Wednesday, August 28, 2013

The Most Awesome First Day Ever. Just Kidding. I Totally Failed It.

First Day of School 2013

First of all- I wasn't even sure if it was Addison's first day. I knew that the school district started on the 28th, but when I asked the summer school teacher, she specifically told me that the preschool EEE program ran on a different calendar and didn't start the same day. But the night before, Aaron said "Hey, isn't Addison's first day tomorrow?" and I began to think...maybe...

My mind was still foggy on trip fumes, and the night before I couldn't find a letter from the teacher stashed anywhere. Did I get one? I found one from the school- that gave me absolutely no information as it seemed to be written more for the kindergarten parent. I tore the house apart looking and finally gave up. I would call the school in the morning.

So the morning of, I got up late (TIRED...and plus the kids slept in...of course) and unsure if I even needed to get her there by 8am.

When I went to get Addison, I found that she had taken off all her clothes and diaper and had peed all over her room. Of course. I would have to clean that up later. No time.

I tried calling the school, and they said that it was the start day for EVERYONE, but when the connected me to the teacher's classroom to make sure, my call went straight to voicemail.

I cursed that pregnancy limits my caffeine intact and sipped my mostly decaf coffee with a decidedly bitter attitude. So foggy. Why wouldn't my mind wake up?

Addison was contentedly eating her bowl of cereal at the table.

Carter was still asleep.

Addison's room reeked of urine.

We had fifteen minutes to get out the door.

Both carseats were uninstalled and sitting in the garage.

When I called Aaron to ask if he had installed them, he said that he forgot and was now stuck in school traffic.

School traffic. Of course it will take me extra long to get to school today. My fifteen minutes just got cut down to eight.

I checked on Addison and she had dumped her remaining cereal milk all over the table, herself, and the floor. Of course. There was a lot of milk remaining...apparently.

I quickly cleaned up, dressed Addison, and went to pack her snack, realizing that her old backpack was dirty from our trip. I tried to wipe it down best I could, but felt like a horrible mother when some brown (let's hope chocolate) smudges wouldn't come off the large yellow petals in the flower. I made a mental note to buy her a new backpack...later.

Meanwhile...Addison had undressed herself. Apparently she did NOT want to wear the gray tank top. So I found her a new shirt while begging her to keep her shoes/braces on.

Five minutes to go time.

I woke Carter up. He was crabby and started immediately running circles around the house, searching for who-knows-what.

I threw clothes on him, grabbed Addison's dirty backpack and sippy cup, and yelled "Let's go to the CAR!" with much forced enthusiasm.

As I opened the front door, I heard the sickening impact of two cars colliding on the street in front of my house. A car accident in front of my house that happened right in that moment.. Of course.

I finally rounded both kids up in the car with installed carseats (not an easy feat), left the driveway, and got stuck in that dreadful school traffic. I checked out the accident- just a fender bender thank goodness but definitely was slowing traffic even more.

We finally got to school- ten minutes late. There was no place to park.

The street was lined with cars double parked, and there was no available parking- anywhere. Of course.

I illegally parked and jumped out with the resolve to "drop her off quickly."

Since we were late- the back door was locked which meant that I had to drop her at the front door which meant that I had to find an elevator to go downstairs with my wagon full of toddlers.

The school was officially one billion degrees. I started to profusely sweat and almost immediately dehydrate.

I saw a small child cower in fear at one look of my makeup less face. I predict nightmares in that poor kid's future.

I had to stop at the office to request a key to get the elevator to work. After being trapped for too long on an elevator so small that the wagon almost didn't fit, we were finally released onto the right floor for her classroom.

No one was there.

After searching down a friendly face, I was told that they were out on the playground. Of course they were.

I dragged my wagon out there, now feeling like I had run a marathon. The heat was just getting worse.

The teacher looked confused to see me approach (crazy sweaty pregnant lady pulling a wagon full of kids does look suspicious, I know)

I said "I have Addison" and her face brightened up. But then darkened as she asked why I hadn't come to the special open house that she wrote about in her letter.

Letter? I didn't get a letter. Did I?

Apparently all the information I needed was given in that open house.  Feeling like a failure, I slowly hiked my swollen body and my squeaky wagon back to my illegally parked car with my son who had yet to eat any breakfast.

I loaded him up, drove to McDonalds, and split a breakfast with him.

I felt better.

Until we went home and checked the mail. Our mail is across a busy street, so it's hard for me to check it when I have both kids. With just Carter this morning, it was the perfect chance to catch up.

First thing I found? The letter from the teacher- sent to our house while I was away on my trip. Apparently after seven years of husband has forgotten how to check the mail. once. during a three week period. (no bitterness here.)

The second thing I found? Some paperwork from our insurance that required action on my part TWO WEEKS ago or our health insurance was going to be cut off at the end of the months. WHAT?????? Paperwork I didn't know was coming.


My big list of "TO DO" while Addison was in school was completely ignored, Carter was stashed in front of the TV with Elmo, and I got on the phone for the next three hours and worked through the details of this insurance kink- completely not my fault. My blood pressure was through the roof. It was back to one billion degrees.

After finally getting that all settled (thank goodness), it was time to load Carter back up into the car. I had given him some yogurt while I was on my last call, and he had Greek yogurt everywhere. In his hair. on his shirt, on his leg, in his shoe. Of course he did. No time to clean him up. We were going to be late to pick up Addison.

I threw him in the car with a juice box (hey, what's a little sticky on top of it all?) and we headed back to get Addison. The insurance debacle left me feeling extremely stressed.

Still no parking. But lucky for me, my illegal parking spot was still open, so I claimed it a second time.

It had only gotten hotter out. I pulled the wagon down the hill to the back where her classroom is, and felt myself get overheated very quickly.

The door was locked. As I stood there awkwardly, wondering what to do and wanting to avoid that elevator again at all costs, I saw her whole class walking toward me.

They were going towards the playground where I was supposed to pick Addison up. WHICH I would have known if I had gone to the open house.

