Tuesday, May 3, 2011

Bear - Finally Home and the Future

The one thing that has saved me when wading through the special needs mud, is that I just want him to be happy. If he need me forever, then at least I'll make him happy.

But then, no matter what I did, he didn't stop screaming. I felt like a failure as a mother. He screamed all night, he screamed all day. He screamed if I rocked him, if I put him in the carseat, if I wore him, if I put him in a stroller, if I held him, if I put him in the swing, no matter what I did. Literally.

People who have never had a colicky baby really can't even begin to imagine the mental game this is. It's not just a baby that cries. It is a baby that screams with blood-curdling volume, that makes your soul shatter. You are this baby's mother. They're supposed to know you. To calm with your voice, to snuggle into that crook in your arm.

And there you are, snuggling your baby and they're screaming. Screaming like you are murdering them with your touch.

I heard the words "postpartum depression" thrown out a lot. I really don't believe I had/have that. Because the days that my son had that were good, the moments when he smiled for the first time, when he rolled over the first time, I loved him enough that I could cry. I felt bonded to my child from the moment I met him. However, when your ears are ringing for the few hours a day he isn't screaming, it is literal torture. I did have angry thoughts. I never wanted to harm him (AND I NEVER DID) but I would pray and pray that he would stop screaming. There were plenty of times I had to lay him in his crib and go in the car (the only place I couldn't hear him) and cry my eyes out. I would bring the monitor and put it on mute.

The guilt, that I did something to cause this was unbelievable.  We had a few hospitalizations, hernias and failure to thrive, and we had an enormous amount of tests done. Watching them, poke, draw blood, give shots, and sedate my little baby was so difficult.  I then felt guilty that whatever I did was causing him to need all this testing.

On top of all this, he didn't sleep.  Hubs and I slept in shifts.  One of us would sleep in bed, while the other held Bear in the living room.  He would wake every 30 minutes, wincing, writhing in pain, screaming.  We would pat him, rock him, bounce him and walk with him.  Then after 5 hours we would switch. 

Finally around 5 months the screaming improved.  We finally stopped giving him the formula the doctors demanded he needed and the nighttime sleep improved.  We followed Ferber's recommendation for amount of sleep and his nighttime sleep improved.  He would wake about every 1-3 hours. 

Around 8 months the screaming had subsided.  He is still easily frustrated and very demanding, but better.  He has bad days however they're few and far apart.  He still has testing, undergoes a sedated lumbar puncture, had therapy, follow up appointments, and we finally get a new medicine.

The first night he was given it, he slept in 4 hour increments.  The next week, woke 1 time all night.
Heaven in a bottle.  At the end of the first month we ran out before we could refill it, and he was back up every hour.  They can pry this medicine out of my cold dead hands.  I will never give it up.

They still don't know what's going on with Bear.  He will have another MRI in a few months.  His motor skills are severely delayed.  However, cognitively he is all there.  He laughs, he yells, he blows raspberries.  He has favorite toys, he has toys he's afraid of. 

But most importantly, he seems happy.  He has this adorable smile, with a humongous dimple in his right cheek, and this silly laugh.  It literally melts my heart to hear it.

The guilt is still there, though I'm slowly climbing out of it.  My biggest regret is not advocating for my son's needs effectively.  I would request different nurses, different tests, different procedures.  But that's in the past, and I cannot change it.  I can simply learn from it.  That doesn't mean my anger over the situation has resolved, it simply means my anger with myself is resolving.

So instead, I focus on the future.  Bear has a Guinness Book of Records attempt in his baby book and it's just the start.

My little guy is going to move mountains.  Just you wait and see.

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