Friday, December 31, 2010

Our Year

Summing up 2010? Extremely difficult. So much happened. So much changed in our lives. We were blessed beyond what we thought would be possible in the birth of our daughter. In 2009 when we received her diagnosis, we thought our lives were ending. In 2010 when she was born, we realized that the really great part of our lives was only beginning.

2010? Here is a summary of our lives this past year (if you make it all the way through, you'll deserve some sort of special award):January
I was put on bedrest due to high blood pressure. I had been having contractions since I was 25 weeks pregnant, so we fully expected her to come early.
I sat on my couch for three weeks, very impatiently waiting for Addison to finally join us (and worrying about what our lives would be like once she was here).

February
When I was 39 weeks pregnant, I was induced- February 5th. Addison was born February 6th at 10:40pm.

She spent the remainder of this month (and most of March) in the NICU.

The last week of Feb, she had her first surgery to put in her G-tube. We were told at this time that it would be close to a year before she would be able to eat fully on her own.
March
12th- magical day. The day we finally got to take Addison home (this was actually quite an overwhelming/interesting day which I'll go into more detail as we approach the anniversary)

This month our home was invaded by oxygen cylinders, nasal cannulas, g-tube equipment, and an amazing baby!

During the month of March we had so many doctor's/home nurse visits/therapy appointments I can't recount them all here.

March 25th was the day that I wrote my first ever blog post. (-:

April
On top of dealing with all of the medical stuff and a still very sick baby, I went back to work on the 12th. My mother-in-law watched Addison for two weeks and then my Mother flew out to watch Addison for the next two weeks.

Addison got her g-tube switched out for a Mic-Key button. (worst appointment of our lives)

April was a month of survival. One day to the next. Some days I would teach a class, run Addison to an appointment and then go back and teach another 1.5 hour class. She had A LOT of appointments- following up with her many health problems.

May
11th was her first heart surgery. We arrived in Boston on the 10th. Yes, mothers day. My first mothers day was not spent with flowers and warm fuzzy feelings. It was spent with raw fear that a surgeon was cutting into my daughter and "fixing" a hole in her heart. They chose to go in through her side and close just one hole because they had high hopes that the other hole would close on its own. We were pretty much promised that we could come off of oxygen after this surgery.

We didn't. But at this point, I could take her off of oxygen for a couple of hours at a time. You have no idea how much of a relief that was to be able to run an errand with just a baby.

My baby sister Andria arrived in May and was our live in nanny until the end of my school year. Love you, Andria!
June
Continued with all of the appointments, therapy visits and home nurse drop ins. Still on oxygen.

I finally finished up work on the 18th and immediately had guests from Minnesota. We loved visiting with our friends Evan and Sheila and their daughter Tava! So much fun.

As soon as they left, my other brother and sister came and all four siblings were together.

June was a fun month, although I don't think I ever quite got to recover from my school year.
July
Addison got her Mic-Key removed (after hours, days, weeks of patiently working with her and her bottle)! YAY! This was a huge step for us. The surgeon was really, really mad at us for getting it removed so early. We were supposed to have it in at least for a full year. I fought to have it removed because Addison didn't need it anymore and I knew that it was just getting in her way. I'm really glad that I fought for this, although it was hard to feel the disapproval of the surgeon.

I got more and more frustrated with each passing day that they wouldn't take us off of oxygen. We had a heart surgery in Boston to get rid of the problem! They made promises to us that they didn't keep.

Also, in July Chubbs' life was spared once again- not due to medical stuff, but to a clutsy mommy. I don't think I've still forgiven myself for this.

OK, I'm going to admit to something here that I've only told a handful of people about. Mostly because I'm pretty sure that no one will actually read this far down in the post. Early July, I started writing a book. I have faithfully and consistently given this book, many, many hours of work. The story is now finished at 80,000 words. I now am working on editing and finalizing the wording. I have poured my heart and soul into this book. My dream is to get it published in 2011.
August
For some reason, going back to work in August was much harder than going back in April. I think probably because in April I was still numb with shock. Although I had a busy summer, my senses were able to somewhat revive themselves to start feeling normal emotions again.

In August, Addison turned six months, I turned 26, and Aaron and I celebrated our 4th wedding anniversary.

