Monday, September 1, 2008

Learning to Like Living in Holland

Lately I have been reading a lot about the various previously not-identified health issues that families of adopted children have discovered in their newly adopted children. While this is namely in children who were adopted via the Waiting Child/Special Needs Program (China), it makes me think about what we, as a family, have been going through since bringing our daughter home from China in 2005.



Having been on numerous Adoption Groups since we began our journey to Livie in 2004, I have read lots of posts, websites and blogs about adoption, most with a definitive 'romantic' perspective on the subject. Before we received our referral for Livie, I fully expected Neil and I to be referred a "healthy female infant". Well, all did not go as planned. We were referred a toddler. I will fully admit that this came as a complete shock to Neil and I, and in fact, even our agency was at a loss. But, we knew that God had His hand on our adoption, and although I had to pray and work through this (grieving the 'baby' we wouldn't be bringing home so that I could rejoice in the toddler who we would be bringing home!), we moved forward with the full reassurance that God knew what He was doing, even if we didn't.
Before we arrived in China, we received an update on Livie. Upon seeing the attached photos, we suspected something was 'wrong' with her left eye, but once again, we knew God was in control. Then we were contacted by our agency. Livie's foster mother was stating that she felt that something was wrong with Livie's heart. The SWI had an ECCO performed on Livie and her heart was found to be fine. Then the foster mother said that she felt Livie was Developmentally Delayed (let me add that there WAS a short little *blurb* about Livie being developmentally delayed in her referral, but we just kind of dismissed it since she was overall declared healthy). A CT scan was performed and Livie was once again declared healthy. But, once in China we had no doubt regarding Livie's eye, but honestly we weren't too terribly concerned, knowing that once home our fabulous pediatrician would take good care of Livie. Long story short, Livie has Congenital Ptosis of her left eye. Now let me say it is mild, and really unless she is sick, tired or ticked off you really can't tell. She is monitored annually and we don't expect her to ever medically need surgery. Our wonderful Pediatric Ophthalmologist said that he believes the only reason Livie would ever undergo surgery is if she herself desired it later (as an adult), and then it would really be more cosmetic in nature.
So, Ptosis...we can deal with this! But, then other 'things' began to occur.
Livie began to have Bell's Palsy-like facial grimacing episodes affecting the left side of her face. Speech was slurred during this time. Two episodes which lasted 2 full weeks. In between these episodes there was another episode in which her left leg suddenly stopped *working*. Although she had reaction to touch in her foot, she was unable to stand or walk. This episode lasted two weeks.
Livie was referred to a Pediatric Neurologist. She received an MRI, the results of which I was told were inconclusive/normal. There was talk of Livie having mild CP, with the added statement being, "She's really not too bad." OK. Whatever. Without going into the specifics of it all completely here on my blog, my opinion Livie's Neurologist was not the best physician for Livie.
After this, Livie began to have great trouble with coordination, and began to have seizure-like episodes which involved her suddenly dropping to the ground (as though she was blanked-out) while standing still. Her lack of coordination had her walking into door frames on a regular basis. She couldn't walk through a parking lot without smacking her head on a car's rear-view mirror. She was displaying fine tremors whenever she tried to complete a simple task such as coloring, stacking blocks or washing her hands. Our Pediatrician was obviously concerned, and referred us to a different Pediatric Neurologist in hopes of getting some answers. We went to a new Pediatric Neurologist. Prior to our 1st appointment with our new doctor, I got a copy of Livie's other