So Much More Than a Special Need

Dear Jillian,
As I lay today next to you snuggling your frame against mine, I have so much in my mind.  If 17 months ago, I could have known what lay ahead of me as your mother I may not have had the courage to keep walking.  Loving you now so intensely, I know that if I had let fear scare me away from you I would have missed one of the greatest blessings of  my life.  You are so much more than a label or a list of special needs..you are so much, much more than an assessment of all you can't or will never do..YOU ARE MY DAUGHTER, MY LOVE, MY TREASURE made just by God exactly the way you are so that your life might bring glory to Him who made you.  This week, you have signed "I love you" to me for the first time.  You love, you have joy, you are learning, and you continue to bless me beyond measure.  Yet, as I think of the future there are times that I am scared.  Scared of what is to come, but it is in these times that I remember how faithful God has been in our lives.  I remember how He has walked ahead of us every step of the way and how He continues to meet our every need.  I love you with all that I have because Christ first loved me.  I praise Him for making you and blessing me with the gift of you. 
Momma

On The Farm

I love fall.

Pumpkins.

Mums.

Cool weather.

Sweaters.

And visits to the pumpkin farm.

Unfortuantly, the little treasure was pretty stressed out around all those very strange orange things.

I couldn't give up so easily though.

Eventually, I got her to laugh.



Mostly, she just likes to stick with what makes her most comfortable.



But a momma's gotta try. Right?

Try I did, but she left the farm in a jumbled, screaming mess.

She fell into a pile of those scary, colored bumpy gourds and pumpkins

AND

it definitly pushed her over the edge.

Poor thing!

Maybe next year, we will enjoy the farm.

Then again, next year-there will be two.

A New Sensory Bin

I finally took some more time to organize our home school area. 

(Having the social worker visit for your full house inspection can be very motivating.)

Thirteen years of teaching treasure equals lots of new fun therapy stuff.

I found these colorful feathers and some bead necklaces.



I had an empty bin or two.

 

And while they didn't stay inside the bin for long, Jillian loved interacting with them.

She was so cute getting the feathers out from between her precious toes.

A year ago she could have never jumped right into interacting with these strange textures and colors.

She's come along way baby!

We Tried

We tried to eat lunch out today. We have a gift certificate for a local restaurant and so we decided to give it a try.

We had a plan..Arrive early, bring her comfort aides, sit in the back away from the commotion..

She did so much better in a new place than she would have done eight months ago, but she was really uncomfortable. She was able to stay about 20 minutes and eat a little bit of the food that I brought for her from home. She just kept looking up at the ceiling and shaking her little head no, but she made it about 2o minutes. The best part about it all was she never did have a meltdown. When she was too uncomfortable to stay, she simply got off her chair, took momma's hand, and led me down the hall to the door. She communicated calmly that she needed to get out of there. I did have to walk her back to the table to get her coat and she cried and started to panic a bit, but when she understood that momma knew what she needed and we were on our way out..she stopped crying. In fact by the time we reached home, she was "chatting" about the experience from her car seat as I drove. Daddy and I were trying to analyze just what could have made her uncomfortable. We will probably never know, but we have a large gift certificate for this restaurant so..we are going to keep practicing.

Really, she is just so amazing and watching her taking on the world is just a joy. Being able to take care of her and having her trust me is such a tremendous privilege. It is one that puts me right at the center of God's will for my life. Daily I feel God asking me..are you willing to lay down your life for hers? Daily...I say resoundingly YES!! What a special gift she is to us!

She Can Do It

Not knowing what to expect when I brought home this little beauty-who couldn't yet walk, eat, or handle being off the bed in our hotel room without a major meltdown-makes how she is changing even more special.

REMEMBER....
She didn't smile, didn't make any noises, and never even attempted to communicate with us. She didn't touch toys, never looked in our eyes, and was covered in bed sores. She didn't want to be touched, turned away when we tried to hug her, and leaned away when I carried her. It was too much for her to take a bath, go on a walk, or be in any environment she was unfamiliar with...When I think about this, I am blown away by the enormity of it all...There have been days on this journey that I thought these milestones that I am about to report might never come. There have been moments that I thought this little treasure's heart would never heal..and while we have such a long way to go...She has come so far.

