Monday, April 29, 2013

Patience...or lack thereof

I wish Amazon sold patience.

You know:

Product: Patience
Price: Who Cares We Know You'll Pay Whatever
Description: The Missing Link To Perfect Motherhood

Seriously, I would be the best mother in the world if I could get my hands on ten more loads of patience...a day. (And while I'm dreaming, it would even be more convenient if those loads could be traded for loads of laundry.)

When my patience runs thin, or low, or vaporizes into thin air for no discernible reason (you get the idea), I could bring up the Amazon ap on my phone, add "Patience" to my cart, and with one click of a button know that more Patience will be coming my way- shipped in a cute little brown box, delivered by a smiling delivery man, expedited to my doorstep because I am a super important (read frequent) customer.

It could come in many different forms- a mild coffee that radiates calm and endless patience with each delicious sip. An ice cream with just the right amount of chunks- the crunchiness thereof providing amazing serenity of mind. A box of chocolates that soothes and repairs impatience with exploding taste buds. Or even just a box of tropical air that imparts to you a vacation-like peace upon inhalation.

If only it was that easy.

Perhaps my latest patience drought has something to do with my children's latest obsession with gleefully tossing their bowls of food onto the floor beneath their seats- over and over and over again. And then crying because they're hungry because they didn't eat enough before tossing it overboard. Perhaps it has something to do with the on again off again relationship they have developed with obedience. Perhaps it has something to do their burning curiosity to see what that neatly folded laundry would look like unfolded, in a pile in the middle of the floor, offset by a beautifully crushed pretzel.

Yesterday I was done. Just done. I glared at Addison who had just dumped dinner onto the floor beneath her for the millionth time that week. A floor that was now filthy because of this new habit.

"NO!" I said, not calmly at all. "NO, WE DO NOT THROW OUR FOOD."

I looked into her eyes. She looked guilty, a little confused at my tone, and definitely hungry because her dinner was now all gone.

I took a deep breath and wished this could be somehow easier, but knew that this is a battle that is just beginning. I adapted the serenity prayer to get me through the moment:

God, give me the grace to accept with serenity
the things that they willingly learn,
as well as the things they refuse to learn,
and the patience to keep teaching them anyway.

One day at a time. One drop of patience at a time. One hopeful perusing of Amazon at a time.

If only toddlers came with extra patience instead of extra laundry...we would all be set. They say that insanity is doing the same thing over and over again and expecting different results. This explains exactly how my children make me feel those days when I spend many hours teaching the same things over and over again- ignored each time.

I type this during nap time. Nap time: the battery charger for patience. See? I feel better already. Ready to face another day hour.

p.s. only one day left to take advantage of the new ebook thank you giveaway.

Friday, April 26, 2013

Selling Down Syndrome

Yesterday I met someone for the first time. She was lovely, gracious, and wonderful. Conversation led to all sorts of different places, but the one that sticks in my memory the most is the discussion we had about speech development.

She asked about Carter- whether he signed more or talked more. Because she was an older mom and lent such a safe environment to our conversation, I let myself be completely honest. It felt good.

My answer about Carter (he talks much more than he signs) led into me explaining how sometimes I get so frustrated because I feel like I've been working for three years on speech to have the final product of two one and a half year olds. But yet not even that because Carter's speech is so much ahead of Addison's speech.

The therapy, the exercises, the constant work for simple words over and over again- sometimes I find myself at a standstill- not having the energy to keep putting in the effort especially when it hasn't resulted in conversation with my three year old. It is frustrating. And discouraging.

I said that we have to work an extremely long time to see very little progress with Addison's speech, but when we do see small bits of progress- it is such a great reward and totally worth all of the work.

While I was venting, I mentioned how worried I am about her sugar intake and her recent desire to be eating it all of the time. Sugar is the only thing that has motivated her from day one. Right now we're using chocolate to motivate her to use the potty- in the past we have used it to motivate her for almost everything- PT, OT, and everything in between. It's amazing to see her work hard for a reward she desires, but at what cost? And because she is such a poor communicator, it's very difficult to get inside her head to see how we could cut sugar out completely and find a different alternative.

It felt amazing to be able to share that with someone who 1. wasn't out to judge me 2. had raised three children to adulthood and understands the frustrations that can accompany parenthood 3. was extremely sweet and kind- doing what I needed most- simply listening.

But then all of a sudden I felt guilty. She didn't have any connection to Down syndrome. She doesn't know Addison very well. She hasn't seen the huge amounts of good that offset that frustration.

All of a sudden, I wondered "Should I be selling Down syndrome?"

