Sunday, October 31, 2010

A Scary Story just for Halloween!!

Dearest Lily,

Yesterday I wrote about your birth story part 3...and today I'm going to conclude it. Sort of.

I left off with our decision to leave your sister Mackenzie with you in the NICU through the night. The nurses had told us that I wouldn't be able to hold you if I was falling asleep, and Daddy convinced me that I really needed to get a good night's sleep because we had a long day- maybe few days ahead of us. At this point the doctors were still just giving you liquids through your IV, and the nurses were attempting to feed you my milk in a bottle- though you weren't doing a very good job of taking it.

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We kissed you goodbye and told Mackenzie to call us if she needed us for any reason...the Ronald McDonald house where we were staying was right next to the hospital.

At this point my legs were really not functioning at all. It was so embarrassing, but it was like walking on sticks of jello. They literally would not hold me up. Daddy went to find me a wheelchair, and I started crying in the hallway...one of the nurses asked what was wrong and I told her I was scared- why weren't my legs working? Normally I don't have medication during my labors, but I had had an epidural with your delivery...I was worried that something had happened during that epidural that was now effecting my legs.

The nurse was very sympathetic and kindly explained that a)I was exhausted b)I had just given birth the day before c) I had been sitting all day and not drinking enough water, so my legs were retaining water and swelling and d) my pain medicine had started to kick in, which can make it difficult to walk normally.

By this time Daddy was back- thankfully, because I could not even keep my eyes open. He helped me into the wheelchair and piled our bags on top of me...and away we went.

Lily, it's going to sound dramatic as I tell you what that little journey felt like. And writing this really makes me laugh...because it was only half an hour!! But at the time it felt like eternity. Daddy was still navigating the hospital- which was really a campus- and got a little lost trying to find the exit. I had my eyes closed the whole time, and I kept dosing off and waking up only to find us in a different hallway. Poor Daddy was exhausted as well- he had been up since 6 the previous morning!

When we finally reached the entrance of the hospital, Daddy realized we had to leave the wheelchair behind. The Ronald McDonald House is a ten minute walk around the corner of the hospital...and by this time it was 11 at night, in January in Oregon..raining...cold...and my legs wouldn't work.

So your genius Daddy went looking for a cab driver. What he found was a middle eastern security guard who was making his rounds in a...cab. Not for the purpose of transporting semi-comatose, post-baby mommies from one building to another...but Daddy can be very persuasive when he is desperate.

Daddy wheeled me out to the cab and helped me out of the wheelchair- I could not stand, so he picked me up and put me into the cab, and went back to the entry way of the hospital for our luggage. By this time I was shaking all over from the cold and what I know now was panic...and in my delirious state...don't laugh, Lily, and I know this was terribly politically incorrect of me but...I thought the cab driver was a terrorist who was going to kidnap me.

Have you realized your mommy can be subject to paranoia at times? I assure you it is only under extreme duress. This usually doesn't happen to me on an average day.

But at that moment- in the middle of the cold rainy night, in my drug-induced delirium...Osama Bin Laden was my cab driver. And I was stuck in the cab with him, cuz my legs wouldn't move. And it took FOREVER for Daddy to get our luggage back to the car. At least it seemed like it!

Osama was stoic and silent as he drove us around the corner to our little home away from home. He screeched to an abrupt stop- waited half a second while Daddy got the luggage out and helped me out- and peeled off into the night. Maybe he was worried we would ask for a ride back to Corvallis as well? I dunno, but I was glad he was gone.

Until we realized.... there was a loooong sidewalk leading to the door of the Ronald McDonald house- the name of which at this point sounded to me like some sick asylum- and Mommy couldn't walk. And our luggage was sitting next to us in the pouring rain.

And right now I have to say that your Daddy is MY HERO, because that man was more exhausted than I was, I'm sure. But he heroically stacked our luggage and my purse and bags filled with breast pump supplies on top of each other, grabbed the stack with one hand, put his other arm under my arm and around my shoulder and DRAGGED us all the way down the walkway and up the stairs into that house. We were a sorry sight I'm sure- my legs wouldn't even attempt to move forward, try as I might, and Daddy and I actually started laughing...sort of maniacally laughing...saying things like "some day we're really gonna look back at this and laugh."