Because I didn't have all the info, the teacher paused with the entire class and stood there talking to me outside the building for a few seconds. The rest of Addison's class quickly began to scatter. Apparently she is with a bunch of other kids who are runners and who refuse to listen to STOP. Of course.

As all the aides scrambled to rescue children, the teacher decided to keep marching them on to the correct pickup location and the mother who did EVERYTHING wrong slunk back to her illegally parked car with two children now covered in apple juice (yes, they do share everything.)

As far as first days go? I think I failed it. Let's hope Addison has better luck with her school year.

This is the best picture I could get:
(dirty backpack not pictured. No doubt we left that at school or something.)

I'm sure you all will be rushing to get this posted on your Pinterest board of ideas of awesome ways to document the first day of school. Make sure you get the saw in the picture. That small detail really makes it.

Me? I've eaten my weight in m&ms today. But it's OK. I sweated them off during the whole school/sauna/hike experience this morning.

You? I hope your first days are awesome. They have to be. I took the fall for us all.

Tuesday, August 27, 2013

There's No Place Like Home

(31 weeks in the first picture...27 weeks in the second)

I stumbled into my home yesterday- bleary eyed, exhausted, and feeling 1,000 months pregnant. Stumbling in beside me? Two weary toddlers, high on "please keep quiet even though you can't get down" cookies, and liberally doused in airplane germs.

I'm not sure who was more glad to be home- me or them. Perhaps it was a tie, broken quickly when their bedtime occurred considerably earlier than usual. (hey, the day started at 3am)

It is good to be home.

We needed to take this trip. Needed to spend time with family. Needed to get out. Needed to taste freedom while we can before #3 joins us in a few months and we are thrown back into the infant stage.

Also? I needed to remember that there is a world outside these four walls colored by errant crayons and coated in sticky by small fingerprints. I tend to get stuck in day-to-day toddler nonsense and my own inadequacies. It was amazing to escape that and observe and learn from other mothers in the same stage but doing things differently- better. Mothers with strengths where I have weaknesses.
I went to my friend's wedding and saw another friend enjoy the wedding WITH her two toddlers, not that different in ages from my kids. I tend to err to the side of "I can't go unless I have a babysitter because it would be too exhausting to take my kids and then I wouldn't have any fun." (This means that I don't go a lot of places.) My friend Katie, had an amazing time WITH her kids (who were admirably behaved.) She laughed with them. danced with them, enjoyed all those moments WITH them. I really learned from watching her. To me she was integrating motherhood into life far better than I do. She didn't view them as baggage at a fun event. She saw them as participators alongside with her. And because this was obviously a frequent practice of hers? They were the best behaved toddlers I have ever seen and everyone had fun. I observed and learned in this area where I need to grow in my motherhood.

We stayed with my sister- who is a far better housekeeper than I am. I watched her consistently clean, wash, and pick up around her toddler and six months old. And her house was clean at all times. Even with my kids added to the mix. Whereas my attitude is often "I can't keep up because of my kids" I learned from her strength in this area. Instead of pouting in my house about how I CAN'T do it all, I went to live with her for three weeks and learned how it CAN be done. It was an amazing learning experience. And we laughed and celebrated strengths that I had that she didn't while talking about the strengths that she had that I didn't. We acknowledged each other's strengths in a non-jealous way- and learned where we could. I NEEDED that.

I learned from my sister-in-law's gracious adjustment to her newborn alongside her toddler. I learned from conversations with her about breastfeeding, going back to work, and a thousand other things that make up the day-to-day. I learned and broadened my mind from a different mothering circumstance and perspective.

And also? I learned from watching my littlest sister prepare for the big step of engagement/wedding/marriage. I remembered how I was there not that long ago and how badly I wanted to be where I am now.

It is so much harder to parent away from home. But sometimes extremely necessary for myself to not get stuck in a rut. I don't get to travel as much as I used to before kids, but when the opportunity comes? I learn from it and soak up the experience even if it's not always comfortable because of the extra work with the kids.

And the kids learned things of their own.
The flight back (although still not easy) was so much better than the flight there. This is 100% because Aaron was with me, and we could sit and work with the kids one-on-one instead of me alone chasing both of them opposite directions on a crowded plane. Aaron was a HUGE help and allowed my level of anxiety about the whole ordeal to go down a notch or two. After Carter fell asleep next to Aaron during the first flight, Aaron unwisely suggested to me that he obviously had more "success" flying with toddlers than I did because of how my flight alone with them went. While clenching my fists together to keep from strangling that smug look off of his face, I pointed out that MAYBE the fact that we were manning them one-on-one had just the TINIEST bit of impact on his high level of success. He reluctantly agreed. (I mean...seriously????? I almost ditched the next flight and found a luxury solo flight a few hours later so that he could REALLY show off his level of toddler-flying-success with the two of them alone.) I will say- I am thankful he gave up on some days of work to fly out and accompany us home. I think if he didn't do that- we probably would have had to rent a second home in WI because I was NOT FLYING ALONE WITH THEM AGAIN. (love you babe and thank you for coming to get us.)
So yes- we are now home. Wiser. Tireder. Hungrier. Fatter. (I speak only for myself on that one)
The railing to the deck was finished by the deck fairies while we were gone (thank you, thank you!) so today included a lot of relaxed outside play where I didn't have to worry about the kids dashing for the road every ten seconds.
Today was low key. The kids laughed and played together. Things were cleaned. Clothes were washed. Stories were read. Food was prepared in my own kitchen. Children slept and obeyed. Pretty much seemed like the easiest day ever after these past three weeks. Perspective is everything, I guess.

Thank you to my family for an awesome visit and to everyone who made this trip possible! Now? Time for Addison to start school, for some specific behavior things to be targeted before new baby, and for a house cleaning/organizing to prepare for said baby... The party just continues...

Thursday, August 22, 2013

The other side of the frustration coin

Her cry registered in my mind before I was really even awake. 3am. I clumsily got myself out of bed and ran to her. She was crying. My baby.

When I got to her room, she was sitting up in the middle of the bed, wrapped in the pretty pink comforter she was borrowing from her cousin, and pitifully crying.

