August 30, 2012

When it rains...





I tried my best to keep my composure as the specialist looked me square in the eyes and told me Grant is not getting near the amount of therapy he needs. "His future rides on getting the help he needs now," she emphasized.

"You are preaching to the choir," I told her. I know she is right. I have heard this many times before and it never fails to flog me with feelings of despair and fear. "We are trying our best to give him everything we can," I replied while choking back tears.

What do you do when your best isn't enough? Seek the One who is more than enough.

But seek first the kingdom of God and His righteousness, and all these things will be added to you. Matthews 6:33

I am learning to abandon my prayers that request ease of passage through life, worldly comforts or financial success. Instead I plead for wisdom (1 Kings 3:11-14) and help for my unbelief (Mark 9:24)

If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him. But let him ask in faith, with no doubting, for the one who doubts is like a wave of the sea that is driven and tossed by the wind. James 1:5-6

Oh how I long to have unwavering faith! I desire to stand firm against the winds of doubt and fear that blow against me. Praise God for His faithfulness even when I continue to stumble!


Unfortunately, our situation is not unique. Many children with genetic disorders, like Fragile X Syndrome, often require a lot of therapy. And in most cases, even with insurance (if insurance will cover the therapy at all), the cost is staggering.

I often think of the Bible story of Jesus feeding the five thousand with just five loaves of bread and two fish (Matthew 14:13-21). As we try to provide for Grant, I pray that God will multiply our efforts - just like Jesus did that day for the hungry crowd. 








I have learned to kiss the wave that throws me up against the Rock of Ages. C.H. Spurgeon

August 14, 2012

pieces of my summer treasure


Summer is beginning her slow exhale. While there are still plenty of weeks of warm weather to be had, change is in the air. School is about to begin and our daily routine will be adjusted.

 We are savoring every bit of summer time together.


We had a burst of slightly cooler weather and took advantage of every extra minute we could spend outside.


And, of course, there is always time for a little mud play - also known as "sensory integration" in our family. This is a good example of why I always carry a big package of wipes with me. :)


My heart skipped a beat as I saw Grant maneuvering this portion of the play structure. He couldn't do that earlier this summer. The combination of motor planning issues, hypotonia and major vestibular/proprioceptive disorientation makes it extremely challenging for Grant to climb and descend stairs and even walk steadily at times. So you can imagine my elation when I witnessed Grant walking the elevated, uneven steps all by himself (and with no prompting)!


Grant's birthday is just around the corner. I get emotional just thinking about celebrating four years of Grant. There is so much about him I want others to know.  

Yes, he is a boy who has Fragile X Syndrome and that puts numerous challenges in his path and it can be hard for others to see past... but he is also a boy who is kind, loyal and very forgiving. He loves to read books, play baseball, go on walks, be silly, laugh, eat, jump...

To those who have taken the time to see beyond Grant's challenges and love the boy he is at heart, thank you.

To those who read this blog and support, encourage and pray for us, thank you.

I mean that with all the thankfulness my heart can possibly express.

. . . . . . . . . . . . . . . . . . . . 

OK, moving on from my emotional rant... :)

Beautiful days often mean getting my car washed by all the handsome men in my life. 





. . . . . . . . . . . . . . . . . . . .

Another sign of summer slipping away is the end of church softball games.

I am so glad I decided bring the boys to a few games this year. Some went smoother than others, but once again I got to witness the patience and kindness of others as I relied on helping hands to make sure the boys stayed off the field and out of trouble. All in all, the boys did great and we are looking forward to next season!


Before our last game, Aaron ran with the boys on the field. It was a perfect evening and the perfect way to end the season.







. . . . . . . . . . . . . . . . . . . .

On Sunday we went with Aaron's parents to a local park that had a lake with a nice little beach. The time at the lake was short but we resolved to return soon.


[Insert blissful sigh...] I could spend my whole summer at the lake.

. . . . . . . . . . . . . . . . . . . .

I entered the summer with great hesitation - unsure of how I was going to provide the structure and therapy Grant continuously needs. Indeed, there have definitely been a few rough days in the mix, but overall we've had a wonderful summer break.

I am learning to take each day one step at a time... and treasure the little things.  




