Tuesday, October 8, 2013

October, really?

I cannot believe it’s already October.  Time really flies.

Bear is loving school and is so close to walking it’s unbelievable.  He’s using his gait trainer and walking more and more at home and at school.

However, I’m really struggling lately.  Lots of people are having babies, healthy babies, around us.  And it’s hard.  While I’m absolutely overjoyed for them, it brings a lot of hard memories back to the forefront of my mind.

I remember how hard I prayed that Monkey would be a girl.  And 20 weeks later, he was a boy.  I remember how hard I prayed that he wouldn’t have the same issue.  And 6 weeks after birth, it was confirmed he did.  I am still crushed that I spent an entire pregnancy scared of what was to come.  I hate that I spent every moment of those first 6 weeks fighting with myself that he wasn’t affected by the same genetic issue. That there was something else going on.  that their hypertonia must be explained by another issue.  I hate that moment of how devastated I was finding out that he was indeed affected. 

It’s strange how with time, those memories fade away.  I don’t see Monkey’s diagnosis (or Bear’s) but  I see their accomplishments and their progress.  And then something triggers them and they come crashing back and give me a soul-crushing blow.  Sometimes it just still feels so surreal that this is it. 

Monday, July 29, 2013


Life has been moving.

We went on a small vacation over 4th of July and had a blast.  We got to take Monkey and Bear to a small (read: old) amusement park.  It was great!  They loved the rides and the excitement.

We're in the process of reviewing Bear's IEP and doing Monkey's annual IFSP.

Bear just had his 4th round of Botox.  My lower back is aching from trying to help him walk everywhere.

We're discussing our future.  Where we want to live for the happiness and success of our family.

Bear has become a professional duck feeder.  We had lunch on a small lake today and I showed him how to throw the cookies to the ducks.  I was certain that when I gave him a piece he was going to eat it.  BUT he surprises me everyday and was so excited to throw it down to the ducks.

This weather has been insane.  The other week it was 102 and then 2 days ago was 60.  We've been spending as much time in the pool as possible.

We're planning a trip back to the midwest in a month and I couldn't be more excited!

I took a quilting class that threatened to do me in.  It was insane.

I've been busy making quilts for bridal showers, baby showers and housewarming gifts.  It's been fun to be getting things accomplished.

I cannot believe summer is halfway over.  For the next two weeks I am busy EVERYDAY, in addition to taking Bear to and from school everyday and organizing Monkey's therapy.

Thursday, July 11, 2013

“You’re doing a good job”…and where that leads me


Today was our first visit to a new pediatrician for Monkey.  We visited the practice a week ago for Bear, but saw a different doctor.

This doctor was an amazing resource and we had some great discussion.  He was full of advice and clearly respected my opinion and the knowledge I have of the children.  He also took a lot of Bear’s history into account because they have the same diagnosis.

I giggled at one point when he was examining Monkey and said “He’s the poster boy for hypertonia”.  Monkey is much less affected than Bear, so if he thought Monkey’s tone was high, wait till he meets Bear.

We ended the visit on a good note and with a few vaccines (poor baby, but he was such a champ!).  Then he busts out the “YOU’RE DOING A GOOD JOB.  IF YOU EVER FEEL OVERWHELMED GIVE US A CALL.”  I explained that we have excellent family support and that we’re all working hard and Monkey is doing a great job.  He keeps going with “YOU’RE WORKING SO HARD AND WITHOUT YOU HE WOULDN’T BE GOING THIS FAR.”

This just struck a nerve with me.

1) I just met this practitioner, he doesn’t really have experience with Monkey or anyone with their diagnosis so it just felt like fluff.  Like he was saying it because he should.

2) I’m not doing a GOOD job.  I’m doing MY job.  I am a mother.  I signed on for this role when I got pregnant.  I am going to work my hardest to help my child anyway I can, just like any parent would do.

3) By telling me I’m doing a good job and discussing whether I’m overwhelmed, you are just reminding me that everything I feel is normal, is not.  That what I’m used to is not typical and not easy and it’s hard and never going to be normal.  It’s this lovely roller coaster ride of grief.  I’ve finally gotten through to acceptance, this is my life and I’m going to make it as normal as possible. We are a family, we go to the beach, the amusement park, the pool, the park, we hang out, watch movies, have friends over, etc.  This is NORMAL.  It has to be, because if I’m going to think of myself as “abnormal” or that I have it way tougher than anyone else, the future is a pretty bleak place.  I’ve had to change my viewpoint.  I have 2 children.  They may be different, but they’re still children.  We all still laugh, they have personalities, Monkey loves cupcakes, we all love swimming, we have bad times that are very bad, but we have good times.  And those good times are phenomenal.  Maybe because the bad is so bad that we know “it could be worse” or maybe because we know how far we had to travel to get to the good times that we can appreciate them even more.

4) And yes I’m overwhelmed.  When I picked Monkey up from his stroller, I hugged him tightly to my chest and let myself cry.  I am overwhelmed with love for my babies.  They are each a piece of my heart walking around outside my body.  And I think I love them more than typical parents because of how much they need me. To know that pieces of my heart are encapsulated in less than “typical” bodies is even scarier.  To know that pieces of my heart are going to be stared at, pointed at, possibly discriminated against, mocked and/or ridiculed is overwhelming.  I overwhelmingly love these boys so much, that at times it does hurt.  To know I cannot “fix” their hardships, or let them take the easy route can be heartbreaking.

And then Monkey gigglesnorts (a totally infections giggle/laugh that ends in this super huge snort-probably because he found a morsel of food) and I know, it’s okay. I daresay, normal.

