Worn

I was driving to the hospital this morning to pick up Grayson and his nurse from his sleep study (it went fine) and this song came on the radio. I’ve heard it a million times but never really paid attention to the lyrics, until this morning. Tears flooded my eyes because this song is exactly how I feel right now. I’m tired, stressed, sad, and often wonder when the struggling is going to end. Yes, I do have a lot of joy in my life, but lately I feel like the sadness and stress (especially over Grayson’s undeniable regression- it feels as though he’s slowly slipping away) is winning.

“Worn” by Tenth Avenue North
I’m Tired I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world

And I know that you can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn

I know I need to lift my eyes up
But I’m too weak
Life just won’t let up
And I know that you can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn

My prayers are wearing thin
Yeah, I’m worn
Even before the day begins
Yeah, I’m worn
I’ve lost my will to fight
I’m worn
So, heaven come and flood my eyes

Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause all that’s dead inside will be reborn

Though I’m worn
Yeah I’m worn

In My Dreams

When I dream about Grayson, my dreams are so vivid, so full of color, and so real. In them, Grayson is almost always free of disease and disability; he walks, he talks, and he’s into everything.

A few nights ago in my dream, he was pointing to and naming my eyes, nose and mouth. And then he gave me a hug. I so wanted it to be real.

In my dreams Grayson doesn’t have a tube, and his legs work. They don’t just allow him to walk, but they are also free from the horrible stiffness and pain that in real life we can’t eliminate for him.

I choose to see these dreams as gifts rather than dwell on them being illusions. Because someday, not this side of eternity, this boy will walk, and talk. He will be tube free, and pain free, and will hug me. Oh, and he will point out my nose.

Grayson is doing a sleep study tonight at the hospital. I am home with his little sister, and he is there with his nurse. I hope his dreams tonight are as sweet as mine.

(Sort of) Wordless Wednesday: Avacado

After my post last week about how I am scared about starting solids with Charlotte, I had several friends encourage me just to take the plunge and do it. Plus I am slightly concerned about Charlotte’s weight right now, so I know any extra calories I can get in her will be a good thing.

This morning after I dropped Grayson off at school, we had a mid-morning free-for-all with an avocado. I chose avocado as her “first food” (minus the goat cheese she tasted Friday) because it’s so healthy and full of good fat amazingly delicious and in my opinion just about the best food ever. I hoped that Charlotte would agree.

I am planning on doing Baby Led Weaning; I have the book but haven’t read it yet- oops. But I know it’s all about offering the baby chunks of food instead of purees and letting them explore the textures and figure out food mostly on their own. So I kind of just cut up the avocado in pieces and let her go at it. She mostly played with and smeared the avocado everywhere, but the little she did get in her mouth (my mom helped her out a little) she really seemed to enjoy.

Hooray for food and messy mornings!

(I also had to go back and take a bittersweet look at my post on Grayson’s first food. Oh, my heart. Also, he had so much more hair at this age than Charlotte does!)

Our Weekend in Bullet Points and Pictures

It was a good weekend!

  • My lunch date had her first bite of real food on Friday: goat cheese from my salad. How hip and trendy of her, huh? She loved it!

  • Grayson has started a new medication. We are doing a 30 day trial to see if he is a “responder” and if we should continue it on a long term basis. I really am not sure how he should be responding to this medication, but he’s definitely responding. By random and spontaneous laughing. Weirdest (and most precious) side effect EVER. He laughed the entire way to school on Friday. When we got there, I captured a few seconds on video. I’m actually going to send this to his doctor and see what she thinks, but I am hoping it’s either my friend’s theory that it’s making him feel so good he has to laugh, or my SIL’s theory that it’s something supernatural. Anyway, could he be any cuter? I think not.

  • Friday morning, I signed up Charlotte for Mother’s Day out. She will go one day a week starting in the fall. She was such a big girl in her brother’s stroller getting the tour of the school!

