Dear Charlotte,

Happy, Happy Birthday to my baby girl! It really has been a whirlwind year, and I can’t believe we are already at the 12 month point in your life! What an absolutely amazing, joyful experience it’s been adding you to our family- we love you so and are so, so glad you are you!

You have grown and changed this year so very much- from a tiny 7 pound, 1 oz newborn to a 20 pound, 3 oz 1 year old! You are now 29 inches tall and are in size 12 month clothing and size 3 diapers. You have 2 bottom teeth and your hair is definitely getting longer and flipping up on the ends- adorable! You still drink three 8 ounce bottles a day and nurse 2-3 times, but are slowly starting to eat more solids to replace the milk.

I made a list of the words you can say, and there are 12 that you use consistently. You will mimic words and even phrases a lot too- I can’t wait to see how your vocabulary explodes in the coming months!

You are such a sweet little sister. Grayson is one of your favorite people and if he’s in the room, you want to be near him or on top of him. You give him hugs and kisses, talk to him, and pat his back when he’s not feeling well. I love watching you love him, even if I do have to intervene between you two quite a bit!

We are now in our new house and you have transitioned really well. You are sleeping well at night and taking good naps. You love climbing the stairs, cruising on the furniture, and sneaking into Grayson’s room to get into whatever you can!

I’ve been looking back at the hundreds and hundreds of pictures taken of you this year. Looking at you as a tiny newborn makes me wistful, but I absolutely love the little bundle of spunk that you have become. You are sassy, opinionated, sometimes exasperating, but you are also funny, sensitive, cuddly, and so, so sweet. I couldn’t love you more if I tried.

Happy, Happy Birthday sweet Charlotte Faith. I love you to the moon and back.

Love,
Mommy

In ONE WEEK my daughter will be one. ONE! However, Charlotte is not wasting time diving headfirst and fearlessly into toddlerhood. Sadly, unless she’s fallen asleep in my arms right before I put her down for the night, she has no resemblance to the tiny baby who slept soundly on my chest for hours at a time less than 365 days ago.

 Let’s be honest, this will be my first experience raising a toddler. Sure, I’ve been around toddlers a lot the past 3 years. I’ve read about them on blogs, seen frustrating tweets about their antics, and witnessed my friends corralling their own little people. But my own 3 year old was never a toddler. Obviously, he never “toddled”, but there’s also the fact that I never had to try and reason with him about things that were totally unreasonable, wipe his dirty bottom while he contorted himself into unnatural positions and tried to escape, have food thrown in my face or on the floor, or dealt with ohmygodistheworldendingbecauseyouarescreamingsoloud tantrums. I guess in these aspects, you could consider Grayson “easy” (ha).

So here we go. Lately, Charlotte has been giving me a preview of what’s in store for us over the next few years. And yes, I know we haven’t even scratched the surface of toddlerhood yet. Just wait until she starts walking, right? Eeeeek!

This morning, we didn’t have Grayson’s nurse, so I had to get both kids ready solo. This is doable, but difficult. Grayson’s morning routine involves a lot of medication in syringes (which you know Charlotte is very interested in), changing his diaper, his undershirt onesie, getting him dressed, refilling his feeding bag, combing his hair and putting on his AFOs and shoes. And he’s extremely stiff in the morning and can’t “help” at all, so it takes time. With no distractions or Charnado in the mix, it takes 30-40 minutes.

Enter Charnado to the scene.

I get Grayson out of bed, but him in his baby gym and turn on his Veggie Tales. He’s happy as a clam. I turn off his feeding pump and unhook the tube from the extension. Charlotte makes a beeline for the pole, pulls herself up on it, and it crashes to the ground and she hits her face on the floor. Screaming commences.

I’m giving Grayson his medicine and Charlotte is all up in our business, trying to help. She takes each empty syringe one by one, and either puts them in her mouth or tries to give them to Grayson in his button (smart girl). When she’s tired of that she crawls over to the pole again, grabs the hanging tube, flings it, and formula starts flying all over the room- aaaa! I take it away from her. More screams.

