Monday, July 29, 2013

Double Trouble

When I watch their blonde heads nod in unison and then bounce away to trouble, carried by short little legs that move way too fast- I forget that I used to think that the days of carrying an infant AND a toddler (who couldn't yet walk) would never end.

When I listen to them talk- repeating words after each other, I forget about those never-ending days of silence where the only voice bouncing around our house was my own.

When I watch the beginnings of picking-up habits and abilities to carry our one step commands- I forget about the long months of trying to pick up the house for four therapies a week while juggling a non-sleeping newborn and a jealous toddler with absolutely no help.

When two wiggly bodies fight for a spot on my lap and two pairs of arms wrap themselves tightly around me for hugs- I forget about those long hours sitting beside the bedside of a very sick little baby girl, wondering if motherhood would ever be more than this for me.
When they share so nicely together or work together so brilliantly to carry out their plans of evil- I forget about the hard work it was to keep Addison from killing the unwanted newborn interloper in her only-child world.

When they perform acts of mischief and stare at me with those clear blue eyes and pouting little mouths- I forget about the year from hell trying to adjust to two babies because in that moment I'm trying too hard not to laugh at the sheer absurdity of their cuteness.
In fact, I forgot completely that they weren't always in this very fun toddler stage- until last Saturday when we were watching some old blog videos. We were all cuddled up together on the couch- Addison was leaning her curly head against my right arm; Carter was standing on the other side with one chubby hand resting on my left arm, and Daddy was taking up the rest of the couch while attempting some quick shut eye.

They are in this phase where they LOVE to look at pictures of our family and themselves, point their little fingers at individuals, and proudly proclaim "DADDY!" or "MOMMY!" or "CAR CAR!" or "ADDISIE!"

So we watched. They pointed. And I remembered.

I saw a very jealous Addison tackle a newly walking Carter after his first success shuffling along the couch. I heard a crying baby in the background while I tried to work on speech therapy with Addison. I saw the disaster of a house in the background of every video- completely ignored for the sake of putting one foot in front of the other. I observed a tiny, bundled up Addison take her first sledding run...and ski run. I saw them standing face to face- just laughing hysterically at each other (like they still do now), but as much tinier versions of themselves.

Probably the question I get asked the most is how far apart Addison and Carter are. This is hard to tell in person because they are exactly the same size. Exactly. Their growth spurts even seem to be in sync.
They are 19 months apart (Addison is 3 and a half and Carter will be 2 in a month), and I know I have done a lot of venting here on the blog about how rough it was to adjust when Carter was born. Because truly that year was the hardest of my life. But now?

Now Addison has a teacher. Carter has a sister to adore. They teach each other. They laugh together. They perform stop-mommy's-heart climbing feats together. They steal each other's food. They miss each other as soon as they are put down for sleep and care about nothing except what the other one is doing RIGHT then (and if the answer is not "going to bed like you" there is trouble to be had.)

Carter has just started a speech explosion. New words, old words, words I can't quite understand yet, babbling sentences that end in one recognizable word. I am SO excited to hear him exercising his vocals so frequently (with his finger pointed emphatically at whatever he is talking about.) But you know what's equally as exciting? Hearing Addison take a HUGE speech explosion of her own. Sister doesn't want to be left behind! And the interesting thing is? When she breaks out a new word- she pronounces is EXACTLY the same as Carter does. "Banana" becomes "Nana" "Addison" becomes "Addisie" "Drink" becomes "Gink" etc...
Addison has extremely low muscle tone and we have spent hours and hours with therapists working to get her to do things like climb, jump, and run.  She has shown absolutely no interest in doing those things during therapy. After all- those things are a LOT of work for her! What does interest her? Keeping up with Carter's climbing and jumping. Also- running after her brother after he has stolen her toy and is running away from her. After years of refusing to even try, she is now out of control with her mad climbing, jumping, and running skills. Skills that were taught and modeled to her by her competitive little brother.

I turn my back for a minute (how DARE I unload the dishwasher during daylight hours!) and they will both be sitting calmly on top of the changing table....or my dresser....or the table. Always together. Always exploring. Always finding opportunities to play peek-a-boo with each other and laugh hysterically.

They have merged so seamlessly into two halves of one whole that I forget that it hasn't always been like this. This also means I forget to talk about it- because it seems like it has always been this way.

So this is an update on their relationship of sorts. I was thinking last week how discouraged I was with this phase. Still a lot of work. Still exhausting. Still frustrating. But looking back and remembering how far we have come? A much needed shot of motherhood adrenaline.

As I stand in the landscape of my life, I don't notice the seasons changing all around me because I'm too busy watching each little leaf drop and tiny flower burst open. The tiny details capture my attention, and I forget to see the big things like...winter turning to summer.

I am thankful for summer. And I am so thankful that they have each other.
As I work through the thunderstorms, heat, and flies of this season- I press forward, knowing that before I know it?  A new season will be here. With new, exciting landscapes. And new troubles. So I don't want to miss the good and amazing that is here now. With every mosquito comes a beautiful summer night perfect for sitting out on the deck and reveling in the beauty of the stars.

In case you missed it, I posted a little about their relationship over at Enjoying The Small Things last week.

I also did a post at Mostly True Stuff on our Toddler Adventures. Update on that coming soon!

Thursday, July 25, 2013

Pregnancy Confession

Confession: I do not love pregnancy.

I know it must seem like I am crazy about it since this is my third go at it in four years, but the truth is- I do not do pregnancy well. At all.

I do not like having morning sickness for twenty something weeks. I do not like the intense back/hip pain that picks up as soon as the morning sickness finally leaves. I don't like the weird popping thing my ears are doing now and the dizziness. And I didn't like the body rashes during Carter's pregnancy or the threats of early labor with Addison's. I don't like feeling small bursts of energy in order to tackle my To Do list to only immediately feel sick again because I overdid it. I don't like not being control of my own body.