 
  • I made my first Pinterest project on Saturday (gotta love fabric glue!)
  • Remember how I mentioned that Charlotte had become the world’s worst sleeper, waking up approximately 47 times per night? I think I may have solved the problem (oh please don’t let it be jinxed because I just typed that). Apparently she was not ready not to be swaddled. Friday night I swaddled her, she feel straight to sleep and only woke up twice. Last night, just once. Yipee! The fact that we took her swimming last night before bed may also have had something to do with her great sleeping- I think it wore her out!
  • Charlotte also went to the nursery at church for the first time this morning (gosh, I just realized this was a big weekend for her). She was so cute and summery I had to take a pic of her posing with Daddy before church.
  • I went “back to work” today. I love my job, and haven’t really worked for 5 months. Let me tell you, that job is a TON easier than my full time one! It was nice to have a few hours away doing something completely different than caring for babies.
  • I know I haven’t posted much about Grayson in this post…besides his bizarre laughing, there’s not much to report on him (that’s a GOOD thing). My sister is here and she snapped this picture of him Saturday morning-if his finger is in his mouth, you know he’s pleased about something. And obviously I did not style his hair, but I’m digging his little alfalfa sprout. Oh, how I love this little guy.

That was our weekend- how was yours?
 


Letters to Charlotte: 5 Months

Dear Charlotte,

Oh sweet baby girl, you are already 5 months old? How can that be? I can’t imagine or really remember life without you, but it still seems like yesterday that you were my tiny newborn.

Everywhere we go, people stop and tell me how beautiful you are with your sweet petite features, soft brown hair, and million dollar smile. And your spunky personality matches your prettiness; you love to interact with people more than anything.

You currently weigh 11 pounds 14 ounces and are 25 inches  long. You are still in 3 month clothes, although I am dying for you to fit into your 6 month size summer wardrobe. I just switched you to size 2 diapers this week, but only because we ran out of size 1s and I didn’t want to buy more. You are tiny but mighty!

You still nurse every 2-3 hours, and are currently refusing a bottle, which is tons of fun when Mommy wants or needs to leave you with someone else for a few hours! Your sleeping is horrendous right now (just keepin’ it real, girlfriend). You now sleep on your tummy, which is great, but when you wake up, you are MAD. I’m not ready to do any cry it out just yet, but I’m warning you, it’s coming if you don’t start sleeping at night!

You are curious, and are ready to be on the move! You already change positions and move yourself around quicker than I can keep up- I have a feeling I will be doing a lot of chasing in a few months!

So this is another new thing- sucking on your fingers. I really would prefer you would find your thumb instead, but hey, these days whatever makes you happy is good with me!

You can’t stand being in your (baby sized) bumbo and try to flip yourself out of it every time, but you like to sit in Grayson’s big bumbo and will happily sit and play with toys or just look around when you are in it. I guess you want to do what Grayson does; you love him so much and I love how each day you two seem to be forming a closer bond.

Happy, happy 5 months my precious girl. I can’t wait to see what this month is going to bring!

Love,
Mommy

A Little Scared

Charlotte has had a developmental explosion this week. She has gone from acting like I’ve put her on hot coals every time I suggest tummy time to willingly rolling to her tummy to…gasp…play with toys.

 She’s also figured out she can get places by rolling. She’s pushing up, reaching for things, and bringing anything that touches her fingers to her mouth.

She’s also been full of DRAAAAAMMMMMA and lots and lots of tears. She screams, she cries, and she kicks her little legs in protest. Her sleeping has been horrible the last week (at least 4-5 wakings at night, and if I’m lucky, 45 minute naps during the day). I texted a few friends yesterday morning asking if it was bedtime yet. Um, it was 7:30 am.

Sweet Grayson is usually just oblivious to his sister’s screams

 I was talking to my mom on the phone yesterday (she’s been out of town for a week) and telling her all this and she suggested that Charlotte may be overwhelmed with herself regarding all her new skills. That while learning new things is wonderful and exciting, it can also be a little scary.

Yeah, I can relate. Typical development is tripping.me.out.

