Letters To Charlotte: 13 Months

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

Essential Oils

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.

Gratefulness and Guilt

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.

Hard Day

It’s been one of those days where my whole focus has been Get to bedtime. Just make it to bedtime. Of course, on these days the clock gets lazy, and takes its sweet time arriving at that magical hour, taunting me while my children whine, and cling, and deposit their bodily fluids all over me.

I love, adore, and cherish my babies, but today was one of those days where I thought: Two kids. Yep, I think I’m good.

Grayson had an appointment scheduled this morning to get his casts off from his surgery and then get casted for new AFOs. Then I got a call Tuesday “reminding” me that he also had an EKG and echocardiogram scheduled at the hospital at noon. Hmmm…news to me, but okay. (I did know we were getting these routine tests done at some point, I just hadn’t gotten a call with a firm date). Charlotte had school today, so it was going to be no big deal, and fortunately the times were right that we could make both appointments. My mom would just have to pick Charlotte up from school.

Not so fast. Charlotte had been running a fever and coughing since Tuesday, but I thought surely she was going to wake up good as new this morning. Ha. When she woke up crying and feverish about 10:00 last night, I knew school was a no-go. Cue scrambling for a new plan. The thought of taking my sick one year old with us to two medical appointments honestly made me want to cry. Fortunately, Ryan knows me and volunteered to take the day off to help. The only problem is he had to be back for his athletic period because tonight is his first softball game.

What we ended up doing was Ryan and Grayson’s nurse took G to his orthotics appointment, then they drove to the hospital. Ryan signed all the consents and left G and his nurse there and came home to switch cars. My mom came over when she was able to stay with Charlotte and I made my way to the hospital. By the time I got there, they were finished, so I just picked them up (didn’t have to pay for parking!) and we drove home.

By this time it was about 2:45. Poor sick Charlotte who was fine as long as I was holding her, standing up. Otherwise- SCREAMING, tears, and snot. And there was Grayson, who had not napped at all but wanted nothing to do with a nap at this point. Grayson, who also wanted to be held, and sang to, and didn’t want to share his mommy with his hot-mess of a sister. And Grayson, who between 3:00 and 5:00, managed to fall out of his chair three times and face plant on the floor. Sigh. We really need to figure out how to get him a new chair.

We survived, I guess. Both children are asleep at the moment, and I’m probably not far behind them. I think I have a touch of whatever Charlotte is fighting, and I know that made today just that much harder. And I’m reading this and thinking- this is not that big a deal. I have been through so much worse as a mom. Why was today so hard?

I think today really wore on my emotions. I don’t like missing Grayson’s appointments, and hearing information second hand. I want to be the one to hold him and comfort him during tests, not his nurse. I hate Charlotte being sick; rationally, I know she’s healthy and it’s normal- kids get sick, but there’s always this underlying fear that something will be wrong with her too. And I don’t like being stuck at home nearly all day- I like our routine, our scheduled days, and I feel suffocated when we are home too many hours in a row.

So tonight, I am praying both my babies SLEEP THROUGH THE NIGHT and wake up well and happy. That’s not too much to ask right? We have things to do tomorrow- save me!

Feeding Tube Awareness: How It All Works

So evidently it’s Feeding Tube Awareness week again; I guess I haven’t been paying too close attention to the FTA Facebook page lately, because I only realized it was this week when one of my friends posted about it this morning. Oops.

I think I’ve posted enough about Grayson’s feeding tube that you know my general feeling about it- what a huge blessing it was when he got it and how it continues to be a blessing. I mean, my kid is alive in part because of his tube. Sure it’s annoying because he’s fed continuously, so he’s always attached to it, and sure I get sad and wistful when I see Charlotte enjoying all sorts of foods that Grayson will never taste, but overall, I love his tube.

I probably won’t be posting all week, because honestly, I think you and I would both get bored with seven feeding-tube-related posts. If you are interested in Grayson’s feeding tube story, my 2012 post can be found here and my 2013 post can be found here. But I did want to participate in Day 1, which challenges us to make a video.

