A view into the life of a family who encountered a different future than expected, but has become all the richer for it.

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Monday, August 31, 2009

Say What?

Today Victoria met with one of her therapists, a "special instructor", to be accurate with her title. Her special instructor teaches Victoria and me sign language that will help facilitate Victoria's speech that will come later on. Her instructor comes every 2 weeks to our home. She will usually ask me how much Victoria is babbling. Victoria does babble, but it comes and goes depending on how much she is stimulated by her environment. As a busy mom it is hard for me to sit directly in front of her all day and "talk" to her. So, I just do the best I can in everyday life and pray that God uses it all to help her along.

I asked her special instructor today when down syndrome babies usually start to say words. I kinda wondered when she might say, "Mamma" or "Daddy." I wasn't quite prepared for the answer she gave me. She told me that it is normally around 3 or 4 years of age. I was shocked and I felt my heart sink. To think I might not be able to hear Victoria say my name for several more years just tore my heart up. Can you imagine?

I have been grieving tonight, to say the least. Grieving and praying. I knew the road of having a special-needs child would be filled with joy and grief, so these feelings are not new to me. I've had a little of both through this journey.

I guess my grief reminds me that I'm human. It reminds me that the success of Victoria's future isn't all up to me. Her life and future are held in the hands of her heavenly Father, God. In moments when I want to cry (and, I have done some of that today), I have to, again, surrender and say, "God, I cannot do this alone. My emotions need to be held secure in Your hands. When my mind cannot wrap itself around what I don't understand, keep me sane. When I think my sweet little girl should be able to do things that others say might not be possible, help me continue to have faith in the One who created her."

If you are in a place of "not understanding" what is happening in your life, just hold on! Hold on with me to the most secure person in the universe ... God! Hold on to a wonderful verse that I cling to so often in my walk of faith:

"You have seen me tossing and turning through the night. You have collected all my tears and preserved them in your bottle! You have recorded every one in your book. The very day I call for help, the tide of battle turns. My enemies flee! This one thing I know: God is for me!" Psalm 56:8,9

Even if Victoria doesn't "talk" to me for several more years, I will still cherish her. I will cherish her smile, her glowing eyes that say so much in themselves alone, her hugs, her open-mouth, slobbery kisses and her little grunts that try to tell me things that I may not understand. God, help me to cherish every moment and to learn that in the times that I might have to cry ... You catch those tears in your bottle and know every one!

Monday, August 17, 2009

Life's Laughter

Have you ever wondered what causes laughter? I mean, why would God create such an interesting thing that we all take pleasure in? I read something recently on http://www.wikipedia.com/ about laughter. I want to share it with you.

"Laughter is Genetic" Robert R. Provine, Ph.D. has spent decades studying laughter. In his interview for WebMD, he indicated "Laughter is a mechanism everyone has; laughter is part of universal human vocabulary. There are thousands of languages, hundreds of thousands of dialects, but everyone speaks laughter in pretty much the same way.” Everyone can laugh. Babies have the ability to laugh before they ever speak. Children who are born blind and deaf still retain the ability to laugh.

Even though I don't understand all the reasons that God created laughter, I sure take joy in it. Today is a day that I appreciated laughter so much. I was able to spend some sweet time with my special-needs daughter, Victoria Jayne, this afternoon after she woke from her nap. She was in such a happy mood. She just laughed and laughed at most every silly thing I did. I cannot describe the joy I felt while watching her laugh. My mind thought back to the days that she was lying limp on a hospital bed after having open-heart surgery at 7 weeks of age. It seemed then that I wouldn't get to enjoy a day like today at that point. But, today, through laughter, God reminded me of His faithfulness. He reminded me that He can take a circumstance that once seemed so grim, such as adjusting to the life of being a special-needs mother, and turn it into pure joy.

What a blessing it was to watch Victoria laugh today. I know God must've been laughing with her! I can't imagine that His heavens were not filled with extra-happiness when her voice rang out in laughter today!
video

Thursday, August 13, 2009

Vitamin Crisis

I guess I knew it was coming.  I mean, Natalie couldn't go too long without putting something up her nose, right!?! 

Here I was getting all three girls in the bed by myself.  Elyssa kept getting out of bed while I was feeding Victoria a bottle.  Natalie was in her crib asking for a vitamin.  I got two vitamins out of the Flinstone bottle and asked Elyssa to eat one and give one to Natalie.  She did just as I asked. 

I was almost done feeding Victoria her bottle when I heard Natalie began to scream.  I thought Elyssa was bothering her.  Elyssa came running into Victoria's bedroom and told me that Natalie needed me right away.  I quickly put Victoria down because Natalie's screams were getting louder.  I began to hear her crying about her vitamin.  I turned her light on thinking she dropped her vitamin in her bed.  I looked around trying to find it in her covers.  Then, I heard her say that her vitamin was in her nose!  Elyssa told me, "Natalie put her vitamin up her nose!" 

Frantically, I grabbed Natalie out of the bed and took her into my bedroom.  I turned on the lamp, grabbed the flashlight, tweezers and nose drops all while Natalie was still screaming lying on my bed waiting for me.  Once I pointed the flashlight at her nose, I could see it.  That vitamin was almost out of grabbing distance, but I thought I could get it with tweezers if Natalie would be really still.  So, while holding the flashlight between my right chin and right shoulder I told Natalie to be really still.  She flinched several times but I tried to explain I wasn't going to hurt her.  I was going to get her vitamin out.  After a few tries, I finally got hold of the vitamin with my tweezers and pulled it out.  Poor Natalie was screaming.  Those Flinstone vitamins are really rough in their texture, so I'm sure it hurt a lot.  I put some nose drops in her nose and hugged her tight.  I said, "Natalie, don't EVER put anything up in your nose again!  It hurts your nose when you do that!  You scared Momma!"  She said, "I scared, too, Momma."  She just kept crying and said she would never do it again. 

