Normalcy

Is it sad to pin your dreams on the idea of being normal? I'm not talking about being exceptional or gifted, I'm simply talking about being normal.
Lately, it's all I can think about. Before we had kids, I had these really grandiose ideas about the things I wanted for my child. I imagined the things we would do, the places we would go, the traditions I wanted to share with my kids, the values I would instill in them, etc. And today, I sit here typing away with a lot of confusion, a tinge of jealousy for the parents who have it quote unquote 'easy', but mostly I'm sad.  I don't want to be guest #1 at a pity party for the ungrateful. I know how lucky I am that I can sit here and type of these feelings and emotions. I know that I'm lucky that I have a little boy to be worried about.  In the last couple months of 2009, my family and my doctors didn't think the likelihood of this day was going to be possible. On the contrary, they told my husband and parents that if I didn't show at least 10% improvement in the first 5 -7 days in the ICU, that they needed to be prepared to start making arrangements because they were doing everything they could for me and the baby but I was not responding to treatment.
But what about the flip side? I don't think I had any idea about how hard it was going to be.  I was ill-prepared for this journey we've been on since the day Noah was born.  It's been in one word, a fight. A fight for his life in his early NICU days, a fight to get his reflux and gastro issues under control, a fight to stave off the possibility of him going blind from ROP, a fight to get him to eat and grow at a good rate to take him home, a fight to find the right combination(s) of meds for his severe reflux, a fight to get the proper evaluations done for his early intervention and therapies, a fight to keep him healthy and away from germs and sick people, a fight to find the right formula ratio, a fight to get him to eat baby food, a fight to get him to crawl/sit/stand/walk/jump/climb steps, a fight to get him off his Pediasure and eating solid foods, a fight to get him to swallow his food, a fight to teach him to potty train, a fight to keep his clothes on when all he wants to do is be naked... and now I feel like I'm fighting for my own personal sanity.
And I feel like it's a battle I'm losing more and more everyday. I'm left clinging to what little hope I have left for that concept, that thing I've become complacent for... normalcy. I want to scream at the top of my lungs and ask why me, why us? I stare the feeling of being a failure straight in the eyes, everyday. I wonder if I'm doing the right things, often enough, hard enough.  I second guess myself and fear that I'm not strong enough to handle this life that was thrust upon us the second I woke up from that coma. And I know how desperate and pleading this sounds, but it's what I feel. It's days like this when it's hard to feel thankful for the opportunity to stress over that little 2lb preemie.   Was all of it worth it if Noah is struggling like this, every day?
These past few weeks have been especially brutal. After almost escaping this cold and flu season unscathed, Noah caught a really bad cold. I knew something was up when his older cousin came over to the house and wasn't feeling good at all.  He didn't want to play, all he wanted to do was sleep and be held. That was on a Friday, and by Monday, Noah had caught whatever his cousin had.  The sneezing started and by that evening the phlegm and cough had taken over.  The next couple days were like any other time when he caught even a slight sniffle, he started throwing up from the post nasal drip and then it snowballed from there. We did the homeopathic things we always do when we think he's getting sick (the Vicks on his chest and feet, the vaporizer, the essential oil on the tea light burner, warm baths, and Similason Cold n Cough) but nothing seemed to help.  We ended up in the emergency room a few days after that from off and on temperatures, constant throwing up from the phlegm and runny nose, decreased fluid intake, etc. The ER told us he looked and sounded ok and just to keep pushing fluids. They also said that he had a slight ear infection but not anything that required antibiotics.  I should have followed my mommy instincts and pushed for the antibiotics as a precautionary measure to prevent the ear infection from getting worse, but like the stupid person I am, I trusted the docs knew what was best.  Two days later we were back in urgent care.  Confirmed ear infection and antibiotic regimen needed stat. It's been about 3 weeks now and he is still not 100%. He has lots of secretions, his appetite is horrible, his digestion and bowel movements are as bad as they've ever been and he's now got into the habit of chewing up food and spitting it out so he doesn't have to swallow it. In total, he's lost about 2lbs and with no appetite or way of getting food into his stomach, I'm at my wits end and want to crawl up into a ball and cry.  We've literally taken 5 steps backwards.
A million questions are racing through my head at any given moment in the day: when is he going to get better, does it seem like he's getting worse, am I going to get some sleep tonight or will he be up all night coughing again, what if his appetite never comes back and this is that one illness we feared would push him over the edge and start his outright food refusal, are we heading down the path of a g-tube, why aren't his OT and speech therapists helping him in this regard, will he ever eat, how is he going to gain that weight back, is this going to effect his overall growth and development, WHY CAN'T THINGS BE NORMAL FOR A LITTLE WHILE?  Not always, but just for a little while?  I need some peace, I need some reassurance that things are going to be okay.  And I just don't feel like that.  Being a parent is hard, we go through trials and tribulations that test our patience and strengthen our bonds with our children.  But the relationship I have with Noah is one that has been centered on a deep pressure to do my very best for him.  To help him reach his milestones (or in our case, inchstones), to keep him on his growth curve, to be his advocate, to be his therapist, to be everything but what I've always wanted to be, just his mom.  A mom to a carefree toddler.
I know that these are the times that I am supposed to rely on my faith.  God has seen me and my family through some pretty tough times and he's never abandoned us. But after 2.5 years of going no where with Noah in terms of his eating, lack of interest/desire to do so, my knees are sore from all the praying I've done for something to give.  I keep waiting for that little light bulb to switch on.  I keep waiting for him to get a taste of something he just can't put down. I keep waiting for him to drink or eat something just because, for the sheer enjoyment of it. And all I get is one disappointment after another.  Yes, he has gained steadily and yes, he is on the growth curve.  But it is only because of his dependency on his bottle and Pediasure. I can't imagine all that sugar is good for his little body or his teeth which he is already having issues with.  I can't imagine eating the same thing day after day, a thick and creamy sugary liquid, meal after meal after meal.  What are the long term effects?  But what do I do if it's all that he'll take?  Do I stop and risk further weight loss and possible refusal of the only thing he takes?  What do I do?  And that's the other frustrating side of things.  No one can tell us what to do or offer suggestions or plan of attack.  Do we go down the route of appetite stimulants?  Do we seek more aggressive treatment for his oral/feeding delays? Do we toss out the bottle and hope he doesn't starve? What?!?!?!?!
So if you're wondering why you don't see much of us look at us like we're crazy because he's still on a bottle, understand that there are sometimes things outside of what you may think you understand. There's a whole world of people out there going through things you take for granted.  Something as simple as providing nourishment to a child or brushing off a little illness as a way of building up his immune system.
I used to think that I might look back on these posts one day with a laugh and a chuckle after I realized how far we had come.  But now I feel like I am chasing this idea of being normal and the gap is widening a little bit more every day. And that's what scares me the most, the idea that I will get to a point one day and not have that small spark of hope that keeps me keeping on every day.  And what will I do then?