January 27, 2011

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


  1. Lifting up your family in prayer again today, Karen. Try to take it day by day and remember there are many friends, near and far, praying for you and Aaron as you wait for answers.

  2. Hi Karen, this is your neighbor from up the road. I know we've only met the once, but I've been following your FB page & blog posts. My heart truly aches for you, from one Momma to another. Would it be okay for me to add your family to our prayer list at church? Also, I have a friend from high school who is having to find a new normal. If you think it might help to read her thoughts on the journey, her blog is http://prayersforjohn.wordpress.com/ Although her situation is very different, her faith & her struggles are honest and seem to resonate with so many. Remember we are right up the street if there is ever anything we can do.

  3. oh, Karen i am praying for your family during this very difficult time in your lives. i know it hurts your mothers heart to see your precious little boy suffer and be diagnosed with these names of something wrong. Grant is such a sweet little guy, and so smiley, it's hard to hear the doctors words, I'm sure. your faith in the lord will pull you through, even though it is the most difficult thing. Hang in there and keep trusting and be sure you and Aaron keep close in your love for each other. you need each others love and support at times like this. :-)

  4. Karen, this is a lot to take in for you guys I'm sure. I pray the grace and peace of our Lord chases away. May each moment be full of His security and hope. Please let me know what I can do for you guys.

    Love, Sam

  5. Karen, I don't even know if you know who I am :) I'm friends with Lydia, and my sister, Kristen Brewer, is a good of Aaron's. I found your blog through Kristen's and wanted to let you know how inspiring your faith is! I've been reading through your latest posts and I'm just touched and in awe at your trust in the Lord and your constant, deliberate decision to CHOOSE trust, faithfulness and obedience. My husband and I will for SURE be praying for you, Aaron, Grant and Wesley as you continue on the path the Lord has chosen for you!

    "In this world you will have trouble. But take heart! I have overcome the world." John 16:33

  6. Karen, I pray that you get the answers that are needed and the best therapy available to treat the problem. My Benji was suspected to have Fragile X. He had many of the symptoms and genetics was positive that is where the testing would lead. He does NOT have it. They tested twice even. This is why we are left with waiting. Know that God will always be faithful, and the answers will come. Trust in God, not man.
    I pray for you all as this testing is done.


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