Nichola, our PCA joined our team in August. She has done a wonderful job of working with Addison while I am at work or when I take a day to just write.
September
September was a very busy month at school, I worked almost twenty hours a week on my book, and I played in a musical up at Stowe (this included many hours of practice inbetween my "jobs")

We saw yet another hearing doctor who still proclaims that Addison has hearing loss. I don't believe it. I just don't.

We received a call to schedule another heart surgery in Boston with the hopes of getting Addison off of oxygen completely. By this point, dealing with a baby on oxygen seemed like the most normal thing in the world to us. But, our dream was to get rid of it. This surgery meant that I had to miss the last three performances of my musical. This caused me a lot of stress.
October
October began by traveling once again to Boston for a heart surgery. sigh.

October also began by the catheterization surprisingly fixing the problem, making the surgery unnecessary. What a huge, amazing answer to prayer!

However, we were still on oxygen. Just at night now. Yay, now I only had to worry about my baby strangling on cords in her crib was while I was supposed to be sleeping.

We came back home from Boston and immediately jumped back into a busy work/writing schedule. No break for this mom.
November
November began with me playing in another musical on top of a busy week at work. This only only lasted one week, but was every day from 7 to 10:30 at night. Needless to say, it was exhausting on top of exhausting.

At the end of the week, Addison had her sleep study, which finally resulted in us being able to take her off of oxygen!!!! Read about that here.

The rest of November included a lot of working and writing.
December
Addison took her first flight to Milwaukee to spend a week with Grandpa and Grandma Sanford. I left her there and took the train down to Chicago where I attended the Midwest Band Clinic.

We met Addison's cousin Lauren for the first time and spent lots of time with my family.

We returned just in time for Addison's first Christmas. She went skiing for the first time. (-:
And this brings us to now. I have confessed to you all about how stressed and under the weather emotionally that I have been feeling lately, and looking back on my last year, I guess I can see why.
There is a lot that I'm not including on the above list, such as-
Heavy financial strain due to all of Addison's extra expenses and my extra month of lost work due to bedrest. A husband who works at least twelve-fourteen hours a day, six days a week as he is running his own business and it is still young. A roller coaster between loving my baby and struggling with everything that was going on in my life. Self doubt at work and the soothing therapy of writing my book.

I don't have any profound words of wisdom or a witty saying to wrap up this startlingly revealing post. But I would just like to say, the year 2010 changed me so much.

I became a mother. I love being a mom.
I discovered that I love to write. I never really had anything to write about before now.
I was stretched to a new level and found myself doing things and keeping schedules that I never before thought possible.

My eyes became opened to a new world of having a child with special needs. A world where physical imperfections and labels mean nothing. A world where love is all you need to parent your child. A world where stereotypes are thrown aside and babies are embraced wholeheartedly for exactly what they are- perfect, wonderful creations of God. Dare I say it? Just as wonderful. and perfect. As all of his other creations. No more. no less.

Addison. I love you.

This blog has been a wonderful solace to me this past year. I know this sounds dramatic, but I'm not sure I could have made it without being able to be totally honest with all of you and hearing your amazingly encouraging words in return.

Thank you from the bottom of my heart.

Also, cannot possibly type this kind of post without mentioning that "God is good.....all the time."

Happy New Year, everybody!

Thursday, December 30, 2010

refusing to stand

In all respects, today was extremely profitable

I
-did some laundry
-cleaned out the fridge
-made menus/sorted all of my coupons and grocery shopped
-did a therapy appointment with Addison
-one Keene Medical pickup (finally all of the oxygen cylinders are gone)
-took down all of the Christmas decorations (including throwing the tree out the front door by my very own self)
-finally scrubbed the living room floor (yay for removing the hardened baby food) and leaving the whole room sparkling clean.
-made a new non-Christmasy header for this blog (I am so in love with that picture)

all the while entertaining a baby who pretty much refused to nap all day.

But in all reality, the day feels like a failure because I couldn't accomplish the one thing that has has been a bee in my bonnet for a while now. Addison will not stand. Now that her sitting has come so far, she can roll anywhere she wants to go, and her crawling is sooo close, I feel that her standing should be farther along than it is.

But.she.refuses.to.stand.

absolutely. refuses.

If I hold her by her arms, she curls up her legs and dangles there (of course smiling at me, as if to sidetrack me with cuddles and forget about my mission)

URGHHH. It is so frustrating. This is why it's going to take her forever to walk.

She has motivation to go. She has strength. She has the curiosity to cruise around.

