31 for 21: Contagious!?!

Thanks to my friend RK for sharing this!  (Click on her name to visit her blog and see her cute little Braska!)  It was too good not to pass on - and every bit of it so very true! 

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Newsflash: DS is contagious!! Keep reading!!

Down syndrome is a genetic disorder characterized by a triplication of the genetic material on the 21st chromosome. This trisomy occurs with the first division of the developing zygote, as a result there is extra genetic material present in every cell of the individual. Recently, science has discovered that this cellular abnormality is highly contagious. As result, family members (and even friends) of individuals with Down syndrome often find themselves exhibiting dramatic changes due to this "something extra" permeating their bodies at the cellular level. These changes manifest themselves in a number of ways. Something extra in the visual cortex results in parents who view the world differently. In addition to seeing things in an entirely new light, these parents also report having an increased ability to focus on what is important. Spontaneous appearance of tears of joy have also been confirmed. The section of the brain used in logical thought undergoes dramatic changes.

Parents suddenly find themselves able to comprehend and discuss complex medical procedures. The ability to decipher long strings of acronyms appears almost immediately and it is not uncommon for affected parents of newborns to be able to differentiate between ASD, VSD and PDA. Familiarity with G-tubes, picc lines and the NICU is another side effect.

Over time, the entire nervous system is transformed, enabling parents to perform tasks previously thought impossible. These changes result in individuals finding the nerve to advocate before large crowds, speak to classrooms of medical students and educate the population at large about issues they are passionate about. These changes are closely tied in to dysfunctions in the verbal abilities, which makes it virtually impossible for parents to bite their tongue. Often, individuals who previously considered themselves reserved will find themselves outspoken and effective communicators.

The pulmonary system is altered to a dramatic extent. Parents report having their breath taken away at the slightest prompting. The cardiovascular system develops similar vulnerabilities and reports of hearts pounding loudly and swelling unexpectedly are not uncommon. One mother reported that her heart skipped a beat when her son smiled at her for the first time. The extremities are also altered. Arms reach out to strangers for support, and in turn, hands comfort and nurture those in need. Legs strengthen and balance improves, allowing parents to stand firm in their convictions and walk without faltering, even when shouldering a heavy load. Scientists are baffled by the widespread scope of these symptoms. Equally perplexing is the response of those afflicted. Parents readily acknowledge fundamental changes in their being, however, almost universally declare a preference for their new, altered level of functioning. "I wouldn't change a thing" is a common refrain. Apparently, the presence of a little "something extra" enhances the lives of individuals fortunate enough to be infected.

Wendy Holden

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Blessings,

Leslie

Prayer request for our sweet Daniel

Hi friends,

Would you join me in praying for our sweet 4yo boy. We had what I thought was going to be a routine visit to the eye doctor today. The appts with Rebecca and Joshua went smoothly. Joshua's vision has improved with the continous patching he has been doing!  The appt with Daniel took longer.

We talked and I had shared some of what had been going on with Daniel regarding sensory issues.  I wasn't sure if she knew what to make of that - but then again lots of people don't.  She even commented that my last two children were giving me a run for my money. 

As the appt continued, she just kept looking and looking into his eyes. I thought it was just because he was wiggly (he was) and maybe not cooperating as best he could. I didn't realize that she was looking for something specific and having a hard time finding it.

When she finished the exam she told me that she could not find the outline (may not be remembering the words exactly right) of his optic nerve in one eye because it was swollen. She said it had been difficult at times in the past, but that she had always found it. Well, this time she couldn't. As I sat listening to her, I really had no idea what she was talking about or what this could mean.

Her next words though sent a chill through my body. She wants Daniel to have an MRI to see if there is a mass or ??? causing him to have a swollen optical nerve. As her words sank in, I could feel tears coming to my eyes.

We talked about details - when would it be done and where (Duke). What the process entails (40 min scan of his brain inside one of those tubes) and would he be sedated (yes!). As I worked on details, it was easy to let go of the idea that something might be wrong in my little boy's brain. She tried to assure me that she didn't think that there was anything, but that we needed to do this to rule it out.

I didn't ask a lot of questions about what this could mean. A "mass"? I don't know. I wasn't sure I wanted to go there. At times, the details can just overwhelm me and I'm trying to just be reassured by her thoughts that everything is probably fine. 

Daniel also has a malformation of his skull (it has a name ... cranio ... something). His ped told me when he was a baby that we could have it repaired, but that it was purely cosmetic and wouldn't affect him in any way. I took his word then and didn't ask for any further testing. Now I'm wondering if I should have done more.