I use the word miracle so often as I write and talk about her. I hope I haven't overused it so much that you are now numb to the meaning of the word...OUR GIRL IS A MIRACLE!! Truly, I never dreamed that we would be witness to such! God has invited us on this journey as we watch her past, the hard things she has experienced, the loss, heartache..all be redeemed slowly by Him..I am blown away by the beauty of it all. I have never in my short life been able to be a part of something that has connected me so closely with the Lord. I have never had to rely on Him so helplessly as I have journeyed through anything else. What a privilege being a momma to this babe is..a privilege and a miracle..

I just wanted to share with you some of the things that she has mastered in the last month. She is so much less fearful and so much more trusting. I am able to correct her, stretch her, encourage her only as a momma can and she is responding..learning so much..growing into such a wonderful daughter. Learning that this place is safe, forever, and that she belongs in it.

So here goes..

1. She can roll a ball back and forth five or six times with me.
2. She can climb up anything that doesn't move.
3. She will "drink" from a spoon.
4. She sits in my lap during every family meal time.
5. She enjoys listening to the praise music in the sanctuary. She can sit for nearly an hour on my lap listening and clapping.
6. She snuggles up next to me each morning when she wakes often laying in my arms for 30 minutes in a tight hug.
7. She can clap and does it all the time. It was so funny when she discovered she could do it.
8. She can operate her light toys herself by pushing the button that makes them go!
9. She can stand on the stool in the bathroom and "wash" her hands with my help.
10. She can follow simple one step directions like sit down or put it in.
11. She is constantly seeking our attention. She always want in on the action.
12. She is very comfortable with all the people that come in our home and she immediatly interacts with them making her wants known. Usually she wants their water bottle or for them to swing or wrestle her.
13. She is comfortable in crowds as long as she is safe in her momma's arms. She will even get down to walk in a crowd as long as she is holding my hand and is in a familar environment.
14. She loves her daddy and always runs and screams with joy when he comes home.
15. She can wait a few minutes without getting upset.
16. She will hold a crayon in her hand and let momma move it to scribble.
17. She will come if you call her name.
18. She is eating lots of chunkier food and can gum it with the best of them.
19. She has gained a whopping ten pounds in eight months.
20. AND THE BEST NEWS YET...Momma has been working on getting her to feed herself. I have broken it down into small steps allowing her to master each one. Steps like..get comfortable with picking up the spoon, putting the spoon in the bowl, bringing the spoon to her mouth AND I am so thrilled to report that my baby girl is using a spoon to feed herself. Considering she had no clue how to eat, chew, swallow, or even allow a spoon in her mouth just seven months ago..JOY that she is conquering this! Watch her do it!





Please pray for us. There are big changes in the months ahead. She is turning three in just two months. Turning three means new therapists, programs, and environments..as we head into the public school for the first time. If I could choose, I wouldn't want her in public school..I must admit. This makes my swallowing it even harder, but I am praying for wisdom as I charter this unknown territory. We also have an important medical appointment tomorrow with a developmental pediatrician. We are hoping this can shed a bit more light on our girl and what we can do to help her.

Busy, Busy

These days my little girl is busy..busy..busy. It is so normal and so good to have her running at full force and grabbing hold of life with both hands. She seems so secure..so much more attached..so incredibly connected..that it just continues to amaze me. She has come so far. There has been so much progress made in the last month. I have so much to update and so many pictures to load, but she is keeping me so busy that finding the time has been hard..

I have just had the most beautiful day with her and so I am sharing these pictures even though I have many older ones I should share first... I can't help myself. She is just too cute.

Woo Hoo!! That garland is gone and I can climb again!

She's clapping up a storm.


I came around the corner to find her
modeling sissy's size 11 converse.

She got a new sensory bin for Christmas and loves going to town in the beans.

Joy..true joy!

I wonder if she ever felt safe before she came home. I wonder if she ever laughed or smiled. I wonder if she ever felt truly loved the way she seems to feel now. I wonder so much..but as I wonder I just give thanks with an overflowing heart that she is mine and now she is doing all of that and more! God is so good and I am so lucky to have this treasure home.

Just a Swinging..

Look who loves her new swing that Daddy mounted in the door frame. It is the same kind of platform swing she loves to use in her therapy sessions at Easter Seals and having one at the house has been wonderful!! Just look at that smile...

Being able to devote thirty minutes each morning to swinging her is such a blessing and something that this momma doesn't ever take forgranted. Thanking Jesus that I am able to be home so that I don't miss these faces and her joy!

Doing the Dishes?