I leaned next to the toddler bed, drew her blonde head onto my shoulder, and told her that everything was going to be OK. Her body fell onto mine, limp even more than usual from sleepiness. Addison gives the best hugs. Low muscle tone means that her entire body molds into mine when she lets me hold her close. As she clung to me last night, her breathing slowly evened back out into sleep.

I held my little girl and even though my own mind was crowded with sleep webs, I felt the love and pride that I have for her swell up and make the sleep disruption seem almost like a highlight of the night.

After a while, she let me lay her carefully back down onto the pillow, tuck the comforter closely around her, and watch her so peacefully sleeping once again.

Frustration- gone.

Sometimes I swear my kids read my blog. When I write about how awesomely they are behaving? They immediately start acting out. When I mention something about good sleep habits? They are awake all the next night. When I talk about how nice and healthy they both are? Someone gets sick. I guess I jinx myself far too often in this space. But yesterday? Right after I clicked "publish"- something clicked with Addison. She obeyed me for the first time since we arrived here. It was over something silly- putting a book back where she found it. But to me it was huge.

Frustration comes with the job. With special needs parenting. With all parenting. When I was new at this (OK, I am still new at this- when I was "newer" at this), I used to be ashamed of the frustration. Like I was somehow doing something wrong. Not loving enough. Being too selfish.

But after riding the roller coaster up down up down up down so many times now- I cling tightly to both the good and the bad times. I want to remember the frustrations. When I am sailing along on my easy, normal days- I don't want to forget where we have come from. When I start taking my children for granted, I want to remember the tough times and how amazing a gift it is when things are boringly normal. And so I write about both.

Sometimes I am tempted to sensor out my bad days and only share with you the good. But then I remind myself that this blog really isn't for anyone who might happen upon it and graciously read my words. This blog is for me. And I need to remember.

Yesterday, immediately after writing- something about just writing the words- confessing the frustrations, made me feel better. Your comments, emails, messages, and IG posts further strengthened that. Thank you. And then Addison took it upon herself to be very sweet the rest of the day. Family picnic by the lake. Hike down to the beach front. Playing in the water. Getting more sand on both of my children than we actually left on the beach. Laughter. Waves on my feet. Happy children.
And as I felt my frustrations slip away- I was thankful.

Yesterday someone commented that I was being too hard on myself. Someone else said that I am human. Yes, and yes. Thank you for the reminders, love, and kindness. And to all of you going through similar frustrations? Let's ride this out together. The good. The bad. And the freedom to express both without judgment or fear of being completely alone in all of this.

Because as we all know: motherhood is unpredictable...and yet kind of awesome at the same time.

Wednesday, August 21, 2013

Frustrated and Needing to Vent

Confession: Taking Addison outside of our natural environment of home has accented her disability to me.

You know how I often say that I don't notice Down syndrome in her much anymore? How we have just fallen into our normal, and I don't think about it as much as I did in those early days?

Well imagine if you will having to unload two toddlers out of your double umbrella stroller to get through airport security. Imagine having no way to tie them to your side for those seconds, and knowing for a fact that you couldn't trust your 3 1/2 year old to stay by your side for thirty seconds while you fold up the stroller. Imagine knowing that your only hope was in your 23 month old, who DID stay right next to you while your oldest child immediately took off into the crowds of surrounding people. Imagine having to trust a complete stranger in line behind you to hold her (after chasing her down for you) because she refused to obey and pretended like she didn't understand your very simple instructions of STOP and STAY.

Imagine having to wrestle down that same 3 1/2 year old on the plane. Who refused to leave her headphones on to watch her movie because she didn't like the sensation of something on her head. Who easily worked her way out of her special harness due to her double jointedness. Who wouldn't be reasoned with- or bribed. Who couldn't talk to you- but loudly yelled gibberish that you couldn't understand (but no doubt annoyed those on the plane around you) while she fought and screamed to get down and run the aisles.

Imagine feeling completely frustrated and thinking "Why won't she just act her age?" I was tired. I was juggling Carter too. I needed my big girl to act like a big girl. And she wouldn't. She couldn't?

Sure, she's not an adult- and I don't expect her to behave like one. But honestly Carter acted more maturely than she did- and he's not even 2...and he's a rather rambunctious child.

Imagine for the next few weeks her constantly running, bolting, escaping toward danger every time she isn't contained in some way. Imagine every bit of obedience training you have worked so hard on flying out the window.

Sure- every child can be stubborn. Every child can show regression in behavior on trips. But this is different. This has been noticeably- Down syndrome.

I am exhausted. I am freaking out at the thought of this new baby now because her behavior has been so unreliable that how in the world am I to juggle a third when my oldest won't even STAY when her safety depends on it? How can I take care of all my children when my oldest child isn't growing past the behavior pattern of an 18 month old? Will she ever? Do I have to put it on Carter to be the big brother? So I will have a 2 year old, a newborn- and a little girl somewhere in between who is supposed to be my big girl, 4 year old helper? Will I just never leave my house again?

So many times I wish that Addison had been my youngest. So many times I wish I had my two big boys- and then my baby girl that they could help me with. Am I being ridiculous to still want a big family after Addison? Should she have halted my plans to have any more kids for at least ten years while I try to get her semi independent? While I get older and our childbearing window gets smaller and smaller?

This trip has been extremely frustrating with her.  Yes, Carter being so close in age to her has done WONDERS for her development, and I can't help but think that this baby will too (especially as Carter starts to really pass her up). But at what cost? Having a 4 year old, 2 year old, and a newborn is not an unheard of combination. Is it so unreasonable to think that Down syndrome in that equation makes it impossible to carry on? I still say that parenting a child with Down syndrome IS just like parenting any other child...but then you have these random moments where it isn't- at all. It is harder. And takes more work. But still somehow the same. (Carter has held his own frustrations this trip. And when Addison acts out? Chances he's not too far behind her because they so easily influence each other's every move.)

I will say this- my siblings have been amazing to help me in these single parenting weeks far away from home- each taking charge of one toddler when we go out on outings together. My older sister (and husband) has been very understanding with us tearing about her house.

