Wow, I haven’t posted in over a week- not because I haven’t wanted to, but just because I was having major writer’s block and nothing really that interesting has happened to us in the last week. Which honestly, is a good thing. It’s been nice to have a vacation from crisis es! So because nothing that interesting has happened, and I don’t really have one topic to write about, I present another bullet point post of randomness…

• Thank you everyone who offered me encouragement and understanding on my last post. It’s nice to know I’m not the only one who gets bored. This week has been better- I am back to making a habit of planning at least one out-of-the-house outing a day. And Tuesday, my amazing friend B came over with her daughter and stayed with Grayson while I went and had lunch with a friend and got a long-overdue eyebrow wax. And even better, they wore the little guy out and he napped most of the afternoon- ahhhhh.
• My friend Esperanza posted this yesterday about an iphone app she had recently started using called Motivated Mom. It’s little pricey for an app ($7.99) but I went ahead a bought it today and I think it’s going to change my life. Each day, it gives a list of chores to do for that particular day. The idea is if you do a little each day you won’t be overwhelmed, and your house will stay clean. Well, let me just say after ONE DAY the house is already noticeably cleaner (and I know this because Ryan actually mentioned the house looking clean when he came home- yay!). And I know it’s totally mental, but having a checklist is SO motivating. It also lets you add chores not on the standard list- reluctantly I added “Poop Scoop” to be assigned weekly- bleh. But with 4 dogs, it MUST be done. One of my “chores” left for today is scrapbook/work on baby book. Ummm…does blogging count? I think yes.
• Speaking of iphone apps, I am still totally addicted to Words with Friends. And I’m worried this doing chores every day thing is going to cut into my WWF time. Priorities.
• And now for a downer. I have decided my very least favorite part of parenting is food. If my thoughts were in a pie chart, FOOD would be a really, really big chunk. And the thing is, my kid eats NOTHING. Literally, nothing. Well, except for the 770 mL of Pediasure being pumped directly into his stomach every day. It’s so, so frustrating, especially when he adamantly refuses the few foods he actually used to enjoy. And him being tube fed is really messing with my head. I have a hard time looking at other babies/toddlers and wrapping my mind around the fact that they get their nutrition through their mouths. That they don’t “eat” all night long while they are sleeping. That they aren’t connected to a backpack or pole most of the day. That they understand the connection between their tummies being hungry and food on their highchair tray satisfying that hunger.
• BUT, on the bright side, we are slowly transitioning to bolus feeds! So far we have done 2 hours on/2 hours off during the day and continuous at night. G has also done two 1 hour feeds (just doubling the rate of the 2 hour feed) and he has kept it down except for a little spit up this afternoon.
• G is having surgery two weeks from today- he’s having a muscle biopsy and getting his G button placed. I am having mixed emotions about the biopsy- I know it’s going to hopefully give us valuable diagnostic information, but ugh, POOR BABY. I am still waiting to hear back from audiology (I’ve left 2 messages with them and no response, grr) to see if they want to do G’s hearing test while he’s under anesthesia. The surgeon was concerned it may be too long a test to keep him under, so I really need to talk to them.
• We are going to a support group meeting on Saturday for families affected by mitochondrial disease. I am excited and nervous to meet people dealing with the same things we are.
• We’ve been doing a lot of swinging lately. Swinging inside, swinging in my arms, and swinging outside at the park. G is most happy when he’s in motion. See? Pure joy.

I was honest with myself today, and it felt good to get some hidden feelings to the surface and out so I could deal with them.

I saw my counselor today, and went into the session feeling blah. Usually I go into our sessions knowing what I want to tackle, but today I really didn’t. We usually talk about Grayson, our family, and my emotions concerning those two. I’ve written before about how she has helped me accept that although I couldn’t love my son more than I do, I am mourning the loss of the “typical” child I was expecting.

We talked about Christmas, and my unnecessary guilt that we didn’t give Grayson a big, splashy Christmas morning with a bunch of presents under the tree. My reasoning was G didn’t need any more toys (he doesn’t), we couldn’t afford a lot of presents (we can’t) and he wouldn’t have a clue anyway and couldn’t open packages (he didn’t). But then I saw posts of people’s magical Christmas mornings with their little ones SO excited about their loot and those made me sad. We did have a wonderful Christmas Eve with Ryan’s family and Christmas Day with mine, but Grayson melted down during Christmas Eve gifts and slept through most of Christmas Day present opening. So this just wasn’t our year. We’ll get there, and will have plenty of years worth of excitement and Santa gifts, so I just need to let 2011 go.

After that, we talked about the new year and getting back into the old routine, and like any good counselor, she picked  up on things that even I didn’t realize I was feeling. After a few minutes venting my frustrations about Grayson’s physical limitations, I admitted that I am….bored. The long hours Grayson and I spend at home consist of rotating him from one apparatus to the next- his excersaucer, therapy chair, bumbo, therapy stander, and swing. In general, he doesn’t tolerate any one of these for more than 5-10 minutes (except the swing) unless I am right beside him, entertaining him. We read books, but he wants to eat the pages. We work on eating, but it’s so frustrating because most times he refuses to get food anywhere near his mouth. We go on walks and he loves to swing at the neighborhood park, but I’m sad he isn’t climbing, exploring, or doing anything independently like a typical toddler.

I hate to admit that I’m bored. I feel like I’m insulting Grayson. But because he can’t sit up, crawl, or communicate verbally, I feel like I have a fifteen-month-old-five-month old. And five month olds are great- cute, cuddly, and in a lot of ways, easy. But what I would give to rescue Grayson from the top of the slide, chase him down as he grabs a handful of dog food from Hank’s bowl, or teach him to sing his ABCs. I know I need to celebrate every accomplishment he does make, no matter how small, and I do. But right now, I’m impatient, and feel like I’m not getting much back.

So the solution to this boredom and frustration? I need time to myself, a few hours a week, to get away and do something that doesn’t involve Grayson and his issues. I know, easier said than done. I can’t just enroll G in mothers day out because the structure wouldn’t be developmentally appropriate for him. Ideally, I really, really want to go back to the schedule we had July-October (up until he went in the hospital). I worked two days 8:00-3:00 and Grayson went to a little daycare center right up the road from where I work. It was perfect- we had plenty of time to get ready (I refuse to wake him up in the morning) and got home with a few hours to play/eat before bedtime. Then we had 3 days a week to do therapy, doctors appointments, playdates, and anything else we wanted to do. I am hoping after Grayson recovers from his surgery at the end of the month and is (hopefully) off continuous tube feeds during the day, he can go back to daycare.

Until then, I will keep treasuring the time I have with this sweet little boy and focus on being thankful that I am able to stay home with him and focus almost all my energy on meeting his needs. He may not be toddling yet, but he sure looks like a toddler now, doesn’t he? Cutie pie.

I’m the sort of person who remembers dates, especially year anniversaries of dates. I remember the date of my high school graduation, the date of my first date with Ryan, and the date I found out I was pregnant with Grayson.

One year ago today, December 30, 2010, is a date I will always remember. One year ago today my life and my family’s future changed significantly, although we had no idea at the time how significantly.

Grayson was 3 months old and had his first cold. He was coughing and congested, so I took him to the doctor. It was, of course, right before New Years and I wanted to make sure everything checked out before the holiday. He was given a prescription for his inhaler and we were told to use the bulb syringe, humidifier and saline drops until it cleared up.

Right as Dr. D and I were wrapping up our conversation, I hesitated, debating whether or not to even say anything. I remember my exact words.

“I know I’m probably being a paranoid new mom, but I wanted to ask you about a few things.”

I went on to tell her I’d noticed that Grayson wasn’t tracking with his eyes, that I sometimes noticed some strange movements of his eyes, and he had only about a week before started smiling.

Well, it turns out I wasn’t being a paranoid new mom. Not at all. In the last 365 days I’ve gone from being a new mom just trying to adjust to having a typical newborn to adjusting to life with a special needs kid with a list of symptoms and a team of doctors larger than I can count on both hands.

December 30, 2010. I was 3 months into my flight to Italy when the flight attendant softly whispered that the plane was being rerouted to Holland*, a beautiful country with tulips and little boys in wooden shoes.

My 2011, my new life, started a year ago today. 2011 has definitely been the hardest year of my life, but also the best. I’ve never been more tired, scared, and uncertain of the future, but I’ve also never felt more loved. I’ve watched my baby boy struggle to meet physical milestones and battle serious health issues, but I’ve also watched him learn to laugh, give kisses, and melt hearts wherever he goes.

I enter into 2012 with great uncertainty, but also great hope and anticipation. I pray that 2012 will be a year of clarity, but it could leave questions unanswered, and may bring a crop of new questions. What exactly is going on in Grayson’s little body? What does his future hold? Will he ever walk? Will we be able to have more children? are all questions I hope to have answered in 2012.

I’m not making any resolutions this year. 2011 taught me life happens the way it happens despite other plans. But I will live 2012 so that I have no regrets a year from now. I will love my family, laugh with my friends, and celebrate Grayson for what he can do, not what he can’t. I will continue to fight for my son so that he has the best care possible, and try not to worry too much about medical bills and other things I can’t control.

Despite everything, it’s been a good year. The best year.

*You can read about Holland and Italy here.

We’ve had a rough few days around here.

Last Thursday, Ryan got strep. Grayson and I avoided him as much as possible, but knew the chances of us not getting sick were pretty slim. Friday, I took Grayson to the doctor because he had the beginnings of a cold and cough, and I wanted to make sure he didn’t have strep. He didn’t, but was wheezing and his throat was red. We were told to use his inhaler and bring him back if it got worse.

Well, it’s definitely gotten worse. Yesterday, I found out I have strep, and I’ve been sicker the last two days than I have in a long time. I’ve these two days in bed/on the couch- thank goodness for my husband and mom who have taken care of Grayson, who has progressively gotten worse and worse. Oh and thank goodness for NyQuil, which makes me babble like a lunatic in a semi-conscious state, but gave me sweet relief from my burning throat and aching body.

Grayson is puking nonstop again. We think a lot of it is his cough- he coughs and it forces everything up. We’ve changed his clothes the past few days more times than I can count (which is even more annoying than a typical clothes change because of the tube) and I’m having flashbacks of October, when his vomiting became so bad we ended up in the hospital for 10 days.

Ryan took G back to the doctor this afternoon. He has an ear infection and bad chest cold. He got a breathing treatment during the visit, and Dr. D wants us to do his inhaler diligently every 4 hours. If his cough isn’t better by Saturday, she wants to do a chest X-ray. I’m frustrated because she didn’t have much to say about the vomiting, even though he had thrown up 6 times today before going in. And then on the way home, he threw up all over himself and his car seat, and then once more before we put him to bed.

I’m going to call his GI doctor in the morning, to see if he has any suggestions. We saw him on Tuesday, but the vomiting hadn’t really started yet. Update on that: once G gets over this hurdle, we are going to slowly start him on bolus feeds (more volume at once instead of continuous) and hopefully work our way to 4 bolus feeds during the day and then continuous feeds at night. We scheduled his procedure to get his G-button for January 26.

That afternoon, we met with the surgeon who will be doing the muscle biopsy. She does NOT want Grayson to be under anesthesia for both the button procedure and biopsy. The problem is the GI doc is with a different hospital system than the biopsy surgeon. So the surgeon wants to do the button herself while he’s under anesthesia anyway, and also do his ABR hearing test that we’ve had to cancel twice. So if it works out, we’ll be killing three birds with one stone. No word yet if our GI doc will be on board with this though.

But in the meantime, we’re just surviving around here. I hate that I’ve been so sick and unable to really be there for Grayson while he’s so sick too. I hope we can all get some sleep tonight- even though we’ll be up at 10:00 and 2:00 with G doing inhaler and meds- ugh!!!

Grayson received this letter on Christmas morning. He sure is blessed to have such a wonderful, loving grandfather Santa.

(You can read last year’s letter here.)

Dear Grayson,

Well, here I am again. Remember last year when I told you I added you to my list? Once on my list, always on my list. You can count on that.

I know you have not had much to celebrate this past year. Doctor appointments, trips to the emergency room, tubes down your nose, a hole in your stomach- not a whole lot there to remember with pleasure. But here I am on your roof again. You can count on that.

Which is the reason that everybody is celebrating now- something to count on. Many years ago a prophet named Isaiah said, “The people walking in darkness have seen a great light.” You see, back then there was also a lot of unpleasant stuff. The darkness of sickness, pain and disappointment has always tried to overcome us. Back then, however, there was no reason to believe that we had any choice to give in. One can not see very far in the dark.

But the God who loves us stepped in with-get this-a special child. I know the term is one that you and your mom and dad wish would go away, but the reason that you and I and everyone else are able to know more than darkness is because on that first Christmas we learned what special really means- God among us. He took all that sickness, pain and disappointment on himself and showed us all that the life he has given us is abundant, eternal and above all else, something we can count on. From that single light many years ago come all the lights you see today, all the songs, all the good wishes, and even a fat man in a red suit.

Your family is celebrating today because they too know that God is among us. they know it especially well this year because even as weariness and tubes came in and out, so did God’s promises and new strengths. Light always defeats darkness. You can count on that.

A man that visits every house in the world in a single evening also counts on nourishment, as do his reindeer (who also say hi). Thanks for the cookies and carrots and waffles. I especially like visiting a house where gaining weight is a good thing!

Enjoy this day with your family and continue to bring out the best in them. I will have my elves keep an eye on you and will be back myself next year. You can count on that.

Love,

Santa

Dear Grayson,

Happy 15 months little man! Once again, it’s been quite a whirlwind month. Besides your surgery and new-and-improved G-tube, the biggest happening this month is you are GROWING! You got a ton of 12 month clothes for your birthday that looked enormous at the time, but now they are all getting snug and the pants too short! I’m not sure of your exact weight, but I know it’s somewhere between 19 and 20 pounds.

I pick you up each morning out of your crib and you feel heavy. Since you aren’t sitting up on your own, we bathe you in the infant tub still, but you are like a fish that is too big for his tank- we are going to have to figure something else out soon.

Something else that is growing- your hair. Didn’t we just get it cut? I am trying to convince Daddy that it’s time for another trim, but he is being stubborn about it. But he’s not the one who has to do something with this bed-head every morning!

This month, you have discovered it’s fun to stick out your tongue. Anytime something really makes you happy or excites you, you stick out your tongue and get a mischievous look in your eyes. It’s so super cute.

You also LOVE to brush your teeth. We got you an electric toothbrush hoping to stimulate your mouth so you want to eat (no such luck) but you love to hold it and move it around in your mouth.

I told you you’re outgrowing your clothes!

Overall, you are doing really well. You’ve got such a sweet personality, love to give kisses, work so hard, and are getting stronger and learning new things every day. I really can’t believe you are about to celebrate your second Christmas in a few days.

Happy 15 Months and Merry Christmas sweet little Monster. You know how much I love and adore you.

Love,
Mommy

Today, I finally got my driver’s licence renewed, two months after it expired. To celebrate, I had this for dinner…

How cute is that mini bottle of champagne? Ryan bought a four-pack for me a few weeks ago, and surviving the DPS seemed good enough reason as any to make a little 6 pm mimosa. And I am convinced that the DPS exists solely to show sane, rational people that there is another way. This is evidenced by the large sign that read: “Numbers are not called in numerical order or in the order of arrival. If you don’t come immediately when your number is called, you lose your turn!” Talk about anxiety. I’m waiting for #61 to be called but hearing, “#2043 it is now your turn…#3 it is now your turn…#105 it is now your turn.” Finally, #61 was called and I made my way to the counter and the clerk who had definitely not gotten the memo that ’tis the season of merriment and good cheer.

I am depressed about my new picture. My old picture was decent- this new one, not so much. And mixed blessing- this one doesn’t expire until 2017. So I’m stuck with this horrible picture for at least the next 5 years (hopefully 10, if I get to renew online next time). And then I texted one of my besties afterwards about this and she gloated sweetly informed me that she got to renew hers online, so she gets to keep the pre-babies, 22-year old version of her picture.

So back to my husband, who does sweet things like buying me mini-champagne bottles and taking me to lunch after leaving the Twilight Zone, we had this gem of a conversation after dropping off the kiddo at my parents’ house and making the trip out to Rosenberg (a good 5 times the distance of the closer DPS office, but totally worth only waiting 1 hour instead of 4):

Me: I am so glad we get a little break this morning

Ryan: Yeah, G-Man is a lot of work. I don’t know how you do it day after day, all day long.

Me: Yes, but then when I’m not with him, I really, really miss him. I wish I could just hold him right now.

Ryan: Well, it’s because you are so used to having him with you all the time. It’s like underwear. If you left the house without it, you would feel weird, like something is missing.

Me: Hmmmm.

So evidently, Grayson=underwear. Can’t leave home without it.

Gotta love that guy.

And in case you were wondering, Grayson is doing fine, considering he already needs another haircut and has a hole in his stomach.

But his life is obviously exponentially more secure now that his driver is legal again.

‘Tis the Season. We’ve had quite a bit going on lately, and especially this year, I am really trying to focus on making Christmas about family, friends, giving to others, and celebrating the birth of Jesus. I am avoiding the mall at all costs, and am really hoping that presents and “stuff” remain at the bottom of my priority list next Sunday. This December, I do have some Christmas things that I am loving- a hodgepodge, really- some from my own life, some links others have shared or blog posts I have read. Enjoy!

• A friend of mine posted this video on FB and I just love it. It says exactly what I want my Christmas to be.

Simple Christmas @WoodsEdge from WoodsEdgeMedia on Vimeo.

• Christmas Cards. I absolutely love getting mail in December and receiving everyone’s bright cards with pictures their cute kids and pets. I also love sending out cards of my own- this year, we took family pictures at Waggin’ Tails and they turned out so well I decided to use several of them for our card. Although Grayson still had his NG tube at the time, I think it shows our “real” life and where we are right now. The Baker family 2011 card:

•  This blog post. These days sometimes I feel like I’m in a stable too.

• This song. It’s just beautiful.

• Goodwill Towards Men. I’ve mentioned it before, but I am so grateful for the kindness and generosity shown to our family these past few months. So many people are so incredibly good.

• Christmas Cookies. Ok, so I haven’t actually made any cookies this year, but how cute is G-Man tasting his first cookie dough during therapy on Friday? He loved it!

• LIGHTS! Grayson loves lights and anything shiny, so he is all about Christmas decorations and lights. In therapy, we are working on cause and effect- we are borrowing a machine that hooks up to Christmas lights and when he pushes a button, the lights come on. It’s been really neat to watch him figure out how it works. He gets so proud of himself when he turns on those lights.

Ready…

Set…

Go!

• And, last, for a good laugh, watch this:

Merry Christmas Friends! I hope this coming week brings you peace and joy and minimal holiday stress!

I’m sure most of you already know, but Grayson’s surgery went perfectly and we are at home recovering. Yes, both of us- I am so, so tired. Monday afternoon/evening were rough- he was really sore and irritable coming out of anesthesia. He had two doses of Morphine for pain which (thankfully, I’ll admit) knocked him out and he slept through the night Monday. We started tube feedings about 9 am yesterday and so far no there have been no issues.

And let me just say…

Painting is serious business

Dear God,

So many thoughts, fears, and praises are swimming in my head right now.

Almost two years ago, you made me a Mommy. I was a mommy the minute I was aware there was a life growing inside me. That little life is yours and will always be yours, but you have trusted me and his Daddy to raise him, teach him, and make sure he gets the best in this life.

The thing is, I wasn’t ready for Grayson. What do I know about raising a special needs child? What qualifies me to be his mommy? The last six weeks have been tough, and I’m afraid, so afraid, things are going to get tougher. I’m asking, why me? not in a complaining way, but in a genuinely curious way. I’m not stronger, or more special, or more capable than any of my friends with typical kids, so why am I trusted with caring for this little boy who most likely has a disease more complex than I feel capable of understanding?

I guess now I have a little more understanding and empathy for Mary, who probably asked why me? a thousand times while raising your Son on earth.

Tomorrow, our little boy is having surgery. Yes, it’s routine. No, it’s not the riskiest procedure. But it’s still terrifying. I’m going to be so scared tomorrow to hand him over to a doctor who will put him to sleep. I know you will be in that operating room, holding Grayson’s hand, guiding the doctors’ hands, and I know the prayers of hundreds will be covering my sweet boy.

I know you will be with me tomorrow too, and for the rest of this journey. I am humbled and amazed at how your kindness and grace has covered our family since Grayson came into our lives. I am encouraged daily by women you’ve placed in my life in just the past year who I most likely would have never met had things been different. You have provided in ways and through people that are  nothing short of miracles.

So tomorrow, please protect Grayson. Hold his little body so that he has no negative effects from the anesthesia, and please make sure that tube is placed perfectly. Thank you for trusting me with this wonderfully unique, perfectly made little guy. I love him so, so much and I know you love him more.

Amen.