One of my favorite things to do when Emily was little was to have her in the kitchen with me. I let her "help" with everything and Jillian is no different. In the last week, this special girl has spent so much time with me in there including doing the dishes..

Water? Is this for real?

Hanging out here in this water is awesome fun!
This brush feels so funny.

It's stuck! Hmmm..

Whoa there it goes! Wheee!!

Happy! So happy! All three of us were in the kitchen surrounding her as she played. We are so happy to have her here. So happy to surround her every momment and just marvel at all the wonder in her eyes. I am so blessed to have this family. We are truly happy and I can't imagine life without this treasure in it. So funny it seems like she has been here forever.

Mommy's Little Helper

Here she is helping me in the kitchen. Truth be told..she loves to watch the stand mixer go round and round. She will stand on the chair at the counter and watch me use all the utensils while smiling as she watches that mixer. She's even wearing the little apron that used to be Emily's that matches mine. Every little girl needs an apron that matches her momma's. Right?

So so cute...this little peanut is a huge blessing.

She even rolled the peanut butter ball mixture in her hand for a while. I absolutely love having a little one in the kitchen with me again. I know that these moments will be gone all too soon. So this time around..I am embracing every mess, every extra minute, every smile, all the wonder..and I LOVE IT!!! Hope you are taking the time to enjoy these moments in your house this season. Peanut butter balls don't last long at my house so we'll be whipping up another batch here soon.

I Wondered About Her

Sitting with this little bundle in my lap as Christmas music filled the air in our sanctuary, I shed a tear as I wondered this Christmas..

Does the woman, a half a world away who gave you life, think of you everyday?

Does she mourn the daughter that she will never know?

Does she imagine your laugh or your smile?

Did she ever dream that you would be mine, living in America?

Did she know that when she made the ultimate sacrifice and surrendered you, that she was giving me the greatest gift of my life?

I wonder about her and at times it makes me cry. I can't imagine my life without Jillian and I can't imagine the circumstances the she must have faced that caused her to make the ultimate, loving sacrifice and give up her child. I pray for her all the time..Jillian's birth mother. I pray that she has peace. I pray that her heart knows the Lord and that one day in heaven I will meet her and thank her for giving me this precious, priceless gift.

Numbers..I Hate Them

I am processing a lot this past week. So much is swirling in my head and mulling in my heart. I have started a post several times and then deleted it. Typed, then retyped some more only to stare at a blank page again. God is doing so much. Speaking so clearly and at times it leaves me spinning.

Monday started with therapy last week and numbers. Which leads me to this..I hate numbers..Assessment numbers that is-hate them...Age equivalent scores are down right evil if you ask me. These numbers for my baby girl are still so very low and all those blasted numbers do are turn my eyes from the Lord and leave me asking questions. Will I ever hear her sweet voice say "I love you momma"? Will she ever be able to dress herself? Will she read? Will she have to attend public school? Will she... all things that I have struggled with all week. Struggling not because I am not willing to embrace the answer to each of these questions being not what I hoped, but struggling because it is all so unknown. Struggling because in my mind, I want to have a plan for the future. I want to be in control. One thing the Lord continues to teach me is that I may not see my dreams for her this side of eternity. One more thing is for sure, He is in control and I am not. He continues to teach me that He is the ultimate reality maker. His reality for my baby girl may not match this momma's dreams for her, but His plan is that her life, and our part in it, bring Glory to His name. Ultimately, that is what I want to live for-to bring glory to Him who made me and my baby girl. If she never speaks..God is still good. If she never reads..God is still good. If she never gets to attend the special, christian school we love so much..God is still good. I will still love Him. I will still serve Him and I will still obey Him walking by faith into this unknown future that I can't see. A future that is filled with joy and abundant love because He has allowed our Jillian to be in it with us.

Our BIG Week In Pictures..

Her first ornament hanging.

Her first glimpse at a Christmas tree.

Momma's helper in the kitchen. (aka playing in the flour.)

Going down the slide all by herself for the very first time. She is not in momma's lap anymore. Daddy was at the bottom to catch her and my did she love it.

The Surgery and Results..

Really surgery was not the hardest thing we have ever been through together-Jill and I. Jillian was actually calmer than she has ever been in a new place. (Though the doctors and nurses were still very concerned with how upset she was, we assured them she was fairing much better than she had some other times.) Just look at how cute she is in that hospital gown.