I love Addison dearly, and of course I don't regret having her in our family. This is just a vent. A frustrated, tired Mama who is tired of almost losing the $1,000 orthotics for the hundredth time because Addison takes them off and randomly discards them while we're out and about. A tired mama who is dreading the flight back in a few days (but at least Aaron is coming to help with it.) A tired mama who still winces at Addison's escape into the big hotel last weekend. A tired mama who has almost given up on the new/old eating struggles. A tired mama who can't chase down a bolting child one. more. time.

When I sit back and choose not to fight certain battles because I just can't do it all right now, I see the I looks I get that suggest that I'm being a slacker mom. Maybe I am. But I am just trying to survive. If slacking in certain areas is necessary for this? I'm on board. (i.e. my children wearing only their diapers except when we go out in public. I know. SLACKER.)

I have been hard on Addison this trip. I know I have. I feel like I should be surrounding her with only love and cuddles because surely she is feeling out of her element to be so far from home. But I can't stop there. I need her to learn. I know she can. I just don't know what it will take (or how long) for us to get there.

I am looking forward to heading back to our normal space early next week. Not because we haven't enjoyed being with family- or because the visit has been bad. We've had a wonderful time with family- and I look forward to even sweeter visits this weekend (as Aaron will be joining us.) Also, it has been so helpful for Addison to play so closely with her almost 3 year old cousin. (She has been slowly improving in certain areas as she models her behavior.) It's just that it's easier to do all of this at home. It's easier to do all of this when Addison has the structure of school...and the house that she is used to....and the simple home procedures like having a set path to show her which direction to walk from the car to the house.

The comforting thing is- 3 1/2 years into this journey, I know that this comes in stages. The frustration, the pain, the wondering- it all fades away eventually and a happy, contented, joyful normal resumes. I think it would be unfair to expect the happy normal to be our only normal. Or even the frustrating normal to be the only normal. It makes sense to me that parenting a child with a disability includes both. And even though today I am venting...I know that even in a few days it will be better. This I have learned on this journey. My job? Is just to hold on for the ride.

I finally put her in her brother's shoes (which are too big lol) to keep orthotics safely packed away
Running away so much is exhausting too
And refusing to eat certain foods takes a certain look
One thing always guaranteed to bring good behavior and good eating? Why chocolate chip pancakes...of course
more pictures on IG (eanfe)

Sunday, August 18, 2013

Worst Co-Sleeping Parent In The World

My children are not very cuddly people. When Carter Henry was a baby, I may or may not have described his cuddle habits as "it's like trying to cuddle an ironing board with claws." Addison has become more cuddly the older she gets. Hugs, wanting to sit in my lap and lean her head against me, and just loving pats and wanting to be close to me- I love it all.
 (cutest ironing board ever)
But I have always thought that perhaps their non-cuddliness is the reason that co-sleeping never worked for us. I have seen huge discussions on co sleeping- the pros and cons- but to us it was never even an option because our children would start writhing and kicking like their diapers were full of ants the minute we would all try to snuggle up as a family for even a nap. Sleep? Only taken seriously by them if they are all alone in their rooms with no one else in their sight.

We are still in Wisconsin visiting family, and for this long visit I have been very thankful that my sister has an extra two rooms where Addison sleeps alone in one, and Carter (and eventually I- after he is asleep) sleeps in the other. This means that they relatively keep their schedules, and Addison hasn't yet fallen into her usual travel sickness that seems to plague her every time we venture out on a big trip (knock on wood.)

This past Thursday, I threw both kids into the car (figuratively, of course), begged the help of my mother, and then we set off on a 6 hour road trip to go visit A and C's brand new cousin Kjell and his big sister Svana (and of course...their parents.) This exciting adventure meant a brief, 2 night hotel stay- which meant that I would share a bed with Addison. She really is too old to be sleeping in a pack 'n play, and she is so used to her toddler bed that she really accepts nothing less than a real bed now.

The first night, we ended up changing hotels 3 times (this may or may not be my fault....and may in part be blamed on the smell-triggering-sickness that comes with pregnancy- guilty.) We finally settled in a beautiful room that DIDN'T smell, and Carter decided to stand in his crib and chatter excitedly until 10pm because he could SEE US...why on earth would he ever go to sleep???

Addison fell right to sleep before I even climbed in beside her. SCORE! This would be easy to share a bed with her! What had I been worried about????

All went well until around 3:30am, when I felt her slight frame restlessly move and then shoot into a sitting position. "Car Car!" She called excitedly.

"Go to sleep, sweetie. Car Car is asleep."

"CAR CAR!" She yelled, so much louder this time. At this point she began to quickly move herself off the bed to go wake him- she could SEE HIM!!! Time to play!

I calmly brought her back to bed, wrapped her up in my arms, and attempted a sleep inducing cuddle. NOPE. She was wide awake and ready to go and wanted NOTHING to do with my cuddles, or staying in bed, or my polite requests for her to stop yelling her brothers name. She wiggled and danced like water on a hot griddle.

The next two hours? We repeated that ten million times. I spent the time wrestling her down in the very comfortable bed that was calling my name toward dreamland, but instead had to be the launching point for frantically trying to keep her away from her brother who is a very light sleeper himself.

Finally I was at my wits end. And exhausted. I set her up in the bathroom with her iPad and a snack and then tried to go back to bed. A few minutes later when I checked on her, I saw that she had shredded her granola bar in teeny tiny pieces all around the bathroom and was starting in on the tissues and toilet paper.

This is when Grandma woke up- and offered Addison to share HER bed (after cleaning up the bathroom mess.) What did Addison do? Fall obediently asleep on the other pillow. Of course. (apparently Addison was trying to say to me "it's not's you")

The second night, she once again fell asleep pretty easily. I lay next to her and just marveled in her cuteness. Little button nose. Eyelashes that sweep her rosy cheeks. Tiny little hands resting on the sheet next to me. Oh her hands are so tiny!

It was when I stopped marveling and started trying to get some shut eye of my own- that I found I couldn't block out one little detail. The snoring.