When I talk about Down syndrome- especially to someone new, should I be flying high the flag of AWESOMENESS and hide away all frustrations and worries? Should I refuse to let any bad creep into the conversation, painting a beautiful picture of a glorious childhood? Is it my responsibility, being so vested in a life with Down syndrome to SHOW THE WORLD how amazing it is to offset the high statistics of abortion and abandonment?

I think in my early days of blogging, this was my approach even though I didn't even realize it. Using Addison in gorgeous outfits as a prop, shouting the good, burying the bad, and refusing to work through certain frustrations because they were conveniently ignored for the sake of "preaching the good".

But as I sat across the table, staring at this wonderful person who I immediately felt was a kindred spirit, I pushed the guilt away.

Down syndrome is. And Down syndrome is a part of our lives.

It is not my job to sell my daughter as a worthwhile life to this world. It is not my job to sell Down syndrome as some sort of life accessory that adds a hint of fabulousness. It is not my job to bury feelings deep in order to make sure that this new friend walked away with warm, fuzzy thoughts about Down syndrome.

It is my job to mother.

And if that includes needing to vent to a brand new friend with kind eyes- then that is what I need to do so that I can return home to keep pushing on even though it is frustrating at times. I didn't get any answers or have a genie pop out of the nearest lamp and grant me enough wishes to solve my problems, but my spirit felt refreshed from being honest. It felt good to just be able to express myself without worry of how her response was going to make me feel.

Truth be told- parenting Carter frustrates me to no end. I'm frustrated by his sensitive gag reflex which lends to a lot of throwing up at inopportune times. I'm frustrated by his extreme curiosity which manages to get him into trouble faster than I can keep up. I'm frustrated by his overactive bladder and the diaper surprises that he delights in serving up.  I'm frustrated by his stubbornness, his messiness, his refusal to walk the beautiful line of reality that I have planned...taking instead a self-planned side route into disaster.

And yet if I say those things to someone in a need to vent, no one immediately jumps to the "well you must not love him" or "you must regret his life" or "clearly he is a mistake." So why am I afraid people will think that about Addison if I share my frustrations about parenting her?

My new friend last night smiled with encouragement and responded with words of kind understanding as I shared the things that had been heavy on my heart all week. My guilt fled away, and I knew that she got it. Parenting any child is rough. The "rough" will fall in different places for every child, and it's not our job as mothers to keep a stiff upper lip and refuse to acknowledge any bad. Because sometimes saying it out loud is exactly what we need to do in order to keep going to experience those great rewards that show up when we least expert them.

Monday, April 22, 2013

The Motherhood Concerto

Beginning in the sixth grade, I was required to practice 4.5 hours a day every day that I wasn't in school. On school days, this was cut down to an easy 1.5 hours. This was split three ways between clarinet, piano, and violin.

At first I resisted this schedule. I sometimes remember setting the timer, opening a book on my music stand, and practicing "long tones" for thirty minutes while I caught up on Trixie Belden's latest mischief and checking off my practice sheet as DONE.

But as sixth grade merged into middle school and then high school- I resisted less and less. Because I got really good at all three of these instruments. I enjoyed playing. I thrived on performing. My soul fed on one aspect of music that both captivated and frustrated me: perfection.

As I continued to practice, perform, and pursue this relentless need for perfection, I thought I had discovered myself.
As I went on to get a bachelor degree in music education and a masters degree in performance, I learned that in order to be perfect, not only could you not miss any notes- but each note had to approach the right way, end the right way, and the intonation and tone for all of the in between better be spot on as well. No room for error. Or else? You kept practicing those five notes over and over again until all of those things were rock solid for each note- every time.

Because of my endless hours of work on my own performing, I got very good at critiquing music (this is a fancy word for criticizing.) I could tear apart a performance- telling exactly which notes were missed, which notes were out of tune, and at which points musicality was evident. Or not.

I could snub my nose with them best of them at a bad performance. Or pitch a classic hissy fit after a performance of my own that was really quite good but I had missed those two notes so clearly I was a failure. I could talk for hours about awards I had won, concerts I had soloed in, ensembles I played first chair in- because my goal was constantly: perfection. And I was good at it.

After Carter Henry was born, it was decided that I should leave my job critiquing teaching high school music and focus on the madness of two babies close in age in a rapidly deteriorating home.

Staying home full time rocked my little world of previously sought after ideals. I was no longer the soloist trying to perfect one instrument at a time. I suddenly became the entire orchestra- required to play each and every instrument at the same time with the same standard of performance.
As I found myself knee deep in dirty diapers, dishes that refused to jump into the dishwasher on their own, laundry that tripled faster than I could curse it away, children that sometimes cried for no reason at all, and a house that hourly proved the law of entropy, I struggled with my obvious imperfection that didn't go away no matter how intense my work and practice to improve.

