Tuesday, October 26, 2010

My Journey

Sometimes I shake my head when I think about the fact that I am sort of letting you all read my diary. :)


And then I think about how wonderful it was to have other CdLS bloggers sharing their thoughts and feelings back in those first few weeks of fear and unknown when Emma was born. I pray that somehow maybe my blog will fall into the right hands someday and encourage someone else.

I have several reasons (other than the obvious cathartic ones) why I blog; I hope to encourage others, I hope to receive encouragement, I hope to educate and spread awareness, I hope to introduce someone to our amazing God.

So with that hope, I'm attaching a link to this post to the side of my blog.

This post is full of links to posts from the past that mark significant steps in my own journey. Not Emma's journey, but mine. What has God taught me? What do I really want to share? What emotions did I have that I wish someone else had told me were normal at the time? :)

I blogged before we had Emma, so you'll read posts from my pregnancy and NICU, as well as Dx-day (diagnosis day) and my journey since then.

But fair warning: if you do actually make yourself some hot cocoa and sit awhile to read about our journey, please realize that these are uncensored posts. I haven't changed them since I wrote them, so they are there with all the naivete and ignorance and fear and raw emotion you are used to if you've been around here long enough. Which means I hadn't met Emma yet in some of them, and I hadn't fallen in love with other CdLS kids yet, and I hadn't embraced special needs parenting yet ... please extend grace where appropriate! My goal is to share our journey so that others may be encouraged

I'll probably add more links to this post as time goes by. I'm just hoping to have a place to link to the really amazing stuff the Lord has taught me through my life with Emma ... you know, so you don't have to wade through all the cute videos of Charlie that no one cares about but the grandmothers!! :)

So here goes:

These are from my pregnancy:
20 weeks
30 weeks
A revelation from an MRI
Prayers for healing
Trusting God - Be Still

Birth, NICU, and diagnosis:
Birth
NICU discharge - a rough day
diagnosis day
Dx honesty

Reflections on Emma's first birthday
part 1
part2
part3
Emma's first Birthday

Lessons God has taught me through Emma
Dear Stranger
Detours
Giggles and Bad Guys - the blessing of Charlie
It happened in Target
Non-political pro-life
Charlie: "I wish Emma didn't have CdLS"

From Emma's 2012 Nissen re-do and hospitalization
Do Not
Shouldn't Haftas
I {heart} Scripture

Fighting Dragons and Chasing Bunnies
How?
Understanding

Those are the ones that I think about when I think what God has taught me. If you've been around here awhile, do you have others that you think I should share? Let me know!

God bless you!

Wednesday, October 20, 2010

things i yell into my pillow at night

(disclaimer: everything is fine. nothing bad happened. charlie has an ear infection and i'm just trying to balance therapy schedules. but i'm having a bad mental health day and so ... i dunno ... for some reason i'm blogging about it)

if i say that we're going to focus on feeding therapy instead of speech therapy right now, does that mean i'm choosing between emma eating and emma talking?

i'm really sick and tired of having to explain what i'm sick and tired of

and listen, lady, i bet i know my child better than you do and i don't need your permission about what i can feed her when, so stop looking at me like i'm not doing everything i can for my daughter!

when i say that there's only 24 hours in a day, please believe me when i tell you that i'm not saying it to be lazy, i'm saying it because emma deserves some time to be just a child, too!

and did i mention i have another child?

and did i mention he's 3 and still needs me but that i'm realizing that he's leaving me in his wake as he speeds toward boyhood?

but you better believe i won't be able to sleep at night now, wondering if this decision will affect whether or not she'll ever be able to communicate with others. oh the things i took for granted with charlie ... he'll walk, he'll talk, no appointments necessary.

i'm not sleeping ... which is fine, because my son has an ear infection that i didn't notice until now and so he's waking up at night screaming in pain while we wait for the antibiotics to take affect

where is the line between powerful mother's instinct and irrational mother's worry? i know my husband does his best, but am i keeping him informed enough after every appointment so that his opinion about every decision can be worth as much as my opinion? he is supposed to be that voice of reason

and emma is night-waking again ... am i in denial that she's doing that behaviorally? or is something really wrong?

should i be waking up and going down to play with her while she's awake? she doesn't need me, she doesn't cry ... but should i teaching her a new sign? singing her a song to help her learn more speech sounds? stimulating her brain in some way? when i stop to think about the hours my developmentally delayed daughter has spent awake alone in a dark room i'm ready to call a social worker and turn myself in for child neglect.

i shouldn't be worrying ... stop worrying!

i'll put that on my to-do list ... for tomorrow

Saturday, October 16, 2010

My husband rocks!

Have I mentioned before how much I love Josh?

Although that last post was not written by him, it was unexpectedly posted by my darling husband. Because he loves me :)

He thinks I'm pretty cool.

Men, take note!

Public declaration that you think your wife is pretty neat -

it does amazing things in a woman's heart

:)

Wednesday, October 13, 2010

To my wife

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make not...es in a giant ledger.
"This one gets a daughter. The Patron saint will be Cecelia"
"This one gets twins. The Patron saint will be Matthew"
"This one gets a son. The Patron saint.....give her Gerard. He's used to profanity"

Finally He passes a name to an angel and smiles. "Give her a disabled child".

The angel is curious. "Why this one God? She's so happy"

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you"

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"

The angel gasps - "Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"

"And what about her Patron saint?" asks the angel, his pen poised in mid air.

