Tuesday, October 22, 2013

I. Am. Pregnant. For. Real.

I am officially pregnant. Yes, I've been officially pregnant for like 30 weeks now, but reality is setting in.

I. Am. Pregnant.

I am due January 9. Which really is only like 10 weeks from now. That's nothing when you add in a trip to Disney, Halloween, Thanksgiving and Christmas.

I am moving from monthly appointments to every two weeks. I passed my glucose test, whoohoo! This baby girl is moving and kicking up a storm. You can see her kicking. She seems to like resting right on my bladder. I don't sleep well anymore. I can't get up and down as easily as I could just a few days ago. It's harder to breathe. I am carrying Tums in my purse. This baby is really coming.

The crazy thing is I feel so laid back about the whole thing. Maybe it's because we have experienced so much medical stuff that birthing a child, a second child, just seems less difficult. (HA!)

Some wonderful friends have given us some darling seasonally appropriate clothes. I dug through all of Will's old clothes and found some of the least offensive boy sleepers. I had picked generic bedding for Will, so we'll reuse that again. I went through all the blankets, burp cloths and other sweet little baby items and again, found the least offensive items.

The guest room to nursery transformation is taking place in early November. I have started a list of a few items I need to get - namely a baby wear sling type thing. I am going to need to be as hands free as possible to keep up with Will.

The only thing I'm trying to allow myself to worry about is work and ensuring that I have everything all buttoned up. I am avoiding thinking about just how the hell I am going to deal with a baby not inside my belly and Will. Life feels easy right now.

I must say, I am really focused on enjoying every minute of "just the three of us" time that is left. Last night Will was in such a great mood, we all ate dinner together and hung out. It was awesome. Just the three of us. It makes me sad and anxious to think that Will is not going to get my totally undivided attention whenever he (or me) wants it. But, it will be good for all of us.

Talking about the baby

Loving on my little guy

Thursday, October 17, 2013

Is this all in vain?

This morning is a hard morning for me. Three mito kids have passed away recently and I have followed their stories, one in particular. I have never met this family face to face, but I have read how he was such a lively child, full of life and fun and then his parents watched for two years as their son died in front of them, in their house, in their arms. I grieve for them and with them in a very surreal and perhaps unhealthy way.

I freely admit that since Will was diagnosed I am depressed and have major anxiety about the future and have used medicine to help me deal with all this. Well, being pregnant that medicine isn't exactly ideal for the baby so I'm off. I weaned off for the last trimester. That medicine helped me stay focused and less anxious, but it also gave me the ability to have a poker face about our life. It gave me a filter for my emotions so I wouldn't be a hot, irritable mess.

I'm not jumping off a bridge or in some deep depression because I'm not on it, but I am FEELING so much more. I can't pull away from the grief I feel for this family who lost their son, from the grief I feel for our family. Are we doing all this in vain? Will our son suffer the same way theirs did? What the hell will I do without Will? I so desperately hope and pray for a miracle, and I can't decide if that's delusional, but it's all I have some days. I just have to believe that something is going to happen to help Will. And I REALLY BELIEVE something will happen to help him.

I watch Will make amazing progress every week in school, OT, PT and Speech. He is a really smart, good kid. Why him? He deserves so much more than we can ever give him.

I grieve because I feel as though Will's story is parallel to so many others who have passed away, and have lived in pain. I do not want that for Will. I already grieve for his unborn sister, who should be totally healthy, but I grieve for her at the pain she may experience in her life. I feel bad trying so hard to have another baby, only to know that she's going to experience things no child should have to. How selfish of me to do this.

It's a "feeling" kind of day around here and that's ok. It feels good to cry, to have a stronger emotion than what I have been having but it's also really scary, overwhelming and just kinda of sad.

I just cry and get it all out, then breath deeply and remind myself to focus on the here and now, be in the moment with Will and enjoy everything each day offers - even the bad and sad stuff. Each day is a good day because I get to hug my little bud, play games and even get angry with him when he tests the boundaries of being a four year old.

One good thing about feeling more is when something is funny, it is really damn funny. This was my biggest laugh of the week, http://suburbanturmoil.com/warped-childhood-restoration-hardware-style/2012/12/03/. I literally bookmarked this link so I could get a good laugh in whenever needed.

Painting a pumpkin - we do not need sharp knife work in this house!

Yes, the finished product is pretty much a black pumpkin with a few streaks of other color.
Dracula Mickey Mouse on a fake pumpkin. Gotta love Target finds that won't rot and are fun!

The soapy, bearded boy in the bathtub

Gymnastics - getting into handstand position

Feeling pretty pleased with himself as he held his handstand for the whole ABC song

Doing "Puppy dog" walk down the mat. He tried so so hard this morning to make sure his knees didn't touch the mat.

The "attitude" look - MOMMY, STOP taking pictures. NO!
Will recently started being able to balance on his knees. This is a pretty awesome accomplishment if you ask me. So today in gymnastics he was not only balancing on his knees, he was "walking" on his knees down the mat. He works so hard at things so many take for granted.
I mentioned this new accomplishment to his coach, Mr. Glass, and he immediately had the entire class do the new gymnastics trick - The Will Walk as he called it. He had each kid do it down the mat, including Will. You could tell Will was so incredibly pleased and proud to have something named after a physical accomplishment he did. I was living in the moment without my camera, so I didn't get a photo, but I will forever have that memory.

Thursday, October 3, 2013

Life in Photos

Life in Photos...

Eating fro-yo on a date with mom

Checking out his new Longhorn helmet - signed by Earl Campbell - thanks to an awesome event hosted by ChildBuilders!

New boots

Busted lip and swollen gum

Dress up birthday party - shockingly he chose his pirate costume from Halloween last year.

Wearing mommy's construction gear. Yup, it's been a full year since I quit my job at Edelman to venture on my own working with a commercial construction company. He has two of the three key items on - muddy boots and a safety vest. He's just missing the hard hat.

Getting new shoes to fit the new boots. Size 12.5 extra wide!

Drawing circles aka Mickey Mouse during OT

Getting ready for Disney World! Shhhh! Don't tell Will. His magic band is of course the orange one. It's going to be a party of 7 - us and both sets of grandparents!
Also - tune in tomorrow on MitoActions website, Friday, Oct 4 at noon EST.

Join us this Friday October 4th, 2013 with Dr. Ben Bronstein and Travis Wilson from Stealth Peptides. Stealth Peptides is a private biotech company responsible for the development of innovative mitochondrial therapeutics, including the investigational new drug "Bendavia." Bendavia has been studied in animals and is currently in Phase 2 studies in patients with cardiovascular and kidney diseases. Bendavia appears to target mitochondria and may preserve cellular ATP levels and prevent pathological reactive oxygen species formation in disease. 

Please join us to learn more about this exciting new drug and future possibilities for use of Bendavia by children and adults with mitochondrial disease.This meeting will be recorded and posted in MitoAction's iTunes podcast library. See more at: http://www.mitoaction.org/blog/introducing-bendavia#sthash.7mA9oX1L.dpuf