Yesterday, one of my cousins and closest friends, threw a question at me that really got me thinking. She said, "As
parents we fear what others will think or how they will treat our child
but should we let that stop us from letting our child live to the
fullest?" My answer is, "NO! We should not let fear ever control our lives." I let it control my life every single day, though. A lot of that fear comes for past hurt. Hurt from family and those I considered friends. Every decision I make for my children is based on my fear of having to explain my decision and if others will understand the choices I make.
I have been asked why I want Jennifer to try things that "she can't handle." How do you know Jennifer can't handle it? Did you give her the chance to try? Are you afraid that she won't handle it the way other kids do or that you may have to work a little harder teaching her?
I have been told that Jennifer "won't listen." Did you really try to understand why she wouldn't do what you asked? Did you remember that this is the very first time she's been with you without her parents? Did you, as the adult, establish that you were the authority, without being threatening?
Nick and I have heard that we "don't come around anymore." Would you bring your children around those that treat them as if they aren't important? Would you want your children to be put in situations where expectations for others were less than those for them?
I am not going to have anyone in my family mistreated. The fact that others choose to think that we can just have ourselves conform to their expectations and schedules is not realistic. Yes, most of our family can go with the flow, but Jennifer cannot. She needs preparation and structure. If she's put into unfamiliar situations or unexpectedly taken off schedule, her reaction is not always going to be "typical." She may do fine some days. Yet, other days, she may go pure crazy. It's not fun for us to deal with, but we accept her where she is. We acknowledge that she's different and take time to explain things to her.
I cannot and will not any longer allow my family to walk into situations that are going to be physically, mentally and emotionally dangerous. I have made choices, in the past, to protect others feelings over protecting my family's well being. I know that sounds like I've put us in dangerous circumstances, but I haven't.
I have, however, chosen to take Jennifer into overstimulating, stressful situations when I should have just said no. I have chosen to spare others feeling and not put myself through the torture of having to hear how our family never shows up. I have chosen to neglect alone time with my oldest son, Jonathan, because I don't trust ANYONE to take care of his sister. I have lived in fear that she won't be watched closely enough, that her caregiver may not understand what she's said or why she's chosen to "overreact" to something we would consider minute. I have lived afraid for over 9 years!
With the support of my wonderful husband, oldest son, parents and other close family and friends, I am no longer choosing to worry about other people. I don't mean to sound harsh, but I'm tired. Fear is exhausting! Fear is controlling! Fear is dangerous!
So, moving forward, if I have to tell someone "no", I am not going to feel responsible for their feelings or their reactions. I cannot afford to allow my fears to dictate my decisions. I can and will do what's best for my entire family at all times.
Wednesday, July 31, 2013
Tuesday, July 30, 2013
It's Been a While!
It's been more than a year since my last post. The posts stopped for many reasons.
At first, I got caught up in my many other commitments. Later, I began to shy away from my good intentions due to fear of how others may not accept our family's every day realities. That faded into the excitement of expecting my third child. Then, came a newborn. Now, I have NO excuses.
I'm reminding myself everyday that God gave me each of my children for a very special reason. I've always told myself that I would take what Satan intended for evil and make it used to glorify God. Although, I haven't been living my life that way. Now is my chance to change that!
Yes, this blog is titled to lead people here that are looking for hope when told they are going to give or have given birth to a child with special needs. That doesn't mean that my daughter with special needs is my only focus. But I cannot deny that my Jennifer throws a very special set of dynamics into our home.
In my next post, you'll find some very raw answers on what led me to shy away from my posts and how, through some unexpected miracles, God is showing me that my fear is not helping my family.
Stay tuned!
Wednesday, March 21, 2012
World Down Syndrome Awareness Day
Why today? Today marks the 21st day of the 3rd month of the year. A person that has Down syndrome, also known as Trisomy 21, has 3 copies of their 21st chromosome. So the date chosen is 3/21.