And I'm so glad I am now able to look back and really laugh at that moment.

And now we have to go to church, so I will have to have a part 3 to my part 3...and I know this was a rather funny little letter. But isn't it nice to know that little part of our night served a purpose in the big scheme of things? Cuz my story really needed a little comic relief in the middle, and our terrorist-cab-driver-jello-legged-mama incident certainly fit the bill.

I'm just sorry we didn't take pictures!!

Love always,
Mama oxox

Saturday, October 30, 2010

Birth Story part 3

Dearest Lily,

Yesterday when I was attempting your first ponytail- you have a natural mowhawk at this point:) - I snapped a quick photo of you on my camera to send to Grammi and Aunt Hopie and Aunt Lori, Aunt Heather, Aunt Katy, Aunt Cindy...and a host of other friends and family members who are on the receiving end of a daily Lily photo.

And the picture I took of you was so adorable- you were grinning right at me as I took it, sitting up proudly and clasping your hands together and sporting your teeny pigtail atop your head...

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And when I went to hit "send" it struck me- she looks like she has Down syndrome.

Seems like an obvious thought, doesn't it?

But what also struck me was- I didn't care.

This is going to sound very shallow of me to say, Lily. And probably when you're older I'll tuck some of these letters away.....because I don't want you to know that when you were very little I feared the look of Down syndrome.

When you were first born and staying in the NICU, Mama and Daddy were staying at the Ronald McDonald house right next to the hospital. And that first night we stayed there, I spent 4 hours on the phone with one of my dearest friends in life, your Auntie Denise. I was having a full blown panic attack. And Lily, I hope you never have one. They are hideous.

I couldn't breathe, my legs were numb, I was shaking all over from head to toe, the room was spinning, I was trying to get enough air in my lungs but I couldn't- I felt like I was losing my mind. I felt like I was about to die- no, I knew I was about to die- and nobody would know. Daddy was sound asleep, exhausted after being up for over 48 hours taking care of you while Mommy was recovering at our hospital. Grammi and Aunt Hopie had flown back home to Arizona that morning, my doctors had discharged me early from our hospital at home so that I could go to Portland to be with you...I know now that I was not abandoned, but in those moments, in the middle of the night, I felt completely and utterly abandoned.

And in the state of exhaustion and panic that I was in, due to lack of sleep and hormones and shock and giving birth and also- your diagnosis- I felt that even God had abandoned me.

I was a wreck, dear Lily, and looking back that was one of the scariest nights of my life.

In a sense this letter could be called "birth story part 3"...because that night is so intermingled in my mind with the memory of your birth.

I'm going to back up for a moment, to set the stage for that night...

I wrote about your siblings' reactions to your diagnosis here .

After those painful moments, the EMT's arrived from Portland, to take you by ambulance to OHSU.

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I don't know that I have ever felt so helpess, or cried so hard. Those EMTs were so very compassionate, so tender hearted and gentle. They explained to Mama that they were going to take very good care of you, and that they were going to make sure nothing happened to you on the way.

Daddy was riding with you, and he told me he would call me as soon as they reached the hospital. I held you in my arms, tears falling on your sweet little face, and I sobbed and sobbed, saying meaningless things like, "I can't handle this" and "This is too much".

Daddy stroked my hair and talked me through my tears, telling me he needed me to be strong, and that as soon as I woke up in the morning, Naomi would be there to pick me up and drive me to Portland.
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They placed you in a huge portable isolette, and Daddy hugged me one more time...

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And I was alone.

Mackenzie drove back to our house to get a suitcase packed for us for the week...we had no idea how long we would be up at Portland. A nurse got me situated in my recovery room, helped me into bed, gave me sleeping medication, showed me how to order food...I made some phone calls- I hadn't been able to talk to anyone all day, being in the little NICU our hospital. I had a list of people I wanted to call, but my sleeping aid was kicking in quickly.

The last thing I remember was talking to your Auntie Kris on the phone, telling her how beautiful you were, and how exhausted I was...