I then go to change Grayson’s diaper and Charlotte, once again being a big helper, starts pulling the wipes out of the box one by one. Then she decides that Grayson’s face needs a cleaning. He LOVES that (sarcasm font). I remove her from his presence. Screaming.

Charlotte finds my purse on the couch and empties the contents all over the floor. She takes all the cards from my wallet one by one and tosses them around the room and under the couch. Then she finds some homeopathic flu beadlet things in a container and starts shaking it like it’s a maraca at music class. I let her do it.

While I’m putting Grayson’s clothes on, Charlotte decides the socks that have been on her feet for the last hour are no longer acceptable and frantically tries to pull them off. They are the good kind that don’t come off (ha) but again, this causes more screaming.

I put Grayson in his orange chair to comb his hair. Charlotte wants her hair combed too and she thinks it’s hilarious that I alternate between combing her hair and Grayson’s. It’s pretty cute, until she decides she wants to do it herself and starts combing Grayson’s face.

Grayson starts throwing up. While I’m holding his head and a towel underneath it to catch the vomit, Charlotte takes this opportunity to pull up on her brother, laugh manically, and pull his hair.

I then put Grayson in his beanbag chair. Charlotte races over and climbs on top of him and starts bouncing and saying “Hi Gray Hi Gray”. Adorable accept for the fact that my poor defenseless boy is totally getting pounded on his stomach, just moments after vomiting.

At this point, I’m feeling a tad exasperated with her but I consciously make a huge effort to control my emotions- this is, after all, normal. And after Grayson, I will forever be thankful for normal. So instead of saying “No” for the hundredth time in 30 minutes, I put Grayson’s headphones on him, scooped Charlotte up, and I turned on a praise song I downloaded yesterday after hearing it at church. We listened to that song 3 times and danced around the living room. It was fun, calmed us both down, and gave poor Grayson a break from his sister’s relentless “affections”.

These are the words to the song I played:
What can I do but thank You,
What can I do but give my life to You
Hallelujah, hallelujah
What can I do but praise You,
Everyday make everything I do a hallelujah
A hallelujah, hallelujah

Because really, what can I do? Not much about Charnado, evidently. But I can be thankful and praise God that she is who she is, a sweet, precious, healthy whirlwind of an almost-toddler, who surely is going to make life very interesting in the years to come.

I love this girl.

The quilt on the bed (where Grayson’s nurse sleeps) is a hand-me-down from my friend- I love giving and receiving hand-me-downs; sometimes they are better/more special than brand new! My mom bought him the blackout curtains for Christmas and G’s been napping great because we are able to keep the room so dark. The alphabet picture on the wall was a gift from the same friend as the quilt.

This built in bookshelf may look a little cluttered, but everything on it has special significance and I love that all the items represent a special part or time in Grayson’s life. Below the shelf are cabinets where we are keeping all his medication and medical supplies: feeding bags, syringes, etc. I love that it’s all contained in one place and we can prepare his meds right in his room.

This quilt that hangs on the back of Grayson’s bed was his Christmas present from his Aunt Robin. It’s so beautiful, and of course includes his beloved Veggie Tales. Robin also made quilts for me and Charlotte- she is so talented and we love them (and her)!

I had the picture of the beads Grayson received at the Beads of Courage event printed on a canvas and framed the invitation- they are hanging right over the head of his bed. That was such a special night and I love having a reminder of it every time I go in the room.

Grayson’s nickname he was given at 5 days old that definitely stuck.

This is a little part of the room devoted to two of the most special gifts Grayson has ever received, based on the poem “Welcome to Holland”. If you haven’t been reading my blog long, go read this post about the picture- it will give you chills. The wooden shoes were a Christmas gift this year from Grayson’s Aunt Brittany. They are actual wooden shoes from Holland and she had an artist friend personalize them just for Grayson. I could not possibly love them more.