Addison snores. Loudly. Aggressively. Think fog horn...on steroids...into a megaphone

I can't believe someone so cute and little can snore so LOUDLY. It took me a while to fall asleep even though I was exhausted. I slept rather lightly that night. I woke up every time she readjusted her little body that could fit pretty much every direction on that big bed. I went to the bathroom once and came back to find her right in my warm spot (so I switched to her side of the bed. DON'T DISTURB THE SLEEPING PRINCESS.) I checked on her frequently to make sure that she wasn't over by Carter. Night #2 seemed to be going much more smoothly than the first night. We can do this!

I woke up at 4am unable to sleep and just lay there, watching her sleep and marveling in her again. I love this little girl. I decided that co-sleeping with your kids is awesome. I loved being close to her and watching her snuggle into me (she was unconscious...but still...)

I finally fell back into a fitful sleep around 5:30am. All was well, until I was awakened by a child's laughter out in the hotel hallway. My child's laughter. Even in my sleep fog, I would know that laugh anywhere. I shot up in bed, and saw that the bed next to me was empty. "ADDISON!" I cried out. Co-sleeping fail.

I knew that was her I heard out in the hallway. Because of the previous night, I was convinced that she was out there with Carter. I started calling his name too, until I saw his peacefully sleeping form- completely undisturbed by the drama- in his crib.

I woke up (and freaked out) my mother with my cries, and ran out of bed toward the hallway, thinking surely my ears had deceived me. Nope. On the other side of the door was a half dressed little girl running, yelling, and laughing with glee at the freedom that was found on the other side of that door. Conquering the lock...the heavy door...escaping the bed right next to me...sneaking toward the door...all in complete silence- this girl is a freaking genius when she wants to be.

The sick feeling in my stomach did not go away as I grabbed her, brought her back into the room, and lectured her within an inch of her life. Once again she was then sent to Grandma's bed....where she lay really still waiting for Grandma to fall back asleep so that she could go continue her hallway party. (Grandma was too smart for her.)

So to sum up- I am the worst co-sleeping parent on the planet. Either I spend most of the night wrestling my child back into bed...or she escapes so silently into the night I am haunted with all of the unfortunate "what ifs" that we narrowly avoided. I have a feeling this is something you get better at the more you do it...but I'm not sure my nerves can take many more nights trying...

At least our visit was awesome. I am finding travels with my two...combined with pregnancy be rather difficult. But completely worth it as we spend time with family, watch cousins play, and plant seeds for awesome family get togethers when the kids are a few more years down the road.

Right now...chaos and noise and bobbles and cookie bribes and some rough nights of sleep are necessary. But I pick out the good from the exhausting and call it a success. soon can everyone just move to Vermont so we never have to travel again? (-:

Tuesday, August 13, 2013

Visiting, Destroying, Adventuring, and Vomiting

This is the post that ends with you probably wanting to give my sister a giant box of cookies...or a trophy...or perhaps the crown of sainthood. Just a heads up.

So last Wednesday, I bravely crazily packed up my two tots, boarded a plane alone with them (don't be fooled by the simplicity of those words), and descended on my older sister's house to subtly and silently fit into the fabric of their lives with her (almost) three year old and (almost) six month old.

Turns out our entrance was about as subtle as a herd of elephants in a china shop on a windy day swinging bats and throwing random explosive devices. (too much?)

We live far away from my family, so when my three siblings were all going to be back in town with my parents, I jumped at the opportunity to introduce my kids to my side of the family and let them get to know their aunts, uncle, and grandparents. Since Aaron was in his busy season with work, he couldn't take off to come with us, but who was I to let a little alone travel with my kids stop me from an awesome trip? (this is where I would like to plead insanity...more on the actual flying experience later.)

We set our trip timetable for almost three weeks. So far I have turned a year older (the digits 29 are truly scaring me), attended a friend from grad school's wedding (CONGRATULATIONS TJ!)- we have been to the zoo, out to breakfast, out on walks, out to eat, shopping...and many, many other adventures.

We have been staying with my sister and her family. They are gracious and wonderful.  My sister is an extremely neat, clean, organized person. She has trained her three year old daughter to be neat, clean, and organized. Her husband is neat, clean, and organized. Her six month old spits up, poops, and eats in a neat, clean, and organized fashion.

My children? Carried on as usual. (think...antithesis of all of that)

When Addison dismantled the Apples to Apples game, spreading ten million cards every which way (oh, so YOU'VE counted?)- my sister Bekka barely blinked an eye. When Addison tore apart her cousin's room during nap time, her three year old cousin shouted "OH NO!" and then swooped in to show Addison how to pick up all the toys. When I couldn't figure out Bekka's coffee pot and spilled coffee grounds and half-made coffee all over her pristinely sanitized counter- she smiled and jumped in to save me. When clothes were scattered and diapers piled up? She did my laundry...FOLDING and PUTTING AWAY the perfectly clean clothes. (seriously, sainthood was invented for people like her)

When Carter Henry decided to fall back on some old vomiting habits- spewing nastiness all over her baby girl's adorable nursery (to get out of his nap...of course...NOT sickness...)...Bekka did slightly wince and run from the room as if going to be ill herself. (I have been desensitized to this...after two years of it.) But after I cleaned it all up...and the lingering odor of vomit clung to the air- she didn't say a word.

I forgot how much more work it is to parent when you take your children out of their normal space, normal schedules, and normal eating habits. All of a sudden they feel they have the right to ignore you, run away from you, and refuse all foods that are not coated in sugar or salt. It makes my usual "disappear into the background and try to be super helpful" houseguest motto seem ridiculous and unachievable.

When you have two cranky toddlers (otherwise known as Addison and Carter) plus a cousin who is eager to add her screams to the duet performing on center stage...and a baby who wants to badly to be part of the get a lot of chaos, fun, and a teeny-tiny sprinkling of "WHY DID WE HAVE CHILDREN????" thoughts.

(I have decided that I don't want any more children. Oh wait...)

All of that aside- we are truly having a great time. We seem to have found a schedule/activity balance with the 4 kids 3 and under. Uncle Jon is already a favorite among the tots...along with the train ride at the zoo, and the popsicles that seem to magically multiply in Aunt Bekka's freezer.