BUT SHE REFUSES TO PUT WEIGHT ON HER LEGS.

Odette (her PT) and I spent the good part of an hour today trying to persuade her to put a little weight on those chubby little leggings clad legs.

Apparently this activity is beneath her. Literally and figuratively.

You know, someday when Addison is walking (ten years from now...apparently) I am going to post a long, bragging post that will make you all physically ill and want to throw cyber tomatoes my way because I will be so proud that she finally made it.

Because we have so far to go. sigh.

I'm going to go stare at the startlingly clean floor in my LR a little bit more. (You would be proud, Bekka/Wren/Amy/all of the neat freaks in my life.) (-:

While I stare at my reflection staring back at me in the wood floors, I'm going to imagine little pattering feet treking across the floors in my house. Or maybe even just standing on them. hopefully soon.

Wednesday, December 29, 2010

The bright spots in my day

Thank you all so much for your support and encouragement on yesterday's post. Certainly nothing is solved through a couple of paragraphs of venting, but man, it really made me feel better. Thank you.

Today I felt I would post a few of the bright spots in my day. The things that continue to discourage me would take up a far longer post (my car's going to miss its bumper), but I figured today I'd keep it clean and examine a few positive things.

First of all: Addison's response to music has always encouraged me, but it is difficult to capture in video. Until now- for Christmas she got a drum from Grandma and Grandpa Smith. She is fascinated by this drum. No, she won't play it herself....yet, but something tells me that soon she will. Hello doctor?.....um pretty sure my child can hear...thank you very much.

My second "video of encouragement" is rather a boring watch, but I wanted to show off Chubbs' new skill- feeding herself her puffs. Not all of them always stay in her mouth, but I am more than happy to clean up after this exercise because she is doing so well with it and she loves it! If I need to entertain her for a while, I put her in her high chair, dump a pile of puffs in front of her and she is happy as a clam. Thank goodness you have to eat 90 of them before you reach 25 calories....(Dear Sun Chips, instead of inventing the loudest bag known to mankind...perhaps I suggest you take the puff calorie challenge?)

Behold, the puff princess feeds herself:


Another bright spot? These chocolate cupcakes that I made last night for a party, but I had one with my coffee this morning. Shhhh, don't tell anyone. Love the new recipe. Food Network Chocolate Cupcake
and instead of the peanut butter frosting I used Wilton's chocolate buttercream frosting. Yum.Chocolate may not solve life's problems, but it certainly does a lot to dull the pain.

Tuesday, December 28, 2010

The Working Mom




I feel like I need to preface this post with a magnitude of disclaimers. Truth be told, discussing the issue of a mom working outside the house is an extremely controversial one. I am not wishing to stir up any strife, or state how I think everyone should view this touchy topic. No, I am merely using my blog to express some tumultuous emotions that I have been experiencing of late.

I have started to write this post many times, and then backspaced through it as I thought of people who might read it...judging me.

But this morning, I have decided that I need to post this. I need to discuss logically how I am feeling and see if I can find an empathetic soul who perhaps has felt this same way and has some advice/words of encouragement for me.

Here's the deal. I work outside the home- part time as a high school instrumental teacher. This is my third year teaching. I am at work every other day (M,W,F one week T,Th the next)

The schedule is actually a really great mom schedule. Ideal, really. It gives me the chance to do something that I love to do (and have two degrees for) and yet still spend a substantial amount of time with my baby.

The problem is- this past year has been so, so stressful. The heart surgeries, the doctor's appointments, the therapy visits, the lack of hope, the joy, teaching Addison to eat on her own and getting rid of a g-tube, adjusting mentally to the fact that my life has taken an unexpected twist through the child that I was given. That list could really go on and on.

The physical and emotional energy that I have given to Addison since she was born to us last Feb is everything that I have.

The weird thing is, now that things are calming down with her health- she doesn't have as demanding of a doctor's schedule- it's like everything is catching up with me from the past year.

Everything that I went through this past year as a new mom, I did it with a smile and got through it because I had to. I had to be there for my daughter.

But now, it's like everything has hit me for the first time. I am paralyzed with stress. Everything I look at or attempt to do, makes my heart start beating faster and I feel my pulse start to race. (this is so odd to me. why is it just now hitting me hard? addison is now healthy.)

I sat by while my daughter was being operated on three times this past year, and felt pretty much no stress. I guess I just knew that everything was going to be OK. I knew that God had the surgeries under control.