And not only could I not do this perfectly, but even after all my efforts to keep up with the house, menu, shopping, children, therapies, etc etc etc- there was no applause. No standing ovation for my hard work. No beaming smiles from a happy conductor. No satisfaction from finishing a performance and then moving on to the next.

There were just suggestions- "critiques."

Just as people critique musicians on a performance done well or badly, the world seems bent on critiquing on how new mothers take care of their children- whether they ask for it or not. Small little passive aggressive comments reveal a lot of hidden judgment.

"Are you sure she's warm enough in that?"
"You're really going to let him eat THAT?"
"I'm so disappointed you put a too strict sleep schedule in front of something as important as a church function. Clearly, you hate God."
"Your child acted out? Let me tell you exactly how that is your fault and what you should do next."
"WHY would you let your baby play with that???" (insert gasp of horror)
"Your daughter isn't potty trained yet? Are you not trying hard enough?
Since I put my motherhood life online, it's easy for those who I would rather not share certain vulnerabilities and weaknesses with to read them anyway. And then use them against me.

As a new mother, at times I have felt very criticized. Sometimes it's spoken. Sometimes it's just a glance- or a rolling of the eyes. Sometimes it's the deliberate silence when I most need to hear a positive answer.

When I was out in the audience watching the performance of motherhood, I admit I was the first to leave with my brilliantly worded critique in hand. It's easy to be the expert when you're that far removed from reality.

But now I'm standing on the stage, performing my heart and soul into motherhood- well aware of every single imperfection. I'm shaking, crying, nervous- because it is a difficult performance.

Every day. Every day is a difficult performance that I do imperfectly, but do to the best of my ability and with more musicality and spirit than I ever poured into my instruments.

And in past motherhood performances, I've stared into the eyes of my audience, begging to hear those little words whispered "You're doing a good job." But sometimes apparently those words are too difficult to utter.

My own demons of fighting toward perfection overwhelmed me. Why couldn't I do this right? Why was it as soon as I felt comfortable about one area of my responsibility another falls apart? Why couldn't I keep the house ahead of two toddlers that were intent on destroying it? How did everyone else make this look so easy? I so badly wanted to do this perfectly- why did that desire make all of this even harder?

I stood on the stage missing notes- telling myself that this performance wasn't for the audience- it was for me. And then my spirit of NEEDING perfection would overwhelm me and tell me that I was a failure. The audience's shrugs and rolled eyes merely added to that feeling.

I'll admit, this attitude controlled me for too long in my career of motherhood performances.

And yet, something has changed these past few months. I can't explain it. I don't even know what specifically changed. Chalk it up to some soul searching, to happy children, to some wonderful books that I've read, to taking some distance from the problem- I don't really know. But I find myself standing up on that stage more confidently.

I survey the mess around me- a mess I am doing my very best to keep under control. I think about the laundry that always seems to stay ahead of me. I picture my children's cute faces as they sometimes get angry with the choices that I make for them. I mentally write up a grocery list and then refuse to feel guilty that I need to buy so much more milk because my nineteen month son is still so addicted to his Bobble.
I stand on that stage, and I will myself to stop shaking. I stop comparing my work to a more perfect model that I've built up on my Pinterest boards. I face my audience that I feel so criticized by- and with my voice cracking from so much pent up emotion, and I shout,


I realize that tears are rolling down my face because I really do believe it, and I have felt controlled too long by the absence of that sentence in my own mind the past few years.


I lower my voice and continue.

"I imperfectly keep my house- but my children are comfortable and safe here. They play, they explore, they walk confidently in the space that they know is theirs. I imperfectly keep up with the dishes- but my family eats well and doesn't seem to care that the counter isn't always spotless. I imperfectly control the laundry of an active family,  but my family always has clean clothes to wear and when we have to search for clean clothes out of a basket- well then that becomes a game. I imperfectly organize and decorate, but it is my space to live and it couldn't represent my chaotic personality any better. I imperfectly mother my children, but no two children have ever been more loved and cherished. They know that they can count on me, talk to me, play with me, and simply cuddle with me for no reason at all. They know that no one will fight harder for them, laugh louder with them, or soothe tears with more sympathy."

I no longer get 4.5 hours a day to practice instruments that will give me high profile performances that make me feel good about myself.

