When fears are realized

I took Grant to the Levine Children's Hospital yesterday to begin the genetic testing phase. He did great. He was a brave little boy. It is looking more and more conclusive that Grant will be diagnosed with Fragile X  Syndrome and, very possibly, with PDD-NOS or autism.

They symptoms for Fragile X Syndrome are:

• happy-go-lucky demeanor... check.
• sensory issues... check.
• larger forehead... check.
• hypotonia... check.
• a single line across each hand palm (for some)... check.
• spurts in growth... check.
• fine motor delays... check
• significant speech delay... check.
• other developmental delays "due to mental impairment"... check (with tears rolling down my face).

The syndrome is an inherited disorder (gulp) and is most commonly found in boys. Needless to say, we are watching Wesley even more closely now. He will be evaluated again by a therapist next week. If Grant tests positive for Fragile X Syndrome then I am sure we will test Wesley immediately as well.

It seems my greatest fear has been realized and my nightmare has come true. Obviously we still need to wait for the DNA test results to come back (it will take 4 to 8 weeks), but the truth seems very apparent to me. The emotional pain is so strong that, at times, I struggle to breath. I KNOW God has a purpose for Grant. I KNOW that God knew and planned all of this. He is the author of Grant's life. Sometimes knowing that comforts me and other times it adds to my pain. The future seems very uncertain and feelings of hopeless attempt to overtake me. But this I am certain of: I CHOOSE to trust God and praise His name and I love my beautiful Grant so very much.

Thanks again to everyone who is praying. Also, THANK YOU to my sister-in-law Lydia who accompanied me to the children's hospital yesterday and patiently played with and read to Grant so I could focus on coping and paperwork. And THANK YOU to my mother-in-law who made a very yummy dinner and watched Wesley while we went to hospital. They both watched the boys for me yesterday while I walked around in a daze. :) It appears that it will truly take "a village" to get through this.

Your hands made me and formed me;

give me understanding to learn your commands.

May those who fear you rejoice when they see me,

for I have put my hope in your word.

I know, O Lord, that your laws are righteous,

and in faithfulness you have afflicted me.

May your unfailing love be my comfort,

according to your promise to your servant.

Let your compassion come to me that I may live,

for your law is my delight.

 Psalm 119:73-77