August 4, 2012

Peanut Butter Granola {recipe}

A couple months ago we dove head-first into a casein-free diet for Grant. Now we are officially removing gluten as well. That means I am on a mission to find new recipes that my whole family will eat.

Yes, I am one determined mama to find really yummy recipes that will improve the health of my son - and the rest of the family - and allow us to still enjoy food!

Introducing...
In the Kitchen with Karen


I found this quick and easy recipe from here. It took only a few minutes to make and it was very tasty. I had purchased some gluten free oats a week earlier and was excited to use them in this recipe. 

I {heavily} sprinkled the granola over Greek yogurt with fresh peaches while Grant had his with almond yogurt and fresh peaches.

Ingredients:
Makes four ¼ c servings

2 tbsp. creamy peanut butter
2 tbsp. honey
¼ tsp. cinnamon
¼ tsp. vanilla extract
1 c. oats (make sure, if needed, the oats are gluten free)

Directions:
Preheat oven to 325 degrees. Spray cookie sheet with non-stick cooking spray and set aside. Combine peanut butter and honey in a bowl and microwave until peanut butter melts (approximately 20 seconds). Stir. Stir cinnamon and vanilla into peanut butter and honey mixture. Add oats and stir until oats are completely covered in peanut butter mixture. Spread out oat mixture onto prepared cookie sheet and bake for 7 -8 minutes until granola is slightly browned (it took only 6 minutes in my oven). Let cool until granola is crunchy. 

Recipe originally from Peanut Butter Fingers

Wesley was a total fan of the granola as well. :)

August 2, 2012

bits and pieces of joy


A summer evening filled with simple fun, family, and laughter...



Jumping and splashing and giggling and flapping with a joyful heart...


Hearing the words "higher, Mommy, higher!" as I push my sons in their swings...


A slow walk to enjoy a companion's company...


A flower offered from the hand of a child... 

...These are the moments that make my most treasured memories.




Yes, the days are filled with many struggles - but there is still so much beauty and joy to be discovered.


August 30, 2012

When it rains...





I tried my best to keep my composure as the specialist looked me square in the eyes and told me Grant is not getting near the amount of therapy he needs. "His future rides on getting the help he needs now," she emphasized.

"You are preaching to the choir," I told her. I know she is right. I have heard this many times before and it never fails to flog me with feelings of despair and fear. "We are trying our best to give him everything we can," I replied while choking back tears.

What do you do when your best isn't enough? Seek the One who is more than enough.

But seek first the kingdom of God and His righteousness, and all these things will be added to you. Matthews 6:33

I am learning to abandon my prayers that request ease of passage through life, worldly comforts or financial success. Instead I plead for wisdom (1 Kings 3:11-14) and help for my unbelief (Mark 9:24)

If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him. But let him ask in faith, with no doubting, for the one who doubts is like a wave of the sea that is driven and tossed by the wind. James 1:5-6

Oh how I long to have unwavering faith! I desire to stand firm against the winds of doubt and fear that blow against me. Praise God for His faithfulness even when I continue to stumble!


Unfortunately, our situation is not unique. Many children with genetic disorders, like Fragile X Syndrome, often require a lot of therapy. And in most cases, even with insurance (if insurance will cover the therapy at all), the cost is staggering.

I often think of the Bible story of Jesus feeding the five thousand with just five loaves of bread and two fish (Matthew 14:13-21). As we try to provide for Grant, I pray that God will multiply our efforts - just like Jesus did that day for the hungry crowd. 








I have learned to kiss the wave that throws me up against the Rock of Ages. C.H. Spurgeon


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August 24, 2012

Where I find hope



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August 14, 2012

pieces of my summer treasure


Summer is beginning her slow exhale. While there are still plenty of weeks of warm weather to be had, change is in the air. School is about to begin and our daily routine will be adjusted.

 We are savoring every bit of summer time together.


We had a burst of slightly cooler weather and took advantage of every extra minute we could spend outside.