Now I get days. Beautiful, endless, short, messy days to build two lives and make memories of a quickly fleeting time.
I have stopped listening to the audience because I don't have the emotional energy to give them the satisfaction of control. I have put aside my desperate need for perfection and focused on simply living- imperfectly.

I stand on the stage, performing motherhood one movement at a time. I miss a few notes here and there.  I laugh at my mistakes even though I'm being marked off for not keeping a straight face and hiding things under a cloak of perceived perfection. (Because sometimes the laughter over the ridiculous errors that come my way is the thing that makes my day. I love to laugh. Motherhood provides me ample opportunity.) My musicality doesn't sit well with a judge in the back corner. I tremble at times with the intensity. A small smile curves on my face at the sweet passages.

And when it's over? I won't even notice if there's applause. Because I no longer need it. One glance at the bright, shiny faces of my twinsies smiling back at me is better than an audience of thousands giving a standing ovation.

Friday, April 19, 2013

Teaching Obedience To A Child With An Intellectual Disability

Something miraculous has been happening around here the past few weeks.

Astounding. Amazing. Mind Blowing.

Perhaps to anyone else this might just be the activity of a regular day, but to me? Motherhood has never looked brighter.

What is this factor that has me gushing so melodramatically?

I'd better spell it out as to not jinx myself -O-B-E-D-I-E-N-C-E

My children have been obeying simple commands and requests.

It all started with Carter. Being quite the bright little boy, he has learned very quickly consequences that follow certain choices. He is not a fan of the time out game, so he adjusts behavior accordingly.

Perhaps you're saying "Um, duh, Deanna. If you're doing your job right that's what's supposed to happen. What's the big deal?"

The big deal is that I have worked so, so hard for the past three years with Addison to obey simple commands. And she won't.

"Addison, please stand here with me." "Addison please give me those shoes you're holding." "Addison STOP." "Addison come here." "Addison please take this to the trash."

Nothing has ever challenged me as much as trying to teach obedience to a child with an intellectual disability. It's hard at times not to wonder, "Does she understand?" I struggle knowing when to enforce consequences because it breaks my heart thinking of her crying in time out with no idea why she is there.

The problem is that Addison, also being a bright child, knows this. She knows to pretend like she doesn't understand even when she does. She takes advantage of this gray area of doubt to an extreme.

This makes my job very difficult. Which is why these past few years I have felt a bit like I have been buried by toddler disobedience. Running opposite directions into a busy road. Refusing to help pick up toys. Crying just to pout- not because there was a need. Wandering off and not replying with any noise when I called for her. Refusing to sit in a chair for any length of time upon request. It was like every single activity required me to keep them both completely under control- buckled into strollers, or the car, or both carried- with no choices given that could get them into trouble. This was exhausting and extremely constraining as to how much I felt I could take them out of the house.

This behavior is difficult to deal with in a three year old. My fear was that she would be fourteen and still behaving the same way. How do you teach and discipline with love when you're unsure how much is understood? How do you carry through and hear the tears and not fear that she doesn't know exactly why she is in that time out room? And then when she gets out and does the same thing immediately again, is it because she is being stubborn or simply because she didn't understand the request in the first place?

Enter: Carter

Carter has been picking up quite quickly on this obedience thing. I'm not saying he's perfect- because every day we still have to work on this very issue as he chooses to disobey from time to time. But it is quite clear that he understands, and I can see him make choices for right or wrong. When discipline is carried through- I see his attitude and pouting that remind me of myself as a disobedient child. He gets it. This has given me a lot more confidence in my mothering.

"Carter stop dancing on the dining room table." Guilty look. Pause. Glance to see if I meant it. Then a slow climb down. "Carter please bring me that bar of soap on the other end of the bath that I can't reach." A smile. A nod. A quickly moving little boy to fetch the soap that he knows will begin a sudsy head massage after he gives it to me. "Carter please go give this cracker to Addison." Meander around the house to find her. Hand her her cracker. Casually begin eating his own.

And Addison? She watches this all very carefully.

Addison's weakness is cheering. She dearly loves to be clapped for. When yelling in joy is involved, she pours her whole heart and soul into the act.

Therefore: every time Carter obeys? We all stop and cheer for him. Addison gets an interesting look on her face- trying to figure out why he's getting this royal treatment and what she can do to get it too.

My back has been bothering me quite a bit, so one thing that I need their help with is to climb out of the bathtub on their own (because lifting them out can be quite painful). So the request has been to climb out WHEN I say they can- not a minute sooner, and then coming over to the towel that I have ready for them and lying down on it instead of running naked through the house yelling and bladder releasing in random places on the floor.