I’ve been a mom for almost 3 years, but everything Charlotte learns and does is basically brand new to me. Having a baby that meets milestones and learns new things every day is completely foreign to everything I’ve experienced so far. And I’m a little scared.

I don’t know what to do with a baby that’s mobile. I have a hard enough time getting things done with my babies who right now basically stay in the same spot where I put them. I’ve never had to baby proof a thing- what if I overlook something and she gets hurt?

Oh and the FOOD thing. Terrified. After Grayson’s eating issues, I think I have PTSD when it comes to feeding babies. Charlotte will be 5 months old tomorrow- I am planning on introducing solids at 6 months. That gives me ONE MONTH left of “easy” feeding. I have a hard enough time getting the 3 of us dressed and out the door in the morning; now I’m going to have to fit in baby breakfast too (well and eventually lunch and dinner) and I have no clue how this is going to work.

I know a lot of you are probably rolling your eyes because you do this already, and it just is what it is. You chase your babies and toddlers all day. You offer them food, and they either eat it, refuse it, or throw it on the floor. You’ve baby proofed, but you don’t live in a bubble, and somehow your kids are still alive. I get it.

Yes, Grayson is incredibly difficult to care for in a lot of ways. But he and his needs are all I’ve known. And now I’m having to learn a completely different little person with different needs, and while it’s thrilling and exciting, it’s overwhelming. So I’m going to try and give this precious little person a break when she loses it again today. Maybe I’ll just cry a little along with her. And then we’ll pick ourselves up and keep learning new things. And we’ll be ok.

By the way, is “Chewing on Brother’s Foot” an expected milestone? (I die laughing looking at Grayson’s expression in this video)

Alex

A good friend invited me to a small candlelight vigil that was held Sunday night to remember and honor the life of Alex Spourdalakis. Alex’s story has been front and center in the Autism community, but unfortunately did not attract the mainstream national news media.

This is one of the initial news stories released after Alex’s death. We now know that Alex’s life was taken by his own mother, a woman who apparently felt like she had no other choice. Her son was sick, in pain, and was violent. She tried to get him medical help; but in her perspective, the medical community would not help her. So she took his life, and tried in vain to take her own.

I am really struggling what to think about all this, especially after holding a candle in Alex’s memory. It’s easy for me to look at this mother in absolute horror for what she did. And I do. I can’t imagine feeling like I had no other options to end my child’s suffering than to take his life.

But one of the reasons I can’t imagine it is I do have options that Dorothy Spourdalakis did not have. I live in a comfortable home (albeit not my own right now). My son has access to whatever medical equipment and medication he needs to keep him comfortable. I am surrounded by loving family and friends who are willing to help with whatever we need. My son has some of the best doctors in the country managing his care. I have respite. I have a strong faith.

If every one of these things were taken away, and I still had my sick child to care for, it would be an incredibly desperate situation.

So while I try and make sense of this, which may never happen, I am reminded how incredibly grateful I am for my community, top notch medical care, and faith.

Rest in peace, Alex. You won’t be forgotten.

Father’s Day 2013

We had a nice Father’s Day weekend. Saturday, Ryan drove a load of our stuff that was in storage to the ranch and was gone all day, so the kids and I did a little (very quick) photo session to make his present- I thought it turned out really cute.

I dressed Grayson and Charlotte again in their sweet matching outfits for church this morning- they love their Daddy!

After an afternoon of playing (and NO NAPS, sigh)…

This little one finally gave in and decided her Daddy needed some sweet snuggles while she snoozed

And this little monkey demanded LOTS of singing, all day. Notice that even though he can’t talk, he can certainly express what he wants. (Please excuse my horrible singing- this is the best I have after singing the same song 25,545 times today)

A special Father’s Day shout out to my dad, who not only is sharing his home and putting up with our craziness right now, but also scored a 144 point word against me on Words with Friends a few minutes ago (I blame the no nap afternoon for allowing that to happen!).

Say a little prayer for G-Man tomorrow- he’s having a sedated MRI in the morning to let us know how his disease has progressed. We have to be at the hospital at 5:30 am- which obviously will be lots of fun!