This is Grayson’s shower- I’m showing it because it’s definitely a miracle that his chair just barely fit!

I saw this sign at Hob.by Lob.by a few months ago and knew I just had to have it for Grayson’s room.

I meant to take a few pictures of the actual human who lives in this room, but I forgot at bedtime and I don’t want to risk waking him. I’m sure there will be plenty in the future though- hoping for many happy days ahead!

SRB is hosting a challenge this winter focusing on CLUTTER. Oh my, do me and clutter have a history. This challenge actually comes at the perfect time since 1. we just moved and have already gotten rid of a huge percentage of our belongings and 2. it’s January, and I’m super motivated to take charge of several areas of my life.

Stuff suffocates me. I definitely have a physical reaction to clutter; my blood pressure rises and I sometimes feel like I am having an anxiety attack when confronted with it. However, I don’t think I’ve had the skills or true motivation until now to truly simplify and consistently deal with it. But I really want to change that. I have a medically fragile 3 year old who requires round the clock care and an almost 1 year old on the verge of toddlerhood who requires um, a lot of time and attention. I’m working on my marriage, my friendships, and the health of my family. These are my priorities. I simply do not have time for a ton of extra stuff that for the most part just drags me down.

I’m sentimental. I have a hard time letting go of personal items, like pictures, cards, journals, etc. Thankfully, most of these things are now digital, stored neatly on this laptop. I love my kids’ teeny tiny baby clothes, but I’ve found I get so much joy from passing them down and seeing new babies wearing them- much more than when they just sit in a closet, taking up space. I’ve relentlessly parted with toys, most of them toys that Grayson never played with. Some of them Charlotte is now playing with, but especially since we have downsized in square footage, I just don’t want a lot of extra toys just laying around. Charlotte much prefers to play with medical supplies and iphones anyway!

I believe I’ve done a really good job at cutting out the unnecessary stuff that we just don’t need, but now I need help managing the stuff that’s hanging around. For the challenge, we are supposed to post pictures of the areas that need attention- as is, no straightening. I’m posting a picture of our “pantry”- we no longer have a walk in pantry, which I think may be a blessing in disguise. With a huge amount of space to store food (and in our case, totally random items we seldom if ever used) our pantry in our last house was a nightmare. I really want to keep the cabinet we are keeping food in organized, neat, and cost effective.

I’ve gone grocery shopping once in the week we’ve lived here, and honestly, I just threw everything in the cabinet. Here is its current state:

Yes, I know. BAD.

SRB challenged us to really look at the photo(s) we post and think about the EMOTIONS they bring out. This pictures accurately depicts how I feel about my ability to feed my family: CHAOS! I don’t know if any of it has to do with Grayson and his journey to being exclusively tube fed, or just my feelings of inadequacy when it comes to shopping for and cooking good meals. In any case, the clutter in this cabinet is telling.

And I want to change it.

Welp. It’s nine days into the new year, and I haven’t forgotten my goals for 2014 yet and still feel what I think is an acceptable amount of motivation.  I’m not dead, so that’s something (see Goal #1).

I guess our biggest accomplishment so far this year is we have officially moved.  Part of me thought it really was never going to happen, but it did, and it’s actually been a nice, smooth transition so far. We’ve had a few unexpected expenses- that is how we roll, after all- but I’m trying to just roll my eyes instead of freak out at the fact that our TV broke in transport and our dryer is gas and this is an all-electric house, so we’ll have to get a new one. I do get a little rage-y, however, when I think about the fact that we had to pay our $500 deductible plus part of the cost for a rental car to get my van fixed for the accident that wasn’t my fault. The police report said it was unable to be determined who was at fault, event though the other driver admitted fault at the scene before the police got there. Ugh. I guess I should be thankful that I now have my car back, and this whole mess is over.