Carter got it on the first try. It was cute watching him figure out "lying down" and which angle would work the best for him. I didn't ask the same of Addison because it seemed like a complicated request which she usually ignores anyway.

The next day, Carter by request laid down again on the towel so that I could dry him off and dress him. So obedient. Made me smile. Then, to my utter shock and surprise, Addison came over and immediately laid down on the towel. All by herself. Even though I didn't ask her to.

She watched Carter obey- get cheered for, and then she just did it on her own, giving me this look of pure joy that she could be counted among the obedient- and most importantly, get cheered for as well. After they were both dressed- we had a mega cheering session for obedience. That looked like this:
We still have a long way to go. But I am so thankful for the baby steps. I am so thankful for what Carter is teaching me about training for obedience so that I can apply it to teaching Addison. I am so thankful for how much they influence each other and Addison's desire to follow her brother's lead. I am thankful that because of Carter's influence, they will now both walk out to the car on their own and STOP upon request when they are running towards danger. I am thankful for the willingness they have to learn together.

Carter- sorry to use you, buddy. But I think you just might be the secret here for Miss Addison's obedience. It makes it much less appealing for her to pretend not to understand when she sees how much you benefit when you choose obedience...

Tuesday, April 16, 2013

A Heartbreaking Job

I've been thinking a lot lately about how much heartbreak motherhood can bring.

In my experience it can be an amazingly sweet, perfect, awesome, inspiring job as I go from day to day mothering little people who rely on me for their every need- both real and imagined. I love my little babies who can go from smelling like the sweetest things in the world to the most sour within seconds. I cherish the precious moments that I have with my babes- cuddling, kissing, laughing, talking, and yes lecturing too.

Motherhood, without a doubt, has brought me more blessings and happiness than I ever dreamed possible.

But because motherhood can bring such joy, such promise, such a ray of sunshine- there is great potential for incredible pain when something horrible and unplanned happens to the tiny bodies in our care.

I'm thinking today of and praying for my friend Kate- from Chasing Rainbows. I met Kate only a few months ago as we were contenders for the same category in the Parents magazine contest. When we met, we were both mothers of special needs children- blogging, advocating, and loving fiercely that perfect babies that we were sent. Today? Kate is facing the reality of loss. Kate is facing the reality of an empty bed at home with her superhero Gavin stayed the night at the morgue. Kate has to unexpectedly say goodbye to her five year old son who has brought her so much love and joy. The little boy who made her motherhood amazing- is now gone.

I'm thinking today of and praying for the many families affected by the bombs that went off at the Boston Marathon yesterday.  The mother who got a call from her two sons- learning that both of them each lost a leg. The mother who lost her eight year old son, whose daughter lost a leg, and who also had to have brain surgery herself. I'm thinking today of the families who lost loved ones and the families touched by countless injuries- life altering injuries. Many innocent people who were hurt by a cruelty I can't comprehend.

I'm thinking today of and praying for the mother whose 26 year old son died over a movie ticket because mall security saw "Down syndrome" and treated him with roughness that ended up suffocating him.

I'm thinking today of and praying for my sister, who just recently grieved the one year mark of her son's death. What should have been a first birthday celebration was instead a week of grieving. When a newborn body is overtaken by a silent virus, the only symptom being a heart attack- the job of motherhood becomes one of intense heartbreak.

I'm thinking today of and praying for so many friends who are facing unexpected twists in their parenting journeys. Injuries, sickness, surgeries, long recoveries, pain. Twists that make the future look scary, the end result unknown, the source of parental happiness ambiguous.

Life is hard, unfair, and seemingly full of mistakes at times.

I don't know about you, but sometimes events such as these threaten the "God is good" chorus with a "Is he really?" Would a good God allow this to happen? Would a good God let such evil destroy so many innocent lives? Would a good God care so little about these families that he would allow them to be torn apart with such grief?

This week I've been reading "One Thousand Gifts". Ann Voskamp's words have really helped me, so I'm sharing some of them here:

pg. 12
"Really, when you bury a child- or when you just simply get up every day and live life raw- you murmur the question soundlessly. No one hears. Can there be a good God? A God who graces with good gifts when a crib lies empty through long lights, and bugs burrow through coffins? Where is God, really? How can He be good when babies die, and marriages implode, and dreams blow away, dust in the wind? Where is grace bestowed when cancer gnaws and loneliness aches and nameless places in us soundlessly die, break off without reason, erode away. Where hides this joy of the Lord, this God who fills the earth with good things, and how do I fully live when life is full of hurt? How do I wake up to joy and grace and beauty and all that is the fullest life when I must stay numb to losses and crushed dreams and all that empties me out?"