...and I fell asleep.

Kris told me later that she was in the middle of talking, and suddenly she heard snoring on the other end of the phone.

And at this point I want to thank God for His help and grace and also....thank God for modern medicine. Because I slept so hard that night, which is absolutely a miracle in itself. I always spend the first night after having a baby wide awake- I am staring at my babies, cuddling with them, nursing, happily high on adrenaline, and it is my favorite time in life.


Poor Mackenzie came back to the hospital and found me sound asleep. She says she lay in her hospital bed and cried and cried, and at some point in the night I woke up to her crying, and said "Come here, honey, tell me all your problems." Apparently she did just that, but I have absolutely no recollection of that. Mackenzie realized half way through that I was snoring, so she went back to her cot and cried herself to sleep:(

The next morning Naomi arrived first thing, as promised. I have never been so happy to leave my hospital behind- normally I'm enjoying all the special care from the nurses, soaking up my last minutes alone with my baby before we head back to reality, but not that morning. I couldn't get out of there fast enough!

When we arrived at the hospital and I saw you again for the first time since you had been whisked away in an ambulance- I almost didn't recognize you.

You had oxygen tubes, an iv, monitors attached...you looked a little swollen, and most of all...you didn't look like my baby.

I spent the entire day holding you, trying to nurse you (unsuccessfully), kissing you, staring at you- trying to bond with my wire-covered baby. It was a foreign experience to me. I was used to spending the first 24 hours snuggled up in a hospital bed with my babies, nursing contentedly, and welcoming streams of happy visitors. Instead I was sitting in a little corner of the sterile cold NICU, partitioned off from other sick babies so that I could try skin-to-skin nursing with you.

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The constant beeping of your "leads"- the lines of wires that connected you to a giant monitor- created a surreal feeling like something out of a science fiction novel. Nobody talks in a NICU. They whisper or motion, or if they do talk, it is in hushed somber tones. There is no laughter, no warmth, and although we had some very kind nurses, I wouldn't help but feel that all around me life was hanging in the balance.

So all day I sat in a rocking chair, holding you and loving you, and trying to feel normal again..trying to find that feeling I love so much after giving birth. That proud, "I made this baby, she came from me, just a few hours ago she was still in my tummy, and look at her now, she's alive and healthy and real, and we made it through!!" kind of feeling. But it wasn't there.


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Don't get me wrong, Lily- I was so in love with you. But right along side of that love was a feeling I had never had after giving birth- fear.

And over the course of the day that fear kept building and building.

You weren't nursing like all 9 of my other babies had, you fought it, turned away. Your eyes weren't open, you were sleeping heavily and you didn't hold yourself in a tight curled up little ball like my other babies had...you were a limp little puddle, my first experience with "low muscle tone" that is common to ds.

The doctors weren't there to ask questions of- they only made their rounds in the mornings. The nurses were busy with paperwork and other babies, and seemed to know what they were doing so well, that they forgot ordinary mommies like me were drowning in a sea of worry and the unknown.

And as I sat, my after-birth pains got stronger and stronger- I hadn't been able to nurse for 24 hours, and as a result my uterus wasn't contracting like it should. Normally I would have already been done with this part of the post-labor pain, but my fresh attempts at nursing had only now begun to trigger a response in my uterus.

Daddy and I realized we had never gotten my pain medicine- all we had been consumed with was you. This revelation hit at almost 5 o'clock, when any pharmacies would close.. and the nurses in the NICU said they weren't even allowed to give me tylenol, as I was not a patient.

So Daddy left to try to find a pharmacy, and Mackenzie went to the cafeteria to find something to eat. And while I sat and held you I suddenly felt blood pouring out of me, through my clothes...I looked down and saw a pool of blood on the floor, called frantically for a nurse...

But your kind nurse, Bethany, had ended her shift for the day, and her replacement seemed nonplussed by my crying and request for help. (I guess they see so much real trauma, that a little pool of blood on the floor isn't cause for tears.)

I handed you to the nurse and said I needed to try to find a pad somewhere...in the chaos that resulted after your birth I hadn't packed any pads. The nurse unsympathetically wished me luck, and I headed to a bathroom in search of ...something.

