Joy in the pain

I received the devotional book Jesus Calling: Enjoying Peace in His Presence by Sarah Young from one of my aunts when she visited me in October. It has been a daily encouragement. Below is an excerpt from November 24th's entry (to be read as if God is speaking directly to you):

"Thankfulness takes the sting out of adversity. That is why I have instructed you to give thanks for everything. There is an element of mystery in this transaction: You give Me thanks (regardless of your feelings), and I give you Joy (regardless of your circumstances). This is a spiritual act of obedience - at times, blind obedience. To people who don't know Me intimately, it can seem irrational and even impossible to thank Me for heartrending hardships. Nonetheless, those who obey Me in this way are invariably bless, even though difficulties may remain. Thankfulness opens your heart to My Presence and your mind to My thoughts. You may still be in the same place, with the same set of circumstances, but it is as if a light has been switched on, enabling you to see from My perspective. It is this Light of My Presence that removes the sting from adversity." (Related Bible verses: Ephesians 5:20, Psalm 118:1, Psalm 89:15)

There are days when I have little or no desire to be thankful. My prayers start off with weeping, lamenting words, and sometimes even anger. But soon my thoughts are led to God's sovereignty and my focus is shifted off of myself and my difficulties and I feel my face being lifted towards the heavens where I find peace and hope.

Unfortunately, especially the past few days, as the minutes and hours pass, I am tempted to turn my focus downward again and I find myself full of immense anxiety and doubt. It is during those times I must frequent the embrace of my heavenly Father to weep and to be encouraged. This doesn't mean I don't feel pain - I feel it very strongly - but I also feel loved and comforted by the presence of the Creator.

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

When sorrows like sea billows roll...

I heard a lot of scary words today. A lot more took place during Grant's first neurological appointment than I expected. After reviewing all of his paperwork (the Watkin's Center faxed over a whole stack of medical reports and evaluations), asking many questions, and performing a couple of simple exams, the doctor had some theories. None of them good. I am still processing the information and am emotionally worn out so I am going to just list out what was spoken.

Possible causes for Grant's developmental delays:

• brain improperly formed during development in the womb
• low or no oxygen for too long during labor
• a stroke that could have taken place shortly after birth
• PDD-NOS
• Fragile X Syndrome
• some other genetic disorder

Tests that will be conducted over the next couple of months:

• genetic testing: a Fragile X DNA Test and Chromosomal Microarray (I am taking Grant to Levine Children's Hospital tomorrow to get the blood work done for this)
• a sleep deprivation EEG
• an eye test (to peek at the brain behind the eyes)
• an MRI
• another psychological evaluation

Please continue to pray for us. This news has been difficult to hear - and we are just beginning.

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.

It is well with my soul.

from the hymn "It Is Well with My Soul"

by Horatio G. Spafford

Neurological Testing: Step One - The Consultation

As I complete the paperwork for Grant’s neurology appointment tomorrow (Tuesday, January 25^th at 11am), I pray for strength, peace, and hope. There is no point in wondering why we have to go down this road – we are already traveling down it at full speed. With Grant’s diagnosis of hypotonia and Sensory Processing Disorder comes the knowledge that this must be done. This first appointment is a consultation; a time for the doctor to meet and get to know Grant. It will establish the course of action for the next few months and determine what tests will be done.

Please pray:

• That I will have an alert mind to answer all the questions and cover all the concerns we have (I am still recovering the flu and a severe cold)
• That Grant will be well rested for the appointment (he is also recovering from a bad cold and a double ear infection)
• For wisdom & discernment for the doctor as to what tests will be beneficial for Grant
• For peace with the decisions that will be made tomorrow and for the discoveries that may or may not be made through the testing
• That God will continue to supply all of our needs – and that we have faith to trust Him and in His promises
• and, above all, that God will be glorified

Lord, you have assigned me my portion and my cup; you have made my lot secure. The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance. I will praise the Lord, who counsels me; even at night my heart instructs me. I have set the Lord always before me. Because he is at my right hand, I will not be shaken.

Psalm 16:5-8 

10 months old

My baby boy is growing up! I can't believe he's already 10 months old. (Just a side note: this is how old Grant was when I found out I was pregnant with Wesley. Wow!) Wesley is cruising with more confidence, standing on his own for longer periods of time, learning to eat table food, and jabbering up a storm. He can drink from his straw cup but still resists drinking from a sippy cup - we're still working on that one.

Wesley LOVES the maraca. He can sure shake it! :)

Wes also enjoys playing with toy animals, balls, the big dump truck, and looking at books - and following his brother around.

 

Cat got your tongue?

Earlier this month we took Grant and Wesley to the Ear, Nose & Throat Specialist to see if they were tongue-tied. Sure enough - they were. Not severely but definitely enough that their lingual frenulums needed to be clipped. I have learned that "tongue-tiedness" is an inherited trait. They were able to clip Wesley's frenulum at the ENT but, unfortunately, Grant's will involve out-patient surgery. It gets slightly more complicated the older you get.

Wesley handled the procedure like a champ. He cried for a couple minutes and then flirted with a lady while we were checking out. He was in the best mood the rest of the day and has really begun to jabber.

Sweet pictures. Wesley with his "gros-grosmutter" Penner (great grandma).
So precious.

Below is a picture taken two years ago of Grant with gros-grosmutter Penner.

Minnesota Fun

Every year Aaron looks forward to our Minnesota trip so that he can have fun in the snow (and spend time with his in-laws). This year Grant was able to join in - at least for a little bit.

  

 Aaron & Grant in the sled pulled by my brother Jason on the four-wheeler.

What's Minnesota without a little snow-mobile action?!?

Of course, Aaron was put work as well. :)