I'm trying not to think about it because when I do it's scary. One more opportunity for me to learn to trust. To be willing to put my child into God's capable and loving hands. He is there anyway - I just need to trust. I know Gods love and I'm thankful for that.

We have scheduled an MRI for the 27th at 2pm. I would love your prayers - for peace for us while we wait, for a smooth procedure and clear results. Obviously too we are praying that there is nothing wrong with Daniel.

Thank you dear friends for standing by me once again.

Blessings,

Leslie

A short entry for 31 for 21

Well, I was hoping to post yesterday about our fabulous Buddy Walk!  I will post soon - and with pictures.  We had a fabulous day and I'm so glad we were able to be there!

I wanted to share a blog entry with you.  It is a powerful story of the influence of a little girl on a woman's life.  There is so much to this story - deep sadness that breaks my heart.  And hope that encourages too.

Click on the link below to read Linda's story.

Gather My Children

Reading this story encourages me to pray fervently and look for ways to help children find homes with a loving family.  I'll be sharing more about this in the future - and ways you can help too if you are also led.

I'm so very thankful that our Eliana was born at a time when bringing her home was encouraged.  Our lives are so much richer for having her in it.  I'm so very glad to have her in my family.  God has blessed us abundantly!

Blessings,

Leslie

Raffle - 31 for 21

Hi Friends,

I wanted to let you know about a raffle on my friend Stephanie's blog.  She is doing this to help raise money for Oleg, one of the children at Reece's Rainbow (the site I mentioned yesterday).  One of the biggest factors keeping these children from being adopted is the high cost of adoption.  Having a "grant" that goes toward the adoption helps so very much!

She is raffling a very cute, custom-designed handbag.  Check it out!!!

My heart is heavy for these precious children.  I'm praying that they would find homes, that they would receive the care that they need and that God would touch the hearts of those that he wants to bring them home.  Please check out Stephanie's site (just click on her name in the first paragraph - and join me in praying.

"Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress." (James 1:27)

Blessings,

Leslie

31 for 21

Wondering about this title?  I just recently read about this - 31 for 21.  It's something in support of Down Syndrome Awareness Month which is October.  Many bloggers are blogging each day in the month (that's the 31) about Down syndrome (that's the 21 for the extra 21st chromosome).  I think it's a great idea.

I'm not sure what I'd write about for 31 days.  I guess that's one advantage to starting a little late - there are only 21 days left in the month now.  I'm going to borrow an idea from a friend.  If  you have a question about Down syndrome, my experience or just something you've wondered but haven't asked, please feel free to ask.  You can email me or just post a question in the comments and I'll blog an answer.  (I'm really wondering if anyone will ask a question!  LOL)

I wanted to share about an organization that I think is pretty special.  Reece's Rainbow.  It's an organization dedicated to helping people adopt children from foreign countries with Down syndrome.  You can visit the site and see many of the beautiful waiting children.  There is a lot of information there too about adoption, sponsoring a child and helping families to bring a child home.  You can click on the link above (in the name of the organization which is underlined) or go to the button on the right hand side of my blog. 

We sponsored a child last Christmas in lieu of Christmas gifts and are looking forward to doing that again this year.  We've also talked about other things we, as a family, can do to help this organization.  These children are heavy on my heart and I pray for them often.  Will you join me?

Blessings,

Leslie

Peace

Thank you friends for praying for me.  Thank you also for the notes I received.  I wanted to post a small follow-up. 

Yesterday went pretty well.  I spent most of the day just being with my children.  We had one therapy appointment at home and spent most of the rest of the day doing schooling.  In the evening I took the 5 youngest children to a church program while Roger and Christopher were at football. 

I was amazed at the peace I felt throughout the day.  I truly expected less.  Why am I surprised when God blesses me?  I prayed to start the day and on and off through out the day.  I asked for one small thing - something I just didn't want to deal with - and God was so gracious to answer that  prayer.  It was a reminder to me that He does love me and cares for the details.  (Not to say that if this prayer hadn't been answered that I would have felt any differently, kwim?) 

Our devotion was on Psalm 23.  I felt like God wanted me to hear that again.  He is my shepherd.  I shall not want.  He leads me.  He restores my soul.  Thank you Father!

I am thankful for this little child.  I am thankful for the opportunity to have carried and loved this little one if only for a short time.  I do believe that this child - just like every other child - is a blessing. 

Thank you friends for loving me.