My jeans were soaked, I was in so much pain, and suddenly- my legs would not function. Sitting all day in a chair had caused my legs and ankles to swell, and I'm sure standing so quickly and rushing down a hallway didn't help either.

There was nothing in the bathroom that would help, so I went back to your corner of the NICU...where another nurse informed me visiting hours were over for an hour, while the staff held a meeting., and that I needed to leave.

Visiting hours over? But couldn't mommies stay?

The nurse firmly insisted that I leave, and come back in an hour.

In my haste to exit I left my jacket behind...and I found that the rest of the hospital was not as warm as the NICU had been. Add shivering to my bloody, pain-filled, wobbly-legged body, and you get the preliminary to an anxiety attack.

I found Mackenzie coming back from the cafeteria, and asked her if she could go back to the NICU to ask for my jacket. She returned a few minutes later, so upset because the nurse at the door told her they would not allow anyone in the NICU, and "her mother could wait an hour."

Daddy finally made it back to hospital- saw me curled up in a tear-filled heap on a chair in the waiting room, with Mackenzie trying unsuccessfully to console me- and promptly called Uncle Chris.

"Your sister could use some cheering up," Daddy said.

Do you remember Uncle Chris, Lily? Way back when the doctors were first suspicious of ds, Uncle Chris kept me laughing with his predictions of a normal Rice baby- "as normal as that could be," I believe were his words.

Uncle Chris is not the living epitome of compassion. He doesn't offer profound words of condolence, or ooze with sympathy.

But Daddy knew Uncle would deliver just what I needed- a good laugh.

He handed the phone to me and said, "your brother wants to talk to you."

"Hello," I sobbed.

"What's wrong?" Uncle Chris said, and something in his tone just lifted a hundred pounds of grief off my shoulders. I poured out my whole pity-party, and in true Uncle style, he had me laughing in about two minutes flat. I could be on my death bed, and Uncle would be cracking jokes all the way into eternity.

So after a 45 minute pep talk, Daddy and Mackenzie and I headed back to the NICU. We held you for a few more hours, my pain medicine started to kick in, my bleeding slowed, and soon it was time for us to go back to the Ronald McDonald House. Mackenzie said she would stay through the night with you in the NICU. No visitors are allowed to sleep while holding babies, and Daddy knew I would not be able to keep my eyes open through the night.

And this letter had gotten so long, sweet Lily, that I have decided to write it in two parts...

Because I don't want to shorten my narrative of what happened through that night, just for the sake of time.

You see, that night was such a turning point for me, Lily. In a sense it was the night I accepted who you were, and made a decision that I was going to put my trust in God for our journey together.

And I'm not going to pretend that I got all my grieving done in that one night. But there was a definite transformation in those pre-dawn hours, and looking back I know that although I felt completely and hopelessly abandoned, I was in fact being held in the loving arms of my Savior.

Part two tomorrow...

And loving you as always,

Mama oxox

Friday, October 29, 2010

An Invitation to Our Home

Dear Readers,

Today on this 29th day of "31 for 21" I'd like to do something different.

I'd like to invite you over to our family blog, in case you've never been there.

I especially wanted to invite you if you are a new mama of a baby with Down syndrome, or are expecting a baby with ds.

Because I'd like you to see that although I blog exclusively about ds here...our lives do not revolve around ds. This just happens to be my place to come to talk about it, in my letters to Lily.

I'm new at the whole ds thing, so I'm by no means an expert. But the thing I have learned the most in these 9 months of loving Lily is that Down syndrome does not define us, and it does not define Lily.

We live a very normal, joy-filled life, and sometimes ds plays a part in that, and sometimes it plays no part at all. I suspect Lily's life will be the same. Down syndrome isn't a death sentence, and even though I sometimes say that Lily's diagnosis changed our lives forever, it is only meant in terms of who we are...we are better for it.

I started this blog when I was pregnant with Lily to have a place to pour out my own feelings ...and also to let our families know what was going on, through those roller coaster-like days of my pregnancy.

