometimes.  It still hurts to see others Kiran’s age doing “normal” toddler things, when we are still working on getting that stubborn little turkey to sit up for long periods of time.

I flip-flop between feeling guilty for grieving the child I always thought I would have and trying to give myself permission to grieve.  And I just wonder if it will ever be over, or if, like grieving the death of someone, it will simply be a lifelong journey.