pg. 85
"Do I believe in a God who rouses Himself just now and then to spill a bit of benevolence on hemorrhaging humanity? A God who breaks through the carapace of this orb only now and then, surprises us with a spared hand, a reprieve from sickness, a good job and a nice house in the burbs- and then finds Himself again too impotent to deal with all I see as suffering and evil? A God of sporadic, random, splattering goodness- that now and then splatters across a gratitude journal?"

pg. 225
"I remember her silken hair. I still don't know why He took her. I don't know why her children don't run free on spring days with mine, laugh with my sister's. Don't know why my parents' hearts were left to weep, eroding all away. Though I cry, this I know: God is always good and I am always loved and eucharisteo [thankfulness] has made me my truest self, "full of grace."

This book has been of such great comfort to me this week as I think of so many people going through such intense pain. There are no easy answers- no pat responses- no bandaids that can cover the grief.

There is no promise of tomorrow for any of us. No pre-planned life that we pay for in advance and get to choose all of the side roads.

But as I look to the gift of today, with my two children and the many blessings that I normally tend to overlook- I trust a big God who is in control. I don't understand why He allows certain things to happen. I don't understand how to best help when the unthinkable does occur. But I know to be thankful for the good that is here. Good that sometimes I forget to see. Good that keeps my life turning on its course- even when that course may not be the one I think is right.

Today I remember. Today I grieve. Today I cry. But also? Today I am thankful.

Thursday, April 11, 2013

Saying Goodbye

I held her small, limp body in my arms. My finger slowly trailed from her jaw up to her forehead. I counted her breaths. My lap felt the full impact of her small form, low muscle tone, and exhaustion.

I stared down at my beautiful daughter and thought, "This is not how today was supposed to go."

I idly wondered if the nurse was judging me for dressing my child in Christmas jammies in April. I felt my own exhaustion build into a tension headache. My wrist ached from the angle she was lying. My heart hurt from the events of the day.

Saying goodbye. Never easy.

Saying goodbye to an amazingly inspirational grandfather- a grandfather that we called Poppy, collected a ton of hilarious stories about, and learned more from him more than he probably realized? Difficult.

I wanted today to be all about that. Bearing the emotional weight of the goodbye, supporting my husband as he shed tears for his godly grandfather who so richly enriched his childhood and beyond, dusting off the ol' violin skills for a small contribution to the service, helping wherever I could, trying to find the right words whenever I could, remembering, laughing, crying- that is what today was for.

Addison took that to mean- "wake up super sick with a high fever and cough."

As my hand moved lightly to her hair, stroking-smoothing-patting, I thought about how motherhood never stops. As I readjusted her breathing treatment, observing her contented sighs in response to her ease in breathing, I thought about the demanding nature of motherhood. Not caring that today was stressful enough without sickness. Not caring that I just wanted to go home after a long day. Not caring that I have needs of my own. Not caring that this was inconvenient and just a little bit frustrating.

Motherhood demands.

The doctor came back to check on her, and nodded with relief that she seemed so much more comfortable than she was mere minutes ago.

I said a silent prayer of thankfulness for my friend who oh-so-graciously said "Sure! Bring Addison by during the funeral. It's totally fine that she's sick." I said a silent prayer of thankfulness for a little boy who was riding the high of attention and free food- not caring that his cohort in trouble was not by his side. (Except for at the end when he started asking "where aison?" in his cute little voice.) I said a silent prayer of thankfulness for the list of medicines prescribed that would help Addison keep getting better. I said a silent prayer of thankfulness for the warm bundle of goodness sacked out on my lap- Christmas jammies and all.

Some days are like that-saying goodbye to a loved one, stressing over sickness, obsessing over small details that really don't matter, wondering if my feet will find the strength to carry me and the little girl with her arms wrapped around my neck all the way back out to the car after a long appointment, and fretting that the day was painted in complete rebellion to the carefully done paint-by-numbers that I sketched up the night before.

There are days that the rewards seem very small.

And yet as I remembered the roomful of family members gathered together to honor the memory of the loving husband/father/grandfather- I realized that those days aren't the ones remembered. Stresses fade into distant memories. Exhaustion isn't recalled in explicit detail. Sick children forget the pain. At the end- at the very, very end all of the excess that didn't stand the test of time is brushed away revealing the much bigger reward- love.

Love that causes an entire family to weep at the graveside for that final goodbye. Love that allows the life to live on long past that painful goodbye. Love that unforgettably binds together people that have very little in common except for genetic material. Love that sets on fire a determination to live life as fully as the example given. Love that demonstrates exactly how it needs to be carried on to future generations.