The kids have transitioned well. We’ve been in the new house since Saturday, and Charlotte has had some random meltdowns and has been a little more clingy than normal, but overall is doing fine. Grayson hasn’t seemed to be affected negatively at all- and he loves his new bed. My favorite thing is I can actually climb in his bed and snuggle with him- something I’ve never been able to do before! I am still waiting to hang a few more things on his wall and I will post pictures of his room.

The food situation is good right now. Food, I’ve discovered, really stresses me out. I feel so much pressure when it comes to feeding Charlotte the right foods, and being consistent about it. Ryan and I are doing a 30 day challenge where we are drinking 2 meal replacement shakes a day and then eating a healthy dinner. My friend brought us groceries to make several dinners as a house warming gift (the best!) and I did go to the grocery store with Charlotte on Tuesday for meals for the rest of the week. I just need to keep at it and be consistent- I can do this! It really helps that Charlotte is a really good eater (I can’t say enough good things about Baby Led Weaning) and will eat anything we put in front of her.

The next few weeks are going to be a whirlwind- Grayson has an appointment tomorrow with his Mito doctor and his surgery is next week. And in 11 days a certain little miss will be turning ONE! I have so many thoughts and emotions about this and should really devote a whole post to it, but it’s just so amazing to me how quickly babyhood goes. It truly has been in a blink.

So that’s life at the moment. I’ve been staring at this post for awhile now thinking well, this is kind of boring. But right now, that’s a good thing. Boring is GOOD!

A few months ago, Grayson’s physical therapist asked if we’d ever had any imaging done on his hips (we hadn’t). She had attended a conference and learned about a surgery that she thought might help him. As you know, Grayson’s spasticity (tightness and stiffness) has progressively gotten worse and worse. It’s very difficult to put him in any kind of sitting position, carry him, and change his diaper because he squeezes his knees together so tightly and stiffens his legs.

We contacted the doctor who our PT had heard at the conference. After doing some online research, I learned he is one of only two doctors in the country who do this surgery, and he’s located less than an hour from us! After reviewing Grayson’s X-ray, he called me for a phone conference and said that Grayson is a candidate for the surgery. We saw him today in clinic and reviewed the procedure and he examined Grayson so he could determine exactly what parts of his legs he can improve/loosen.

Basically, Grayson squeezes his knees together so tightly that it is slowly causing his hips to dislocate. While he isn’t in a great deal of pain because of it right now, if we don’t do anything about it, he will be at some point. The surgery will involve nerve blocks in his groin/hip area to loosen and relax the muscles. He will also have a nerve block in his thighs which hopefully will lessen the extreme stiffness we see especially in the late afternoon. Finally, he will have the procedure on his ankles, which the doctor claims will make his AFOs (ankle foot orthotics- his ankle braces) more comfortable. Right now, G flexes his toes downward in an unnatural/awkward position.

The surgery is called Selective Percutaneous Myofascial Lengthening (SPML). This is the best article I’ve found on the procedure, in case you want to read about it.

Grayson is scheduled for surgery in two weeks. I’m nervous because it’s not at “our” hospital, and I’m always nervous about anesthesia, but I’m also excited about the possibility of seeing some significant improvement in G’s quality of life and our ability to take care of him.

Have any of my Mito friends/readers heard of this surgery or had any experience with it? I found a FB group dedicated to the procedure, but haven’t found anyone with Mito who has had it done.

Sweet boy was an angel waiting for the doctor today

Thank you all for your comments and support on my last post. Yes, 2013 was a pretty crappy year, but in 3.5 hours it will be over. So, ONWARD.

I’ve been reading a lot of New Years resolutions/goals posts today and have been thinking about my own. The last thing I want to do is create unnecessary stress and anxiety for myself, but I think it’s healthy to have some sort of an idea of the things I want to accomplish this year.