This non-love for pregnancy might partly have something to do with the fact that I don't really feel bonded to my babies until I meet them. Hand me that little bundle that I worked so hard to grow and my love for the experience exponentially grows. But during those very long months of hauling around extra cargo attached to my midsection- you won't find me writing warm and fuzzy posts about the miracle that my body is experiencing right now.

At times this makes me feel guilty. 

I see other people writing long poetical posts to their unborn child and the magic of every single blessed moment, and I wonder what's wrong with me. I see posts of people desperately longing to experience pregnancy- but can't- and I feel like I should appreciate the discomfort and obnoxious things that come with pregnancy more. I know it is a gift and a blessing. 

I love creating a family. And when I look around at the family I already have- I am SO thankful, and I know without a doubt that every moment of sacrificing my body was/is worth it. But when I am in those moments? I was/am counting down the days until I can meet the little person and start the bonding process.

As much as the physical things about pregnancy don't spell love for me, I think the biggest thing about pregnancy that I don't like is the fear. I wonder how much of this has to do with Addison being my first- the long pregnancy knowing that she had an extra chromosome and then finally meeting her and learning that she had soooo many health problems on top of her diagnosis. For a long time I had to struggle with the questions "Was it my fault she was so sick?" "Did I do something to cause this?" "Did I do pregnancy- wrong?" 

Now this is my first thought with every pregnancy. Every activity and chemical in my life gets reexamined a zillion times over.

Until I meet that baby and know that everything is OK- I have a hard time resting easy. This is so much more than "will he have hair?" "will he sleep?" "who will he look like?". This is more like "will he need surgery right away?" "will he have to stay in the NICU?" "will he breathe and eat ok on his own?" “will he have behavioral issues later on?”

I have heard people say that their children's intelligence and health has a lot to do with how healthily the mother ate during pregnancy and how she did everything "right." This makes me take pause and immediately revert back to the fear. Does this same thought go the other direction? Did I create the health and developmental problems in my child? Did the craving for Pop Tarts during Addison's pregnancy cause her to have severe pulmonary hypertension and holes in her heart? Because I had an unhealthy child- does that mean that I did even one moment of pregnancy wrong? 

This fear that I get during pregnancy stems back to the belief that I control the outcome of my child's life. The fear is created from a refusal to trust in an all-powerful Creator who puts as much care into creating my babies as he does everything else. Who not only creates- but protects and nurtures that child while allowing me to put in motions of my own. 

It's like I'm the toddler buckled into the toy car on the front of the grocery cart. I'm turning the wheel and proudly declaring that we are turning right because of ME without recognizing the one standing behind the actual grocery cart quietly pushing me along. In reality- that tiny steering wheel that I'm demanding a new direction with isn't attached to anything. It has no power.

I know that I do my very best with pregnancy- cutting out the wrong foods and drinks, eating as much of the right foods as my sickness will allow, and taking vitamins/exercising/seeing the doctor. I do pregnancy very by the book. In fact- I did Addison's pregnancy WAY more by the book than I did Carter's (mostly in relation to caffeine consumption) and yet she was very sick for a long time while he  is as healthy as a horse.

With pregnancy I have to exercise a lot of trust. My tendency is to blame myself, and this tends to rise up and try to take over at the slightest reminder of my fear. 

How do I combat this fear during pregnancy and the struggle to trust? I go to a power much higher than myself.

I really, truly believe this with all my heart:

Psalm 139
For you created my inmost being;
you knit me together in my mother’s womb.

14I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

15My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.

16Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be. 

This verse says nothing about the mother’s part in all of this (other than being the womb where the creating took place.) It doesn’t say, “For you created my inmost being and then my mother ate just the right amount of brain enhancing supplements to finish the job.” Or “All the days were ordained for me were written in your book before one of them came to be but then my mother messed up the entire plan by eating too many pop tarts.”

In Christian circles it’s easy to say the words that we trust God with our babies, but then in reality to hold fast to the good work that WE have done in carrying them. Or the opposite. Beat ourselves up for a baby that came out of us that needs a lot of extra help.

This is something that I have struggled with- a big reason why I do not love pregnancy.

I'm not saying we shouldn't take care of ourselves- or our babies- or follow certain rules. I am all for being healthy and taking care of our unborn children. I'm just saying that no matter our best efforts, we are not the ultimate deciders of the lives that we are creating (or even if we get chosen to carry the life in the first place.) We can do everything right and get a "wrong" outcome, but then that still is our "right."

I know some people think that God gives special babies to special people- but I don’t. I think that God creates special order babies for every family. The fact that I was given a child with health problems and a developmental disability? Was just the special order that God knew our family needed in order to be complete. We had an Addison-sized hole in our family, so he created her perfectly and allowed me the privilege to carry her and become her mother. There were no mistakes here. 

There is a good chance that this is my last pregnancy. We haven’t really decided for sure yet, but as I rub my belly, feel those kicks, and try to imagine the magic in every moment of possibly my last pregnancy- I still can’t honestly say that I love every moment of this.

I don’t enjoy being stretched in my faith (or other places ahem.) My  body doesn’t do this well. My need to control doesn't trust easily. But I am thankful. And I am excited. So excited- to have another little boy. The process getting there just always isn't "rocked out" by me. It's more of a "grin and bear it" type of situation over here.

So that’s my confession for today. I don’t love pregnancy. And even though the mom blogs would make me believe that everyone else THRIVES on morning sickness and gets a high from labor (don’t even get me started on labor)- I don’t. And I refuse to feel guilty. Because this is my story- and I squeeze the good and amazing out of a lot of moments. I LOVE my babies, and I love getting to raise them. Just sometimes I have to put in my time as an intern before I finally get the job I was going for in the first place. A hazing ritual of sorts. But of course...worth it.

Wednesday, July 24, 2013

To My Princess and Princes

Dear Addison and Carter (and unborn #3),

This week a real, actual prince was born. It was kind of exciting and somehow seemed romantic even though mommy knew all too well just how exactly unromantic the events in that hospital room were. (I have YOU to thank for that!)