Some day I may merge the two blogs...maybe when Lily is old enough to read, and she wonders why she gets a blog all to herself, and none of her other siblings do:)

For now, this is her place, and mine. If I seem to emphasize or talk about the fact that she has Down syndrome here a lot, well, that's why I began my letters to her in the first place. To sort it all out...

But life goes on, and meanwhile we have a lot of fun and craziness and just plain normal stuff too in our home...and we'd love to invite you over...

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....to Notes From Home...

love,
Patti

Wednesday, October 27, 2010

Before I lose my nerve..

Dearest Lily,

I realize I've already posted for today...I'm posting this before I lose the nerve and delete it.

I've spent the month of October blogging every day for "31 for 21" to raise awareness for Down syndrome. I have so enjoyed reading other mommys' blogs during this month. And it seems to me that at the beginning of the month some of us were a little hesitant to write about our true feelings...but as the days moved on, we began loosening up and feeling more comfortable in our "advocate" rolls...and being truer in our blogging.
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This doesn't mean we weren't honest before. But I think we all weigh what we say on our blogs because they are public, and we don't want to ...

a) offend any friends or family who read our honesty and then realize maybe things have been said to us that were unintentionally hurtful.

b)scare off other mamas who might be facing a ds diagnosis and are coming here to "see what it's like". God forbid I would ever be the reason for someone choosing to terminate a pregnancy because they see my grief and think, "I can't handle that."

c) appear bitter. Because some of the things I feel.. look a whole lot like bitterness to those who have never walked this way. And maybe...partly....they might be. But that doesn't mean I don't recognize my feelings and desire to change. It just means I'm still in the process of wading through this Down syndrome thing- the emotions, the realizations, etc. and I'm not going to do it all perfectly. I'm human. And sometimes I really struggle to allow others to see me as such.

e) and finally...maybe some mamas are like me in that- we struggle to be real in our grief.

Grief is a process, and for a lot of us that process isn't really totally over yet. Acknowledging we're grieving can be misconstrued as self-pity. OR it can solicit pity from well meaning readers...which is the last thing we want. And we certainly don't want people telling us to count our blessings or just love our babies- because the truth of the matter is our children and our love for them are the whole reason we are grieving. If I didn't love you so much, Lily, I wouldn't grieve the fact that you are going to struggle in life. And face rejection at times. And have a disadvantage in life. That has ABSOLUTELY NOTHING to do with the fact that I am completely 100% head-over-heels in love with you, and consider you to be my greatest blessing in life!

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SOOOOOO, what I am about to say may appear to some readers to be self-pity. or bitterness. or discontentment. I assure you, Lily- it is not. It is the struggling-through-but-I-will-overcome-these-feelings kind of writing that is therapeutic for me, and I'm putting it out there in the hopes that it helps other Mamas of babies and children with ds to feel...normal.



(and thank you, Deanna and Jenny, for being so real on your blogs and inspiring this post.)



I have learned since having you, that I really struggle with being sensitive. Really struggle.

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A relative comes to visit and doesn't ask to hold you, or ask about you, or pay attention to you. I wonder...is it because you have Down syndrome?



A relative comes to town and does pay attention to you and asks "How is she doing?" and I think...is it because you have Down syndrome? Would they normally ask that question...that way?



Someone comments on how tiny you are and I say yes, it is related to Down syndrome. They say "Ooooh" in a sad way...and I think...should I have told them she had Down syndrome? Or just said yes, she's tiny.



I see other babies your age doing so much more...even today, Mackenzie is babysitting a baby younger than you in our home...and I have to fight an urge to ignore that baby. I don't like comparing, but my brain is going there again and again and I hate that I feel this ...anger...towards other babies. I hate it.

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I take you shopping or to the doctor or to a pumpkin patch...people stare at you and smile, and I wonder...are they noticing you have Down syndrome? Are they smiling because you're so sweet, or is it out of pity?



Again, someone - a stranger- asks me if you were premature, because of your size. I hesitate, say "a little premature", finally offer the answer: Down syndrome. "Oh, I could tell," they say proudly. And I want to end the conversation there.



