Like major mad at the world, cry randomly, not taking care of myself, shutting down, mom guilt...broken.
I haven't wanted to talk about it with hardly anyone. And those who I do talk about it with, I'm short and sweet...you know how it goes, "life is crazy, but everything's fine." Well, it's not. Life has been hard lately, and if I'm honest...it's been hard for the last almost two years.
Mac entered this world ticked off and loud. And he cried all.the.time...and still does. He cried when he was hungry. He cried when he needed his diaper changed. He cried when he was just mad. And he cried all the time with gas and because his stomach seemed to hurt him. Who knew babies and kids cried like this?! Oh, that's right...not us.
You see, our first child was the exact opposite. Ellie literally entered the world like a small squeaky kitten. She never.ever.cried.hardly. She never woke to be fed. She never cried when she needed a diaper changed. She never cried just because she was mad. And she never cried because something seemed to hurt.
Two extremely different experiences. Thinking back to before I had Mac, I remember telling myself to be flexible and laid back, and at times now I wonder if I was a little too laid back. I don't think you realize the stress on yourself until you reflect back. I was stressed, and that stress just continued.
Mac and I struggled to nurse. Nursing is hard...enter mom guilt. Eventually I decided I would pump because I knew without a doubt I could do that. So I pumped. Mac started throwing up. And almost two years later still continues to struggle with throwing up. I frantically stopped nursing and went out and got the hypoallergenic formula because I was convinced it was a milk protein allergy. We struggled still, but it got a little better.
We didn't sleep. We don't sleep. He hates sleep. We got reflux medicine. Things got a little better. We still didn't sleep. He hates sleep. Sleep training didn't work. Crying it out didn't work. Eventually we were in a place where almost every time we put him sleep, he got so mad that he he threw up.
He slowly started to stop eating different foods, and became so, so picky. Like crazy picky. He barely wanted to eat. All he wanted to drink was milk...all the time.
We had talked with our doctor about constipation and his weird poop, but he was going everyday, so we put it out of our minds really. Amazing how when you become a parent that so much conversation centers around poop...
Meanwhile, my mind went everywhere. When you have a child with a rare genetic condition, and your eyes are opened to the medical world, your mind can't help but go there. I became nervous, scared, mad. Looking back...mom's intuition is a force to be reckoned with, and as crazy as I felt, I'm glad I continued to wonder.
Enter January this year...
Almost every Friday in January I took Mac to the pediatrician because he was throwing up. Initially, we were all convinced it was the stomach virus (and still very well could've been), but it kept happening...and I knew something wasn't right. We decided to get an abdominal X-ray and a referral to a gastroenterology specialist. The X-ray determined he was extremely constipated...enter even more mom guilt. And upon pushing to see the gastro doctor sooner, severely constipated.
I felt a terrible feeling that I hadn't experienced since Ellie was diagnosed with PWS. How could I have not known this? How could I let him be so miserable for so long? I still get trapped in those thoughts frequently, but have to remind myself that I cannot dwell on the past. The past is gone, and we've figured out some of the problem. We can only move forward.
He's happier now, he's eating more quantity and a little more variety, he's sleeping a little better. But ultimately, he's happier now. But here's what I think I'm struggling with...
Tomorrow we go to have an evaluation for feeding therapy. There, I said it...feeding therapy. Again, therapy for feeding. And while I know we're in the the absolute best hands, and it will do nothing but benefit him...it shatters a piece of me all over again. More therapy, different child. Totally unexpected. This wasn't supposed to happen again. But it is. And just acknowledging it, makes me feel better.
So, tomorrow as we tackle this new feat...I'm choosing to find joy and give God the glory - thanking Him that our sweet boy is feeling so much better and so much happier.
And this picture that once made me again feel sick, nervous and sad (namely because feeding my child was a struggle all over again), now makes me feel optimistic and hopeful.