This is the stuff memories are made of. Worth the extra work...and the extra exhaustion taking over this very pregnant mama. The kids are truly having a great time. New experiences, new spaces, new adventures- we needed this. And I am getting many, many teachable moments with my children that perhaps wouldn't have cropped up in our space back home.

Thank you Bekka, Eric, Lauren, and Emma for putting up with us. Your home is lovely ( used to be...) and has been an amazing place to let the cousins bond, siblings to reconnect, and grandparents to get very well acquainted with the littles carrying their genes.

Here's to another week of constant play dates....a long road trip with Grandma...seeing more cousins....and lots more activities and moments that will make my family no doubt want to ship me back in the nearest box (so now it's a crime to have a winning streak during game night????)

- check out Instagram for pictures updates of our trip. (user name: eanfe)

-Love you, Bekka

-Carter- let's stop at 3 vomiting episodes...shall we? You don't like to nap...we get it)

-Andrea, thank you for changing Carter's diaper explosion while I was writing this little update.

- Dad, thank you for picking us up and driving two screaming kids for two hours just to help us avoid a layover in our travels.

Tuesday, August 6, 2013

I Take My Kids For Granted...Until I Don't

I take my kids for granted.

The smiles and laughs, the chubby legs, the curious fingers, the warm heads, the constantly moving bodies, the peaceful sleeping forms, the hugs. I take it all for granted.

The messes. The frustrations. The exhaustion. I take that for granted too.

Oh sure, I will be the first to say how much I love and appreciate them, but there is no sense of urgency there.

Until it is.

Until I set them on the path to walk toward the house like I have a million times before. Until I take my eyes off of them for thirty seconds while I pick up the three grocery bags out of the front seat of the car. Until I am standing in the driveway, holding my grocery bags, and not seeing their bobbing blond heads headed toward the house like I usually do. Until my frantically searching eyes spot them at the very bottom of the driveway, only a few steps away from an extremely busy road and fast moving traffic. (WHY did I ever want Addison to learn to run?)

I drop the groceries right were I was standing and begin to run- my swollen belly and creaky limbs all of a sudden turning into a smoothly oiled running machine. I have never run faster- with more urgency- with more fear. I hear Carter saying "CAR, car, CAR" while pointing and continuing directly toward the road with his sister by his side. The distance from the garage to the road has never seemed farther.

"STOP!" I yell. But they choose this moment to let all of our careful training go in one cute ear and out the other....decidedly more stubborn ear.

Because it's a downhill driveway, I pick up momentum and fear I might stumble and roll the rest of the down. Something catches me and propels me to them- just in time. I grab two hands, halt two bodies, and drag them back up the driveway while they fuss and yell at my meanness. Just then a car whizzes by- right where they were innocently standing a few seconds earlier.

I'm shaking. My heart is pounding. My children are oblivious to what almost just happened.

Considering how close we just came to tragedy, the ordinary suddenly takes on an extraordinary sparkle. My appreciation flames from a dull red into a bright red.

Dragging them the rest of the way up the driveway, setting them on the path to the house, directing them toward the door, helping them with the step up into the all seems different this time.

When I talk to them about how extremely naughty and wrong that disobedience was- it is with deeper love. When I think about the mess that I still have to pick up from the morning's rush to get out the door- it is with thankfulness for the job. When I feed them their snack and get them off to bed for naps, it is with a heart bursting with appreciation for these tiny tasks that I took for granted just a half an hour before.

I take my kids for granted. I take my job as mother, nurturer, teacher, housemaid, cook, boo boo fixer, protector for granted.

Until I don't. Because I am sent a reminder that the present isn't guaranteed one second into the future. And it is to be savored for everything it is while it is still here.

Today I am thanking the Lord for my children and for his protection. I am keeping a close eye on the evil twinsies and disliking the constant danger that befalls the toddler stage.

Why is this perfect timing? Because tomorrow we board a plane for three hours. Just me and my kiddos. And all day week I have been thinking about how horribly it is going to go and how awful it is going to be to fly solo with them. Now? I am on pins and needles still...but thankful that they are here to take the trip with me. Now let's just hope they don't somehow manage to get run over by a plane....

Monday, August 5, 2013


He lay next to me. Silent. Not yet awake. His arm curled around me, and then he started to stir. A normal Monday morning. And yet not normal at all.

I knew that he was going to forget, so I wasn't expecting him to say anything. This week ahead was exciting enough that I didn't need him to make a big deal of it, and yet the words would be nice to hear.

When his groggy voice still half asleep piped up with a "Happy Anniversary. Can you believe it's been 7 years?" from his side of the rumpled white sheets, I was pleasantly surprised. Clearly he had been reminded by my mother posting about it last night on Facebook...and tagging him. (Saved by social media.)

I let him draw me close, and then I whispered "Happy Anniversary." I paused and then said thoughtfully "You know, if I could go back to Deanna 7 years ago this morning and give her one piece of marriage advice, you know what it would be?"

"What?" He asked curiously, stroking my hair.


and as his laughter shook his body and the bed and his hold on me, I added "RUN FASTER!"

We laughed together, truly enjoying the comfortableness of our craziness (we've had seven years to really settle into it well).

I don't post a lot about my hubs here on my blog (mostly to keep us out of counseling), but today I am thankful for the one man crazy enough to put up with me. The one man who worked his butt off to put us both through grad school debt free and then moved us across the country to run his own landscaping business where he grew up. The one man who continued to work harder than I have ever seen anyone work to get this business off the ground and then to sustain it to the point where I could stay home with our babies. The one man who cried once about his daughter's unexpected diagnosis, shook it off, and then proceeded to love her more fiercely than anyone. The one man who lets me do my own thing, reigns me in when necessary, and never complains about what I choose to cook or when the cleaning doesn't get done or when the laundering falls behind.

It's been seven years of marriage. And even though we joke about my "RUN" comment (because they don't tell you in those shiny brochures about how stinking hard marriage is!), today I am thankful.

Happy Anniversary, babe. For your gift this year, I give you another child. A son. (What? Of course that totally counts.)