MRI. The report had lots of 'doctor talk', and one line that stopped me in my tracks: "Patient shows abnormal signal deep within the periventricular white matter." "Follow-up MRI in conjunction with labs recommended in 6 months." ABNORMAL?! I thought you said it was NORMAL! Geesh. Well, Livie finally did receive another MRI and an EEG (Livie's new doctor did not think that we were looking at CP, but was more concerned with the possibility of strokes. At this point I definitely wanted that CP diagnosis back!), both of which were in fact normal (and yes, I read both reports this time!). Great. Terrific. Now tell me why my precious little girl is falling down, exhibiting uncontrolled facial grimacing, and can't walk a straight line to save her life! At this point I realized that Neurologist are men and women of SCIENCE, and if they can't SEE the problem, they don't know where go from there. As a 'side note' Livie had one of her falling-down-seizure-like-episodes almost a year ago, hitting her head on a thick glass table, and has NOT had another one of these episodes since! It is as though something was *knocked back into place*! Strange, I know, but I am just happy no more of these scary episodes has occurred!
Through various circumstances (namely fantastic families in our Families with Chinese Children group), I was put in touch with a fabulous OT who specializes in helping children with sensory issues. Well, I thought, nothing else has helped, so what do we (or Livie, for that matter!) have to loose by seeing this lady?! Livie was thoroughly evaluated by Roni (Pediatric OT) and her diagnosis of Livie is that Livie has Motor Incoordination and Sensory Processing Dysfunction. This is all relatively new, and I am still actively researching and learning as much as I can about SPD. I have found a website which has been helpful, as well as a book which Roni suggested I read.
Livie is going to OT now twice a week. She LOVES it! And more importantly in just the short time she has been going we have already seen a definite IMPROVEMENT in our little girl!
While I must admit that back in 2004-2005 while we were waiting for our referral, I never pictured the path our family has taken, but it is OUR path. While there have been tough and frustrating times, I wouldn't want to change a thing, because this path brought us to Livie. Our path isn't a 'bad' path, it is just 'different'.
WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
So, now we live in Holland, and we are finding out that although it wasn't where we thought we would be going, it is a really beautiful place to live!
I will close out with sharing about Livie's new favorite song. She sings this song at the top of her lungs whenever she hears it, and it brings me tears of great joy to hear the words she sings:
THIS IS ME by Demi Lovato
I've always been the kind of girl
That hid my face
So afraid to tell the world
What I've got to say
But I had this dream
Right inside of me
I'm going to let it show
It's time
To let you know
To let you know
This is the real, this is me
I'm exactly where I'm supposed to be now
Gonna let the light
Shine on me
Now I found
Who I am
There's no way to hold it in
No more hiding who I want to be
This is me
Do you know what it's like to feel so in the dark
To dream about a life where you're the shining star
Even though it seems
Like it's to far away
I have to believe in myself
It's the only way
This is the real, this is me
I'm exactly where I'm supposed to be now
Gonna let the light
Shine on me
Now I found
Who I am
There's no way to hold it in
No more hiding who I want to be
This is me
You're the voice I hear inside my head
The reason that I'm singing
I need to find you
I gotta find you
You're the missing piece I need
The song inside of me
I need to find you
I gotta find you
This is the real, this is me
I'm exactly where I'm supposed to be now
Gonna let the light
Shine on me
Now I found who I am
There's no way to hold it in
No more hiding who I want to be
This is me
You're the missing piece I need
The song inside of me
This is me
You're the voice I hear inside my head
The reason that I'm singing
Now I found who I am
There's no way to hold it in
No more hiding who I want to be
This is me
One Lucky Mommy,
Mary