9 years ago, I didn't know that this day would mean anything special to me. Now, I know that it's a day to spread awareness. I'm not interested in explaining to the world how Down syndrome makes my little girl different. Rather, I'd just like for those around her to know how she's like them.
Jennifer's a rambunctious 8 year old little girl that loves her family and friends. She's very blessed to have a huge family and lots of friends that love her too!
Her favorite thing to do is read. Yes, read! She can and does read just like you and me! In fact, she probably reads more for pleasure than we do on a typical day. For Jennifer, reading is a place she can go to do anything or be anything her heart desires.
Like most little girls her age, she loves to sing and dance. You can guarantee that if she's heard a song once, that second time she'll be singing along. She sings in the car. She sings when watching TV. She sings in the shower. There are times, she can be found singing even when she's on the potty.
Jennifer adores babies. She asks me almost everyday if I'm going to have a baby. She ays that she wants a baby brother. The gender choice is likely due to the fact that she LOVES her big brother, Jonathan, so much.
If, she had a choice, she would be raised on a farm with more animals than you could imagine. She loves any animal! Going to my parents' house is special to her because she gets to play with their chickens.
I could go on, but here are just a few things about my sweet girl.
HAPPY WORLD DOWN SYNDROME AWARENESS DAY!
9 years ago, I didn't know that this day would mean anything special to me. Now, I know that it's a day to spread awareness. I'm not interested in explaining to the world how Down syndrome makes my little girl different. Rather, I'd just like for those around her to know how she's like them.
Jennifer's a rambunctious 8 year old little girl that loves her family and friends. She's very blessed to have a huge family and lots of friends that love her too!
Her favorite thing to do is read. Yes, read! She can and does read just like you and me! In fact, she probably reads more for pleasure than we do on a typical day. For Jennifer, reading is a place she can go to do anything or be anything her heart desires.
Like most little girls her age, she loves to sing and dance. You can guarantee that if she's heard a song once, that second time she'll be singing along. She sings in the car. She sings when watching TV. She sings in the shower. There are times, she can be found singing even when she's on the potty.
Jennifer adores babies. She asks me almost everyday if I'm going to have a baby. She ays that she wants a baby brother. The gender choice is likely due to the fact that she LOVES her big brother, Jonathan, so much.
If, she had a choice, she would be raised on a farm with more animals than you could imagine. She loves any animal! Going to my parents' house is special to her because she gets to play with their chickens.
I could go on, but here are just a few things about my sweet girl.
HAPPY WORLD DOWN SYNDROME AWARENESS DAY!
Thursday, March 1, 2012
Rub-a-dub-dub
Jennifer is showering pretty much independently now.
I'd tried putting her in the shower once before, but wasn't successful in getting much accomplished independently. At that point, I took a step back and worked more on teaching Jennifer how to wash her hair, making sure it is really wet and making sure that she shampoos it all. I've also worked on her washing her entire body. In doing this, we name each body part as she washes. Almost like a check list.
Sunday night, we tried showering again. This time I only needed to start her water, put shampoo on her head, put body wash on her washrag and turn the water off. The next time, she was already turning off the water on her own. She is so proud and now loves to shower by herself! She's even been singing about each body part as she washes. :-) At least, I know that she's washing everything...even her arm pits!
I'd tried putting her in the shower once before, but wasn't successful in getting much accomplished independently. At that point, I took a step back and worked more on teaching Jennifer how to wash her hair, making sure it is really wet and making sure that she shampoos it all. I've also worked on her washing her entire body. In doing this, we name each body part as she washes. Almost like a check list.
Sunday night, we tried showering again. This time I only needed to start her water, put shampoo on her head, put body wash on her washrag and turn the water off. The next time, she was already turning off the water on her own. She is so proud and now loves to shower by herself! She's even been singing about each body part as she washes. :-) At least, I know that she's washing everything...even her arm pits!
Where are my keys?!?!?!?!