I know right now you probably don't care about the prince of your generation, but someday maybe you will- so I thought I would just write you a quick note to reassure you that in my eyes- you will always be my princess and princes. No competition- you will always be the most special and amazing children in my world.

Even though the kingdom you are inheriting has less to do with a majestic land and more to do with this:
(How sweet of you to try to take over your duties early! I will hand over this sceptor any time...)

and your table manners might send the Queen into an early grave:
(do the pearls cancel out the open mouth "see food"?)

and sometimes Mommy just needs a royal break of her own:
There's just something about the way you look at me
 and the way you look at each other
that makes me feel like the luckiest, most royal lady alive.
So I just wanted to say thank you. Thank you for choosing me to be your mommy even though I'm sure a royal family would have been way more fun. Thank you for letting me love you even though our life is very imperfect and quite plain. I find my boring lil' life to be quite fabulous ever since you came into the picture.

Much love,
(or Mummy...if you prefer)

Monday, July 22, 2013

Turning Off Down Syndrome

So apparently scientists have now figured out a way to turn off the extra chromosome in a lab dish- in a sense, getting rid of Down syndrome- allowing higher function for individuals with Down syndrome and taking away some of the challenges and health risks associated with that extra chromosome.

Some of you may be so well versed on this already that you are sick of talking about it. Some of you maybe haven't heard about this at all. As someone very closely connected with Down syndrome, I heard this news and needed to sit on it for a while before I could put words together. I briefly scanned the article and then set it aside, trying to process this.

"Turn off Down syndrome."

There are concerns that this will fundamentally change who the person is- who the person was meant to be. There are arguments that it's selfish to not give the aid and help if it is available.

My first thought is- if I agree to "turn off" Addison's extra chromosome, does it mean I have been lying for the last three and a half years when I have said that she is perfect the way she is?

Is this like buying a pair of glasses for a nearsighted child, or is it treating Down syndrome as a defect in need of a cure?

When Addison was a baby, it was easy to dress her in cute outfits and use her as a prop- putting words in her mouth and shouting to the world how PERFECT she was JUST the way she was. It was easy to set the world's expectations of a little girl aside and focus purely on what I was given.

As she has grown into toddlerhood and taken this next phase by storm, it has been more difficult to place my take of what Down syndrome means on her. Because now she has her own take on it. She is still perfect. She is still wonderful. But I can see it in her eyes- the frustration when she is trying so hard to say something, but can't. I can tell when she wants to give up with a particular physical activity is harder for her to do than her brother. I have watched her cry as she recovered from surgeries that no little girl should ever have to face. And I have held her hand through hundreds of hours of therapy...where at times- if she could have cursed at us? She totally would have.

If there is anything I can do to help make Addison's life easier for her? I would do it in a heartbeat. But what if by changing this part of her- her entire personality is changed? What if the extra chromosome is more responsible for who she is inherently as a person than scientists would initially give it credit for? How can we separate the extra chromosome from the beautiful person she is?

But in the same breath- would this be any different than a surgery to help her heart work better? Or hearing aids to help her hear better? Or orthotics to help her walk better? Or therapies to help her learn faster? Would this one thing be able to take care of all of those issues with one drug therapy?

I've heard people say that individuals with Down syndrome are here to teach the world about kindness, difference, and love- therefore we can't deprive the world of that lesson by removing the effect of the extra chromosome! While I agree that Addison has taught our little world these things, is it fair to her to NOT give her available drug therapies just because WE need her to be a certain way? But then again...what if the therapies change who she fundamentally is- who she was created to be? What if this is a version of playing God by changing something beautiful that was created perfectly?

This new discovery raises more questions than it answers. The moral dilemma is tempering my excitement over the possibility of helping Addison achieve things more easily because of a simple drug therapy.

I don't think these questions will have answers for quite a while. I for sure am not offering Addison up as any sort of guinea pig in this experiment. I DO love her for EXACTLY who she is, but if someday safe, reliable drugs that could help improve her cognitive function as an adult without changing who she is was available? We would weigh the risks with the benefits and take it from there. Addison definitely doesn't need a "cure." But I make no secret of all her therapies and glasses/orthotics/possibly hearing aids help so that she can live life to its fullest. This is a tricky balancing point.

After saying all of that- I don't even really think that this is my decision to make.

It is Addison's decision.

This is her life. Her level of function. And by the time this drug should be safely available- I have a feeling that Addison will be old enough to have a very strong opinion of her own.

Meanwhile? We keep enjoying every day to its fullest- with that extra chromosome very much "turned on" and creating something very beautiful in our lives.

Wednesday, July 17, 2013

Trusting The Teachers

This past February, Addison started preschool in the EEE (Essential Early Education) program at the local public elementary school. On her third birthday, she was cut off from the Early Intervention (EI) that we had done weekly for the past three years, and all of her therapies resumed at preschool with new therapists in more of a classroom setting.

She was ready for it. Only two mornings at week from 8:30-10:30 Addison absolutely adored going to school. As an added bonus, it was awesome to have one-on-one time with Carter during those mornings.

I was sentimental thinking of her growing up to the point where she was ready for school, but I didn't give too much thought to the quality of the teachers I was entrusting her to because they were awesome, following on the heels of three years of awesome therapists. They bent over backwards to make sure I knew that in their classroom Addison was loved, and they were so proud of all her hard work and progress. I attended IEP meetings, I went to a day of school, one of the therapists came to our house once a week for continued speech therapy. I had a good handle on what was going on when I dropped her off, and I was so thankful for the incredible care that my daughter was getting.

February- June was full of school mornings where I happily dropped her off and thought no further about it. Her teachers were amazing, the classroom was wonderful, and the environment was the type of environment where Addison thrived.

We then had a slight break before summer school began. I had a choice to not send her to summer school if I didn't want to, but breaks aren't really good for Addison because not only are we NOT progressing- we are losing ground (especially in speech.)

