Sunday, November 20, 2011

3 Months

Quentin turned 3 months old on the 9th.

Where has the time gone?

Life is adjusting to the "new normal". Quentin has become a very happy, and fun baby. He is still a highly sensitive and reactive baby. But I am understanding him better, and he has found that as long as he is held his world is a great place.

Monday, November 14, 2011

Happy Birthday!

6 years ago, a tiny little baby girl was born in Bulgaria weighing just under 1 1/2 lbs. She was born to a mama who couldn't keep her, maybe because she was the 5th mouth to feed or maybe because she was so premature, just 27 weeks, that this mama knew she had to let her go to let her live.

God's plans are perfect, and in His perfect wisdom He helped this tiny little baby girl to fight, and to survive not only such a premature birth in a poor country's hospital, but also 4 1/2 years in an orphanange that was understaffed, underfunded, and under educated on the needs of children with special needs.

Today Miss Tavi John is celebrating her 2nd birthday with her forever family, her 6th anniversary of her birth. The day I met her I knew in my heart that God was right there in the room watching THIS mama meet her little girl for the first time. He was witnessing first hand the the fulfillment of His plan for Tavi to get HER family. As it says in Psalms 68:6 "He sets the lonely in families..."

But that was not the end of Tavi's story. Rather it was just the beginning...
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

We love our little Tavi. She is nutty, stubborn, musically gifted, smart as a tack, and fits in so beautifully with our "little bit crazy" family. I used to worry that bringing a blind child into our chaotic, loud, messy, crazy, big family might be an extremely hard adjustment. I can't imagine living in this household without my sight, but Tavi thrives in our family like she was born to it! And in fact ... SHE WAS. God's perfect plans, His careful attention to detail, He loving hands guiding us each step of the way on our journey to each other... Yes, she was born to be in our family.

Happy Birthday Little Tavi!!!

Thursday, November 3, 2011

How Long Must I Wait....

How many licks does it take to get to the center of a tootsie pop?

It takes just over 46 hrs. to drive from Los Angeles, CA to Portland Maine. The Earth takes a year to go all the way around the sun. An Elephant is pregnant for 22 months. It takes an average for 5 years for a college degree.

How long does it take for a child with Down syndrome, who lived the first 7 1/2 years in an understaffed, under funded orphanage to start acting like a typical almost 8 year old child with Down syndrome?

You can find the answers to a whole lot of "How much time..." questions by using google. But no one can tell me how long it it going to take Yana to reach even simple developmental milestones.

Yana has been home for 16 months. It is hard most days for me to see how far she has come. Progress has been slow. So very, very, very blessed slow!

She definitely has learned some about how to play one on one with another person. That has really helped her personality to shine through. She is willing to explore her surroundings on her own, and to search out a toy. Those are both things she would not do the first few months home. She open doors, climbs on furniture, and makes messes. She will give me "a big hug" or lean in for "kisses". She now makes some consonant sounds, but will not mimic. She has gotten much stronger and moves more purposefully. She has gone from weighing 24 lbs. to 35 lbs. She has been doing these things for a while now.

She seemed to me to have plateaued. And I have found the waiting game, the game where I wonder "Is this all that is in store for her?" to be especially difficult. No one can give me the answer to "IS this it?".

There are days I hate this journey. I love Yana, but I hate some of the issues we deal with in regards to her. I get so frustrated wondering just what expectations I should have for her on a daily basis, let alone for the future.

Yana likes to make noises. Throat clearing, tongue clicking or sucking. Spitting "raspberries". Licking a toy or banging it on her teeth. After 10 hours of this each day on her "bad" days, I start feeling a little crazy. I end up so angry at her. WHY? WHY does she do this? EVEN when I sit and play with her she will continue making these noises. I can get her to quit with a firm "NO" or tap her on the mouth and she will stop for a short time only to come back with these noises with a vengeance. It drives every one of us crazy after a bit! Sometimes she goes to bed a lot earlier then the rest of us. There's just nothing else we can do.

I've been at my wits end lately with her. The "plateau" has loomed large and ominous before me for a while. There is some good news though. The last few weeks, baby steps have been made. My almost 9 year old daughter can now:

1. Push large buttons or easy levers to make a toy work.

2. Play pat-a-cake clapping her own hands or "Clap" when asked to as long as I touch her elbows.

3. She can now wave BYE-BYE in response to someone saying it and waving as long as, again, I touch her elbow or arm.

4. She can pat her head when asked "Where is your head?" most of the time. She can also "find" her nose about 70% of the time and can "blow kisses" about as often on command. Again, I have to touch or hold her arm.

Progress has been made. They are all really good developmental steps to have reached... IF she was 1 or 2 or even 3. But she is almost 9. It took her over a year to learn how to clap her hands with me touching her elbows the whole time. OVER A YEAR.

So how long will it take her to be even remotely close to age typical development? At the moment I would take her having all the skills of a 3 year old! Will she ever even reach a 3 year old level in all her skills? I really don't know. But I know that aiming low will not serve her well.

She is my daughter. I try hard to not compare her to others that have come from her background. She seems some days to be alone in her fight... IS anyone out there struggling like my little girl?

How long must we wait for things to turn and start moving more quickly? How long must we wait before she stops acting like she is mentally insane and trapped inside herself just because we go to the grocery store? How long must we wait before people stop assuming she is deaf and or blind because she will not acknowledge them? How long? How long? How long?

How many licks does it take to get to the center of a tootsie pop? It is just a simple sucker. It's not even that big. How hard can this be to figure out? The best information I could find on Google was between 150 and 411 licks. I guess if they can't figure out an exact number for this question, then I'm not going to find an answer to my question of "How long will it take Yana to ....".

Hope is a beautiful thing. So I hope. Each day I hope, because one day I might just have my answer!