Monday, November 24, 2014

Three Years Ago

It was on this day in 2011 when Doug and I sat in the pediatrician's office waiting to hear the results of Sarah's most recent MRI which had been a couple weeks earlier. I can remember entering the room and expecting or hoping that we'd be told that the tests showed nothing abnormal. I can also recall the shocked and slightly stunned feeling when he delivered the news to us.
This is what I wrote three years ago:

"Medically speaking, Sarah's "corpus callosum" is slightly thinned.  This means that the connection between the two halves of the brain is not as thick as it should be, therefore causing the delays. In Doug's not so medical terms, he confirmed that Sarah's brain is simply wired differently.  Not wrong or bad, just different. They also found that there is "periventricular white matter" , consistent with "periventricular gliosis", which is likely the cause of her balance issues. All these findings are likely caused by a lack of oxygen to Sarah's brain while I was pregnant with her.  The doctor told us that his diagnosis for Sarah is a mild form of Cerebral Palsy."  

Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). Cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities.

CP is usually caused by brain damage that occurs before or during a child's birth, or during the first 3 to 5 years of a child's life. There is no cure for CP, but treatment, therapy, and special equipment can help a child who is living with the condition.  Cerebral palsy affects muscle control and coordination, so even simple movements like standing still are difficult. Other vital functions that also involve motor skills and muscles such as breathing, bladder and bowel control, eating, and learning may also be affected when a child has CP. Cerebral palsy does not get worse over time.

So, back to present day. Where are we now and what have we learned? Over time, the shock wore off. I was reminded by family and friends that the label doesn't change who Sarah is, nor does it define her. We went through two and a half years in the Early Intervention Program until Sarah turned five. They were memorable times and I learned a lot about how Sarah was and is developing. 

Sarah experiences most of the symptoms that CP displays. Her learning is slower than others which is also due to the severe microcephaly, but that's another post in itself. She has a very unbalanced diet which is high in carbohydrates and low in meats and veggies. It's not for a lack of effort on my part that's for sure. Her muscle tone, movements and motor skills are also compromised because of the cerebral palsy. 

I am thankful that she knows no different though. What Sarah lacks in many skills, she excels in others. She can love in ways that even I can't comprehend. She is loveable, charming and a delight to be around. Her laugh is contagious and she knows how to make anyone smile. She loves going to church and the people there have become like her second family. She is so eager to play outside with her friend Mr. Bruce and she even brought her snow clothes to church on Sunday so he could take her out. She loves people deeply and many of them have a special place in her heart.

As for me, there are occasionally moments and even days where I find myself hurting inside again. It's tough to know that she likely will not ever meet her peers' developmental level and always be behind. In fact, that gap will continue to get larger as time goes on. Watching her alongside other kids her age or even younger is hard at times. 

But, I am so thankful for the encouragement of friends and the love and support they provide. It's been quite the journey so far and I look forward to seeing where we continue to go.

Friday, November 14, 2014

To My Older Three Kids

Dear Children of Mine,

I don't know if you will read this today, tomorrow or ever but I wanted to share some thoughts with you about Sarah.

~ I want you to know that even though I'm the mom, I understand what it's like to have someone in our family who has different needs than you. When others look at Sarah because she doesn't answer them. Or when they ask "what's wrong with her?" and you don't know the answer. Because to you and to me, she is just Sarah and we know no different.

~ I know it hurts to have someone laugh at Sarah when she does things differently. And I think it's okay to feel a little embarrassed once in a while. My heart hurts for you when that happens and I pray for God's peace to surround you in those moments.

~ I understand that it's hard to explain that although she's six and a half years old, Sarah behaves and speaks like she's only three. Yeah, that's tough too.

~ I also want you to know how much I appreciate you and your unconditional love for her. She's pretty lucky to be the youngest of four siblings and have you all wrapped around her little fingers.

~ She adores you three. You are the light in her day, the rescuers, the huggers, the cuddlers, the ones she looks up to. I don't think we will ever tire of her asking for a "hug-uppy" and feel her tiny arms wrap around our neck in complete love.

~ There is something wonderful about having a little sister who is staying smaller just a little bit longer than others. It makes it easier to pull her into our laps for those "cungles" that she lives for.

 Throwback to fall 2010

To Joshua: You are the big brother. Her knight in shining armour. She looks to you to wrestle, climb over and play with. And at the same time, snuggle under a blanket watching a movie. Cherish those moments with her.

To Andrea: Sarah's elation when you walk in the door from work is something that delights me and fills my heart with joy. The way she exclaims "You came back!" as though you'd been gone for days. You are her hero. Enjoy those sweet moments when she wakes you up and wants to climb into your bed for a snuggle.

To Arianna: You are the one that she needs at night. She waits sleepily for you to come to bed and then snuggle with her, giving her the feeling of security into the night. She looks for you when you aren't here and is so happy when you're around. I love watching your relationship with her grow. I know it's tough at times because she can't play with you the way you'd like a little sister to, but I can't tell you how much I appreciate when you play with her and her toys. I know how special you are to her.

Thank you three for being the best brother and sisters that Sarah could ask for. She is so incredibly blessed to have you all to love her for who she is. Joshua, Andrea and Arianna, you are each so amazing and I love you very much.

Fall 2014

Wednesday, November 5, 2014

Sensory Bins

The other day I came to the re-realization that there are very few supports for Sarah and myself since I chose to homeschool her as a special needs student. I began to do some looking online at something called "sensory bins" which is a bin that is filled with pretty much anything the imagination can conjure.

So... I bought an e-book that talks about what to use as the base:

  1. rice (colored or not)
  2. pasta (cooked or dry)
  3. popcorn kernels
  4. oats
  5. flour
  6. cloud dough
  7. dried beans
  8. shredded paper or Easter basket hay
  9. water
  10. sand
  11. dirt
  12. flour
  13. cereal
  14. marbles
  15. water beads
  16. cotton balls
  17. shaving cream
Really, the list is endless... My first bin that I created was with rice. Dyed red. This rice bin kept Sarah occupied for 4.5 hours! Once the base is determined, you can add whatever you'd like to engage their minds. A lot of the ones you'll find online are very thematic and I may go that way later but for now, I'm doing Sarah's purely for the play value.

Then I found a recipe for cloud dough which is 1/4 cup of vegetable (or baby) oil and 2 cups of flour. I didn't have an oil based food dye so mine didn't color. But that's on my shopping list! :) 

Even Arianna got in on the fun!

Then I began to dye popcorn!

And chickpeas!!

It's only been two days but so far it's kept her busy for hours! I can't wait to use these super colorful items and expand on Sarah's play time! 

(ALL methods of coloring were found online, none of them were my own idea)


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