The first day of summer school arrived and once again, I dropped her off- cute outfit (check), pink backpack (check), appropriate snack (check)- not thinking beyond that. Happy to resume my mornings with Carter and looking forward to seeing her smile when I would come pick her up- I gave no thought to the new classroom, teacher, and school except for transferring all the feelings I had for the last classroom over to this one.

Until a couple weeks in when I stopped to really think about the impression that I was getting from the teacher. Nothing serious. Nothing earth shattering. I just got the impression that she didn't really care as much about Addison as I was used to all of her other teachers caring.

Now I am the first to admit- I am new at this. I make mistakes- lots of them.

I am also the first to admit- I am EXTREMELY protective of Addison. I am very sensitive to her disability and when given the choice I wrap her up into a protective layer of Mama Bear and refuse to let the world in- just in case she could somehow be harmed or even just not understood.

After an innocent interaction with the teacher that kind of pushed me over the edge, I was imagining the worst about this classroom. (Side bar: I know now that in this sort of situation you should NOT post about the specific incident on your facebook page. You can't truly convey attitude, ton of voice, and body language impression or every detail of the situation in a facebook status which means that a little war in the comments benefits absolutely no one because no one can really see the whole story. Sometimes the real story is not in the tellable facts of the story. Not to mention, it is probably not very respectful of the teacher. Consider this one of my mistakes.)

Because of this impression I had gotten from the teacher, all of a sudden I had a panic attack- I drop Addison off, pick her up, and SHE CAN'T TELL ME WHAT HAPPENS IN BETWEEN.

Good or bad.

I started thinking about stories of friends who found out that their children's teachers put the child in "solitary confinement" i.e. the closet to calm them down. And then left them there most of the morning. I thought of horror stories happening to children with special needs simply because the teacher could get away with it- a nonverbal child can't tattle on abuse.

I thought of sweet Addison- not able to defend herself- not able to help herself- not able to tell me if there was ever any sort of problem, and I realized how hard this school thing was going to be for the next fifteen years. (Yes, I know that my imagination is extremely overactive.)

This is so much more than dressing Addison to the nines, placing a tiny backpack on her back, and sending her off to play with a new set of toys. This is a whole new level of trust. A new level of vulnerability. A new level of growth.

After I calmed down from the "impression" that I had gotten from the teacher, I came up with a plan to set my mind back at ease because after all- what do first impressions really mean? I wanted to give this teacher the benefit of the doubt. I wanted to show this teacher that I am an annoying, over-the-top parent that will be involved in as many details as possible and who cares very deeply about what is going on. I wanted to watch Addison in the classroom and truly get a feel for her reaction to the environment. I wanted to nip my overactive imagination in the bud and bring myself back to reality.

So I asked if I could shadow Addison for an entire morning of class and which day would work better for the teacher? The teacher looked surprised but gladly set up a morning that would work for me to come shadow Addison.

Turns out? This classroom and the teachers working with Addison in summer school are awesome too.

I watched Addison confidently play with toys and books and then PUT THEM BACK where she got them. (WHAT?) I watched the teachers work with Addison both with therapy and play and it was clear that while they don't know Addison very well yet, they respect and care for her a great deal. I got a better feel for the environment of the class- something I couldn't sense from a quick drop off/pick up with a little boy attempting to run to the farthest corners of the school on my watch. Clearly, this environment was a positive, well-supported, happy place where Addison was in her element.

I sat beaming with pride as she pulled out the lowest chair at the table, sat down, and played with the play dough- making "P" sounds. When she wanted a new toy? She left her chair, carefully retrieved a basket, balanced it all the way back to the table, neatly sat back down in her chair, and independently began to play again.

They practiced walking up stairs with Addison, and she did better than she has ever done at home. At snack time there were other kids that needed more help than she did, so she was left alone with her open cup, and she didn't spill one drop (charity begins at home, young lady!) When she was ready for story time, she sorted through the stack of mats until she found the one she liked. When I saw her carrying the mat of her choice toward the story time corner, I noticed it said Aa Ants (Addison) on it. I don't know if she recognized the picture of ants, the Aa, or her name, but I had no idea she could do that.

I realized a few very important things during this shadowing.

1. First impressions can be wrong. Very wrong.
2. Addison excels at school, and I should continue giving her every possible opportunity to be in this sort of social environment.
3. I need to continue to grow as a new parent to this school thing- which means understanding and appreciating everything these teachers are doing for my child beyond a cute gift on teacher appreciation day.
4. I have been underestimating Addison in a couple of areas- her ability to work neatly and clean up after herself, and the need to begin working on letters and more picture recognition.

For three years, I sat through (most of) four appointments a week with different therapists, and I could watch and listen to every single thing. I got spoiled. No, I cannot control every second of Addison's education, and I don't feel that I have the expertise to give her at home everything that the EEE program can offer her at school. I don't know how I am going to handle every "first impression gone wrong" in the future for Addison's education, but I am very much at peace again about summer school.

The funny thing is- I used to be a teacher. But I never really appreciated the huge level of trust being put on me by the parents with their children or even remotely understood how to work the parent side of the parent/teacher relationship. True, I was teaching high school, but does this need to trust the teachers ever go away?

If you are a teacher- especially a special ed teacher. THANK YOU. I know you are putting huge amounts of effort and care into my child. Please be patient with me (and parents like me.) I want the very best for my child, and sometimes I get off the mark with my attempts to protect my sweet Addison who cannot protect herself. I understand if our personalities don't gel or if we aren't besties from the moment we meet, but all that really matters to me is that you care for my child and her need to learn. I vow to you that I will do my part and focus on my continued need to learn- how I can best be there for Addison...and best help and appreciate those who are trying to help her.

Note: This is not to start a debate about homeschooling vs private school vs public school. I understand and respect that we all make different choices in these areas. This EEE program is the right choice for my family right now. The point of this post is really to talk about my adjustment and control issues of letting Addison go as she grows- not to spark a debate.

Monday, July 15, 2013

"The most important thing is that this baby is healthy"

"The most important thing is that this baby is healthy" or "As long as this baby is healthy NOTHING else matters."