13 comments:

Tammie said...

I would have to say that we are all blessed to have your Livie in our lives. She is a very special girl who charms us all once she is comfortable in her surroundings. I'm so happy to hear that Roni is helping Livie.

Vivian M said...

I was reading your posts and muttered "thank God it's normal!" and then muttered "I wonder if she has sensory issues like Kerri?" and then kept reading to find out yes.
Jean helped me a great deal with this and recommended some great books, which you probably already have. Therapy helped Kerri in Fla, but we went without while we awaited our residency and insurance coverage here in Canada. However, Kerri still works on her trampoline and we are ready to start OT again soon.
I am so happy to hear it is not a tumor, or CP or anything horrible. This can be dealt with and you are doing the right thing sending her to therapy. To this day, Kerri is "klutzy", but not alot of people see her as anything but normal, and Livie will do wonderfully, with G-d's will and Roni's help!
Huge hugs. You all were meant to be together!

Minouche said...

I am so glad that Roni is helping Livie and so many of our FCC children (including Yasmin). Thank you for your candor and for being so open to tell the truth publicly in your blog. I wish all the best for you and your family! :o)
Hugs,
Minouche

Candy said...

I have to admit I was afraid there was going to be a different end to your post, and I am SO HAPPY to hear that Livie is FINE! I've heard such positive things about Roni and I'm sure Livie will flourish. She is a beautiful child and a very lucky one to have your Family to help her to achieve everything in life.

Life with JJ, Starr and Spice said...

One of the reasons that I respect you so much is that you do not put your head in the sand. There is no progress made in life by doing that. I am so happy to hear of the progress made with Roni. She is an amazing and gifted therpist and your precious girl will blossom under her care.

I live in Holland too and I like it just fine ;-)

Heidy, Joey and baby Madison said...

Livie was so meant to be with you, it was you who she was destined to watch over her and protect her. She is such a beautiful girl and her smile just takes your breath away. Yes, God had the plans and although I love Italy as well Holland is a wonderful place to be in... Our little Madison will also have to go through extended neurological tests to find out about her condition. Because of you and everyone who shares their stories of love we are trying to prepare ourselves for either country... with all our love
Heidy, Joey and soon to be Madison

Shari McConahay said...

Wow, Mary! So glad to hear that Livie is getting better and that it was not anything more serious! And you are amazing, you persisted and kept at it until you found out what it was and now it seems like she is in the best possible hands with Roni. Can't wait to meet this woman, since we will undoubtedly need her too, and yes, we are on our way to Holland as well! Get the Tulips ans the wooden clogs ready! : )

Heather said...

Mary -

I loved this post, there is a romanticized view of adoption and the reality many times looks nothing like the version others percieve to be truth.

I wish Livie well and am thrilled the seizures are not there and that OT is making a big difference. I am thankful for you that some of the other alternatives were not what plagued sweet Livie. God does have His hand firmly planted on our children and will guide your heart to do what is best for her.

Thank you for sharing:)

Heather

We5Chois said...

Hey Mary,
I am so happy to read your post and hear that Livie is doing so well with Roni.

She has helped both Hansen and Aimee to become more co-odinated and confident when faced with their SPD issues. I cannot praise Roni or the others in her office enough. They are angels on earth and anyone who adopts any child regardless of circumstance or who has that gut feleing about a birth child (like Aimee) should get an OT eval within a few months of coming home. The earlier SPD is addressed the quicker and more effective the recovery can be.
Livie and Aimee are so alike in many ways. For me the biggest relief was realizing the kids could not help it. I spent too long yelling at them to 'think or be careful'. With therapy our lives are much calmer and there is a lot less yelling. Not to mention the lack of bruises and bumps from those 'moving' walls.
Give Liv a big hug and say Ni Hao from Shanghai. we love you guys.
BTW: please send everyone at Miss Roni's that we said hi too.

PS: Holland was not a place I wanted to visit, but once you accept it as home, life is full of beautiful tulips that brighten your life. I remember reading that poem when I was researching and it really hit home.

Itty Bitty Ladybug said...

I am so glad Livie is doing well with OT. My daughter does OT, PT and speech. While I never expected to spend so much time with so many specialists, I am very thankful that there are professionals who can help and make such a big difference in our lives.

There is a great program called Handwriting Without Tears that our OT is using with my daughter. You can find HWT online and their materials are relatively inexpensive and easy to follow. We also play with clay a lot to help with muscle strength and do art class through our rec center.

As Livie gets older, you may find support in the public school system. In some places you can start getting services through the school system when your child is as young as three.

Also, is it possible that Livie is allergic to gluten and that the allergy causes the seizures? My niece has similar sounding issues and a gluten free diet seems to have help.

Wishing you and Livie all the best. I know it can be scary, but you are doing a great job!

Cecilia

Waiting for Mia Hope! said...

What a wonderful story!! I will never forget your Forever Family Day. Your Livie has come a long way and is so very blessed by the mother that God has given her. Isn't it just the best to hear your children sing? Have a fabulous weekend!!! Hugs from St. Louis!

Carrie said...

MJ has senory issues as well-Senory issues are not fun but I am glad she doesn't have something worse this poor girl has been throught to much in her poor little life! I am so glad you two found each other-What a great Mommy you are and a good friend!

Jenny & Robert said...

Thanks so much for sharing this post Mary. I always enjoy reading your insights into adoption.
Jenny G.
From CCAIWC group
(still waiting for our first child from this list!)