Wednesday, April 6, 2011

At Home in Holland

Dearest Lily,


You're sound asleep and Mama is up ...late at night as usual. We've been so busy, and so many things are really vying for my attention lately. I feel pulled in a million directions both physically and mentally...and emotionally too.




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I read a post on a message board about a mama who came here to read the "Welcome to Holland" analogy...I had copied it here just a little over a year ago, because it helped me so much-it spoke directly to those feelings of being in a new place and feeling somewhat lost and uncertain of what the future held.


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When I think back on those feelings, I can almost go there in my mind...to that place in my heart when I fully realized we were in Holland to stay.


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I've said it here before, but there were moments after you were born when I actually wondered if somehow your doctors has been wrong. I'm embarrassed to say it now; I spent many hours this time last year researching "misdiagnosed cases of Down syndrome." When you were first born I had so many people ask me if we were sure- you looked so much like our other babies, and at that time the "features" of Down syndrome were very subtle on your tiny face.


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Sure, you struggled in some areas... nursing was a challenge, and we spent four long months of pumping-crying-praying-trying-pressing-through til you finally got it. Staying awake for feedings was difficult for you, as was developing an appetite- I've never had a baby that I had to wake up in the middle of the night to feed! Gaining weight was equally challenging. We worked long and hard to get those extra calories in, spiking your bottles of pumped breast milk with a nutritional supplement.

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But for the most part you were so like my other babies, it was hard for me to believe you really were different genetically than they were. With Trisomy 21- the type of Down syndrome you had been diagnosed with- every cell in the body contains 3 copies of the 21st chromosome. I had so many people asking me if you had a "less severe case of Ds"...it felt funny trying to give people a lesson in biology, when all we really wanted to say was that our baby was just fine. But at the back of my mind I wondered if the questions and comments really meant something...maybe you really were "just fine".


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After all, you were rolling over- since birth!- something none of your other siblings had accomplished before 3 months of age. You smiled sooner than our other babies and seemed to focus on our faces with such intensity..."cognitive delays", words I had read in so many books and articles, didn't seem to be a phrase we could associate with our Lily. We were so connected, you and I, and every time a friend offered those words, "she doesn't look like she has Down syndrome", I secretly wondered if perhaps those words foretold any promise for the future.


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Although your doctors had given us the results of your blood tests a week after your birth, I wondered if something had by chance been overlooked. I even went so far as to email the doctor who saw you at the children's hospital in Portland, Dr.Pinter. Mosaic Down syndrome is a rare form of Ds that occurs when a person has a mix of cells, some containing 46 chromosomes and some containing 47 chromosomes. I had read about several cases where babies had been given a diagnosis of Trisomy 21, when they actually had Mosaic Ds, and I nervously asked if perhaps there was a chance you had been misdiagnosed as well. Dr.Pinter kindly replied...and reassured me that your karyotype did in fact reflect the typical presentation of Down syndrome, Trisomy 21. He went so far as to send me a copy of that karyotype...seeing a perfect triplicate of that tiny threadlike strand, present in all 20 cells that had been cultured, was both a relief and an added hurt.



I didn't have to search anymore for answers to my hidden questions...the proof was laid out before me like a detailed map of Holland.

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And so here we are tonight, dearest Lily, living as residents in this sweet land of tulips and windmills and Rembrandts...and I'm asking myself ....is it true?


Is it true that the pain of the loss of our dreams...will never, ever, ever, ever go away?





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We've only been here a year, sweet Lily. Just a year, and yet in some ways it feels like a lifetime ago that we stepped foot on Holland's grace-filled soil. Every now and then I get a glimpse of other places we thought we'd go...postcards from Italy telling us of towering cathedrals and Tuscan villas..



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But honestly, Lily? Honestly I wouldn't trade this journey for Rome in all its glory. After all, I'm not just a tourist anymore....I've planted gardens here, and welcomed strangers too.



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And in this place I've come to find a beauty that I never knew before. It's found in unexpected places, like the little curve of your tiny bent pinky, the stars that shine from your sweet almond eyes...




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And that pain of yesterday has no more hold on me than a long-forgotten dream. I'm happy to say that we're just fine....at home in Holland.




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Loving my wooden shoes,



Mama oxox








*excerpt from a song written this time last year, for Lily Anne...by John and Sophie Foley
A lily grew...

We sailed across the ocean just for you
Not where we intended to go
Holland’s nice and the people kind
The mountains high and the valleys are low
But in the mountains we saw a sign
And the valley we found -
Your beauty…

When I see your face, a Lily grew in the hardest place
When I see your face, I see the love of God and His grace
But when the seas come pouring in, and the dikes they want to blow
And the life I hold on to makes me feel like letting go…
I’ll put on my wooden shoes, and go dancing by the sea with you

Your beauty…
Is like a mother’s love
Your beauty…
Is like a father’s heart for his children... beautiful, beautiful
Your beauty…
Is like a brother’s hug
Your beauty…
Is like a sister’s knowing love... beautiful, beautiful you

15 comments:

cathy said...

oh Patti, simply & eloquently beautiful

xoxo
cathy

Deanna said...

so, so beautiful Patti. Love to read your posts, as always. You know, it's hard now that our babies are getting bigger but still staying babies in so many ways. I love your perspective, and I love Lily. I seriously wish she could have a playdate with Addison. Chubbs would so love to meet her!

nicole said...