I feel very blessed to be a part of a family who celebrated that sort of love today. As I ended the day at the doctor's office, holding my daughter in my arms- oh so heavy- oh so sick- oh so whiny- I stopped thinking about my petty woes. And instead started hoping that I would be able to demonstrate that same  unforgettable love to my little ones. One day at a time- knowing that the sum of life is far greater than its parts of days.

Wednesday, April 3, 2013

Oh So Normal...and A Blog Break

The thing that has surprised me the most about having a child with special needs is how extremely normal our lives are.

As a first time mother, I thought that my entire life from there on out would be wrapped around Down syndrome, therapies, and difference.

I pictured the small pleasures I used to get out of life- the petty problems that used to weigh me down- the drama of daily events- suddenly meaning nothing to me. Because all I could see was DOWN SYNDROME...mostly because of the Down syndrome glasses I was wearing.

This was a reason it scared me so badly to have Down syndrome enter our lives. I didn't want a singularly focused life on something so "horrible" (quote from past Deanna)
I wrote my first ebook Dreams Change as a way to document that initial journey. The shock; the fear; the denial; the finally found peace and acceptance. I was extremely honest- probably almost to a fault- letting those other moms who recently learned about their child's diagnosis that they are not alone. And it gets better. So much better.

Because of all of you- that ebook has been shared and read by just those women and families who really needed to read it the most. Because of you, Dreams Change is making a difference in how a diagnosis of Down syndrome is perceived.

Some of you may be wondering why I bothered to write a second ebook. Obviously I am very busy. Obviously I probably have better things to do than type away at a computer for hours on end.
But the truth is, just as those first time moms needed to learn that a diagnosis isn't the end of the world, there are other moms past that point who need to see a glimpse into the normalcy and wonderfulness of  life as the years continue. It needs to be said that motherhood is hard...but oftentimes that has absolutely nothing to do with special needs at all.

This ebook is part-lighthearted, covering the daily grind of motherhood, and part-serious- tackling issues like having a "perfect baby", being called a "special mom", and what really matters in mommy wars.

It's meant to be an encouragement to new mothers in general, a glimpse into the normalcy of special needs in our lives for those who need to see how much it hasn't taken over our lives, and an easy, entertaining ready for pretty much anyone. Basically, this ebook is my blog in a more cohesive book form (except with hundreds more hours put into it...and a lot more sweat and tears poured into each word)

Of your group of friends, you don't know which ones are discouraged and feeling alone in the toddler stage. You don't know who still thinks that a life with Down syndrome is a life sentence of horribleness. You don't know who needs to connect with another young mom in spirit. You don't know  who might find a smile or maybe a perspective change about such things as the mommy competition. And just in general- there are some pretty awesome stories in there. You never know who might benefit from a good read.
I set up the giveaway as a way to thank you for your general awesomeness here on the blog and for making my work as a writer mean something.  I wanted to thank you reading but also for sharing it with your friends because that's where making a difference starts. I hope you take advantage of the giveaway. Because I am very thankful for you all and for everything that you have already done.

I hope you enjoy reading Diapers, Onesies, Stretch Marks- Oh My! I certainly enjoyed writing it- and living it.

I'm going to be taking a short blog break to get some breathing space after the many, many extra hours I put in on this ebook these past few weeks. If you need some EANFE to read? You know where to find it.

Tuesday, April 2, 2013

Diapers, Onesies, Stretch Marks- Oh My!

I have a confession to make. 

I have been cheating on you.

For the past six months, some of my very best posts haven't been posted here on my blog. They went straight into the document of the mistress- "Diapers, Onesies, Stretch Marks- Oh My!" an ebook I have been compiling on new motherhood.
At first I started this project as a way to raise money to pay for professional editing on my novel, but as I wrote it, it became so much more.

I wrote about the magic of a sleeping child:

Whatever they were thinking while they slept so beautifully, something strange washed over me.

Tension disappeared, my memory clouded the details of their disobedience and the entire day seemed much less horrible. A smile tipped the corners of my mouth and love that never truly left swelled to maximum capacity.

I wrote about "saying no":
Those blue eyes stayed focused on me as though we were playing a game of “NO” chicken. I could see his stubborn spirit at work here, playing me like a fiddle in the hands of that Jewish guy on the roof.

I wrote about running errands with toddlers:
My fingers were going completely numb one by one as I unloaded the big cart full of groceries because I forgot my gloves in the car. I felt the cold I had been fighting descend upon me. Pneumonia tapped me on the shoulder and whispered my name. Frostbite tickled my nose. I could feel the cold pin me down and count to three. The children were still screaming with anger in their seats. Time to climb onto that heated seat, turn on some soothing music, and let the warm car start the recovery process as we headed home.

