The other day I was over at my friend’s house and her little boy was singing
“The B-I-B-L-E”. I laughed and told her that Charlotte had been babbling and that it sounded just like that song, but I didn’t really think anything of it. But then my friend told me they sing the song a lot at preschool (our kids go to the same school) so she probably was indeed singing it. Plus, it’s a Veggie Tales song, so Charlotte has heard it approximately 463,000 times.

It’s stuff like this that just amazes me- that she learns a song at school, and remembers it, and then sings it at home. Wow!

So hear ya go: “The B-I-B-L-E” by Charlotte, 14 months tomorrow.

Grayson is on Spring Break this week. He was in the hospital half of last week (while school was still in session) and Ryan was on break last week as well. We time things really well in this family, obviously.

Anyway, is it really only Tuesday? Because this Spring “Break” feels exactly the opposite of a break to me. We’ve actually spent a good chunk of the past two days out of the house. When I take both kids anywhere by myself, it mostly feels impossibly difficult, but impossibly difficult actually beats staying home and going stir crazy, so out we go.

Yesterday, I took Grayson to PT and Charlotte tagged along. The PT gym is a huge room filled with balls, toys, and things to climb on. We told Charlotte to go and have fun. She wasn’t impressed- she preferred pulling Kleenex out of the box and attempting to steal the therapist’s evaluation paperwork, pen and cell phone.

Today, we went to Bible study, which is our normal Tuesday routine. Charlotte goes to the nursery, but I figured Grayson could tag along with me and listen to his headphones; I thought, he’ll be fine. Ha. We sat in the back, and soon the other ladies’ chairs blocked us in. Grayson made it through prayer requests until he got agitated and pukey. During the entire very, very long prayer, he gagged and whined while I said my own prayer that he would at least hold the vomit in until “Amen”. Finally, we were able to escape, and spent the next 30 minutes or so outside, singing and enjoying the beautiful weather. It was actually pretty perfect- it’s not often I get to spend alone time with my sweet boy.

Because the weather was so beautiful today (finally!) my sister in law and I made plans to walk with the kids at Rice University, which we do fairly often. It’s a whole big production to get over there and get the kids loaded and comfortable in the double stroller. After a ridiculously long ordeal of adjusting straps, getting snacks, music, and puke rags ready, we start toward the track. But oh hey, why is the stroller so lopsided? Answer: Flat tire. Seriously? Oh well, who needs exercise and sunshine anyway? We had a lovely little playdate at Baby Theo’s house instead. You can see my children are prim and proper at all times. Yikes.

Tomorrow Grayson has PT again and we have an afternoon play date, Thursday a play date, and Friday G sees his Mito specialist. Yes, I use my friends and Grayson’s doctors to save me from Spring Break. Kidding- sort of.

And just for fun- I have to post this video- it’s short and sweet but I think it might be my favorite ever. Charlotte has a favorite new word, and I think it’s the sweetest little word from the sweetest little girl. (Listen close).

Grayson will be 3 1/2 in just a few days. It’s hard for me to process this, and not just because he’s getting so old (he’s getting so old!), but because of how drastically different 3 1/2 year old Grayson is from 2 1/2 year old Grayson.

This was Grayson just a year ago, and then today.

Some may not notice the significant change in these images, but the difference to me is startling, crushing. And these are just pictures. This disease just keeps on taking my son’s life, little by little. Sometimes it steals chunks at a time, like that horrible day last April. But most of the time it’s tiny pieces- his thumb sucking, his head control, his ability to roll over easily, and his smile. He still smiles, but not often, and we have to really work for it.

And his eyes. The eyes that used to captivate and sparkle are now sad and tired. Tired of the vomiting, tired of the pain. Tired of hospital stays and so many needle pokes.

I’m tired too. I look at Grayson’s future and much of it looks bleak: more hospital stays, pain and uncertainty for a boy whose body is getting bigger, but less functional. And yet, that future must be what the future is, it has to be. The alternative is too unbearable to wrap my brain and emotions around.