And, of course, there is always time for a little mud play - also known as "sensory integration" in our family. This is a good example of why I always carry a big package of wipes with me. :)


My heart skipped a beat as I saw Grant maneuvering this portion of the play structure. He couldn't do that earlier this summer. The combination of motor planning issues, hypotonia and major vestibular/proprioceptive disorientation makes it extremely challenging for Grant to climb and descend stairs and even walk steadily at times. So you can imagine my elation when I witnessed Grant walking the elevated, uneven steps all by himself (and with no prompting)!


Grant's birthday is just around the corner. I get emotional just thinking about celebrating four years of Grant. There is so much about him I want others to know.  

Yes, he is a boy who has Fragile X Syndrome and that puts numerous challenges in his path and it can be hard for others to see past... but he is also a boy who is kind, loyal and very forgiving. He loves to read books, play baseball, go on walks, be silly, laugh, eat, jump...

To those who have taken the time to see beyond Grant's challenges and love the boy he is at heart, thank you.

To those who read this blog and support, encourage and pray for us, thank you.

I mean that with all the thankfulness my heart can possibly express.

. . . . . . . . . . . . . . . . . . . . 

OK, moving on from my emotional rant... :)

Beautiful days often mean getting my car washed by all the handsome men in my life. 





. . . . . . . . . . . . . . . . . . . .

Another sign of summer slipping away is the end of church softball games.

I am so glad I decided bring the boys to a few games this year. Some went smoother than others, but once again I got to witness the patience and kindness of others as I relied on helping hands to make sure the boys stayed off the field and out of trouble. All in all, the boys did great and we are looking forward to next season!


Before our last game, Aaron ran with the boys on the field. It was a perfect evening and the perfect way to end the season.







. . . . . . . . . . . . . . . . . . . .

On Sunday we went with Aaron's parents to a local park that had a lake with a nice little beach. The time at the lake was short but we resolved to return soon.


[Insert blissful sigh...] I could spend my whole summer at the lake.

. . . . . . . . . . . . . . . . . . . .

I entered the summer with great hesitation - unsure of how I was going to provide the structure and therapy Grant continuously needs. Indeed, there have definitely been a few rough days in the mix, but overall we've had a wonderful summer break.

I am learning to take each day one step at a time... and treasure the little things.  





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August 7, 2012

...jars of clay



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August 4, 2012

Peanut Butter Granola {recipe}

A couple months ago we dove head-first into a casein-free diet for Grant. Now we are officially removing gluten as well. That means I am on a mission to find new recipes that my whole family will eat.

Yes, I am one determined mama to find really yummy recipes that will improve the health of my son - and the rest of the family - and allow us to still enjoy food!

Introducing...
In the Kitchen with Karen


I found this quick and easy recipe from here. It took only a few minutes to make and it was very tasty. I had purchased some gluten free oats a week earlier and was excited to use them in this recipe. 

I {heavily} sprinkled the granola over Greek yogurt with fresh peaches while Grant had his with almond yogurt and fresh peaches.

Ingredients:
Makes four ¼ c servings

2 tbsp. creamy peanut butter
2 tbsp. honey
¼ tsp. cinnamon
¼ tsp. vanilla extract
1 c. oats (make sure, if needed, the oats are gluten free)

Directions:
Preheat oven to 325 degrees. Spray cookie sheet with non-stick cooking spray and set aside. Combine peanut butter and honey in a bowl and microwave until peanut butter melts (approximately 20 seconds). Stir. Stir cinnamon and vanilla into peanut butter and honey mixture. Add oats and stir until oats are completely covered in peanut butter mixture. Spread out oat mixture onto prepared cookie sheet and bake for 7 -8 minutes until granola is slightly browned (it took only 6 minutes in my oven). Let cool until granola is crunchy. 

Recipe originally from Peanut Butter Fingers

Wesley was a total fan of the granola as well. :)


Pin It

August 2, 2012

bits and pieces of joy


A summer evening filled with simple fun, family, and laughter...



Jumping and splashing and giggling and flapping with a joyful heart...


Hearing the words "higher, Mommy, higher!" as I push my sons in their swings...


A slow walk to enjoy a companion's company...


A flower offered from the hand of a child... 

...These are the moments that make my most treasured memories.




Yes, the days are filled with many struggles - but there is still so much beauty and joy to be discovered.



Pin It