I can't tell you how many times I have heard these phrases used. Pregnant friends and non friends alike- these seem to be catch phrases for almost every soon-to-be mama.

Before Addison, this phrase meant nothing to me- except for the fact that "healthy" was truly code for "nothing wrong." After all, a baby could get a prenatal diagnosis of an abnormality and yet still be completely healthy.  But there was no neat and tidy way to wrap up this sentiment, so "healthy" was just widely considered to do the trick.

After I went in for Addison's 20 week scan and had my world shaken, every time I heard these phrases it seemed almost like a personal attack.

I translated it as "As long as this baby is NOTHING LIKE DEANNA'S BABY, nothing else matters" or "The most important thing is that this baby is NOTHING LIKE DEANNA'S BABY."

Especially in that first year of Addison's life when I was still hurting, still processing, still feeling robbed  from an experience I thought was to be mine. I would see someone say something about just "being thankful that the baby is HEALTHY!" and feel like it was a knife to my chest. Surely they were spitting that in the face of me and my baby who was still immobile and on oxygen long past the point she should have been crawling.

As I have grown past the rawness of that time, I realize how ridiculous my old translation sounds- making someone else's joy over their unborn child somehow all about me. I was viewing everyone else's experiences through the hurt of my own, and I am happy to say that I have moved on from the offense that I used to feel over these innocent statements.

Even though my baby was considered by the most liberal of terms to be extremely unhealthy- both in diagnosis and in actual health, I have grown into a joy and contentment with that being our path. So even though the initial memory of that time holds great hurt, my daughter's actual diagnosis has just slipped quietly into our normal, providing a life nothing like the painful one I was envisioning.

That being said, I know from personal experience that health in a new baby is NOT the most important thing. Life is. I have experienced an unhealthy baby. I have watched my sister lose her newborn. The two can't even compare. I still had a baby to love- even though I had to learn a new way to love her. My sister was left with nothing but a broken heart.

Even as I type this out- I know that perhaps people are really meaning "The most important thing is that this baby is healthy enough to live." Who really knows. I know I am done trying to figure out what people mean when they say this- as they are the only ones who truly know their hearts.

So now we get to the point of this post- why have these phrases been on my mind a lot lately? Because here I am- pregnant with baby #3. And when I went in for the halfway scan a few weeks ago, all I could think about was Addison's 20 week scan and all of the anguish that accompanied it. Something about the experience of finding out gender and checking for soft markers, etc- catapulted me back four years ago when I was a first time mom.

Naive, excited, worried about nothing beyond two things- gender and was I getting to fat too fast? Sure, I knew the things that "could" happen. But they would NEVER happen to ME.

But then they did. I was that 1 in 1400.

And today I am beyond thankful that I drew the lucky card because that brought me my perfect daughter Addison, but when I was lying on the table waiting to hear all about baby #3 all I could think about was the million different ways this could go wrong. Ways that are much more difficult to deal with than Down syndrome. Ways that could end in the death of my baby before I can even say hello, or perhaps immediately after I say hello. Ways that could earn me a new category of special parenting that I know nothing about. Ways that mean another year or ten of surgeries.

And I was thinking- if there is even the tiniest percentage chance of it happening- it will probably happen to me.

But as I felt my mind mulling over the desire for a "healthy" baby, I felt like the biggest hypocrite alive.

As a special needs mom, aren't I supposed to declare that I can handle ANYTHING? Aren't I supposed to say that I have one child with special needs, nothing in that ultrasound could scare me?

But it did.

And when I came back here to the blog to announce that we were having a boy and that there were no concerns, I felt like I needed to somehow explain my happiness over this. But I couldn't really put it into words.

I have a child with special needs. I love her so fiercely it hurts. Her diagnosis is included in this love because it is part of who she is.

I am pregnant with a baby boy who I know nothing about. I love him so fiercely it hurts. Whatever diagnosis' he might carry is included in this love because it is a part of who he is.

But that unknown factor? Still scares me. And I think that's OK to admit.

Of course Carter? I really know nothing about his future either. And that terrifies me just as much as the future of the other two.

Parenthood is so completely out of my control, and as a control freak that drives me CRAZY. As I watch my belly grow day by day and I wonder about the little person inside, I hate that I can't control this little boy's life to be easy breezy and wonderful every step of the way.

I feel the kicks and I think about what kind of person he will be. I wonder how he will fit in with his siblings and what color his hair will be? Will he be a happy child? Moody? Will he finally be my first cuddly baby...or am I due Ironing Board Hugger #3? I wish there was a prenatal way to tell me every single thing about him NOW.

But special needs parenting has taught me that it is OK to not be in control and know EVERYTHING about my children's lives right now. Because someone much bigger is in control and knows every single detail before they happen.. And His plan is always better than what I think I want for myself and my family.

Surprises may initially seem bad. Surprises may be initially painful. But surprises in parenting I believe are sovereignly ordained by someone who is never surprised and who truly wishes good for us. The journey of uncovering those surprises one by one? That's life.

"As long as this baby is healthy, nothing else matters."  WHAT DOES THIS REALLY MEAN?

I think perhaps each of us would define that phrase differently. It carries a lot of weight for some- it is just words for others. For me? It's a reminder to trust. Trust that the person who created my baby has a bigger plan than what I can see. Trust that even if that baby's life doesn't last as long as I think it should that there is still a bigger plan even when it only appears to be grossly unfair and wrong. Trust that any sort of difficulties that might be in this baby's life- that is all part of a perfect design that I am blessed to be a part of.

So as I have finished another 20 week ultrasound, I marvel in the gift growing inside of me, and I look forward to meeting him- even though there are no doubt still many surprises still ahead. But by experience, I know that I am only expected to take this journey one day at a time. If my experience with Addison is any indication......surprises? Can be exactly what I needed in my life....but didn't even realize it.

Wednesday, July 10, 2013

Lemonade, Yogurt, and The Future

I usually am not a very patient person. Except with Addison. For some reason, Addison pulls out of me this patient side that I never even knew that I had. So next time I go off on a "she's made me a better person" rant, just assume this to be one of the many reasons.

