A Day of Ups and Downs

Today was a day that I hadn't really thought about as it approached - more medical appointments.  Surprisingly, ALL of our therapy appointments (4) this week have been cancelled.  It is probably a good thing since we have 3 eye appointments and 5 dental appointments.  The therapies would have been M and W and the medical appointments on T and Th - sound like a fun week for anyone?  LOL

Today was eye appointment day for Christopher, Isaiah and Eliana.  Christopher has been seen by this doctor since he was 4.  He had amblyopia and strabismus.  He needed patching, but no surgery.  At this point, it's all easy.  He wears contacts, takes care of everything himself and only has to be seen once per year.

Isaiah is young, so he is seen more often.  I didn't realize (until I started taking my children to be seen) that children's eyes are growing until they are about 8 or 9 years of age.  During these years, you can make changes to the eyes to improve vision - not just improving it with glasses, but actually improving the eye.  I'm a strong proponent of early eye screening for children for this reason. 

Well, today was a day for getting drops - for ALL three.  *sigh*  This is not a fun thing in case you haven't experienced it.  I'll just say that I had to physically hold and restrain my two youngest while they cried and drops were put in.  :-( 

Isaiah's eyes are improving!  He didn't like the way the new lens looked though, so for the time being the dr is leaving his prescription as is.  That's fine with me.  It won't harm him in any way.  He loves his glasses.

Eliana was the last to be seen.  I've been praying over her eyes for so long.  Even before she was born, I was praying for her eyes.  For those that know us in real life - or have seen pictures - you know that ALL 5 of our children have had vision problems.  Ironically, neither Roger or I do.  The boys have similar problems.  Rebecca's was mild and she wore glasses for a few years.  She doesn't need them now.  I have been hoping and praying that whatever the boys have was somehow tagged onto the boy gene and that Eliana would be more like Rebecca.  I know though that children with Down syndrome have a higher incidence of vision problems.

When I was talking with her doctor, I told her that I just wanted to hear that Eliana doesn't need glasses.  At her last appointment 6 months ago, she told me that Eliana has an astigmatism - not bad though.  Well, it's gotten worse.  This affects the shape of the eye - and obviously her vision.  I'm tearing up even as I type this - Eliana is going to need glasses.  I know that this isn't the worst thing in the world - far from it.  I've had this reaction with all six of my children.  I just didn't want any of them to have this problem.  I am very thankful that they each have the blessing of corrected vision with glasses though!!!

I've seen with a couple of the boys that some of the problems can't be fixed.  They get much, much better, but still not 20/20.  I know the difficulties of having glasses.  (I can't even tell you how many repairs we have had over the years!)  I think (and hope I'm wrong) that it will be even more of a challenge for Eliana to learn to wear them.  For that reason, we've decided to wait a little longer before fitting her. 

Additionally, her doctor told me that she is seeing some abnormalities in her optic nerve.  She thinks that she will be able to see "adequately" though and that it shouldn't be a problem.  Some things will just remain unknown for now.  The word "abnormality" just isn't a fun word to hear, kwim?

My precious Eliana has faced so many obstacles in her short little life.  As a mom, I just want to take them away - all of them or even any of them.  I had so hoped that she would not have to deal with this one.  Why does this make me cry?  (I cry far to easily these days - even at sappy movies!)  I just want to have her sweet little face uncovered.  I don't want to have to deal with the yanking off and trying to keep them on.  Selfish or lazy or proud - I'm not sure.  I just didn't want this for her.

Yet, even with the obstacles, Eliana has something that most of us long for - a joy that is so deep and not dampened by the small things (well, most of the time!).  She wakes up happy.  She laughs.  She puts up with so much - whether its rough play of her loving brothers or a variety of medical interventions.  She is such a strong and amazing little girl.

Aside from this difficulty - we had something exciting to celebrate with Eliana today.  I debated putting this in the same post as it really needs its own headline.  LOL

Eliana took 4 steps today!!!

