Need To Vent ...

I try not to "complain" when writing my blogs but today I just need to.   I'm just recently (within the last several years) become a person who looks at the glass half full instead of empty.  It took me a long time to change my perspective on this idea.  I worked very very hard to see the bright side of things.  For a person who was born a pessimist, it was a lot of hard work to get me to be more of an optimist.

I feel like I'm sliding back lately.  When I feel like this I take an inventory of all the good and positive things going in my life.  I have my health.  I have a wonderful husband, two awesome kids, both my parents are alive and well, I have a wonderful roof over my head, we have food on our table and we're essentially financially in a good place when so many other people are struggling.  All things that I am so very very grateful for, and I don't take them for granted.

I just wish that I could fix one thing in my life.  I wish I could make my son not have Noonan Syndrome.  I hate that most doctors don't know much about the syndrome.  I hate that I know more and have researched more about the many "issues" people with Noonans can have than most of the doctors my son has seen.  I wish there was just a doctor that was a specialist on Noonan Syndrome.  One that knows the intricate details of what goes on in the body of a person who has Noonans.  All the little medical quirks that can potentially show up.

I am grateful that a cardiologist that visited my son when he was in the hospital knew a lot about Noonans.  We had an excellent discussion for over an hour about Noonans and some of the medical implications of it.  He was kind enough to leave with me a medical journal that essentially pulled a lot of the pieces of the Noonan puzzle together.  Without that journal, we might not have known to push the doctors about getting my son tested by a hematologist.

Just to give you some perspective on some of the things my husband and I deal with regarding my son - we spend at least 2-3 doctor visits a month with any one of the specialists he sees.  We go to a feeding clinic at least once a month, it use to be every week and I think now we are teetering on the edge of needing to go back at least weekly again, if not, the extensive program of every week day for 8 hours for 10-12 weeks.

My son is constantly sick with some virus or another.  He's had 3 viruses from May 11th until today.  My child does not go to preschool at the moment or daycare.  These viruses he gets from random places, such as the public pool, shopping cart, who knows!

The bruises on his body make him look like someone is beating him continuously.  A simple bump can lead to a bruise that lasts for weeks, because of his platelet function issue.  I can't let my child run around and fall like a normal little boy.  I'm constantly shielding my eyes when he plays with the "big" kids on the block for fear of him falling and bumping his head, but then I don't want him to end up a "whimpy-kid" either.  So I let him play yet the pit in my stomach gets bigger and bigger.

With every cold virus my child gets, he takes a cocktail of medicine.  If he has a fever, he gets gluten free tylenol only since that's the only fever reducing medicine that is apparently gluten free.  There are other meds but they've been on recall for the last two years and have been pulled from the shelves.  He has to have xopenex inhaler to make sure he doesn't go into a full blown asthma attack.

Then complicate these viruses with the fact that when he does get sick, he totally shuts down in eating.

It is a never ending spiraling out of control cycle.  We take a step forward and then 10 steps back.  It gets emotionally exhausting.  And I'm only talking about myself.  My poor child must feel like "shit" more than he feels good.  I'm sure that is why he doesn't like to eat.

As a mom who dearly loves her children, seeing her son struggling with the simple things in life like "eating" tears me up inside.  It also has turned me into an evil witch.  I am not nice to my child when he refuses food, or spits out food that you give him.  I hate me most of the time because I am so frustrated with all of this.

Last night, my son finally ate dinner after a long hard struggle.  He hadn't eaten much all day long.  It was a struggle and I've given him pretty much a free pass because I knew he hadn't felt good.  He's had a fever for 4 day straight.  I know I hate to eat when I'm not feeling well.  Yesterday the fever stayed away all day long after the initial spike first thing in the morning.  I thought he was better!  We got him to eat 10 bites of grilled chicken.  He needed to eat a carrot to close out the dinner.  He didn't want to.  My husband made him eat yogurt (per my encouragement as I exited the house for the evening).  My son fought my husband tooth and nail and my husband pushed harder, because my son is not allowed to win the battles per his feeding coaches.  My son ended up vomiting all over the kitchen table.  Daddy/Mommy 0, my son 1.  Later that evening, my son's fever came back with a vengeance.

I hate the monsters my husband and I have become because of all of this.

I know all I want to be is that nice cuddly loving mom and Noonan Syndrome is stripping that away from me.

God grant me the serenity to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace ... Amen

--Reinhold Niebuhr