An older woman at the hospital comments on how beautiful you are, how alert, etc. She keeps asking about your size, until finally I smile and say confidently, "Yes, she has Down syndrome." The woman says "Oh." And goes back to reading her magazine. The same scene repeats itself several times..in the waiting room at the Audiologist, at a restaurant, the doctor's office. Always with the older generation- the ones who were used to seeing babies like you put away in institutions or separate classrooms. I find myself leery of telling any more people from that generation about your diagnosis.



I hear about a potential ds diagnosis on an ultrasound for someone else...hear how relieved everybody was that the baby was "totally perfect." And later I bemoan the fact that I wasn't strong enough to tell the story-teller, "We think Lily is perfect too." I'm mad at that person, even more angry at myself. I tell my husband- why didn't you say something? He says he didn't even feel hurt by the words...and I fight resentment at his lack of my shared sensitivity.



I told you my feelings might appear less-than-saintly, Lily.



And so what do I do? Bitterness and envy and hatred and resentment and unforgiveness are loads too hard to bear. I can't hold onto them and walk this road we're on together. There are too many other things to carry.



Daddy tells me to look at it this way: I have emotional cash. And there is only so much in my account. I can't spend it all- I'll come up hurt and empty every time. I need to be careful what I give my mind to- what I let penetrate my heart. When those feelings of hurt and anger and ugliness creep in- when I want to isolate and shelter you and hole up in our safe little home, never to face the unintentional or intentional...jabs from strangers- or even loved ones- again...I need to stop.

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I need to move on, realize that maybe I didn't see things right, maybe they didn't mean things that way, maybe....



Maybe I just need to quit being so oversensitive.



Life's too short.



You need a Mama who has "the heart of a child and the hide of a rhinoceros." I want to be sensitive to others, but not overly sensitive myself. I want to quit being thin-skinned.



And truthfully, Lily- I can't do this on my own. It's such a part of who I am, and old habits are hard to break. I need God's help. Desperately.

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So I am praying. And checking my heart. Daily.



And maybe it's all part of God's big royal plan in giving me you. Because you know what? These are good life lessons for me in every area. People would say things that hurt my feelings even if I didn't have a baby with Down syndrome. And I need to grow and change and toughen up a little. And realize that people are flawed and human ... just like me.



So you see why writing is therapeutic, Lily? I just blogged my way right through that little...okay huge...bump in the road.

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We're gonna be fine, baby girl.

Just fine.

Love always,

Mama oxox

Monday, October 25, 2010

Quality of Life

Dearest Lily,

A year ago this month I was up late many nights, contemplating your future. The month of October was spent waiting for a second level II ultrasound to see if there was a change in your heart. The doctors had told us they were 90% certain that you had an AV canal defect.

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In hindsight, that heart condition- or the prospect of it- was a blessing in disguise. It kept me focused on what was really important...

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...your life.

I hear and read so much talk about "the quality of life." Babies are aborted every year- millions of babies- because their parents don't believe their quality of life merits keeping them.


What is quality of life? Is it based on how intelligent we are? How able to relate to other people we are, whether we can read, write, drive a car? Who determines...the quality of life...
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All those nights I spent awake, a year ago.. when I sat under our big picture window, while your brothers and sisters and daddy lay sleeping in other rooms...what I was thinking about, crying about, praying about, was not- quality of life.

I was just thinking about....life.
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I wanted so much to know you were going to be okay.

The Down syndrome- if in fact it was going to be an issue- we could handle.

It was your heart I prayed so hard about. I was so fearful we were going to lose you, Lily.

I prayed and prayed and asked God to take care of my baby girl. I told myself we would cross the special needs bridge- if and when we came to it.
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And we are.

I lost count of how many nights I spent staring out at the stars in the sky, those stars that are without number. I stared at the moon, told myself- if God created all the heavens and the moon and the stars and this world- He could take care of us.

This universe didn't just happen. It was carefully designed, and looking out at the vastness of the night, the brilliance and beauty of those stars just reassured me- God was in control.


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When my world seemed to be spinning out of control, when my heart felt like it couldn't hold any more scary news, God was there. He was carrying me through.