So, for what it’s worth, here are my goals for the coming year:

1. Don’t die.

2. Update and organize my “In Case I Die (or happen to go on vacation)” binder on Grayson’s day-to-day care

3. Go on a vacation. I really want to go to the UMDF symposium this year, a girls’ trip with my bestie, and a trip to North Carolina- my cousins are both having babies this year! All three are probably unrealistic, but maybe at least one…

4. Be intentional and responsible with money. We have already taken several steps to cut back on spending (getting rid of cable, trading in my van for an older model) but I want to do more.

5. Be generous. Buy more gifts for people and give more to church.

6. Learn to grocery shop and cook. I am the world’s worst meal planner, and need to learn how, especially since I have a little person now who eats actual food, not round-the-clock formula from a can.

7. Keep the clutter OUT. Over the past year, we have drastically cut down on our amount of possessions, and it feels so good. Since I am a disorganized, messy person by nature, the less stuff I have to keep in its place, the better.

8. Eat better. You know, more whole foods, fruits and vegetables, less processed stuff. I’m doing a 30 day challenge in January to hopefully jump start this for me, and I’m also hoping I can lose about 5 pounds this month.

9. Read/research and implement more natural health remedies and preventative care. I’ve recently started using essential oils and want to do a lot more with them.

10. Blog at least 3 times/week.

11. Start early and plan thoughtful, intentional Christmas gifts for family and friends. I received amazing gifts this year and want to do the same for my people next year.

12. Take better care of myself. I want to find some good hair products, buy some clothes, and try to look less old and haggard.

Well, I was trying to think of 2 more so I could have 14 goals for ’14, but I’m tired and out of ideas. Yes, I am that person who is in bed asleep by 10:00 on New Years Eve. No shame.

Happy New Year, ya’ll!

2013 has been the hardest year of my life in all aspects: physical, emotional, financial, relational, and spiritual. It’s been a roller coaster of one incredible high but many, many lows. I’m really hoping that this particular ride is now over and I’m praying for a calm, peaceful, uneventful 2014.

First, the high.Twenty days into this year a little girl burst on the scene and instantly fit right into our family like a missing puzzle piece. Any doubts I had about being able to love a second child as much as my first completely vanished within those first few hours of holding my daughter. Each and every day, Charlotte continues to heal the part of my heart that was sliced right open in my first two years of parenting. Charlotte is the embodiment of God’s grace; she is a living, breathing gift- a gift I needed this year more than anything.

In the midst of the excitement of welcoming a new family member and the turmoil of unexpected events, I’ve been watching helplessly as Grayson, my sweet boy, is slowly slipping away. We started off the year with several bad seizures and illnesses resulting in hospitalizations; in fact, it wasn’t until July that we got a month’s respite from a hospital stay. In late April, I dropped my boy off at school and headed for a day at the beach. Little did I know, that afternoon a huge seizure and serious illness would suddenly and violently steal so much from my boy, and we were lucky it didn’t steal his life. Since that day, Grayson has stopped responding to his name or to a smile with one of his own. He no longer can push himself up to a crawling position, and he continues to lose control of his head. His body is awkward, heavy and incredibly stiff. He vomits 4 or more times a day and cannot hold small objects in his hands. Perhaps in some way the other circumstances of this year have been a good distraction, because the tragedy of what is happening to my son right in front of me is mentally and emotionally devastating.

I’ve spent a good part of this year angry. Angry about Grayson and the raw deal he has in life. I’ve been faced with secrets and broken trust, behavior from people that I just can’t make sense of, and circumstances beyond my control that leave me wanting to bang my head in frustration. I’ve been angry at myself- questioning and regretting lots of decisions made that I can’t take back, and embarrassment and shame at my own selfishness and apparent inability to forgive, accept what is, and move on. I’d like to say I’m moving past the anger and entering 2014 with a clean slate, but it’s not true. I’m still pretty pissed off about a lot of things, and some of these things just aren’t getting better.

I’ve heard true character is revealed in the hard times. I really don’t know what this year says about my character. In some ways, I think I’ve handled a lot of our challenges with grace, but in others, not at all. I panic about money and then find it impossible to be generous, even though I’ve been given so much. Some days I look at Grayson and feel such despair and hopelessness, and just want to scream at God, the universe, and everyone in the world who has only healthy children. I’m tired, drained, and feel like I have nothing to give to anyone, including myself.

My hope for the coming year is peace. I want peace for myself, which I know includes forgiveness. I want peace and comfort for Grayson. We are planning a surgery for Grayson in January that I pray will improve his quality of life and our ability to care for him. I want peace for our new home, our marriage, and our finances. I want to celebrate the incredible first year of my daughter, and enter into her toddler years with confidence and excitement for all she is going to learn.

Goodbye 2013. You blessed me, cursed me, and changed me. You will not be missed. Hello, 2014. Please be kind.

Well, it looks like we may actually be moving in a few days. If you remember, we closed on our house in late October, but it’s been two long months of repairs and rehab, most of it unexpected. We were lucky to have childcare the last two days, so Ryan and I spent yesterday and today unpacking and putting things in place. This weekend, we are hiring a handyman to finish the painting and repair the hole in Charlotte’s ceiling where the new heater/AC went in a few weeks ago.

Grayson’s room is almost finished. I can’t explain how much I love it. The walls and built-in shelves are filled with pictures, books, and special gifts given to our special boy. His new bed is ready to be slept in, and we have a bed right beside it for his nurse. His closet is big enough to keep all his medical supplies, and he has his very own bathroom. I will post pictures soon, but I am so excited for Grayson to have a personal, functional room again.

We are moving to a significantly smaller space, so one of the biggest challenges has been purging unnecessary stuff. As it turns out, we have a lot of that. Today, I finally resigned myself to the fact that I will probably never be a size 2 again, and filled 3 huge trashbags of clothes to donate. It actually felt really good to haul those bags downstairs. Letting go, moving on. Another thing we discovered when unpacking our kitchen stuff is we are drinking glass hoarders, particularly wine glasses and beer mugs. Since at this particular point in time the sippy cup is way more utilized in our house than the beer mug, off to Goodwill 90% of those (as well as quite a few extra dishes) went.

This move is definitely bittersweet. I don’t particularly like big changes, and while I’m excited, I’m also sad. I know it’s not ideal to live with one’s parents for an extended period of time, but it really has been nice. My mom has been a huge help with the kids, an emotional support to me in what has been the hardest year of my life, and is just good company. I know I’m going to be lonely without her around. And I’m worried about Charlotte and my mom- those two are BFFs. I think they are both going to have withdrawals from each other. I don’t know what Charlotte is going to do without her fun Grammie around to spoil her and I don’t know what my mom is going to do without those constant sweet baby snuggles!

There’s still a lot to do, but we should be totally moved in about a week! New  year, new house, new beginnings!

Merry Christmas! We’ve had a great few days with family and I’ll share more in a later post, but here are Grayson and Charlotte’s annual letters from Santa, always a highlight of our Christmas.

I think that God may have put you and me on this earth for the same reason.  You know, the N. Pole is not the easiest place to live and work, and I am not the youngest or fittest person to be lifting all of those packages.  I have come to realize, however, that God made me a part of Christmas to remind us all that

I can see that power in your mother and father.  Every day you are dressed and groomed.  Every day you are delivered to school.  Every day you are sung to.  Every day you are loved. The fact that you can’t do those things for yourself does not stop them from happening, because it is the will of the God who made us that “my grace is sufficient for you”. 

Santa

I know that the coming year will again be a big one for you and your family.  God puts children in families so that they may grow in wisdom and stature and has given you a special one for that purpose.  It is my privilege to watch you grow and especially to see you smile.  Merry Christmas.

Love,
Santa