Monday, January 19, 2015

happy birthday grace...

Our beautiful and sweet little girl is eight today!

It's been awhile since I posted an update on Grace and so  I thought I would do it today, on her birthday.  You can read last year's update here.  Truthfully, most of what was written a year and a half ago is still current information.  Grace continues to be delayed in all areas of growth and development.

 However, she has recently been 'communicating' her needs and wants by taking our hand and walking us to where she wants to go.  For example, at home when she gets hungry she will either walk over to her chair and wait until we notice her there.  Or she will take our hand and walk us over to her chair.  This is clear communication of her desire and is progress.

We are working on a communication plan with her amazing teachers and therapists that includes pictures and choices.  They are working on training Grace to point to a picture of what she wants to do next or the choice she has made.  Once they get that refined, we will begin using the same communication board at home and church.

I still haven't given up hope that she will learn to talk, even though most experts say if she hasn't learned to talk by now, she probably never will.  This is just something I want for her to do so badly.  I'm not sure why I have such a strong desire to hear her voice but I do. 

She has also started to cry to show that she is upset emotionally.  An example of this is when her brothers go downstairs in the basement to play and shut the door.  She will stand at the closed door and cry.  As soon as we open the door and let her go down, she stops crying.  It is so amazing to see her exhibit 'typical' feelings of being left out.  Which now that I type that may seem odd to be happy about, but truly we cherish each time we see Grace act like other typically developing kids.

We will be starting intensive feeding therapy with Grace in February.  Grace and I will be going to Hershey Medical Center for four weeks of 'inpatient' therapy.  We will be staying at the Ronald McDonald House and going to therapy during the week and come home on the weekends.  After years of outpatient therapy and working with Grace at home, we finally came to the realization that her delays were behavioral.  So after much prayer and research, we are going with the program at Hershey.  We have heard really good things about their program for years and are hopeful that they will help Grace reach her goals.

Our goals for Grace are that she will; 1) eat solid food, 2) feed herself and 3) drink liquid.  These are the same three goals we have had for Grace for feeding for 7 years.  We will be starting on drinking liquid and then moving to eating solid foods.  When I met with Kathy, the therapist we will be working with, she said 'We can help you.'.  Which caused me to tear up because no one has ever said that to us about Grace.

So right now, I am busy planning on being away from John, Luke and Mark for a month.  Thankfully, we have amazing family and friends who are willing to help out with the boys, so that Mark can work while I am away.  It is going to be such a big change for our family, but we are convinced  that this is going to help Grace.  I can't wait to eat dinner together as a family of five.  It seems like such a silly thing, but we have never had a family dinner where all of us eat at the same time.

Grace has also developed some mad problem solving skills.  Over the summer, we kept finding Grace out on the back deck but the door was closed.  We couldn't figure out how she was getting out there, since none of us were opening the door for her.  One day, I finally saw what she was doing and was able to catch her in action. It also answered the question of what happened to our screen...

Our church continues to amaze, bless and support our family with respite night.  On the second Saturday of every month, our church hosts respite night for any family with a child of special needs.  You don't even have to go to our church to take part in respite.  They care for all of our children for four hours and really do amazing and fun things with the kids.  Our boys love to go and Mark and I love to have a consistent date night throughout the year.  It allows us to stay connected and gives us at least one night a month to focus each other.  I don't think we would take the time every month without this opportunity even though we know it is super important to sow into your marriage.  This past weekend a local gymnastics center opened their doors for respite night and the kids were able to use the equipment with the help of the kids that train there.

We also continue to learn and grow how to be a family affected by disability.  Which, truth be told, is sometimes harder that I think it should be.  We haven't faced out right discrimination but we have faced judgement and thoughtlessness.  We do experience be stared at in public when Grace decides to vocalize in crowded stores or restaurants.  This continues to be a learning experience for all of us as we talk through helping the boys deal with being singled out and stared at by others.  We also have talks about the impact of having Grace in our family and the fact that we just can't do some things that their friends can do.  These tend to be deep, heart felt conversations that require grace-filled words and sometimes result in tears.

But through it all, we love having Grace in our family and can't imagine our lives without her.  We remind the boys that God chose us to be Grace's family and that she is both a gift and a blessing to us. 

Happy Birthday Grace!  Mom and Dad love you more than you could ever know.  And obviously, I miss warm weather since all the pictures on this post are from last summer!


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