I wrote about the perfect baby:
No one said this would be easy. It never is, no matter what your motherhood role looks like. And yet buried deep into hardship can be peace and joy and the growth of contentment. Because embracing perceived imperfections can create a new level of maturity intertwined tightly with that ever so highly coveted happiness. For me, letting go of the carefully constructed ideals of perfection is when the crashing waves of seeming imperfection washed over me with a hypnotic beauty all their own.

I wrote about sick kids:
It’s really tough to see my little babies get sick. Physical discomfort and pain for myself seems like nothing at all when I’m preoccupied with the health of the little people who depend on me to dispense their antibiotics while making airplane motions and saying AHHHHH with the enthusiasm of a clown on a high. 

I wrote about having that next baby:
Baby fever hit me unexpectedly. Immediately after delivering my first, I declared, “I AM NEVER DOING THIS AGAIN.” And then out of the blue, I saw a newborn photo session posted online and something about those itty-bitty arms clasped together and the little bunny hat ending at the point the peacefully sleeping eyes began made my uterus stand up and take notice. When I leaned in closer and saw those pooched lips, deliciously red and plump perhaps in a mid-sigh when the photographer snapped this shot of magic, I immediately started producing eggs.

I wrote about Mommy Wars:
As I stared at my sister kneeling in the grass, I wasn’t thinking of my jealousness of her breastfeeding prowess. As she reached a shaking hand forward, I wasn’t comparing our mothering techniques in our usual competitive fashion. As her hand gently landed palm down on the tiny white coffin, all of the issues that had been weighing me down in guilt over my petty mothering woes were nonexistent.

I wrote about comparing:
I laugh where I can. I push myself to be better where I see points of potential not being met. I strive to be a more awesome version of myself by learning new things and working to perfect the skills that I do have.

But I don’t try to be someone else or let myself compare myself as a mother to other women that have strengths where I don’t. They’re doing their best. I’m doing my best. To our children, we are all superheros.

I wrote about the good moments:
These moments always catch me by surprise. Sometimes I get so caught up in the cycle of feed-change-load into car-haul them around-load back up in car-feed-change-bathe that I forget to look at my children- really truly look at them and see what their eyes are trying so desperately to tell me. And when I stop the hustle and bustle for just a minute, lower myself to the floor and look at them eye to eye, I see the person hidden behind the fa├žade of toddlerness.

I wrote about being a special mom:
Will there be moments when it’s hard? Yes, yes there will. But the truth is- I have moments like that with my son as well as my daughter. Having special needs doesn’t hold the claim on hard. It’s simply a part of life, which means it is subject to all the components of it- good and bad.

I wrote about not being a perfect mom:
I have a feeling that someday I’m going to truly miss this phase of life because honestly it does have some fabulous things about it. So I soak up the good, laugh at the hard, bear through the bad- knowing that this is my life. A wonderful, wonderful life where I get to build other people- one day at a time.

...and lots of other things too- like the mystery of my white couch, being a NICU mom, and what laundry and cleaning really mean to me...

I apologize that I have been pretty quiet around here lately as I worked diligently to tie up loose ends and get this ready for you. (Why is it SO FUN to write but such a nightmare to take it through that final editing stage?)

I am beyond thankful to the many, many friends who helped me read, edit, and read some more. I am beyond thankful for my fabulous friend who spend an entire morning wrangling two uncooperative models for a cover picture and another morning of editing. I am beyond thankful to all of you who helped me vote on which cover to use! I am beyond thankful to my husband who graciously helped me read and edit and put up with all my crazies the past few months as I finished this project. I could not have done this without all of your wonderful help.

I am beyond thankful to all of you who have been so supportive here on the blog for a long time now. And to thank you in advance for being supportive of this project that I have poured my heart and soul into, EANFE is doing a giveaway for everyone who reads and shares my new ebook Diapers, Onesies, Stretch Marks- Oh My! 

You get an entry if you
1. Buy the ebook
2. Share the ebook (Separate entries for Facebook, Twitter, and Pinterest)

You get four entries if you
1. Write a book review on your blog
2. Write a review for Amazon

What is the prize of the giveaway? There are three prizes for three randomly drawn winners: a $100 gift card to Amazon, a $50 gift card to Target, and a $25 Visa gift card. This giveaway will be open until the end of April. (To make sure that you are part of the giveaway, please log your entries in the Rafflecopter below.)

Please read. Please share. I will love you forever if you do. And so will these two:

a Rafflecopter giveaway