But every once in a while something will happen with Addison as a direct result of her inability to communicate with me that will stretch this patience to a place of nonexistence.

Someone made a comment on the last post about how you can be completely OK with your child's diagnosis, but still have days where you are frustrated and even a little bit sad. And that is OK too. I completely agree.

It's so funny because later that afternoon, I had one of those moments.

We had just arrived home from the grocery store. Walking in the door from the grocery store with two toddlers at our house is a bit of a circus. You're juggling bags, you're convincing cute little stubborn faces that coming inside the house will make them MUCH happier than staying out on the porch to play, and you're trying to remember where you put those crackers that you "craving bought" because you're going to be sick if you don't eat them NOW.

And on this trip back in, I was feeling exceptionally dizzy. I just wanted to lie down. I had been extremely dizzy for days but braved a short trip to the store because we were running out of that super important item called...wait....what was it? Oh yes, food. We were out of all food.

I successfully got both kids in the house and headed into the kitchen to put away the cold items that no doubt were already baked, spoiled, and wilted from that short trip in from the store.

And of course there was no room in the fridge for the two gallons of milk I bought, so I pulled a gallon pitcher full of ice cold lemonade out of the fridge and set it on the counter next to the yogurts that I just bought.

I swear I turned my back for ten seconds and Addison had that pitcher of lemonade down on the floor. Spilled. All of it. Ice cold, perfectly made, STICKY lemonade was now covering every inch of kitchen floor. I was super dizzy and nauseous since I had yet to find those crackers, and I just lost it. This is something that we have worked on time and time and time again. NOT pulling everything off the counter. She knows better, and I was beyond frustrated.

"ADDISON!" Her eyes turned very big.


Of course right then the kitchen became a super irresistible place for both kids to play and splash...properly soaking each foot and hand in stickiness so that the trek out of the kitchen would make a nice trail around the entire house.

"GET OUT OF THE KITCHEN NOW." I admit my voice was probably raised higher than it should have been. But sometimes it seems like this is the only way they will take me seriously in situations like this.

The world was spinning around me. Must. clean. up. lemonade. I turned on Elmo in the living room to distract the sticky troops.

I was mopping up the worst of it when I saw Addison crawling back through it.


I placed her back in the Dining room. A second time, she came back in, crawling through the lemonade with determination.

"NO NO NO!" I did not scream, but I did yell. WHY WOULDN'T SHE JUST OBEY? So frustrating.

A third time. She was crawling through the lemonade.

"NO!" Seriously?

I finally finished getting up the worst of it, so I let her crawl through since she would not be dissuaded. I looked down a few minutes later and she was holding a Greek yogurt. One of the ones that had been stacked next to the lemonade on the counter.

But she wasn't just holding it. She had gnawed through the lid- in THREE places- and was licking up the yogurt through the holes.

She was hungry.

Realization dawned on me. I got her a spoon, her yogurt, and I set her up at the table. She polished off a yogurt and a half before she stopped to take a breath.

She was very hungry.

This seriously made me just want to cry. Why wouldn't she just TELL me that she was hungry? She can sign "yogurt." She can sign "eat." But she did neither. She tried to get it herself, made a giant mess, and didn't understand when I asked her to put neatness in front of her extremely empty belly. She was HUNGRY.

It's at times like this that her diagnosis makes me sad. When I look to her future, I'm not sure what it will look like, but my dream for her is that she will someday communicate with me her wants and dreams.

Who cares what I want for her life. What does SHE want for her life?
I want to help her. I want to be a friend to her. I want to be a mentor to her. But all of those things require something from her- communicating how I can best fill those roles in her life. I can have my visions about this until I'm blue in the face, but this is no longer about placing a caption bubble over a cute baby with a pithy saying straight from my mouth to her picture. She has her own pithy sayings to share. But she can't communicate them.

She has her own thoughts. Her own wants. Her own opinions. I want to know them.

I know that this is perhaps oversimplifying the question "What Mysteries Do You Want To See Unraveled For The Future Of Your Child With Down Syndrome." But I know that communication is a big issue for individuals with Down syndrome.

Addison is smart. Very smart. But she can't always convey that to me in words or even signs, and I'm not always sure why. A lot of her smartness is locked up inside of her. And this is one of the things that isn't guaranteed to change as she grows older as it might be with a more typical child.

I hope that therapy continues to advance. I hope that Addison will continue to work as hard as she is working. I hope that we can figure out how to get from a toddler unable to tell her mother JUST how hungry she is to an adult capable of communicating beyond basic needs- to dreams, hopes, and fears.

I still tear up every time I think about how hungry she must have been, how badly she wanted that yogurt, and how angry I got at her. A simple communication issue that could have been easily solved.

I know that for Addison to be a nonverbal adult is not completely out of the question. So I guess that is my hope that I'm putting out there for the future. For me to be able to see inside my daughter's heart because she chooses to let me.

But meanwhile? I learn to be patient. Even more. Because I love her dearly, and if being her mother requires the new skill of mind reading? I will work on it. Because she is totally worth the effort.

Monday, July 8, 2013

Processing the Diagnosis the WRONG Way

It bugs me when I hear special needs parents criticizing another special needs parent for the way in which he/she received the diagnosis of his/her child. I'm speaking specifically of a Down syndrome diagnosis, since that is the sector of special needs parenting to which I am a part of.

I've heard stuff like:

"I can't believe she said all those horrible things she was thinking when she heard about her son's extra chromosome! She grieved TOO MUCH and was just so extremely selfish about it! It's going to give the world an even more negative view of Down syndrome than it already has!"


"She didn't grieve AT ALL when the doctor said her new baby would always be different??? WHAT IS WRONG WITH HER? Clearly she is lying and is putting on a show for us all. I bet she cries herself to sleep every night when no one is watching."


"She only grieved for ONE DAY and then she was just....over it? That makes no sense to me? Clearly she is fabricating some sort of story simply for a dramatic blog post. Because obviously that can't be what REALLY happened."