God smiles "A mirror will suffice"

The Special Mother
by Erma Bombeck

Thursday, October 7, 2010

Sweet Snuggles

Poor little girl has an ear infection and is just generally a little under-the-weather.

Nothing too concerning - just that beautiful place that mamas secretly love somewhere between really really sick and feeling too energetic to stop playing for some Mama Loves.

That wonderful Land of Lots of Snuggles
She still loves the praise she gets when she waves, so in this picture she's waving on my shoulder :)




signing Mama


Not too sick for a little giggle :)
Love that girl

Wednesday, October 6, 2010

What Emma CAN do

There's this little ticker on the side of my blog that's been taunting me for a couple weeks.

That little fairy that represents Emma is getting dangerously close to that big number 2.

Two - it feels ... difficult for some reason.

Like it's full of "supposed to's"

She's "supposed to" be walking and talking by now, but she is doing neither.

In fact, I've been practicing saying it out loud. You know, to strangers in the store who ask how old she is ... I've been practicing answering that she's 2 because then I can console myself with the fact that I'm lying if their response is outrageous.

But there's some embracing in that answer, also. No more pretending that she's "just a little behind." People don't ask anymore if she was premature and then try to make me feel better that "she'll catch up." That part feels good.

So here's my praise for today.

I want to make a list and praise God for everything Emma CAN do.

  • Her lungs can breathe without help and her heart beats without so much as a murmur (not to be taken for granted given her congenital hiatal hernia.)
  • She smiles at us and knows and loves her family
  • She rolls over (since 4 months)
  • She sits (8 months)
  • Her little legs have supported her weight if she's standing next to something since 10 months
  • She got "army-crawl" mobile at 10 months and pulled to stand at that time, also
  • Her palate repair is behind us
  • She cruises (12 months)
  • Her traditional crawl (14 months) is pretty much the cutest thing EVER, especially when she comes around the corner looking for me
  • She's just recently exploded with communicating and curiosity. She has about 7 or 8 signs (help, mama, all done, pick me up, hungry, more ...) but they come and go depending on what's really motivating her. PLUS! She can wave back when you wave to her and she claps along with you when you clap. This makes my day :)

Thank you, Jesus, for my precious Emma! We are so grateful for everything she does and everything she is and every good and perfect gift You have given us through her life on this earth.

Friday, October 1, 2010

Pro-life: A non-political post

I went to coffee with a new friend this week. Her older daughter is in Charlie's preschool class; her sweet little 10-month old baby girl has Down Syndrome.

(as a side note, it's amazing the connection I find with other moms of kids with special needs.)

As we were finishing up our time together, both Emma and her new little friend smiling sweetly on our laps, the college-aged girl who had made our drinks came over and said,

"I'm sorry, I know this is going to come out wrong, but I just had to come over and say something. I know that so many of these kids get aborted and I just wanted to tell you that you have beautiful babies and you guys are awesome."

She had tears in her eyes, and went on to explain that her sister works for a crisis pregnancy center downtown and that she's pretty passionate about the issue of abortion.

Despite the fact that it was stated a bit awkwardly, I was moved by her sentiment.

It made me think about an article I read recently about reasons abortion statistics are so high for babies with special needs.

Before some of you stop reading, I want to be VERY clear: I DON'T CARE HOW YOU VOTE ON THIS ISSUE. THIS POST HAS NOTHING TO DO WITH POLITICS.

BUT

If you consider yourself to be anti-abortion, consider this ...

In a conversation about terminating a pregnancy when something has "gone wrong," before long someone is going to say the phrase "quality of life."

Have you considered the fact that YOU may have the opportunity to impact a disabled individual's quality of life?

Not by your political vote,

but by your love for them after they are born.

Let me see if I can explain myself with an imagined scenario ...

Imagine a pregnant woman in turmoil because she has just learned something is different about her unborn child. Is there a decision to be made?

She goes to a coffee shop and sits down to clear her head.

At a table across the restaurant, she sees a mom playing with a child with special needs. The pregnant woman watches the mom bounce the not-yet-walking 2 year old on her knee. The mom is struggling a bit to finish her coffee as her child is so squirmy, but she seems to be handling things ok and the pregnant woman thinks, "maybe I could do that."

But then she sees the reactions of the people around the special child. The stares, the "tsk"s of pity, the eyebrows raised as they decide to get their coffee to-go ...

And she considers the "quality of life" of the child she is considering bringing into the world.

If you could read her thoughts and walk into the restaurant as another customer, what do you think you could do that would convince her to not terminate her pregnancy?

Hand her a pamphlet about how her unborn child already has fingernails and can smile in her belly?

Show her a protest sign saying all children have a right to life?

or maybe

Could you walk up to the 2-year-old's mother and tell her she has a beautiful child?

Am I explaining my thoughts well? I don't mean to be preaching about being pro-life ... my point is that if you consider yourself to be opposed to abortion, what could you do to show love for all life?

Could you hold the 2-year-old who drools a lot in the church nursery, making it clear they are welcome?

Could you support their family when their child needs surgery, bringing them a meal?

Could you get to know them well enough that when she comes to your church on Sunday morning, you run over to greet their child and swing them around until they giggle?

Because I promise you, the One who said, "suffer the little children to come unto me" would smile quite a bit at that kind of 'vote' for life.

(and those of you from a certain wonderful church we love ... you may recognize yourself in those last few lines of this post ... you all are amazing ... we are forever thankful)