  She did this more than once!  This is a huge milestone for her!  Children with Down syndrome have low muscle tone and hyperflexibility which both make some developmental steps harder to accomplish.  Eliana has been standing on her own for quite awhile.  She stands with her feet wide apart though.  It makes for a stable base, but not one from which she can step!  We have a contraption (I'll try to take a pic later this week) to try to help her with this muscle tone that she has worn once before we went on vacation.  We haven't tried it again this week, but it looks like she is making improvements on her own!  Way to go sweet girl!!!

I know that it will still be awhile before she is steady and really walking, but this is a start.  One of the things that is really exciting about this too is walking by 18 months is one the developmental chart for typical children!  It amazes me when she reaches any of these milestones within the normal timeframe as her cardiac condition really hindered her for quite awhile.  She is a strong and amazing little girl.

Rebecca tried to capture some steps on video - and we'll try again tomorrow.  She walks when she wants to and not necessarily when the camera is pointed at her. 

Today has been a day of ups and downs.  Sometimes I wonder when I'm sad if I'm just not dealing with things in a "mature or spiritual" manner.  I struggle.  I guess we all do.  I'm no spiritual giant - not by a long shot.  I am trying to walk in the path God has before me - failing and struggling each day.  I have so much to learn.  I have so much to be thankful for - even in the midst of trials and struggles, I know that I am blessed.

I am reminded often to count my blessings.

*A God who loves me beyond all that I can even imagine.

*An incredible family - both my husband and children and my extended family as well

*Good health - most of what we are dealing with now is pretty minor compared to last years plate. 

*So many wonderful small things throughout my day.  Today I held sweet young hands and received many hugs and kisses.  I heard the laughter of children and enjoyed the joy of playing together.  I was blessed by acts of kindness and words of love.  Too many things to list. 

Thank you for your prayers - and also for sharing our joys.

Blessings,

Leslie

Gone ... but not forgotten

I started writing this late last night after we had returned home from a wonderful trip to the mountains.  I'm not sure why I started pondering and thinking.  I thought I'd save the post and add pics to it today  I didn't take the pictures and I'm not sure when I'll get to it, so here are my ramblings without photos.  I'll add them if I can later.

Those of you that have walked this road, doubtless understand these feelings.  It isn't a new path for me.  It's a large sisterhood too.  I had thought that perhaps having had this experience that somehow it wouldn't be as hard - and yet it is.

It's been 4 months since we lost our little one.  Life just moves on - or seems to anyway.  Yet, not a day goes by that I don't remember.  I think about how big this little one should be, that I should be feeling movements, and that the due date would be drawing closer.  It seems too that there are reminders everywhere.  Not that I don't expect it, but some days it is just one more thing that hurts.

Tonight as I was rocking Eliana and praying, a few tears slipped down my cheek.  I just want our little one here - not in heaven.  This little one was wanted so very much.

In some ways that seems really selfish.  Heaven is a much better place to be.  I've been reading a wonderful book (rereading it really) called Deadline.  Part of the storyline occurs in heaven and the descriptions of heaven are so beautiful.  Like nothing I've read before.  I'm not sure I can even do a description justice so I'm not going to try.  (I do highly recommend this book, though it also deals with some very difficult topics!)  I wonder too if I'm selfish for wanting another child when I've already been so richly blessed.  I do think my heart has more room.

Some days it can seem like this little one is gone and forgotten.  I can feel so alone in my grief.   Yet, God reminds me otherwise.  I know that He knows and loves this little one that He planned before the dawn of time.  I know that He loves me more than I can even imagine.  I am thankful for the sweet reminders of this.  

Last week I received a box in the mail - from a friend I met more than 5 years ago.  We've never met in real life.  We worked together on a FIAR quilts yahoo group.  When I had a miscarriage in 2003, she sent a gift - an ornament.  She didn't know that one of our family traditions is an ornament for each of our children.  I loved that even though I hadn't planned for it, that this little one has an ornament too - an angel.  The box I received this past week contained a gift for our most recent little one born into heaven.  It's a willow tree figurine - Angel of the heart.  It's a precious reminder of where our littlest one is right now- in heaven and also in my heart.

