Deflated.

I think that's the best way to describe how I feel today.  The morning started with a home visit from our EI Counselor and in addition to her simply doing her job, she's become someone I trust, confide in and appreciate.

I agreed to do an informal screening this morning just to see where Sarah is at and to see what progress she has made in six months.  It was exciting and encouraging to see the improvement in all areas of development.  I'm one who likes to have things written down.  I'm a visual person and so I need to see the changes on paper.  So, in my organized fashion, I whipped up a little chart that compares where Sarah was at 35 months and where she is at 40 months. 


The yellow highlights Sarah at 35 months and the blue highlights 40 months. 

Area of Development	Skill Level	Age Difference
Fine Motor	27-28 months	7-8 months
	33-34 months	6-7 months
Gross Motor	25 months	10 months
	28-29 months	11-12 months
Receptive Language	27-28 months	7-8 months
	33-34 months	6-7 months
Expressive Language	27-28 months	7-8 months
	29-30 months	10-11 months
Auditory Memory & Recognition	24-25 months	10-11 months
	28-29 months	11-12 months
Visual Memory & Recognition	18-19 months	16-17 months
	23-24 months	16-17 months
Self Help Skills	31-32 months	3-4 months
	37-38 months	2-3 months
Social Skills	39-40 months	4-5 months (ahead)
	48-49 months	8-9 months (ahead)

 
So yes, she IS improving but she also is still getting older and the way I see it is that she is no further ahead at this time.  Although she isn't at the level of a 18-24 month old, she's still up to 1.5 years behind.  It was when I looked at it this way, I felt my everything simply fall.  My heart, my energy, my spirit.  I guess it leaves me to wonder if she'll ever catch up.  It is hard to send her to a play-based program at our church designed for two year old kids, knowing it is perfectly suited for her.  I believe that she wouldn't thrive or succeed in the preschool program geared for 3-5 years old.

We had an appointment booked with a geneticist since August.  Two months we waited.  Three days before, we receive a phone call cancelling that appointment.  Just. Like. That.  After three phone calls back to them, I receive a new appointment... for November 21.  Another month to wait.  Four days before that one, we will be at her MRI and another week after that, we'll be following up for the MRI.  I'm already looking forward for the month of November to be over.


I'm feeling incredibly discouraged today.  As much as I know and believe I need to follow through with all of this for my daughter, my momma heart wants to just leave her be.  Save her the pain of needles, doctors, nurses and tests.  I wish these next words were mine but I credit my friend Jessica for saying what I haven't been able to put in words:


"There are no guarantees in life, and although we don't want our children to be in pain, we know that even this present suffering can be "worked out" for good as we love and train our children in the middle of their suffering."   


I'm not sure when (or even if) Sarah will ever understand why we are doing this for {to} her.  For now I will continue to advocate for her and do whatever I can to help her.
Philippians 4:6-7
Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.  Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.


Isaiah 41:10
Don’t be afraid, for I am with you.  Don’t be discouraged, for I am your God.  I will strengthen you and help you.  I will hold you up with my victorious right hand.