"Where are my keys?" were the words I asked Jennifer this morning, as we began the process of trying to get out of the house for school/work.
I had looked on the hook by the front door and triple checked my purse. I had also looked around the kitchen for places I might have dropped my house keys yesterday afternoon. No luck!
The good news...Jennifer knew exactly where the keys were. Yay! The bad news...The keys were under the house and it was storming outside! I'm not kidding.
So, in the pouring rain, I headed outside with an umbrella and flash light. I went to our access door in the backyard. There they were!! My keys were laying in Jennifer's new favorite place to explore.
She doesn't EVER actually go under the house. Luckily, she's afraid of the dark. She recently discovered the door and now wants to use it as her new hiding place.
We have a large rock in front of the door. One I thought was too heavy for her to move. WRONG! Time to add another lock to our house.
More good news....Jennifer remembered that she had left them there yesterday afternoon. We did a lot of fun things after school yesterday, attempting to get her out of the funk she was in. (She spent a good bit of the day bursting into tears for no apparent reason.) Typically, Jennifer would not have remembered something out of routine from the day before.
So, although I had to search for my keys on the way out the door for work... under the house...during a thunder storm and I ended up getting to work later than I wanted, my Jennifer was able to recall something she had only done one time and from more than 12 hours earlier! Woo hoo!
One of my favorite things about Jennifer is the never ending supply of surprises and first times. Each day brings something new and the excitement is never ending!
I had looked on the hook by the front door and triple checked my purse. I had also looked around the kitchen for places I might have dropped my house keys yesterday afternoon. No luck!
The good news...Jennifer knew exactly where the keys were. Yay! The bad news...The keys were under the house and it was storming outside! I'm not kidding.
So, in the pouring rain, I headed outside with an umbrella and flash light. I went to our access door in the backyard. There they were!! My keys were laying in Jennifer's new favorite place to explore.
She doesn't EVER actually go under the house. Luckily, she's afraid of the dark. She recently discovered the door and now wants to use it as her new hiding place.
We have a large rock in front of the door. One I thought was too heavy for her to move. WRONG! Time to add another lock to our house.
More good news....Jennifer remembered that she had left them there yesterday afternoon. We did a lot of fun things after school yesterday, attempting to get her out of the funk she was in. (She spent a good bit of the day bursting into tears for no apparent reason.) Typically, Jennifer would not have remembered something out of routine from the day before.
So, although I had to search for my keys on the way out the door for work... under the house...during a thunder storm and I ended up getting to work later than I wanted, my Jennifer was able to recall something she had only done one time and from more than 12 hours earlier! Woo hoo!
One of my favorite things about Jennifer is the never ending supply of surprises and first times. Each day brings something new and the excitement is never ending!
Monday, February 6, 2012
Frogggggyyyyy!!!!
Many years ago, I was introduced to Froggy by the kids' Mema when she began reading these books, by Jonathan London, to my son. Mema, of course, also introduced Jennifer to Froggy when she was much younger.
Tonight, Jennifer and I baked strawberry cupcakes for the office staff at school. We just had to follow that up with Froggy Bakes a Cake as her bedtime story.
At 8 and 13, my kids still appreciate a good Froggy book. These books are not only fun, but part of our family story. Thank you Mema for bringing Froggy into our lives!
Tonight, Jennifer and I baked strawberry cupcakes for the office staff at school. We just had to follow that up with Froggy Bakes a Cake as her bedtime story.
At 8 and 13, my kids still appreciate a good Froggy book. These books are not only fun, but part of our family story. Thank you Mema for bringing Froggy into our lives!
The Reading Nook
She LOVES it and was quick to kick us out of her room so that she could read in her nook by herself. I did get a later invite to read one book to her, but that's it. She's been enjoying the time in her quiet space to relax and read to her stuffed animals.
I'm so glad to be able to create this area for her. Anything that will comfort her and promote her love for reading at the same time is awesome in my book!
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