My story definitely falls into the first category of grieving "too much"- according to some standards. The amnio results were such a surprise, and this was so far outside of my plans that it took me a long time to move past the initial shock, fear, and horror of what I thought this meant.

But the entire experience of receiving her diagnosis was so painful, so extremely personal, and took everything I had to survive it one day at a time that the thought of someone criticizing "how" I grieved through the news makes me want to punch someone in the face. And trust me, I am not a "punching in the face" kind of person.

If you really think about it, special needs parents are all completely different. The ONLY thing that they have in common? This diagnosis. Because even their children with the diagnosis are different. The ONLY common thread is that tiny bit of news that sets the whole "special needs parenting" train into motion. We're talking different religions, different backgrounds, different lifestyles, different preferences, different outlooks on the good and the bad, different choices in just about everything. So why would we think that all of these different people would suddenly join forces and respond the EXACT SAME WAY to this life changing bit of news?

For someone to insist that there is only one correct way to receive this news is for them to snidely suggest that their experience and response is somehow superior to everyone else's. When in all reality? It is just another special needs parent's story.

We are all different. We all have different stories. And each and every story is no less real and right.

No doubt your story is entirely different than mine. Hold tight to that- because it is yours and no one can make you feel lesser or wrong because of a difference in opinion and response. Ummmm, isn't that what we're fighting for for our children? Difference=not a bad thing?

The important thing is that we somehow arrive at a place where we can love and nurture our children.

Whether this means "grieving the child we thought we would have so that we can celebrate the one that we DID have" or saying that "the child that we got WAS the one that we were meant to have" or simply not seeing a negative in it the end of the day it doesn't matter.

We all have a story. We all have a voice. And it bugs me when I hear of a special needs parent elevating their voice in a chance to put down another special needs parent's story. It makes no sense to me.

No one can claim to be the parental expert on Down syndrome because no one is the parent to every single unique individual possessing the extra chromosome. We are all simply experts on our own children- extra chromosome or not- because we are the ones who know them and fight for them the best. And no two children with Down syndrome are the same- just as no two children without Down syndrome are the same. Along those same lines- I would venture to say that no two journeys to becoming and accepting the responsibilities of a special parent are the same.

That's something that I truly love about the blogging world. It gives a chance for many unique voices to contribute a wide variety of experiences with children with special needs and in doing so give a broader picture of this special needs journey for all of us. Special needs parenting is not about a solo event where ONE singer performs to represent the whole, no matter how beautiful that voice may be. Special needs parenting is a choir made up of individuals as different from each other as the unique children that they are raising their voices for. The world needs to hear that choir. Not just the strongest individual voices that seem to have it all together.

This blog is my safe space, and I have shared my story and singular voice along the way these past three and a half years. I have always appreciated how respectful and encouraging all of you have been- even if your story has been different than mine. No one can judge the way we feel about a certain situation. And no one can judge the way we work through those feelings to arrive at a better place in parenting.

So to all of you- thank you. Your support has meant the world to me. I hope that I can provide that same sort of support and respect to those who need it as badly as I did/do.

If you find yourself grieving over a diagnosis. I want you to know that it is OK. I respect your process of getting from there to here, and I don't think that anyone should tell you how that should specifically look. If you find yourself with a new diagnosis and with no grief at all? I want you to know that it is OK too. I respect your process and journey, and I don't think that anyone can tell you how that should specifically look.

Let's focus on the important part of this all. The love and joy that can come from parenting a child- any child- when we can finally get to the place of accepting that child for exactly who he/she is as opposed to who we think that child should be. The process of getting there really doesn't matter.

Embrace your journey. You are the only one who gets to travel it, so enjoy the ride.

Wednesday, July 3, 2013

Gender Reveal

Today we found out.....

...that Addison will be the rose between two thorns, the princess between two princes, and the boss lady over her two male servants.

(jk about that last one...sort of)

I was a bit nervous about the appointment, since the 20 week ultrasound is where everything fell apart for Addison's pregnancy.

But today the detailed Level 2 ultrasound revealed absolutely no concerns. Obviously this guarantees nothing, but it was reassuring to hear nonetheless.

During the scan, our baby proudly flashed us this (if you can tell what this is...I am sorry):
And then promptly reached a hand down to "that area" and began to (ahem) "play with himself." After which, he took that same hand back up to his face to dig for gold in an earnest nose picking expedition.
He's going to be a real catch....warn your daughters.

(I thought the ultrasound tech was going to fall off her seat she was laughing so hard)

In all seriousness...we are excited to be welcoming another boy to our clan. 
When I got home I told Carter that he was getting a brother!!!!! His response? "Cupcake!!!!" To be fair, sometimes it's hard to concentrate on the truly important things when Mommy brings cupcakes home and sets them in plain sight. Who cares where she went or what she found out. CUPCAKES!

None of the profile pics were terribly clear because he was moving so much during the entire thing, but here you go:
Baby #3 
Can't wait to meet you in November, big guy. 

Tuesday, July 2, 2013

On Being A Stay-At-Home-Mom

Those of you who know me through this blog know that I am a stay-at-home mom. Those of you who know me in real life know that I am a very driven person.

I will be the first to admit that those two things haven't always been the best combination for me.

When I was still working as a high school music teacher, I desperately wanted to stay at home with Addison. Her schedule was extremely crazy, and I had to miss a lot of extra work for her heart surgery. I just wanted to be able to put her therapy and health first and not worry about work on top of everything else that I was juggling.

A few months before Carter was born, I taught my last day and ignorantly thought that life would be PERFECT now that I was a stay-at-home mom! Nothing else to worry about. Now I would keep house like a pro and mother like a rockstar! This would be easy!

Of course there was always that persistent driven voice (the same voice that prompted me to finish my undergrad at 21 and my masters degree at 23) that screamed "I NEED A GOAL. I NEED A BIGGER CAUSE TO WORK TOWARD THAN THIS DAILY DRIVEL OF LAUNDRY AND DISHES." At first I entertained my driven side with writing projects. Oh my how I love to get my teeth in a good writing project and make that my goal and passion. I love to delve in deep and not come up for air until I have paved a new path of serious improvement in whatever I'm working on.

