A New Perspective... Home

Ahh..Home sweet home!  I don't think anything is better than taking your baby home from the hospital!  Our almost 3 month hospital stay was long enough and we were ready to say "Adios"!  I'm sure every new parent has the overwhelming feeling of anxiety right when you get home with a baby and I felt it strong our first night home!  We hadn't been home for 3 months, our apartment was a disaster and our baby came with a list of "to-dos".  I didn't know where to start! How am I supposed to remember his medications and the correct dosages? Where are all of his necessary supplies? Let alone...when do babies go to bed?  Ha!  

About a week or so into our new home life, I picked up one of Sy's bed time books again.  This book brought tears to my eyes every time I read it to him in the hospital and it brought tears to my eyes again.  The book starts like this:

"I'll see you in the morning, for now it's time to sleep.

I will stay and watch a while, till you are counting sheep.

Don't be afraid of darkness, don't be afraid, my sweet.

The night is just a blanket that helps the earth to sleep."

This is the part that always got me--

"I'll be here if you need me, I'm only steps away."

At the hospital, I'd change the words to, "I'm only a phone call away".  It broke my heart every time.  When I read that line at home and got to say the words, "I'm only steps away", I was flooded with emotion.  I'm only steps away!  You're home! It's my favorite line in the book.

When we were in the hospital, I started reading "Baby Wise", as I have heard my sister rave about this book from her own three girls.  I think I got to the 3rd or 4th chapter when I put it down and realized, this doesn't relate to Josiah.  Schedule? What schedule? His schedule is that he eats every three hours on the dot and gets medicine every 6 hours.  The kid can sleep whenever he wants because he has that special skill of sleeping and eating at the same time! Although we would love for him to take a bottle, his feeding tube has become a bit of a blessing for us, as sleep deprived parents!  Instead of waking up every three hours to eat throughout the night, he sleeps 10-12 hours at night because food is just being pumped into his stomach for him!  Even still, we'll keep working with him to take a bottle. :)

That feeding tube has brought the attention of random strangers on the rare occasion that I do take him on an errand with me.  I've come to realize that I look at my precious baby and see him and only him.  When I go out, people see that tube coming out of his nose and wonder what's wrong with him?  While standing in the checkout line one day, one lady asked me how old he was and I told her that he was 3 months old. "Wow!" She said.  "He's small!"  Having a variety of things go through my head, I told her he was a preemie and came 8 weeks early.  She responded by saying, "Oh. So he's only 1 month old."  I politely smiled and turned away, all the while thinking, Noooo...he's 3 Months!  My little man had more done to him in those first two months of life than most people have in their entire lives!  Please don't take that away from him because he's small. 

It's interesting how we look at people.  We see their disabilities first.  But does anyone look at that disability and wonder how much that person has overcome? I'll be honest--I rarely did, if ever.  Having a baby with a disability changes that perspective.  My baby was born 8 weeks early, had 2 major surgeries on his heart and has a feeding tube because he's still learning how to eat.  That skill was taken from him when he wasn't allowed to try a bottle until he was 2 months old.  Now he's learning.  He's overcoming the obstacles that he's been handed. 

Bringing home a baby is a lot of work.  Bringing home a sick baby is A LOT of work!  But, we've found our routine and things run pretty smoothly around here.  It's wonderful to be home!  I've learned his meds and can now draw all of them up for the day in a 5 minute time span.  I get his milk ready in the morning. We have therapists come to our home and we go to weekly visits at the clinic.  It's rare that we get to spend a day at home with no one coming over, but we cherish those few days that do come our way.  I feel blessed to be a mom. I feel blessed to be a mom to my miracle baby.  He's a lot of work, but there's no work that could bring me more joy!  I think back on my years as a teacher and think of my love for that job and the families who I encountered.  Let me tell you, those days seem like forever ago!  I can tell that my job helped to prepare me for this stage of my life.  The different activities that were implemented in my classroom to develop physical skills, cognitive skills, social/emotional skills, and language skills.  These are all things that I work with Josiah's therapists on, except in baby form. :) 

We love being home and feel so blessed to make it out of the hospital!  I remember when Josiah was only 9 days old and we spoke with a fellow mom of a 3 year old daughter with HLHS.  She told us how great her daughter is doing and how she's thriving!  I remember her walking away and I broke down in tears.  It didn't feel like we'd ever make it to this moment.  But here we are, 3 months later and I can say that my little boy is thriving!  His cardiologist says he's perfect.  I agree.  He is perfect.  I couldn't be more blessed. :)