Oh ... I pray this time she really means it!

PS - Mark finally got in tonight from his mission trip to London and Bangladesh!  I will see him in a few moments!  I'm excited to have my husband back home!

Wednesday, August 12, 2009

Gecko Adventures

Last night a friend of mine, Donna, spent the night with me. Mark has been out of the country on a mission trip for about 7 days now and Donna had wanted to come spend some time with me and the girls since we were missing Mark and needed something to get our minds off of his absence.
After a fun afternoon of playing, we finally put the girls down for the night.  Then, Donna and I talked for a good bit and enjoyed catching up on each other's lives.  We were both getting tired and decided to get ready for bed.  Donna was lying in the bed watching TV and I decided to check my emails and Facebook.  I went into the office and sat down in the office chair.  I turned on the computer and something caught my eye.  I happened to look up and to the right.  In the top corner of the wall I saw what looked to be a huge light-colored lizard.  I freaked out!  I ran out of the office screaming and told Donna to come look at the critter that was just starring down at me in the office.  She told me it looked like a gecko (the one pictured to the left is NOT the one we found in my house, but I wanted you to see a gecko of similiar size and color).  I had never seen such a creature inside a house in all my life!  I had goose bumps all over and was trying to figure out how in the world we were going to get that sucker out of the house so I could sleep in peace! 

My next-door neighbor, Bob, had just told me the day before if I needed anything at all to give them a call.  Bob and his wife knew Mark was out of the country and wanted me to feel free to call them, even if it was in the middle of the night.  Donna was trying to be brave and thought she would try to get the gecko herself.  I immediately told her, "No way!  I'm calling Bob!"  I had already gotten two brooms from the utility closet and was ready to fend for my life if that yucky thing came a'runnin for me!  I had steaked my place on top of the "fainting couch" (an antique) in our bedroom and  Donna was laughing at what a coward I was being!

I called  Bob and he was happy to come over and help.  Through the course of me screaming several times and  Bob having to chase the gecko around the office a little, he finally managed to capture the reptile.  He took him outside with him and I hope he released him FAR away from my house! 

What a terrifying experience!  That thing was so nasty!  There was no way I could sleep with that little dude being free to roam in my home!  I just kept having horrible thoughts about him crawling on my face or in the girl's beds while we were all sleeping!  He just HAD TO GO and thankfully, Bob, came to our rescue!  I slept much better last night knowing that the house was free of our unwelcome guest!

Saturday, August 8, 2009

Bee My Guest

You are cordially invited to visit Bee My Guest at http://pairofbartletts.typepad.com/a-pair-of-bartletts/2009/08/bee-aware.html on THIS Tuesday!! I will be the guest writer on my friend's (Jennifer Bartlett) blog and you don't want to miss it! I will be sharing my experience of having a baby with Down syndrome and how this has changed my life in so many ways. Bring your tissues with you and let your heart be warmed by the powerful testimony that you will read and hear!

IMPORTANT: After you read my blog on Bee My Guest, leave a comment and you will be registered to win some wonderful prizes! How exciting! So, don't forget to visit and read THIS Tuesday's edition of Bee My Guest!

PS - For those of you wondering, Bait survived his terrible garbage disposal experience! I have been told I should change his name from Bait to Lazarus! I'm contemplating it!

Friday, August 7, 2009

The Misfortune Of A Fish

Today was an unfortunate day for Elyssa's birthday fish, Bait. He had a bit of an adventure that was my fault.

Bait's bowl needed cleaning. The water had gotten quite cloudy and it was time to fix him all up with clean water and rocks. I had put it off because I really get disgusted at the smell of his nasty water when I'm cleaning it all up. Plus, I see little bits of stuff floating in his water that I can only assume are excrements and that totally grosses me out!

This was Elyssa's birthday present from a good friend (I won't name names!), but somehow I have inherited the job of feeding Bait and keeping the bowl clean. By the way, don't you just love the fish's name? Mark planted the suggestion of "Bait" and the girls picked it up. I would've rather the fish had a normal name like Norm or Roger, but I lost out to "Bait." The poor fish already sounds like a goner with a name like that!

I was trying to take the easy way of cleaning Bait's bowl this morning. Instead of taking him out of the bowl, I left him in and would put the bowl under the kitchen sink faucet allowing water to fill up the bowl. I'd pour some water out making sure that Bait didn't fall out of the bowl. I continued doing this over and over and noticed that the water was getting cleaner. All was going well with this process until Bait got a little too close to the edge of the bowl. It was like it all happened in slow motion. Bait poured out of the bowl with the rest of the water and filth and landed directly in the garbage disposal! I screamed out loud! The girls watched the whole thing happen and they were in a panic, too. My next thoughts were, "What do I do now? How do I get Bait out of there? If I cannot get him out or if he dies am I supposed to just grind him up in the garbage disposal?? I couldn't bare the thought of having to do that! So, with a quick reaction, I grabbed some tongs out of my utensil drawer and began to try to "fish" Bait out of the garbage disposal. The poor guy kept flopping around and it was difficult to grab hold of him. Finally, I was able to get him out and plopped him into a glass of water I had poured for him to rest in until his bowl was clean. I breathed a sigh of relief, but noticed that Bait didn't seem quite the same. At this point, I'm not sure that anything happened to Bait. I didn't see him bleeding (I don't know what fish blood looks like!), but he seems traumatized for sure! I wonder why?? I'm not sure if he'll make it or not, but at least he now has a nice clean bowl to either live or die in.

Hopefully, Bait will pull through this terrible experience! I know one thing ... I'll always take him out of his bowl FIRST when cleaning it in the future!!