Looking at this picture, I now feel really old. And fat. Happy seven years to me.

Friday, August 2, 2013

a little rant...about boobs

This week is World Breastfeeding Week.

Can I just say something? (you know I always do...)

I am sick of hearing about boobs. I am sick about talking about my own boobs. I am sick of hearing people proclaim their child's intelligence is because of a super long relationship with breastfeeding...and especially that their child with a disability has fewer delays because they were breastfed for so long.

I get that people have amazing success stories. I am happy for them- really I am. But I am sick of feeling guilted. I am sick of feeling that I have to defend my decisions on this. I am sick of these broad statements making it seem like if we didn't have a long breastfeeding relationship...then the opposites are true (regarding intelligence, delays, and immune systems) and that it is then somehow our fault.

When I was pregnant with Addison, I wanted to breast feed her SO BADLY. You know how badly? I endured a 31 hour Pitocin induced labor- without an epidural. Yes, you read that correctly. I didn't do that to be a hero or have birthing bragging rights. I did that because I was told that an epidural could make her a little sluggish when she was born. Therefore, I wanted her to be able to be alert enough to latch RIGHT AWAY because of her low muscle tone. So I said no to the epidural even though the Pitocin hated me and wanted me to die.

You know how that worked out for me? The 31 hours of hell on earth ended with her being whisked away to the NICU- not only not able to latch...but not able to breathe. Hold her right after my natural birth? Nope. For some reason the doctors told me that the Smurf look was NOT in for babies this season, and they needed to get her to change from bright blue to a bright pink- far away from me in the NICU.

I started faithfully pumping, telling myself that as soon as this small hiccup was worked out of her- she would latch right on and we could start our bonding experience! "this small hiccup" turned out to be a very, very sick little girl that seemed to have no end of an exclusive NICU stay.

Addison got my breast milk. Through a tube in her mouth...or nose- whichever stayed better that day. And then when it became apparent that the muscle tone was so low in her mouth that she couldn't suck on a breast or a bottle- she had a surgery to have a g-tube placed into her stomach so that we could eventually take her home.

After we finally got home (at 5 weeks) I kept pumping. I would pump for 45 minutes, try to get her to latch on for a half an hour, then I would teach her to use the bottle for 45 minutes (she would suck some of it up, but then it would just fall out the sides of her mouth because she didn't have the muscle control to keep it in). After that failed, I would then hook her up to the g-tube bag where another 45 minutes would slowly drain the bag of pumped milk directly into her stomach. After that was done? It was time to start pumping again. (side note: thank you to an amazing blog reader lactation consultant who let me borrow her hospital grade pump. This saved me. Truly.)

After a spending an entire week doing only that cycle over and over again with no break in between- the appointments started. The therapy appointments...the doctor's appointments...there were so, so many appointments I had to get her to almost daily.

I  kept pumping. I kept trying to teach her to use the bottle, but it soon became very apparent that her weakness from the Pulmonary Hypertension meant that it was so much work for her to take each little breath- forget taking the milk in herself.

After she had her first heart surgery (at a few months old), we started to make more progress with the bottle use. At this point I was back at work- pumping, trying desperately to teach her to suck from a bottle and yet keeping up with more and more therapy appointments. She was also on full time oxygen which meant I had to keep up with the supplies at the house- clean nasal cannulas, tape for her face, long tubes, cylinders of oxygen of all shapes and sizes, and a cart and bag to carry cylinders around with us wherever we went.

It all just started being too much. I was going crazy trying to balance work with her appointments and medical equipment, pumping AND trying to teach her to use the muscles in her mouth while making the time for the g-tube feed to go down slowly enough so that she didn't immediately vomit it back up. I couldn't do it all- something had to give.

Because I had a ton of milk in the freezer, I made the decision to stop pumping at four months. The frozen milk took us for another two (added to some formula). This gave me a more time to work with her on using the muscles in her mouth. At five months we were able to get the g-tube removed because she was strong enough to drink from a low-flow bottle nipple. (I can't even tell you what a huge success this was for her.)

But no matter how much more manageable my life became at that point, I couldn't shake the guilt. What if I had waited until after her second heart surgery (at eight months)? Would she have been strong enough to breastfeed then? Did I not try hard enough?

When Carter was born, I felt like this was MY MOMENT! Another natural birth- this time he did latch on right away. WHOOHOO! We had a great first few weeks....until I was trying to once again balance all of Addison's appointments with a needy little girl who was still very much a baby herself- alongside my newborn. I had to switch to pumping in order to get everything timed out better in order to do everything I was expected to do (he would drink the bottle much faster).

Once he got that first bottle, it was very difficult for him to go back. For a few more weeks we did both, but then I went to exclusive pumping once again. It was what I knew. Life was crazy- I had no help (my husband had to go back to work the day after we came home from the hospital with no break until Carter was four months old)- Addison still demanded a lot out of me and tended to get into a lot of trouble while I was strapped down with Carter for hours on end trying to convince him to give this another go. Not to mention that Addison's four therapy appointments a week picked right back up when Carter was a few days old. And she had her eye surgery (for crossing) when he was two months old.

I exclusively pumped for Carter for a long time (almost five months....with enough milk in the freezer to take us a few more months), before physical reasons and sanity reasons forced me to once again make the call that I needed to stop.

I did my best.

I have high hopes for this third baby (since my husband will be home for the first few months and will give me the freedom I need to really work on this). But I did my best with my first two, and that's all I can ask for the third baby as well.

I guess you could say that I am a breastmilk AND formula mom. And honestly? I see no shame in that. I don't understand why there is so much pressure and guilt in this area. A lot of the guilt I put on myself, I know this. But I got that guilt from so many things that were said to me or that I read on this subject.


And like I said (before I started talking about my boobs yet again lol) I am sick of this whole subject. (Confession: This might have a tiny percent to do with pregnancy crankiness...but still.)

I know that breastfeeding is hard work. But it's also hard work to take care of a baby in a situation that is already maxed out difficult and can't afford to add one more thing.

Yes we should educate about breastfeeding. Yes we should talk about the pros. But we should also accept and not judge when situations don't end with a TIMES cover of a beautiful breastfeeding relationship that has extended for years.