With love,

Leslie

Praying today for those facing loss

Dear friends,

Would you join me in praying for those facing loss?  I know that includes so many of us - in many different situations.

This in on my heart - though I've debated posting it at all.  It seems a little selfish to ask as it isn't a huge or urgent request.  I've been praying and trying to find where God wants me in the midst of some of my own pain.  I want to learn.  I want to walk the path that He has called me to - and to do it with joy and contentment.  Sometimes its hard.

Today (Oct 7th) was the due date of our little that was born into heaven.  It's been a hard loss for me for a number of reasons.  Though I only carried this little one here for about 10 weeks, I still carry this sweet child in my heart.  I know that there are many others here who have faced this loss and other loss related to children.  Many far worse.  Tonight I was working on a quilt square for a gal that has lost her son.  It was an opportunity to pray for this precious family facing a loss that I can't even imagine.

I'm feeling more at peace, though I still miss this baby.  I've been praying.  I want to be in God's will and not get stuck in feeling sad or hopeless or envious.  I know beyond a shadow of a doubt that God loves me and is working things out for good.  I know that doesn't mean a life without pain and heartache. 

As I've been praying today, my heart has been turned to the many people that are hurting, grieving.  I know so many that have faced such great heartache.  I'm praying today for those who have experienced loss - that you would know beyond a shadow of a doubt that you are loved so deeply by a loving Father.

A friend reminded me of the truths in Psalm 23.  Some of the things that really resonated with my heart are that the Lord is my shepherd, I shall not want.  He does fully meet my needs and I'm thankful for that.  He restoreth my soul.  This is a sweet promise.  Thank you Lord!

Please pray with me.

Blessings,

Leslie

September Catch-up Post

Just wanted to combine some of the things that have been going on around here or I'll never get caught up.  lol  Catching up seems like something I'm trying to do in so many areas of my life.  I feel like my head is flying in a million directions - and yet I do want to simplify.  It must not seem like it, though much of our business is not my choice.  I am thankful for the opportunities we have and seek to make the most of them.  Here's a look at our past month (with the exception of one more birthday that will get it's own post, along with a birthday party).

Sports.  Christopher is playing football.  Contact.  *sigh*  It's not the sport that I thought one of my children would be playing, but he really enjoys it!  It's been fun seeing his interest in the sport both on and off of the field.  I'm learning a lot too.  He has been working hard and it shows.  He is number 22.

It's been hard to get good action shots where you can tell who is who in the photos. 

Eliana getting some help from Isaiah as they explore the park.

Rebecca is playing soccer.  She has been doing this for many years now (since she was 4).  We debated joining a more competitive league, but the time commitment (and driving distances) was just too much for now.  She has remained in a city league.  She is enjoying the game and it's fun to watch her play.

Science.  We do a weekly science lab with friends.  Christopher and his friend Dillon have been doing science labs for years now - this is their 4th.  They are doing Chemistry this year.  This wasn't my strong suit in school, but Christopher likes science and thankfully hasn't needed too much of my help.  Honestly trying to figure out those formulas - yikes!  I can see why I was not a science major!

Rebecca has started a general science course with her friend Hanna.  She wasn't sure she was going to like it - in fact, she didn't want to do it.  She reluctantly went into the year, but after a couple of weeks has found that it is a lot of fun!  I credit some of that to the course and the labwork.  We are using Rainbow Science.

The hands-on lab experiments really make the learning fun - and it helps you to understand more clearly the concepts being explained.  Rebecca is learning about "force". 

Elections.  We have started a study on the elections.  We are using a combination of things - websites, books and a lapbook study.  When we decided on this topic of study months ago, there was no way to know just how interesting it was going to get!  My oldest two have read/watched the debates and many other items of interest.  We also enjoyed the game Hail to the Chief with our friends.

One of the projects suggested on a website was to hold a primary or caucus.  Christopher had planned to do this for dessert one night, but some early snacking (of the desserts!) interupted his plans.  Rebecca chose to have a primary to determine breakfast.  She set up a voting booth (in the bathroom) along with the ballots and the choices.

She helped make a grocery list and then the following morning cooked the winning choice.  (It was a surprise win as she didn't announce it until it was ready to eat.)  The following morning she cooked the second runner-up as it was a close race.  :-)  It was a treat for all of us!

Learner's Permit.  After looking for - and not finding - one of the documents needed to get the permit, we started the process of replacing it.  Waiting and waiting - and then finally success!  Yes, we have another driver at our house!  :-)  Thankfully the permit doesn't affect the insurance rates.  Yikes!