I know I write about this all the time, but this is where I am stuck. I need Grayson’s life to mean something good- for him. I want him to wake up every morning and be glad to be alive, despite his body that can’t lift itself up and violently vomits its stomach contents while his nurse or I hold him tight. I want him to enjoy the sun on his face when we go to the park.  I want him to feel secure when he hears the voices of the people he knows, even though he might not be able to see us. And I want him to believe, like I do, that every day, no matter how hard or painful, is worth fighting for.

Grayson is in the hospital. I sensed all weekend we were headed that way- he was just “off” to me. A little too much crying, a random fever in the middle of the night, and some unscheduled naps told me something was up.

Grayson’s labs look ok (or, at least they did this morning), he hasn’t run a fever since yesterday, and yet, he’s sick. Crying. Vomiting. And just a few minutes ago, seizing.

I’ve held him a lot the last two days. I held him on the couch while he slept, trying to decide if we really needed to go to the ER (yes, we did). I held him in the ER bed while he cried himself to sleep after being poked multiple times to get a good IV. And this afternoon I held him in the uncomfortable chair beside his hospital crib as he wretched and vomited violently.

I’ve heard parents say sometimes they like it when their kids are sick for a day or two because of all the sweet, cuddly snuggles. And I get it. The snuggles are wonderful. But for me, it’s bittersweet because my kid will always be sick.

Hospital stays are hard. They just are. They are a complete disruption of life, a logistical nightmare if you have more than one kid, expensive (we easily spend $100+ on food and parking in just a few days), and emotionally and physically exhausting.

Ryan’s spring break is this week. In one way, it makes life easier because there has been one available parent per kid . But it’s also sad and incredibly unfair- for Ryan and for us. We had talked about taking the kids to the zoo- but instead, we have a really great aerial view of the zoo from the 10th floor of the hospital across the street.

Earlier today, I thought for sure Grayson would come home tonight. But a few minutes ago, Ryan texted that he’d had a bad seizure (his first since his last hospital stay) and he’ll be staying another night and even moving rooms to be more closely monitored.

Sigh.

This morning, I read this post  by my friend Esperanza, and I’ve been thinking about it all day. Go read it. You’ll be glad you did. And I in no way have anything earthshattering or original to add to any conversation regarding infant feeding, but here are my thoughts anyway, should you choose to continue reading this post.

Frankly, I’m SO OVER the breast vs. bottle part of the mommy wars. And really, I’m lucky. I’ve never had any negative feedback about how I feed or fed my babies: breast, bottle, and tube (and I’m still doing all 3!). This probably has some to do with the area of the country I live in, but more to do with the people by which I surround myself and associate with. By far, the person who pressured me to breastfeed the most (or really, at all) was myself.

I agree with Esperanza in that women who are successful at breastfeeding do so in part because they are privileged in ways that they may or may not be conscious of. Able-bodiness is one of these privileges. Grayson was physically unable to breastfeed; therefore, we didn’t. (If your baby is able to breastfeed, or really, eat by mouth at all, you are blessed). I don’t respond well to the breast pump, and would never have been able to produce enough for his needs. With Charlotte, I exclusively breastfed her until she was 4 months old, but again my physical limitations forced us to supplement. I simply was not making enough milk for her.

Charlotte has had formula for 9 months. A LOT of formula. She loves it (and yes, I realize I’m supposed to be transitioning her to milk…transitions take me awhile). She’s also had breast milk for 13 months. In a perfect world, sure, I wouldn’t have spent approximately $1 million dollars (may be a slight exaggeration) on formula and 1 million hours washing bottles, but my life is far from perfect. If you compare breast milk with formula simply as substances, of course breast milk is a superior food. But the fact is there are so many other factors that go into infant feeding than simply the substance the infant is ingesting.

I am very aware that still breastfeeding my 13 month old is a gift and a privilege. I’m privileged that she is still interested in it, that it’s a tool I can use for comfort (huge bonus lately during toddler tantrums!), and that I’m able to still provide her with the health benefits of breast milk. I’m privileged to be home with her- the privilege of time is a huge factor that I don’t take for granted. I’m privileged that my husband is and always has been supportive of both bottle and breastfeeding. And it’s a gift that Charlotte healthy and she’s thriving.