These videos show the 2 main functions of Grayson’s feeding tube: feeding and giving medication. I tried to explain the parts of his tube/button and how we set up a feed, and how we give medication through the tube as clearly as possible. And this is real life people; I decided to do this about 20 minutes before getting Grayson ready for bed- I’m in lounge clothes and a ponytail, Charlotte is screeching in the background through most of the videos, and of course we have Veggie Tales playing. Also special thanks to Ryan for being a good sport and filming these oh-so-professional clips.

Enjoy, and please feel free to ask any questions you have about the tube!

Feeding:

Medication:

Another Loss

Sometime in the last few weeks, Grayson stopped sucking his thumb. And not because he wanted to, or because he outgrew the habit. Because he can’t suck his thumb anymore. When he gets tired or hears a song he loves, he gives a thumbs up to the air and brings his thumb to his mouth, but the coordination between his tongue, lips and thumb is just…gone.

It’s heartbreaking.

And then there have been a few times where his thumb makes it inside his mouth, and his teeth clench down and he bites himself- hard. And because his brain evidently doesn’t know how to tell his teeth to let go, he screams in agony, all while still clenched on that thumb.

Our goal for Grayson is his comfort- to make his life as happy and pain free as we can. The loss of this self-soother is a huge loss.

Today when I picked G up from school, his teacher told me she’s noticed he doesn’t chew on his chew toys anymore. I’m heartbroken but I’m also scared. If he’s lost his sucking and chewing reflexes, what’s next? Swallowing?

I had a meeting with Grayson’s physical therapist today and we ordered him some equipment: a stander, a neck collar because his head is so floppy, and a “real” wheelchair. We’ve had a medical stroller for a year and a half now, but it’s no longer offering enough support to a boy who is getting bigger but not stronger. We also discussed what kind of chair I should get for hanging out around the house, because the big Bumbo we have just isn’t supporting him anymore.

A week from today Grayson will get his casts removed and be fitted for new AFOs that will hold his feet and ankles in position, even though he will never walk on them. The week after that we have an appointment with his pediatrician where I will ask her to write a letter of medical necessity to get diapers covered, because he will never be potty trained.

I hope he knows, really knows, beneath the body that betrays him and won’t really allow him to show us that he knows, that he is loved. So loved. I don’t think there exists a boy who is more adored. There are no answers, nothing that really makes it any better. But there are moments like this, when his sister, who has no filter or restraint in her adoration of her brother, greets him in the morning with a squeal and a hug.

And yeah, that makes it a little bit better.

Ladybug Week and UMDF Walk

What a fun, inspiring few days we’ve had!

Yesterday, the Mito clinic where Grayson receives his care hosted the author of this precious book The Gift of the Ladybug for a “Ladybug Party” complete with ladybug crafts, snacks, and book reading and signing.

Ideally, I would have loved to bring Grayson to the party, but let’s be real here. Taking him out of school just to have him sit for an hour and listen to his Veggie Tales while tuning everything and everyone out (and probably throwing up a few times too) is not my idea of fun, for him or me.
 
So I brought this little lady(bug) instead! I was thinking about it today, and it makes me so happy that Charlotte is a part of this wonderful community- a community that THANK GOD she is one step removed from, but one that will most certainly shape and influence her entire life. I love that the people we have met because of horrible circumstances are some of the most honest, loving, funny, and just fun-to-be-around people in my world.
 
The author of The Gift of the Ladybug is Carole Amber, and she has the sweetest, spunkiest personality- I instantly fell in love with her. Carole’s son TJ passed away five years ago to Leigh’s Syndrome, and she wrote the book to him and for him. Her reality is my future, and the way she is living her life- full of JOY and kindness, is nothing short of inspiring.
 
 Carole said several times that TJ “taught me how to live.” YES. Grayson has taught and is teaching me how to live. Slow down. Sing. Connect with people. Cuddle. Give. Laugh.
 