We celebrated with a plate of doughnuts - his choice.  I did put a car on top for fun. 

Little Mended Hearts Picnic - This is an annual event sponsored by the Triangle group.  We went last year and were happy to be invited back again this year.  The event is fun for all of us.  It's held at a nearby park and is attended by some of the Duke cardiology staff as well as families (like us). 

There were firefighters there as well as Sparky the firedog.  The boys enjoyed this!  Below, Joshua is with Sparky and Isaiah is in the firetruck.

There was also a face painter who does amazing work (see Rebecca's face) and a man blowing up balloons.  Check out Daniel's fun hat!

We ate a great lunch and enjoyed music throughout the event.  Eliana especially enjoyed the music.

Rebecca was able to sell more of her bracelets.  I need to update our numbers at some point.  I'm not sure where she is at this point.  I know it's over $7000 total though.

That's all for now.  More later.  Hope you've enjoyed the pictures!

Blessings,

Leslie

Beach - Retropost

We went to the beach the second week in September.  We debated about going as this was the time that several hurricanes were forming and we didn't want to be on the coast in the midst of any of that weather.  We did however want to go and spend time with our friends that have moved to VA.  We did this last year and looked forward to doing it again.

We were blessed to have beautiful weather all week!  It was overcast on some days, but that can be a nice thing at the beach.

We arrived shortly after a storm and found that many things had washed up on the beach.  We saw quite a few sea urchins.  

We also saw sunglasses and even a live starfish.  Surprisingly, no  jellyfish though.  Isaiah found a really large crab which we tried to get a photo of - but it was blurry due to being partly in the water.  The children spent a lot of time hunting for shells and found some beautiful ones.  Daniel loves to find shells and has learned the names of the ones that he finds most often - auger and olive.  Rebecca even found a shark's tooth, lightning whelk and a dried urchin shell.

We spent one day down at our friend's pool.  There was a large slide, and fountains in the pool.  It was a fun day.

This is Joshua coming down the slide.

Mostly, we just hung out on the beach.  We like to build sandcastles, play in the water, play football and hunt for shells.  Oh, and walk down the beach.  One of our favorite spots in where the ocean comes in to form a river.  It's a mild spot in terms of the tide and a great place for the younger ones to play.  It's also been a great spot for finding shells. 

Doesn't she just look pleased with herself?

Rebecca is buried up to her knees if you are wondering about her height compared to Christopher.  lol

This is taken in the "river" - Isaiah giving Eliana a ride. 

I love pictures from the back - there is just something so sweet about them.  This is Daniel, my little shell collector.

Love his beautiful smile!

Eliana loved it all - the sand, the water, the freedom.  We had a wonderful week!  I'm thankful we had this time to spend together as a family.  We are truly blessed in so many ways.

Blessings,

Leslie

Plans for Keepers of the Faith

I've tried starting a blog about our Keepers Group.  We'll see how that goes.  I thought it might be helpful for those just wanting that information.  I'm not sure if I'll still post about it here or not?  Any thoughts?  Here's a link to the other blog and the post I just put up there as well. 

Keepers Blog

We've made our plans for the upcoming year.  For our group we just meet once per month as our busy (and conflicting) schedules just don't permit meeting more often.  Here's what we have planned.

Sept - Herbs.  We'll be planting and learning about herbs.

Oct - Card making.  I'll be teaching this one and am looking forward to it.  Since it isn't one of the activities in the manual, I'll be coming up with my own requirements.  I'm hoping that the timing will be good in allowing the girls to make cards to send or to give for Christmas.

Nov - Pie-baking.  Yum!  Just in time for the holidays!  We're hoping too that this will be something the girls want to practice on and bring to future meetings to share.

Dec - Part 2 of herbs.  Taking the herbs we've grown and learning how to use them - in cooking, sachets and more.

Jan - Storytelling.  Learning more about the art of storytelling and how to put it into practice by telling a variety of stories to both family and friends.  We'll so some sharing/ storytelling at future meetings.

Feb -  Dollmaking,  Learning how to paint and embroider a face.  Learning how to make jointed legs/arms.  Learning how to make different types of hair.

Mar - Part 2 of dollmaking.  The girls will have chosen the specifics of their doll and will start making it.

Apr & May - We are holding open for a couple of options.  Either adding another class or recreational activity (I'm lobbying for badmitton) or finishing up projects we've already started.

We are looking forward to a fun year!

Blessings,

Leslie