Hope you and all the dads in your life had a great day!

A New Version of Me

I have a new blog name! I had lots of good suggestions, but I think this one fits my journey at this point. Right now, I will still be blogging here at this address. I will probably switch over to WordPress eventually, but want to get my site set up exactly how I want it before I switch over there permanently. Plus, I realized how much I am attached to this little space- it’s going to be hard to change and leave it behind.

My dear friend Lisa actually came up with the new name. She and I were college roommates and were obsessed with the show Felicity…were you? Anyway, Lisa texted me that she was watching old episodes on Netflix, heard the intro song, and had the perfect name! Remember this?…

So while I’m not running off to New York chasing a guy I’ve spoken to once (although the running to New York part sounds tempting), I am definitely a different version of myself than when I started this blog almost three years ago. Physically, my body is softer and more disheveled, with two babies and not a lot of time or motivation to spend on my appearance. Mentally and emotionally, I’m stronger than I was, but not as strong as most people think I am. I’m definitely worlds more educated and informed on topics I would have never dreamed I would be interested (or forced to be interested) in.

I have the TimeHop app on my phone, which lets me see what I posted on Facebook on this date in years past. It’s so interesting to read old blog posts, especially my thoughts on Grayson before he was diagnosed, and even before we had any idea at all what was wrong. I’m often wistful for the version of myself who (for example, today, two years ago) worried about Grayson being small and teased for being small, and worried when he would sit up on his own. Instead, today I worry how long he has until our next hospital stay, and ultimately, how long he will live.

I’m sure as time goes on, I will continue to change and there will be new “versions” of myself. I hope someday I will have dreams and goals for myself outside of motherhood, besides my current lofty dream of a full night’s uninterrupted sleep. But honestly, I’m okay with where I am right now. I’m doing what I always wanted to do, and truly love being Grayson and Charlotte’s mom.

As always, thank you for reading, commenting, and supporting. Love you all!

The Rest of the Week

What. A. Week.

Grayson came home from the hospital late Friday night. I guess he was finally (literally) tired of hanging out in the hospital crib, and finally decided to get his act together and give us a dirty diaper and tolerate his feeds at full rate.

Image

I don’t think I have thought about, texted about, talked about, and prayed about POOP in all of my days combined as I have this week. I’m done. Can I please have a week (or month) off from diaper duty?

Early in Grayson’s stay, it was determined his main problem this time was clogged plumbing. Three enemas, three suppositories, and five days FINALLY got things moving. And now, well, they are moving. And moving, and moving. And little sister decided to join the party and got a touch of the stomach bug and has had multiple diaper blowouts the last few days as well. Including one all over her new smocked dress as we were about to walk out the door to church this morning. Sigh.

After spending all day with Grayson Thursday, I came down with the stomach bug myself and spent that night hugging the toilet. I’m just now starting to feel myself again. Sitting in the hospital for hours, and hours and hours is exhausting, and stressful, and I’m not surprised I got sick. I’m hoping this week I can catch up on my rest and really get completely well.

Grayson had a seizure in the hospital on Thursday. I was changing his diaper and it started with no warning. I was impressed and comforted how fast the team of doctors caring for him got to his room. They gave him medicine through his IV that stopped the seizure almost immediately, which I was also very much impressed me.

I spent the day Friday home with my sick little girl, trying to make both our tummies feel better. Ryan had his last day of school, so my amazing mom had Grayson duty at the hospital all day. He had an EEG and an Upper GI during the day and was discharged in the evening. Friday afternoon, I called the pediatrician just to touch base about Charlotte, and she recommended I bring her in to be checked out because it was going in to the weekend. It ended up being a total wasted trip because my silly girl was the smile-iest, squealiest, happy, NOT SICK baby you ever saw during her exam. I think the doctor (not our regular pedi) thought I was crazy. Her advice: keep nursing her. OK, thanks for that $25 copay advice. Oy.

So here we are, Sunday again. Grayson missed his entire first week of summer school last week; I told him that was his summer vacation. Praying for a healthy, happy, BORING upcoming week!