And somewhere along the way....your heart was fixed.
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Was it a miracle?

Or were the doctors wrong?

There are other babies- many babies- who we've come to know along the way. Babies who faced heart surgeries, sometimes more than one. Would God choose to heal my baby's heart and not theirs? I don't think so. I don't think God plays favorites. But... it's also hard for me to deny that a miracle took place.
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Because ultrasound after ultrasound showed no AV canal...no defect...no surgery needed...And when you were born and had your first echocardiagram outside my tummy- the doctors could find no defect.
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So was it a miracle? Or just chance?

We won't know until Heaven, dearest Lily.

But I know that the waiting made me so very aware that your life was in God's hands, not mine.

And some might say that your quality of life is less than others.

But your daddy and I would disagree. Your brothers and sisters, your grandparents, your cousins and aunts and uncles, and even strangers who have come to see your sweet face here...
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..have all seen a life that is beautiful and ordained and lovely and full of grace..and full of quality.

And it's late tonight, Lily. The rain is beating on my window as I type, and you are fast asleep in our bed beside me. And the moon is shining brightly behind those dark, rain filled clouds, and when I contemplate your future, I know...
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...it is good.

Loving you always,

Mama oxox

Venting...

Dear Lily,









...you really know how to vent!!

Love always,

Mama oxox

Sunday, October 24, 2010

Sweetest Cutest Baby Ever

Dearest Lily,

You have been doing the cutest thing lately- you shake your head no at us !! It is hilarious and you make all your brothers and sisters laugh when you do it. And then when I go grab the camera you won't do it!! You are a stinker!

So today after church you were doing it in your carseat again- and Mama had her phone camera and caught it. I wish the video quality were better, but here it is...



You are the sweetest cutest baby ever!

Love always,
Mama oxox

Saturday, October 23, 2010

No Fear

Dearest Lily,

Darlin' do not fear what you don't really know

cuz it won't last
worries'll pass
all your troubles they don't stand a chance
and sometimes it takes more than a lifetime to know
Darlin' do not fear what you don't really know


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If you have a broken heart or a battered soul
find something to hold onto until they go
to help you through the hard nights
like a flask filled with hope
Darlin' do not fear what you don't really know

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cuz it won't last
your worries'll pass
all your troubles they don't stand a chance
and it always hurts the worst when it's the ones we love the most
Darlin' do not fear what you don't really know

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sometimes your path is marked in the sky
sometimes it fails to fit in between the lines
sometimes all you can do is say no
Darlin' do not fear what you don't really know

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Love always,

Mama oxox

Friday, October 22, 2010

Day 22/ Starving

Dearest Lily,

You are apparently being neglected by your family, and have taken to swiping your own food at meal times. Desperate times call for desperate measures...





You poor starving baby!

You have also gotten very good at waving hi...(Mama should have used the video camera and not her phone camera!)


Your brother Jackson is stuck on the same story he told last week...but you don't seem to mind...





...although it looks like you might have been slightly more interested in the apple than the story!


Love always,

Mama oxox

Wednesday, October 20, 2010

Day 21/Trusting The Travel Agent

Dearest Lily,

Yesterday you went for your nine month check-up. You are a whopping 12 pounds. Just barely on the charts for ds..Sooo...you're going to be tiny. We like tiny.
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You have roseola right now. And you know what's funny about that? Somehow I find it comforting that you got the same childhood illness that all of your siblings had before they turned a year old. You really are more alike than different:)

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Something else that is comforting- and it is strange that it is- is that you have been extremely fussy for the past week. You had a fever last Thursday through Sunday night. It finally broke, and on Monday morning you woke up covered with a rash..so Mama knew from 9 previous children that you had roseola. And I knew why you had been SO fussy. So why is that comforting? Because the baby who never cries has been crying and wanting to be held for days on end, and now I know you can cry! I always wondered if it was somehow physically impossible for you to really cry, not just whimper, because we've only seen it twice...when you were having your blood drawn. Well, now I know- you can cry just like all the rest of your brothers and sisters. And you milk it for all it's worth when you're sick!
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Grammi read my post yesterday about Holland and said the sweetest thing- to trust our travel agent:) Isn't that what all of life comes down to? We can feel so lost or uncertain about the journey we're on, but when we put our lives in God's hands, we can trust that He is taking care of us.
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I read the sweetest story today on another blog. It was about a couple learning at birth that their baby girl had ds. The daddy was having a very hard time with the unexpected diagnosis. But right in the NICU where their baby girl was being taken care of, another baby girl with ds was being treated. Only this baby's parents knew ahead of time that she had ds...and they were adopting her. They were adopting her because she had ds, Lily. That spoke volumes to this grieving daddy, and the families became fast friends. A year later the parents adopted another baby, this time a boy, with ds. Their adventures are one of my favorite blogs to read.