So sweet ~ I can just picture you in some stylish wooden shoes.

Brenna said...

That last picture of you and Lily is just stunning. Absolutely beautiful!

Anonymous said...

I loved your post. I don't have a child with DS, but I do have a an only child with mental retardation that has a large group of friends that are DS. And her boyfried of 10 years is DS.

Just this weekend we celebrated my DD 30th Birthday at a Hall with a DJ and Dance, sloppy joes, potatoe salad and Birthday cake and ice cream. We had 100 of her special friends, their parents and staff.

My DD is mild to moderate MR has played floor hockey for 15 years, soccer, softball and bowling. She has been in Dance, and Blue Birds. She attends a special need church service. She works everyday with a group packaging 3M products. She leads a very full life, just a bit different..its a world where all are accepted.

Our daughter has been a blessing and we do get to see a world that few get to see. I do wonder sometimes what might have been... but I just don't stay there very long. We also haven't had some heart break or worry that teens can cause parents..drugs, drinking, driving etc.

Enjoy your journey! Your daughter is so precious. Connect with other mom's. Young mom's are blessed to have the internet, 30 years ago I felt so alone. It's nice to have friends going through the same things. This is very helpful as they age and get involved in activities.

The future is really not as scary as I thought it was when my Dear Daughter was small...it's really VERY good!!

I've bookmaked your site to follow your Dear Daughter.

God Bless
cozy

kecia said...

such a perfect way to express these feelings! You said it so perfect...just how I feel...and felt! This holland thing is somewhere people don't know what they are missing!

Anonymous said...

So beautifully written as always Patti. I still cannot get through your posts without tears. I also found out through my Dr. that babies with down syndrome can only have half the chromosome. I never knew that. Our Dr. thought that Benji might only have half the chromosome. And honestly, I am SO thankful he has the full chromosome and all that extra special chromosome. What a gift our children are. I am so thankful to be on this journey with you!! And I think about all the amazing things the Lord does in our lives because of the path He takes us on. If I did not have Benji, I would not have been led to you and so many other wonderful people. I would not have known about the orphans that break my heart. It hurts to know, but we must know in order to help and be that voice for them. I would not have all this extra special love I get daily from Benji's special personality. God is SO good!! Much love to you today Patti, Cara

Anonymous said...

So beautifully written as always Patti. I still cannot get through your posts without tears. I also found out through my Dr. that babies with down syndrome can only have half the chromosome. I never knew that. Our Dr. thought that Benji might only have half the chromosome. And honestly, I am SO thankful he has the full chromosome and all that extra special chromosome. What a gift our children are. I am so thankful to be on this journey with you!! And I think about all the amazing things the Lord does in our lives because of the path He takes us on. If I did not have Benji, I would not have been led to you and so many other wonderful people. I would not have known about the orphans that break my heart. It hurts to know, but we must know in order to help and be that voice for them. I would not have all this extra special love I get daily from Benji's special personality. God is SO good!! Much love to you today Patti, Cara

Anonymous said...

Oops, sorry, I must have put that through twice. Not sure how to erase. Also, wanted to tell you how wonderful it is to see your beautiful face in these pictures!!! Love, Cara

Jennifer Graham said...

I spent the first year of Megan's life thinking the exact same way...I even had an emergency room nurse ask me if I was sure she had Down syndrome...to which I replied "No, she doesn't, we just like to pretend she does because we like the attention" :0)
I feel so connected to you and your daughter, you put into writing so many of my own feelings that I never took the time to sit down and write. I will never forget one day when I was doing really well, no worries...and then in the mail came a letter from the NDSS, I had signed up, and I went into an absolute pity party...tears were everywhere. I was so mad that I had received this letter, even though I KNEW I had signed up. I was just MAD...feeling that life was so unfair for Megan, why us??? But, you quickly get over those feelings and move on. Megan is 9 years old and those days still come...not too long ago a couple of teens called her a retard to my face (you can read about it on my FB page under notes). Even though I have read a lot of your blog and I have cried many, many tears...I still feel happy and blessed and so grateful that there are others who are in the same situation I am in and can relate...so Thank you!

Danielle said...

LOve love love Lils in that blue skirt & white shirt. She looks so darling!

Just Trying Not to Blink .... said...

Beautiful Post! Simply Beautiful!

Eli's Mom said...

You said it so well! I think our little ones are close in age. Your post made me take the time to realize - I love it here in Holland too :). Thanks for sharing. (Pam)

The Holt's said...

This is beautiful!

Denise Duncan said...

She looks just like her sister. How beautiful you are as a mother and teacher to us all! God Bless!