It’s been awhile since I’ve written about breastfeeding- my first experience was so traumatic, but that was a lifetime ago. The wounds have healed, and we’ve all moved on. So when I see debates still raging from both sides, I just shake my head and roll my eyes. Feed your babies however works best for you, and move on. And don’t make others feel bad about their choices if they happen to be different from yours.

Another privilege I have: SPELL CHECK. In writing this post, I realize I have NO IDEA how to spell Privilege. I want it to have a “d” before the “e”. Embarrassing.

And one last privilege: living in close proximity to Chick-Fil-A and their cookies. Charlotte agrees with me (I think CFA cookies rank up there with breast milk in the “best” category).

It’s been awhile. I didn’t take a blogging break on purpose, but the last few weeks have kind of flown by and I’ve done a lot of going to bed at an embarrassingly early hour instead of opening up my laptop in the evening.

And the truth is, I just haven’t had much to say. 2014 is proving to be much kinder than 2013 was and life is pretty great right now. And isn’t it sad that the words flow much easier when things are rough than when life is just coasting along?

And as I typed that last paragraph, I panicked for half a second. Things don’t just cruise along for us very often. The other shoe always drops at some point.

Grayson, my sweetness, is actually doing fairly well right now. His seizures have stayed away, I’m getting great reports from his therapists, and he generally seems content and comfortable most of the time. His vomiting is terrible right now- we’re back to 4-5 times a day- but we deal with it and he deals with it and we move on with our day.

Of course I’m still struggling with Grayson’s life- what it all means. I don’t and probably will never understand why such a precious boy should have such extreme limitations and miss out on so much. But I really do try and focus on the good- like the “mmmm” sound of content he makes when I start singing “This is the Day” and the way he rests his head on my chest while we sing. Or the half smile he gets on his face sometimes when little sister gets right in his face to give him a hug.

And gosh, he’s still just so. dang. cute.

And speaking of cute…Charlotte. Oh, Charlotte. Sometimes I can’t even handle the cuteness. Yes, she’s a MESS, yes, she is the reason I usually am in bed before most of the city’s toddlers, but oh my word, I love my days with this girl.

Her words and phrases are the best. The last few mornings I’ve picked her up out of her crib to about 10 rounds of “Hi” and then a hug. “Hi”, hug. “Hi”, hug…etc. Adorable. She’s also learned how to use the phrase “Uh Oh” in (proper?) context: i.e. she throws her food or her cup on the floor, looks down, then looks at me and “Uh Oh” very dramatically.

I hope I never forget exactly how my precious girl is at this age.

I am doing well too. I’ve lost some weight, finally bought new jeans that fit, taught my first essential oils class and made some exciting summer plans. Oh and Scandal is back, and I may or may not have watched last Thursday’s episode three times. Yep, I’ll take life just as it is right now.

Except I would prefer temperatures in March to be slightly above 30 degrees.

Dear Charlotte,

It’s been a month since your birthday, and in that month, despite me being in denial at times, you have become a toddler. You are strong willed, have many, many opinions about everything, and are testing boundaries like crazy right now.

I will be honest, it’s been a tough few weeks. These days, I am exhausted at the end of the day, and sometimes you drifting off to sleep in my arms for the night feels like a huge relief. I am trying so hard to be consistent with you, to be understanding and loving and yet not let you get away with things that are unsafe or just obnoxious. It’s hard.

But despite all your crazy antics and epic meltdowns (over what, I’m never quite sure), you are sweet, and kind, and loving. You give the best hugs and kisses, especially to your brother. My heart explodes when I see you loving Grayson. We come downstairs in the morning and immediately you point to his room, ready to go say hi to him and give him a hug. You are always so excited to see him when we pick him up from school, saying “Hi G, Hi G” with a wave. Lately, I’ve seen his face light up when you hug him; I think he’s finally coming around to you, especially since you seem to understand now that you shouldn’t pull his hair or poke his eyes.

You aren’t walking yet, and really don’t seem to have any real interest in it. I really think you could do it if you wanted to, but crawling, or getting everyone to carry you everywhere suits you just fine. I’m excited for you to walk, but at the same time, want to hold onto these last precious parts of what’s left of your babyhood, so we’re just not going to be in any hurry for that.