But as soon as I would take a break from a project or finish something- a spirit of discontent would come back. WHAT AM I ACCOMPLISHING? Who am I? What am I besides a human mop/diaper wipe? What is the point of just DOING THIS ALL AGAIN when the kids will undo it in ten seconds?

I published my last ebook in April, shortly after finding out that I was pregnant. Extreme exhaustion from first trimester/chasing around two toddlers wasn't too far behind- forcing me into a writing break as my daily goal became: survive until bedtime. I still have a big project that I am working on (totally for a different post), and I was frustrated because I needed to MAKE PROGRESS and LIGHT UP THE WORLD one achievement at a time (well, my world anyway.)

This break has been good for me. It's caused me to step back and truly evaluate what this stay-at-home business is all about. I don't have a neat answer or a scientific definition, but I'm starting to see some fuzzy shapes in the distance come slightly into focus as I work to make my days mean something to my driven side that DEMANDS so much more than what toddler care offers.

The #creatingtoddleradventure project that I've been focusing on has truly helped put this into perspective for me.

I have realized that no, I am not clocking in billable hours and working toward my next degree of greatness.

I am creating an existence. I am telling a story. I am taking a day- a simple day- and painting it full of color, expression, and music. I am choosing what an hour means and how we will spend it.

I am not doing laundry, dishes, and baking. I am crafting this unique existence where tiny lives grow and learn from day to day. I am providing an environment of love and warmth- of happiness and and understanding. My housework efforts aren't drivel. They set the stage for magic to happen. Some days that stage will be chaotic. Some days neat.  I own both kinds of days with pride, knowing that this is the phase we are in right now and that the magic will happen either way.

I am not a human rag. I am the teacher of how not to spill drinks and how to treat the things we have with respect. I am not a line cook for two ungrateful people who like to throw food. I create daily masterpieces that we can all gather around as a family and unite over the day. Some days these masterpieces are Pinterest worthy. Some days these masterpieces look suspiciously a lot like Chinese takeout. I own both kinds of days with pride, knowing that this is our reality.

I am the stability, support, and at times hated-one of the little people who don't know of a life outside of the four walls of our house. I am the protector against the evil and heartache that exists outside of those walls. I am the molder of hearts and minds of little people who haven't been poisoned with preconceived notions yet.

Nowhere in my job description is a clause to compare myself to other moms who are doing it all SO much better than I am. Women who seem to be Martha Stewart's of housekeeping, gardening, cooking, and models for the Parents magazine with all of their parenting strategies. I am happy for them and their awesome successes (I learn from them when I can!).  But in the same breath I am happy for me and my awesome successes too. Those two versions of success will look dramatically different, but I know that that doesn't even matter. That is life.

I take my job very seriously, but until the last few months, I struggled with whether it was enough. 

When I would finish a day with the house looking exactly the same as it started (even though I worked like a dog to clean it all day); when I'm frustrated with disobedience; when I'm feeling lonely and cut off from society at large; when I would finish washing dishes just to have MORE DISHES CRAWL UP INTO THE SINK AND DEMAND TO BE WASHED; when I would look around me at the world moving on while I was stuck in toddler purgatory; when I felt like even my best efforts weren't good enough with this parenting gig...

I would wonder if this was enough.

I was pondering this a few weeks back as I rested on the couch after a particularly long day. I rubbed my growing belly and thought to myself- "I am growing a new life- a person- another child." That is why I am exhausted and getting even less done than usual. Is that a failure to achieve? Growing a new life sounds like a pretty big achievement to me.

I thought about all the deliberate adventure that we have been seeking out together. I thought about the communication advances in Carter and how he is really starting to talk to me (some full sentences!). I thought about Addison's long hugs after she wakes up from her nap and how her body just melts into mine when she clings to me like that. I thought about the excitement and wonder on their faces when I take them someplace new. I thought about their unique personalities stealing my heart just a little bit more every day.

I thought about this existence that I am creating. It's a delicate structure that is constantly changing from day to day. When I look back on the same existence a year ago, it's unrecognizable to me, but I didn't even notice the change was occurring because each and every day only made slight adjustments to the normal until I woke up one day and the normal included a big girl and big boy that make the tiny babies of their past seem like a joke.

I thought about how they are changing me, teaching me, showing me the person I want to be so that I can model what I want THEM to be like.

I thought about the memories we are building. The time well spent with each other. Filling full the moments that can never be gotten back- full of laughter and love.

I am a driven person. I know that someday I will get back into more writing projects and perhaps even back to some music teaching. Someday I will finish the projects that I have in progress. Someday my life will revolve around more work than vomit (don't ask.)

But right now? I hold in my hands a unique gift. The wrapping isn't sparkly and awesome looking. It's newspaper...full of coupons that I haven't yet cut out and will probably forget to take to the store anyway.

When I unwrap this gift, I discover a box full of sand. Sand quickly disappearing. Vanishing between my fingers no matter how desperately I try to hold onto it.

Time. I'm not always sure what to do with this time. I'm not always sure I'm cut out for this job. I'm not always certain I WILL survive to bedtime. But this time with my children is the biggest gift I could even ask for, and I am thankful.

As I consider the precious opportunity at my fingertips, I realize with certainty that it definitely is enough. This job of being a stay-at-home mom defies my driven side that insists that I go get another degree or perhaps win a musical competition of some sorts.

But I am OK that my life has been pared down to the basics. Past big achievements and down to the care and nurture of little ones who can't care and nurture themselves. Because this time has been teaching me what life is truly all about- what a day is really worth- and how I can best utilize the simple moments.

And those simple moments? Enough.

p.s. This post is not meant to spark a discussion about working vs staying at home. This post is merely a chance for me to talk about some of my issues with contentment in the path that I am walking right now.