Up until she left us, she had only cried about 30 minutes of the 90 we had been in pre-op..Amazing for our girl who has been through so much and is so scared of everything new. The best part is that she actually used her supports to help calm herself. Generally when she is in a new situation and is very anxious, she just shuts down and tunes out. She doesn't let us help her, doesn't hold her favorite soothing items, or ever stop crying/kicking BUT today she held her favorite shake shake toy the entire time, let daddy rock her with a tight grip on her upper body (to calm her), concentrated on my singing (also calms her..poor girl), and calmed down off and on as we waited. She even smiled when the ENT doc came in pre-surgery.

Now, when the poor baby had to leave her momma and daddy with the nurse..she got hysterical and they had to give her a dose of drugs and an IV to calm her. Usually an IV isn't required for this procedure..only a mask, but my girl is a fighter and I think she was so afraid..she fought pretty hard. The extra dose of medication helped her to sleep and stay calm after surgery though so it was a blessing. As long as daddy and I sat on the floor with her, she slept off and on and cried off and on after the procedure BUT it was relativly easy and normal for a two year old after surgery. I have to admit that seeing her rejecting being held by the nurse as she was waking up in recovery and then calming down when her momma got there warmed my heart because that baby knows I'm her momma!

She was throwing up pretty heavy throughout the day because of the sleeping meds, but she also took a great nap too. All and all the day wasn't so bad. Thank you for your prayers. She certainly felt God's peaceful hand upon her.

Her hearing results came back normal..a miracle for sure considering that she has had so many ear infections go untreated in her short life. The tubes are in and while it did cause her some pain last night when the meds wore off..all is back to normal today. We even kept our therapy appointment. I tell ya..my little babe is just a miracle and I thank God for the chance He has given me to be her momma. Praying these tubes do their job and we don't have to fight another ear infection for a long time.

Please Pray..

Our sweet little miss is having tubes put in those pesky ears of hers tomorrow. She is also have an audiological exam done while she is sedated. The procedure is nothing complicated and it should go very smoothly. Psychologically that is another story...I am worried about not being able to feed her, having her away from me when she is waking up, and just how upset she is going to be about being in a new place and being prodded. I explained to the nurse how very special our baby is when she called (I am sure every mom does this!) and she assured me that they would take very good care of her.

Please pray specifically that..

our girl will have peace.

she will not be upset about not eating..she has known hunger and I don't want her to think there won't be food when she needs it.

we can provide her some pain relief as these ears have been really hurting her.

we will be able to handle the results of the hearing test and provide our baby girl with the best chance at reaching her potential.

Thank you sweet friends. How we are blessed by you.

Eating..

Just a little eating update. When we got our princess home, we suspected that she had never been given anything to eat but a bottle. The caregiver who deposited her in our arms told us that she was given one bottle a day before her nap. One bottle? She lived on one bottle a day. This means that our sweet one never learned to chew, has some pretty weak oral motor skills, and is very hesitant to let anything near her mouth. I suspect that since her cleft lip was repaired at 4 months old, and she was hurting, that she never went through the oral exploration stage babies have to progress through...nothing going into this sweet girl's mouth.

So...we have feeding therapy in place. We are working on getting her to accept different food textures (ie puree or baby food, mashed food, ect.) and we are also working on the chewing hierarchy. Chewing Hierarchy? Who knew? Well, I didn't have a clue, but the therapist has been good about guiding this momma ever so gently and leading me in the ways of feeding therapy. Our little one is making some BIG progress..though we still have a long way to go.

Here is some of what she is eating these days..

Fork mashed pumpkin pie with whip cream...YUMMY!

Accepting a spoon into her mouth quite nicely these days.

Also sitting in the high chair is no big deal any longer.

Gotta love a hot fudge sundae face.

I am working on trying to get her to pick up the spoon herself.

She is very unhappy about this. She regularly tells momma NUUUU..

while shaking her head and putting my hand on the spoon.

Eating actually brings her great joy as do daddy's antics while she's eating.

He is really cracking her up here! Gotta love her joy. It is so contagious.

Praying for continued progress and that she figures out that chewing thing. She still doesn't seem to have a clue about how to use those teeth of hers. She is still mashing food with her tongue in a sucking motion and can't seem to get her tongue to thrust forward anything out that is too hard to mash with it. That means it's soft fork mashed and pureed foods in her diet until those teeth can function. She is thriving though-nine pounds heavier than six months ago. We are still really struggling with getting her to accept liquids from a cup. She won't have anything to do with putting one of those things in her mouth. We have tried several kinds and none seem to interest her. Still, we press on and are thankful that she has no signs of dehydration despite not taking liquids. It's never dull around here and we love watching her grow..Eating is an adventure. I know the minute she chews a cookie, she won't be able to get enough as my girl loves her some sweets.

Whose in the Candy Bowl?

Look who climbed on the dining room table to get to the candy bowl..

She doesn't want to eat the candy (though I wish with all my heart she did). She just wants to get the boxes of nerds out of the mix because they make great shakers. She can regularly be found with a box in each hand shaking out a tune! Nerds are momma's favorite candy though so those shakers won't be in the bowl for long. I'm eating them!

So cute to catch her on the top of the table with her hands in the bowl.

Happy Six Months Home

Six months. The number of months it was between first seeing Jillian's sweet face and holding her in my arms for the very first time. Those six months seemed to take forever....

But since coming home, the last six months have flown by.

Happy Six Months Home My Sweet Girl.

Six months ago you couldn't...
walk
make any speech sounds
let me hold you
eat any solid foods
touch and play with any toys
go anywhere outside of our home without intense anxiety and meltdowns.

You didn't..
hold our hand
leave any room in our house without us
laugh
smile
sleep next to me at night
call out for help when you needed it.

BUT NOW... you do all of that and more. How I continue to marvel at how far you have come. How blessed I am to be your momma and to be able to watch you grow each and every day.

Today you can..
run, climb, jump, and swing...you walk occasionally too
scream with joy, babble like crazy, and chatter nonstop
you ask us to hold and rock you
you like to be snuggled tightly next to us
you love to eat
regularly touch every toy you own while throwing them around the living room
have gained nine pounds
are very comfortable outside the house if you are familiar with where we are
sleep nestled in the crook of my arm each night
laugh and smile continually

How we love you our precious girl. How grateful we are to God for the glorious gift of you. Looking forward to the many more months that life brings as our wait is over and you are home forever. You are forever our treasured daughter, loved by God, and adored by the three of us.

New Discoveries

What's that sound? Where is it coming from?

It's that strange black box daddy always has attached to his ear.

It's playing music??

Whoa. There's video too? Who knew?

This place is just full of surprises. New stuff everywhere I turn.

Incredible. I'll take a little worship music anywhere I can get.

(Love watching her discover it all.)

Just Because

Just because I want to remember that the last two days when you cried at therapy..you let me calm you. You sat close to me in my lap on the platform swing while I sang to you and you stopped crying. You recovered from your sadness and moved on because of momma's comforting you. Oh, sweet girl to hold you in my arms and have you stop crying..it's beyond words. How I love you so dear, sweet child. How I long for you to know that-all the moments of your life. How I want you to trust me more than anything. How I want to hold the place of momma in your heart for a lifetime. I am praying fervently for your healing and know God has a plan to redeem you little one. With all my heart, I wait in anticipation for that day. Until then, I will lay hands on you each and every night and pray my heart out. Love you! Love you! Love you, Jillian Elizabeth. Love you more than words could ever say.

Lessons Learned At the Park

I love going to the park with my baby girl. She has taught me much. Today we spent two hours there doing absolutely nothing. We had no agenda. She led me this way and that. Which got me thinking about all that she has taught me. I thought I would share it with you.

1. Take time to enjoy crunching the leaves.

Bury yourself in them if you want to.

The laundry will wait.

2. Always stick your tongue out while you work. It helps you concentrate.

3. When you feel like it, sit a spell.

It doesn't matter where you are-just do it.

4. Never go too far without reaching for the hand of one you love.

It's safer to always be connected to them.

5. Always take time to look at the beauty around you.6. When you find something you love,

laugh until your eyes disappear into your face.

7. Don't worry if your hands get dirty,

just fling it off.

8. Take time to pick the flowers.

9. Don't forget to get your nose so close to the blooms

that they brush your face and tickle you.

10. Just take as much time as you want here.

These moments are fleeting.

I won't be small forever and right now I just need to be with you momma.

I was thinking today that I wish I could just keep her small forever. No labels, no special needs, no worrying about her future, no struggling to make her fit into the mold this world has for her..just a baby enjoying time with her momma. I know we will have to face these things soon enough. As for today and tomorrow and that day after that, we will spend two hours enjoying one another at the park. Blessed to have time for this. Blessed to be her momma.