 And speaking of people who know how to LIVE, this is our friend K. K has Mitochondrial Disease, but that doesn’t stop her from making every day the “Best Day Ever!” She was chosen to go on a special adventure with Carole after the party yesterday, and ohmyword I had to watch the video her mom posted of her reaction to that surprise more than a few times. Priceless. Carole and K were also interviewed on the news this morning, and tell me- does K not have the best explanation of Mito ever?! Love her.


 We left with signed copies of the book for both Grayson and Charlotte- Grayson’s copy is definitely going in a special place in his room!

Today was the UMDF Energy for Life Walk. We joined the Mito clinic’s team and enjoyed the relatively warm weather and visiting with friends. Carole was at the walk again signing books, and I was so happy to introduce her to Grayson. While we were waiting to talk to her, I looked down and saw something crawling on Charlotte’s arm- a LADYBUG. Seriously, gives me chills to think about it.

There was a family at the walk with a service dog- a beautiful Golden Retriever. Charlotte was smitten. Anytime she saw that dog she was frantically wave her arms and squeal. We had to go “pet the pretty doggy” about 20 times- ha! Notice what she has in her hands? She held onto those two syringes from the time we left our house until we got back in the car to go home. It’s a strange world we live in, what can I say…

 
 

Grayson gives the walk a high five! I’m so glad we got to participate in both events this weekend- good times had by all!

To read more about the book and all things ladybugs, visit http://www.giftoftheladybug.org/. And buy the book! It’s a precious story with a wonderful message.

Who Needs It? Challenge #2: Get Real

As I mentioned in this post, the amazing SRB (who you should definitely be following if you aren’t yet) is hosting a challenge for bloggers to deal with and hopefully get rid of unnecessary clutter in their lives. She’s had an amazing response, showing just how prevalent this issue is.

Obviously, clutter is tied to emotions and psychology- just turn on any episode of Hoarders and it’s plain as day that the person’s problems really aren’t about the stuff. So for Challenge #2, SRB has posed some questions, asking us to GET REAL about the underlying EMOTIONS tied to all this STUFF. For tonight, I’m going to tackle just one.

  • What is your emotional experience regarding your clutter? (For example, guilt, anxiety, anger, ambivalence, apathy, etc)

Guilt- yep. Ugh, why did I buy this in the first place? I spent money, which we do not have a lot of, on this, and now I want to get rid of it? Why didn’t I eat this bag of spinach/leftover pasta/lunch meat before it spoiled? This was a gift- I CAN’T get rid of it, right? No, Grayson never played with this toy, and it’s still brand new, so it would be terrible if I didn’t give Charlotte a chance to play with it, right?

Anxiety- yep. I touched on this before. I am an anxious person by nature, and I’m also not naturally organized. I lose stuff ALL THE TIME which drives me insane. I especially have anxiety when my kitchen isn’t clean. I will clean my kitchen three times a day and run half loads of dishes so I don’t have dirty dishes sitting around. I’m still trying to figure out why this is- why do I avoid and let go other areas of my house but get so anal about my kitchen? Also, I get anxious about the future. Financially, things are really tight, and I hold on to items “just in case” we need them later. And then there’s the huge looming question: will we have a third child someday? Should I hold onto all this baby gear if/when that happens?

Embarrassment- I’m embarrassed I’m 34 years old and still haven’t figured out how to be organized. I’m ashamed I let papers pile up and random homeless items pile up in junk drawers or the garage. I will say, I am much less embarrassed to have people over now that we don’t have the dogs. That’s awful to say, because I loved the dogs so much and really miss them (miss them, but don’t miss them, ya know?) but it’s wonderful to not have my house smell like dog, have dog hair stuck to everything and worry about my dogs annoying my guests.

Anger- As I said above, I’m not neat or organized naturally, which I look at as a character flaw a lot of the time. And it makes me angry. SO MUCH of my life feels out of control and I feel like I should be able to control the state of my home and the things I allow to take up space in it. But sometimes I feel so inadequate, and it feels like the stuff, the mess, the clutter- is winning.

Ahhh, big sigh. It feels good to get all that out! Now, to actually channel all this EMOTION into actually paring the house down to things we need and really love. The challenge continues…