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Because you know what? Like the statement "trust your travel agent", it's all about perspective. This couple's perspective was that a baby with ds wasn't just tolerated- she was desired. And their blog just radiates joy and happiness and love. Nothing scary, no grieving, no worries...This couple sees humor and fun in every day life, and they inspire me to just enjoy you, and leave the future in the travel agent's hands.

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I feel like I've learned a lifetime's worth of lessons in 9 short months of loving you, Lily Anne. God knew just what I needed when He sent me you:)

Love always,
Mama oxox

Day 20/At Home in Holland

Dearest Lily,

While reading some of my favorite blogs today. I ran across this post... It is written in reference to the famous essay, Welcome to Holland, by Emily Perl Kingsley.
Although the author used words I would not have chosen (and I've taken the liberty of replacing them with asterisks!) I can so relate to much of this.


Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little).

But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the d*mn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this d*mned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)


A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.


(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all. And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)


You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)


And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.


Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”


Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.


But you will leave the airport. You will.


And as you learn more about Holland, and see how much it has to offer, you will grow to love it.


And it will change who you are, for the better.(copyright - Dana Nieder, 10/2010)



Lily, I'm so happy to say I've left the airport. I am still navigating the streets of Holland, and rechecking my roadmap to see where to go next. I am definitely a tourist...but slowly I am starting to feel at home.

And occasionally I still do examine my travel brochure- is this really Holland? Because Italy is still very fresh in my mind...my tickets, though faded, are still in my pocket.

It's only been 9 months, sweet Lily.

Nine short months, but you know what?


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The longer I'm here, the more I'm convinced...this is where I was meant to be.

Love always,

Mama oxox

Tuesday, October 19, 2010

My Little Bookworm

Dearest Lily,


The other day Mama was doing housework, and I passed by this little scene...


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Caleb was reading a book to you, and you were listening so closely, and examining the illustrations with him.

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You were so sweet and gentle and quiet and seemed to be absorbing every word he read to you.

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Our family loves reading. One of our favorite outings is a trip to the library. As silly as it sounds, one of the things that made me sad when you were diagnosed with ds was that I wanted you to be able to enjoy books like we do.

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How unfounded those fears were...of course you are going to love books. You can't help it, being a part of our family!


We read at bed time. We read on road trips. We read in our leisure time, at nap time, whenever we have the chance. Mama loves reading stories to you, and so do all of your siblings...

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I can't wait to see what your favorite books are going to be some day.

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Some day, maybe soon, Mama is going to write a book about you.


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Loving my little bookworm,

Mama oxox

Monday, October 18, 2010

A Lifetime Ago

Dearest Lily,

Yesterday you turned 9 months old...seems like a lifetime ago that I made this montage of you...



I still get choked up watching it:) You were so tiny and helpless and beautiful!!

Happy nine months, baby girl!!

Love always,

Mama oxox

Sunday, October 17, 2010

Little lambs and Lily

Dearest Lily,

Mama took you to the pumpkin patch last week...and your favorite thing there was the petting zoo!! As soon as you saw the sheep and goats your whole face just completely lit up- I leaned you over the fance, and you could not get your tiny hands on those animals fast enough. You were grinning ear to ear and you kept laughing your fast funny little laugh that sounds like "kkkk!!"
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Mackenzie and I were laughing so hard just watching your excitement- you were so adorable!

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Mama's gonna buy you a sheep some day! :)

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Loving you always,
Mama oxox