Every baby is different. Every experience is different. Every mother's body/story/schedule is different. We all want what's best for our children. And sometimes? That is formula. No shame. No guilt. It's not "lesser" or inferior. IT IS OUR BEST.

If you breastfeed your children? Good for you! I am happy for you and your successes.
If you formula feed your children? Good for you! I am happy for you and your successes.
If your child is g-tube fed with whatever mixture you can manage to scare up? Good for you! I am happy for you and your successes.

Our stories are all different. I'm no longer copying a page from yours and comparing it to mine. I am over it. Done.

A mom who has used formula with her kids and yet who still feels that they are INTELLIGENT and have high immune systems and have as few delays as possible connected to disability.

p.s. you can use that same statement for different birthing plans. If you were wincing at my mention of natural birth...I think that no matter how birth goes down for us- it is a success when we have a baby at the end of it. No pressure, judgment, or inferior vs superior comments. Same rules apply. Motherhood is tough. Let's stop making it harder than it already is.

Thursday, August 1, 2013

I Hear You

Before Addison could be discharged from the NICU as a (5 week old) newborn, she had to have a hearing screening test. Because of the overwhelming nature of all of her other health problems, we didn't even worry about her hearing until they couldn't get a good read on one of her ears.

They recommended us to a clinic downtown which after an hour and a half of frustrating tests- they told me they couldn't get a good read on EITHER of her ears, but it appeared that she had some hearing loss- they just knew nothing about what was causing it or if it would go away.

This prompted us to visit the local Otolaryngology specialists. They still couldn't get a definitive read on either of her ears, but they informed me that they thought she did have hearing loss- it was like she was hearing everything underwater. They weren't sure if this was something that could fixed with tubes, but even if it could- her ear canals were too tiny for them to get tubes in there.

We went back for a follow up appointment to the Otolaryngology specialists after she had grown another half a year (all of these appointments occurred months to years apart) and in spite of all of their tests they STILL could not get a good read on her ears.

This left us with a 3 year old who had yet to have a definitive hearing exam. For so long this issue fell to the back burner because of her many other health problems, but she had reached a point where this was top priority now. She was hitting school pretty hard and was relying on her hearing for a lot of her development. We wanted-needed some answers. Should we get her hearing aids to help her learn better? Could another doctor get tubes in her ears? Was her hearing loss permanent or could surgery be performed to help?

I wanted to take Addison to the Boston Down syndrome clinic, but Dartmouth was closer, so insurance prompted us to go there instead. Back in May we went for an initial appointment. Surprise, surprise- they could not get a good read on her ears. But they said for sure- yes, there was hearing loss and once we got a better read on how much loss there was we could talk tubes or hearing aids.

This brings us today.

We went back to Dartmouth for a sedated hearing exam (sedated ABR). The sedation may seem extreme, but was necessary for them to finally get an accurate read on what is truly going on in those tiny ear canals of hers instead of the guessing game we have been playing for three years. She has been sedated four times before for four separate surgeries, so we didn't freak out too much about that part of it. The need for answers trumped the preference to not be sedated. While she was already going to be under- her new eye doctor at Dartmouth also planned to do a vision test since we have had so many conflicting reads on her eyes in the past. Sedated exams promised to be much more accurate.

Her last surgery was when she was under 2. Turns out its a lot easier to have a patient who can't eat before surgery when that patient is much more babyish. When they are old enough to find their own food- and fight you for it, but not quite to the point where they understand why demands for "cereal" and "crackers" and "cookies" are ignored by mean ol' mommy? Not easy. Also- I still had to feed Carter....who delighted in running out to Addison and flaunting his goods in front of his sister even though I was trying to feed him in hiding. Sigh. Not my favorite morning ever.

All of that aside- we headed in for the big test today. We took help with us and drove the hour and forty-five minutes to her exam.

Fully expecting to hear more about her hearing loss- just more specifically this time- you can imagine my shock and surprise when her sedated exam revealed that she had absolutely no hearing loss. Normal hearing falls between 0 and 20, and she scored a 10. Once you hit 25- that's when they start talking about hearing loss. Her ear drums looked beautifully healthy and there was no extra fluid present anywhere in her ears that would suggest a need for tubes.

You have to understand- we take Addison to the heart doctor? She needs heart surgery. We talk to a hematologist? She has transient leukemia. We take Addison to the physical therapist? She needs orthotics on her legs and feet. We take Addison to the eye doctor? She needs glasses. I'm just used to getting bad news about Addison's health, so I almost didn't know what to do about today's good news.

First of all, I can't even tell you what a relief it is to FINALLY have a definitive answer (you know- the answer that most of you got at your child's newborn screening?). Second of all, it's amazing to be able to confidently call her on her manipulations when she pretends not to hear commands she just doesn't want to hear. Third- I have watched her love for music grow and grow, and I love that this is one sense of hers that is untouched by Down syndrome. I have been thinking about starting her on violin for a while now, and after today's test I am considering it even more strongly.

Today was exhausting and definitely a hard day on the kids. But it was an amazing day at the same time. (But did I mention exhausting?) I find myself at a loss to put how I really feel about all of this in pretty prose, but I know sometimes that blogging about parenting a child with special needs is simply posts of small details written in exhausted gratitude from a day of testing that ended on a happy note (with cookies...chocolate, of course.) Maybe I will be able to write another post in a few days that says this all a little better.

But right now? I just want to say YAY ADDISON! Of course hearing loss wouldn't have changed our love for her- or our willingness to help her, but it was just such a relief to hear something that we get a break on. Something that won't be a struggle for her. And perhaps- something that will continue to help her build her vocabulary to the point where she can one day communicate with us.

Also- her sedated vision exam lined up almost exactly with what the doctor got with a wiggling, awake Addison a few months ago. (I was impressed.) We will be adding glasses to our lives very soon (but glasses that should actually HELP Addison this opposed to the pair we got when she was one that wasn't even close to being her prescription...)

Good day. Long day. Helpful day. Exhausting day. Celebratory day. Early bedtime day.