But now as we have fallen into our family's new normal, I find my own balance tetteering out of control. My desire to do different things has shifted to wanted to help my daughter in every way possible. My passion for music has changed into a passion for being Addison's mom.

The reason I am posting this is because I am desperately trying to grapple with why I am feeling this way. Why for the past month or so, I have been so extremely stressed at the slightest thing. Why the things that I used to love to do now seems insignificant to me.

Why I feel that perhaps the working mom thing isn't for me. If I had had a "normal" child without the physical and developmental difficulty, would I feel differently? Perhaps. I don't know.

But here's the problem. Over my break, I have come to this conclusion. Addison takes all of my emotional energy as well as recovering from the stressful past year. I feel like I have nothing left to give to my job.

But I have to keep working to carry our health insurance.

How do I compromise these things? I feel like I need time to just figure out myself again. I need to somehow get rid of this giant weight of stress pressing down and threatening to crush the life right out of me. I know that sounds ridiculous, but I honestly have been struggling with this.

It's not that I'm feeling guilty for leaving Addison with our wonderful PCA on the days that I work. No, I feel guilty that after I come home from work I have nothing left to give to Addison.

Being a teacher in a young music program is extremely stressful. Especially with talk of such extreme budget cuts for the next year. I find myself swallowed up by a magnitude of stress every time I just walk in the doors of school. Is it as stressful as I am making it out to be? Not sure. I just know that everything that I view now is viewed through stress colored glasses- no a stress colored magnifying glass.

Please don't judge me. Please don't post placating remarks if you have no idea what I'm talking about.

But if you have experienced emotions like these- how did you work through it? How did you drum up the emotional energy for a special needs child as well as a demanding job?

How do you give them both the attention they need without feeling like a failure at both at the end of each day?

I know I usually don't post such a needy post, but for me to past on a smile and pretend like nothing is wrong would be me lying to myself.

Also- apologies for using the word "stress" so frequently in this post. I know good writing means mixing up the words used, but the melody of my life seems to revolve above a drone of stress.

Any and all encouragement would be appreciated (except for the forementioned placating ones)

Thank you in advance.

Sunday, December 26, 2010

Skier McPhee/first Christmas

This is where Chubbs was on her first Christmas:

Skiing for the very first time.
She loved it.

Especially since she got to ride along with Daddy.

Her favorite person in the whole world.

She also received several toys from Grandpa and Grandma Smith which required some Daddy time as well. This girl could not have been happier. (Thank you!)

Chubbs' wide smile of mirth and glee was liberally dispensed to all this Christmas. Her Christmas present to the world.

Posing with Cousin Svana, Aunt Kalyn and Mommy.....Addison cooperates better for the candid shots. (-:
Like this one. Svana sweetly kept giving Addison kisses...what a nice cousin.
This was my favorite present that this year brought.

Her favorite present?
Look closely and you'll see Santa's gift located along her gumline on her lower jaw. (-:

It was a very Merry first Christmas

She partied hard and enjoyed every last minute.

But even party animals have to sleep sometime.

Hope everyone had a wonderful Christmas! Our day was full of laughter and smiles from Chubbs. Could not have been better. (-:

I am looking forward to a week off to catch up on sleep, cuddles with Chubbs and house cleaning. I know, very exciting. But I wouldn't want to be anywhere else....maybe we'll even fit in another skiing trip?

Thursday, December 23, 2010

and we're BACK/promised pics

Cousins


Traveling is nice, but there's absolutely nothing like coming home.

I am sitting at my Dining Room table, drinking coffee, listening to Addison reacquaint with her jumper while listening to her SS CD, and watching beautiful snow fall outside.

I am thankful that Addison and I are safely back home.

Flying alone with a ten month old? Overall, not too stressful. However, if I were to give her a rating for our total of four flights, here are her scores:

1. angel
2. angel
3. angel.
4. DEMON

(Earlier in the day before the really awful flight, Chubbs had previously - launched herself headfirst off of my bed, rolled over and started licking an electrical outlet, and got her earring caught on my sock and almost pulled it right out of her ear. I guess I should have known that something bad was coming.)

For our third flight, we got upgraded to first class for free since Addison was the only baby on the plane and the pilot wanted to make sure we had plenty of room. Merry Christmas indeed.