Your third tooth made its appearance yesterday, and is slowly making its way through your poor gum. I’m going to blame a good percentage of your meltdowns so far this week on teething- sound good?

I weighed you the other night, and I can’t remember exactly, but you were still right at around 20 pounds. Your hair is growing, and you have the most precious wispy curls in the back. You wear size 12-18 month clothing, size 4 diapers and size 3 shoes.

You are still nursing several times a day and drinking 3 bottles a day. Your eating has stalled lately because you think it’s a good idea to throw all your food off your highchair tray onto the floor instead of putting it in your mouth. This is a phase I would like to fast-forward through please. Today, I warned your teacher at school what you’ve been doing and not to expect you to eat much of your lunch. When I picked you up, she informed me that you’d eaten your entire lunch- every last bite. Little Stinker. Of course, when I fed  you dinner, you ate 4 blackberries and your chicken and tortilla ended up on the floor.

Charlotte, you make me laugh, you make me crazy, and you make me see what is so good in this world. I love you so, so much and absolutely adore this adventure you and I are on. Happy 13 months, sweetest girl.

Love,
Mommy

A little over a year ago, I attended an introductory class on essential oils. I had heard the term EOs, but really had no idea what they were. I learned that EOs are natural substances from plants that have huge therapeutic and medicinal uses. While I was really interested and wanting to try them, I had a lot of life changes happening at the time (having a baby, moving…)and I put off placing an order until last fall.

I started using the DoTerra brand oils right away, and quickly became addicted to both using the oils for myself and my family and learning more about their uses.

Essential oils can be used for literally everything. You can use them to treat acute and chronic health problems, prevent illness, treat anxiety and depression, clean your house without toxic substances, and make all-natural beauty and baby products. You can even cook with essential oils.

I will admit I am still somewhat of a novice, and am still experimenting every day with my own growing collection of oils. But I have been amazed at the way they have transformed the way I think about and treat health issues in my family.

For example:

• I diffuse OnGuard protective blend in Charlotte’s room every night and rub it on her and Grayson’s feet every morning and night. It has been proven that this blend is able to kill both bacteria and viruses. While yes, she has been sick, Charlotte has never had to see a doctor or take any pharmaceutical drug for illness. If I could only have one oil, I would have OnGuard.
• I have successfully treated all of Charlotte’s fevers with peppermint oil. I believe fevers are a GOOD thing and using fever reducers just suppress the fever and don’t allow the fever to do its job. Plus, fever reducers have chemicals and cause side effects, as do all pharmaceutical medications. Peppermint oil lowers the temperature of the fever without suppressing it, and makes Charlotte more comfortable.
• I diffuse frankincense oil several times a week, and have read about it’s ability to treat seizure disorders. Grayson did not have a single seizure from the time I started diffusing the frankincense until the day a few weeks ago where he had to be hospitalized for a serious illness (which most likely lowered his seizure threshold)
• I use a single drop of lavender oil in Charlotte’s bath every night and also use a body butter with lavender on her skin at bedtime. It calms her and most of the time she has no issues falling and staying asleep. (I cringe even typing this because you know how much toddlers LOVE to make liars out of us. Sleep, sweet C, sleep)
• I put a single drop of lemon oil in a pitcher of water and it gives the water the most delicious, refreshing flavor. Lemon also has a huge list of health benefits, and you can use it for cleaning. It’s also great for drying up runny noses.
• I have several oil blends I have used to help with my stress and anxiety, as well as just to lift my general mood. They work, they really do!

I am in no way opposed to western medicine. I have deep respect for Grayson’s doctors and he is alive and functioning today because of interventions and medications. And because of his Mitochondrial Disease, I have to look at his symptoms and the way I treat them differently than I do Charlotte’s. I do, however, question where we as a society are headed (or really, where we already are) when we run to the doctor and/or the pharmacy for every single health issue, when we do have the option of treating most things naturally first.

Because I am so excited about using essential oils, I have decided I want to start teaching others about them. I love to teach, and actually miss the teaching part of my former job (the grading and paperwork, not so much). I’m still learning from more experienced teachers/experts and am so excited that I’m hosting an Introduction to Essential Oils class at my house next Thursday. The class will be taught by Nicole Vincent, who is an expert on all things oils! I am so looking forward to her presentation and learning even more.

If you are in the Houston area, I would love for you to join us. There will be no pressure to purchase any products, but there will be an opportunity to buy oils at wholesale prices. Come out, listen, and decide for yourself if this is something you’d like to try for your family. If you would like to attend, please message me on Facebook, email me, or leave a comment on this post and I will get in touch with you to give you the details.

If you aren’t local, but are interested in learning more or trying DoTerra oils for yourself, comment or email me and I can answer any questions (or find out the answer if I don’t know it) and help you place an order.

I have read a lot of infertility blogs over the past few years, and a theme that comes up time and time again is one I am beginning to relate to in my own life. Mothers who are parenting after struggling with infertility often feel guilt when the child they fought so hard for frustrates and exhausts them, and they just want to escape for awhile. Some feel pressure to be grateful every minute of every day that they have this miracle child, and somehow not enjoying and reveling in even the extremely hard moments is a self-imposed sin.

I get it, I really do. My miracle baby- my surprise blessing, whose very presence makes life brighter, more fun, and most of the time a complete joy- nearly gave me a nervous breakdown this weekend.

Friday night was awful.  Charlotte, whose fever from Thursday was gone, went to bed with a minor cough and some sniffles, but was otherwise seemingly on the mend. But starting at about 11:00 pm, she was awake every hour, screaming. She wouldn’t nurse, wouldn’t take a bottle, and worst of all, absolutely refused to go to her daddy. Oh and she wouldn’t get in bed with us. (What is it with my children not wanting to sleep in Mommy and Daddy’s bed? Grayson never would as a baby either. Even if we wanted to co-sleep, which we don’t unless it means SLEEP on nights like this, our kids are staunchly opposed to the idea).

At one point, I felt complete and utter desperation and hopelessness and told my husband that I had absolutely no idea what to do with this pitiful creature arching her back and screaming in my ear.

After a few hours of screaming and Charlotte slapping at her ear, I determined she must have an earache. I dragged poor Ryan into the kitchen at 2:00 am and gave him step by step instructions to chop fresh garlic and heat it with olive oil on the stove to make ear drops (yes, people, I am becoming crunchier by the day). Thankfully, the drops worked their magic and we were able to get a few hours of sleep, except for the 2 or 3 times we were up with Grayson, whose own cold and stuffy nose is making him throw up more than usual.

Under the best of circumstances, I do not do well when I haven’t slept (I also think I require more sleep than the average person to function).  After days of being sick myself and caring for a sick baby and chronically sick kid, I was just done. Physically hurting and emotionally checked out. I just wanted to escape somewhere, preferably buried under about ten layers of covers in a dark, dark room.

Charlotte is also testing me with her behavior. She will go over to Grayson, look at me and grin, and pull on his tube. I know she’s wanting a reaction from me, which she gets in this case. She’s also started this oh-so-fun phase of throwing almost every bit of food I offer her on the floor. My as-of-a-week-ago excellent eater has now only eaten waffles, blueberries and cheese the past few days. Everything else gets tossed on the floor (where’s a dog when we need one?!). Since I truly believe I have PTSD when it comes to infant feeding, my mind of course jumps to She will never eat again. That’s it, she’s going to need a feeding tube. I mean, so ridiculous I KNOW but that’s what Grayson’s ordeal has done to me.

I’m tired, I’m frustrated, and I need a break. But just like a survivor of infertility, I feel guilty. I’ve survived (so far) parenting a child with severe eating problems, complicated medical needs, and severe physical limitations. And now I have this gift, this perfectly healthy, normal almost-toddler, doing perfectly normal things, and testing boundaries. And I feel like I should feel nothing but gratitude, embracing her normalness. But normal is not always easy, is it?

Logically, I know that my brain is being irrational. All parents get frustrated, tired and need a break. But should I hold myself to a higher standard and set the bar of patience higher with Charlotte because of what I’ve been through with Grayson? Or because they are such completely different creatures and caring for them requires completely different skill sets should I not base my patience with one on my experience with the other?

I don’t know if I’ll every completely answer these questions, but maybe for now, since they are both in bed asleep, I should go bury myself under those covers in my own dark room. Tomorrow is a new day.