Friday, July 5, 2013

Whole30 gone wrong

My fist whole30 turned into a whole60.  I felt amazing, lost weight and was a happy clam.  I quickly fell back into a horrible diet and after gaining 5 lbs recommitted to whole30.

And then the pain started.  I had horrible abdominal cramping, dizziness, nausea, indigestion, and bloating.

I was doing the whole30 wrong and ended up with diverticulitis.  


1) I have no gallbladder so I don't believe I digest foods as well as as before.
2) I really like nuts and fruit and salad.
3) I was not eating a balanced diet because of how busy our lives have been.

It's hot.  I hate cooking in the heat.  I think I ate salad with grilled chicken about 6 days in a row.  And way melon is in season.  So are strawberries.  And blueberries. And raspberries.  And cucumbers.  All high residue, difficult to digest foods.

I was way of doing it on the fresh seedy fruit and difficult to digest greens.  I ate very few cooked veggies and am paying for it.  I am taking a break from whole30 and did a 24 hour juice fast too rest my gut.  I am hoping Monday to resume whole30 with lots of cooked veggies and less residue foods.

Wednesday, January 30, 2013

Whole30: Day 30 Wrap Up



I cannot believe 30 days has come and gone!!! The first few days were so difficult that it felt like 30 days was going to take forever to get through.  And now it’s over and it feels like nothing.


So, was it worth it?


Yes, yes and yes!!! Hubs lost 10 lbs and a pants size.  I lost 16lbs and a pant size. Our energy levels are amazing and I feel fantastic. 


Did you learn anything?


I learned so much.  I learned how my body reacts to healthy food and I learned how easy eating healthy and at home can be.  I also think It Starts With Food  helped me understand my weight problem.  6 years ago I had a gallstone lodge at the entrance to my stomach and back everything up into my pancreas.  I had a severe case of pancreatitis and ended up severely septic.  Thankfully, I made it to the ER in time and I did bounce back after a few days.  I was on heavy duty IV antibiotics for 3 days before they could even consider removing my gall bladder.  I think this is where my issues started. 


I never let my body truly heal and recover.  Less than 6 weeks later I was in for another major surgery and another recovery process.  I truly don’t think my body ever healed and I’ve been struggling with systemic inflammation ever since.  It’s amazing how quickly my body adapted to this diet.  The weight loss was effortless.  Well, maybe not effortless if eating yummy delicious food is hard for you.  I think this diet works well for me because I LOVE vegetables, don’t love dairy or fruit and was gluten free for quite a while.  I never did well on diets with portion control because I was only eating when hungry yet I was ALWAYS hungry.  Now I eat my meal and sometimes have to remind myself that it’s dinner time hours later.


I do plan on continuing this diet for a while before reintroducing anything back in my diet.  I think my system needs more than 30 days to recover because of how long and how badly damaged it was.

Tuesday, January 29, 2013

Whole30: Days 27, 28, and 29


Tonight I’m blogging from my computer so I have a chance to actually elaborate.

we had plans to go to a farm show so it was leftover magic for lunch.  We had a blast and even trial ordered a basket from a local co-op.  I managed to get a bunch of London Broil on sale at the grocery store and we got a whole chicken at the farm show.  We were so hungry when we got home around 3:30 that we ate a bunch of leftovers and then just had a snack for supper.


Monday  is our full day of therapy and of course we had horrible weather.  I was not in the mood to cook so I just made Bilinksi’s chicken sausage, sautéed kale, and sautéed mushrooms and onions.  Monkey got his first tooth today!!! He has been sleeping horribly for a few days now.   Literally, we couldn’t even put him down a nap or he just screamed bloody murder.


Tuesday we went to story time and I completely forgot to pack a lunch. So I swung by the grocery store and took the kids to my Aunt’s house.  We had spring mix with grilled chicken, lemon and olive oil dressing and a navel orange.  Dinner was a little more exciting as we got our basket from the co-op!  I made fresh kale (which was amazing not bitter at all!) sautéed with garlic and EVOO, a bowl of fresh spinach which was starting to turn with dressing, Dijon Salmon (I cannot post a review because I HATE salmon, Hubs said it was okay), and baked apples.  I ended up eating leftover meatloaf.  I adventurously tried salmon but it was not for me.    The baked apples were fantastic. I sliced up some apples we bought at the farm show, placed them in a casserole dish and tossed with cinnamon and nutmeg.  I also spooned some coconut oil in for some moisture and fat.  Bake in the oven.  Next time I would cover it for a while, the top layer got a bit dry. 


I cannot believe tomorrow is our last day of the Whole30. I believe we will be continuing on it for a while but I’m excited to post all my stats and do a final summary.

Thursday, January 24, 2013

Whole30: Days 24, 25, and 26

Thursday was a semi relaxed day. Monkey received vaccines Wednesday afternoon so he cat napped all day. I made turkey chili and turkey meatloaf. We had the chili for supper over spring mix with a heaping scoop of fresh guacamole from Whole Foods.

Friday was a crazy day. They were predicting a possibly epic snowstorm, so after our therapist cancelled like usual, Hubs and I headed out to stock up. I've been looking for Coconut Cream Pie Larabars forever. They're the only ones I like and they're impossible to find. I did find the and we picked up so necessities from Whole Foods and Salmon. It was a leftover smorgasbord for lunch and dinner was Meatloaf with Brussels sprouts and spinach.

Saturday we had company coming for supper and Monkey had been having a particularly fussy day. He had some vaccines on Wednesday and they really seem to be screwing with him. I got him up from his nap with every intention of cooking, instead he fell asleep on me and I got yummy baby snuggles. For supper I made carrot ginger soup, carrot soufflé, pork roast, roasted turnips and salad.
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