The last flight, I asked if the flight was full to see if we could get an empty seat next to us and the attendant looked at me and said in a sarcastic voice,

"So pretty much you want your own private jet."

Is it just me, or do these airport personnel have entirely too much power? (on a side note, I find it very unfair that just because my daughter can't go through the metal detector due to devices in her heart...I always have to have the embarrassing/privacy defying "pat down". not a fan. the first pat down was administered by someone that I'm pretty sure goes to my church. totally redefines the word AWKWARD.)

But back to the flight story. After I wordlessly backed away from the sarcastic flight personnel with baby in hand, he actually had a change of heart and meekly came and found us walking around a couple of gates over and said that we were all set.

Turns out, it was really good that we had our own little row, because on that flight, after an hour of quiet flying, little Miss Chubbs/demon child decided that she had had enough.

It came out of nowhere. The screaming was loud, shrill and quite horrifying. I could not get her to stop screaming. Even puffs would only work for the amount of time that it took her to consume them. She would eat the puff just to the point of really soggy and then viciously spit out the puff onto the chair in front of us and continue screaming. A bottle worked for long enough to sooth her sore throat and then the screaming would commence again. She at one point fell asleep while screaming, but it only lasted twenty seconds....it was merely to replenish her energy for more screaming because she woke up with a start and picked right up where she left off.

This lasted for one hour. This behavior was so out of sync for Chubbs that at one point I turned on our light and studied her carefully to make sure that I had grabbed the right baby at the airport.

I felt so horrible for everyone else on the flight, although they were pretty nice about it. The flight seemed to consist of mostly college students and armed forces personnel flying home for the holidays. I will say, the looks of pity that I was receiving from the fellow passengers were the same looks of pity that I received from everyone after our Down syndrome diagnosis. That realization bothered me.

The only thing I could think of was- Addison was overtired and maybe her ears hurt from the pressure change? No clue. But glad to have my cheerful baby back and that that flight finally ended.

I know this sounds weird, but I am thankful that she was able to cry for an hour. Her endurance has never been that good. Her cry used to be a pitiful one syllable and then her energy/lung capacity was gone. Watch out world...my baby can now make some serious noise! As exhausting/frustrating as that flight was, I love seeing such noticeable progress!

Flight drama aside, we had a wonderful visit with my family. Here is a sampling of pics from the trip:

My two lovely sisters with Addison and Lauren, Addison's brand new cousin. You can tell that Addison loves Lauren already.

This is my amazing brother, Jon, with his nieces. Yes single ladies, he is available. But I must warn you, you have to pass the careful screening of three sisters to get to him. (-:

Lauren still isn't quite sure what to think of Addison.

But she appreciated the warm shoulder when a nap became imminent.

This is the demeanor that Addison had for all three angelic flights. Picture from the demonic one? Nope, hands were full trying to soothe the troubled baby. Can you imagine this face having a melt down???
Sister Andria thought that Addison was in love with her, in all reality, Chubbs was fond of eating Aunt Andi's wardrobe....Banana Republic scarf.....yummy. What can I say- the girl has good taste.

OK, before you totally laugh at me for this picture, allow me to explain. You know those really great smiling pictures of Chubbs that everyone loves so much??? Yep, this is the face that I have to make to elicit that smile from her. Totally worth it.

Note to Andria: I find the signature of taking a picture of your feet along with your subject interesting. Perhaps you should rename your photography business FeetFoto or perhaps BigToe Photography. Just a suggestion. (love you)Italic

Anyway, back to Lauren and Addison. Cousins. Best of friends.
Well, most of the time. Yes, Addison, we can see what you're trying to do.
Love my baby.

The cousin stare down competition.

Yep, Lauren won.
The proud grandparents with their two grandbabies.

Chubbs will definitely miss getting to hang out with her cousin every day.
So yeah, we're back and trying to recover from the trip....glad to be back to my computer. I missed all of you and look forward to catching up on your posts from the past week!

It was so nice to meet/speak with some blog followers out in Milwaukee. Thank you all so much for putting up with my ramblings and for all of your encouragement!

So thankful that while in Wisconsin, one of my mother's friends gave me the entire Baby Signing Time DVD/book set. I have to wait for my absolutely wonderful mother to mail them to me, but I am so overwhelmed at that gesture. What a huge blessing!

Also, Anna, Addison already loves her new little friend. Thank you. Pictures to follow. (-:

Happy Christmas Eve Eve everybody! (-: