Tuesday, January 31, 2012
Yesterday I took my angel upstairs to lay her down for her nap. It was 1:00 like always when we made our way up the stairs to her room. I follow the same routine everyday. I change her diaper, lay her down, and rock beside her bed until she falls asleep. Usually, she goes to sleep very quickly. Not yesterday.. Yesterday, as I sat rocking doing my Bible study in her room that little peanut was sitting up looking me right in the eye and wearing a wide smile as she did it. Yesterday was a battle. I couldn't help, but smile to myself though because she gave me her eyes in those moments. She looked right into me as if to say...I'm not going to sleep.
I wrote this in the margin of my Bible study workbook..
I praise you God for this precious girl. I thank you above all else that it is my eyes that she is staring into right now instead of going to sleep. Thank you Lord that I'm not missing this. Thank you for the gift of these moments..each and every one!
I am so blessed to be home with her. So blessed to be the one to put her down each day even when putting her down for a nap is a battle. I was thinking today that autism has given me this blessed gift..pushed us over the edge of letting go of our American Dream and demanded that I stay home. Autism in that sense has been an incredible blessing as it has given me the desire of my heart..to stay at home to care for my family. God has used autism..though it seems like a trial...for good in our family's life already. I know He will continue to do that and much glory will be brought to His name through our Jillian's life.
Sunday, January 29, 2012
We are blessed. Blessed to know Him and blessed to be able to live in community with so many others who love us because they love Him. You mean so much to me. You have become as close as family and I am grateful for you-each and every one of you!
Grateful for the way you sneak cards and gifts of encouragement for me in my hubby's office. Grateful for the way that you share with us your time, talents, and love. Grateful for the way you agree to meet around my dining room table for Sunday School because my treasure is uncomfortable in the nursery. Grateful for the way you get up during my prayer to check on the noise in the kitchen (aka my treasure tearing through the drawers). Grateful for the way you pick her up and love her each time you pass. Grateful for the way you bring her light up gifts because you know she will like them. Grateful for the way you take her in your lap and let her shake your water bottle. Grateful for the way you email me throughout the week to keep me connected to the adult world. Grateful for your kind words and that you are always there for me. I am grateful for you all today! Each of you has a different face and God has used you all to meet my many needs in a thousand ways in the last four years that I have been lucky enough to worship with you.
Thank you for reaching out to me this week and showing me God's love. I am bent over in awe of your service to Him! Thanks for being the picture of Christ's love that I needed most this week and always.
Wednesday, January 25, 2012
Our play therapy session was incredible.
She was there with us..really there with us!!
She even stayed "with" us for more than twenty minutes.
If you love a child with autism, you know what I mean.
She even had some "language". She said mama as a word several times, which she hasn't done in months, when it was my "turn" to play the accordion. AND she made the swing sounds when she wanted to swing. Her therapist even said the words that this momma clings to each time someone even mentions them...her language may be coming. I lay awake at night praying that I will hear her voice someday. I have found that on this journey, God is teaching me to let go of my dreams for her a little at time so that I can fully embrace her and who He has for her to be. As I have slowly let go of things little by little, I find myself clinging with all my might to the parts that I have left in my heart. Speaking someday..Hearing her calling momma when she needs me..I haven't let it go yet. I petition God on a regular basis to let it happen..to break through all those walls in her mind and allow her to speak with clarity. I don't know if it is in His plans for her, but today was a good day and this momma is holding on to hope. Hope that someday she will be just a little less trapped than she is now and enjoy being in relationship with us more. Oh, how I love her and am blessed beyond measure that God has allowed her to be mine.
Monday, January 23, 2012
Saturday, January 21, 2012
Check out her mama's blog here to follow her story. She has a long road ahead of her as far as her back repair goes. Please pray for her. If you feel led, you can also send her a card of encouragement.
Evelyn (Xiaoyun) Willoughby
c/o Kosairs Children’s Hospital
231 E. Chestnut St.Louisville, KY 40202
Friday, January 20, 2012
Thursday, January 19, 2012
I just wanted to tell you that as you lay on my chest sleeping last night I was overcome with love for you as I often am. I can't believe that God has chosen me to be your momma and I count it a joy to be able to take care of you everyday. I listened to your breathing as you lay on me in the dark and I felt your heart beating in rhythm and joy just over took my spirit in a way I can't explain. With all of the challenges that life has handed you so far, you are so full of happiness and are responding so well to being a part of our family. I am grateful to God that He gave you to us and that I get to spend the rest of your life walking alongside you as your momma. You have changed me in so many ways and continue to challenge me to reconsider what is most important. You are a feisty little spirit and I love watching you fighting out of the world that you seem so trapped inside of. Each moment that I get to gaze into your eyes or hold you close is such a treasured gift. One day it is my prayer that you will grow to understand and feel just how special you are and how very loved by us you are. Ultimately, I pray each night that this love will lead you to the love of the Heavenly Father and that one day we would all be together for eternity praising the one who made us and gave us the gift of each other.
I love you with all that I am,
Tuesday, January 17, 2012
Saturday, January 14, 2012
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!
Thursday, January 12, 2012
Great problem solving if you ask me.
She is constantly checking that cabinet making sure she has food in there. Momma constantly tells her that she will always have food here when she is hungry. She's just checking and using the chair to do it. What a smart little peanut she is and strong. That is one heavy wooden chair but she pushes it right in the kitchen scooting it over the carpet a few steps at a time. She keeps us on our toes that is for sure. Always in to something this girl is.. We love it.
Monday, January 9, 2012
This is probably the longest she was still the entire 90 minutes. :)
Friday, January 6, 2012
The good news is that she is going to get lots of amazing help. So many programs that are cutting edge, research based, and incredible are available to us right here in our area. God knew that. God knew that here she would get exactly what she needed in our family. Resting in knowing that He is control and that He has a huge plan for this little lady's life. A plan that will bring great glory to His name. Trusting that. Leaning on that.
Wednesday, January 4, 2012
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.
Monday, January 2, 2012
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!
I came around the corner to find her
modeling sissy's size 11 converse.