I have mentioned before that sweet friend sent me a book, Griveing the Child I Never Knew.  I have read through some of it, but I'm not one that really likes to process tough emotions.  I guess that's probably true for many of us.  I wish I could just move on and be done with it, but it's just not that easy. 

This same friend - with an incredibly sensitive heart toward grief - recently offered to go through the book with me.  Reading and sharing thoughts and processing my grief.  What a sweet gift of her time and friendship.  I'm starting it again from the beginning tonight.  I do want to learn from this and let God have his perfect way with me.  I'm afraid of the pain, but know that healing will come if I just fall into God's loving arms. 

Shortly after our loss, a group of friends sent a beautiful tree in memory of our little one.  These same friends sent roses at the loss of our first baby.  We have all of them - roses and tree - planted in front yard.  We added another rose this year too.  It's a beautiful reminder to me of love, sweetness and friendship whenever I see them - and of life.

I am thankful for friends who know my tender heart - and know when things happen that will hurt it.  I had a phone call last week from one sensitive friend and it was a balm just to know that she understood.  

I'm not really sure why I'm sharing all of this.  I'm not sure if any of it will be of help to anyone reading this.  I hope that maybe it will help others to understand that pain of this loss.  I would appreciate your prayers as I try to work through this grief.  I would also appreciate prayers for my sweet daughter as this continues to be hard for her too.  I am so thankful for her tender heart, yet mine aches to see her hurting.  I pray that God would help us both to learn, to trust and to follow Him as He walks with us on this path.

Blessings,

Leslie 

Local Down syndrome group

I wrote this out a few days ago ... lost it ... and haven't had the energy to rewrite it until now.  I wanted to share a little bit about a fun day I had on Tuesday.  First let me share a little background. 

Eliana and I attended a workshop sponsored by our local Down syndrome group on literacy last month.  I met another mom there with a daughter just 4 days younger than Eliana.  We talked about how it would be fun to have a playdate.  Well, she set it up!  We met at a local park and there were 6 families there. 

It was a fun time to talk, share and learn from each other.  It reminded me of being a mom long ago when Christopher and Rebecca were little and we used to have playdates at the park.  I've done many since then, but not with a group of people I didn't know.  It also reminded me of being a new mom as we discussed some of the same things - even though none of us are new moms - just new to having a child with Down syndrome.  So many things to learn - and what a blessing to have other from whom to learn!

Here is a photo of all of the moms and babies.

Here are some photos of my children at the park.  They enjoyed playing and riding the rides (carousel, boats and train).  Eliana had her first ride on the carousel - and of course she liked the music and the motion. 

Later that evening, I attended a Mom's Night Out sponsored by the same group.  I've only attended one of these in the past.  I'm glad I went.  There was a large group there and we had dinner and talked.  I saw some gals I've met before (and even a couple from the morning playdate).  I also saw a gal I met at our local homeschool conference last month and am very excited about the opportunity to talk with someone that is homeschooling her son with Down syndrome.  It was also a blessing to see a friend I met via this blog - that ended up being local.  We haven't seen each other much and it was so nice to just be able to talk and catch up - and see pictures of her precious child.  I was blessed to hear her talk of what a joy her son is to her.  I hope that this is the message that I convey about our sweet Eliana too - she is a joy and a blessing!!!

I'm thankful for this day and the time to meet with other women who are walking a similar path.  I'm thankful for the encouragment, the laughter and the hope that I receive from hearing their stories and from meeting their children.

Our local group has a recent newsletter with some fun and helpful information.  There are also pictures from a recent picnic - and Eliana is in there twice - once on the cover.  Thought you might want to check it out

here

As always, I have so very much to be thankful for -  God is good!

Blessings,

Leslie

Curious George Birthday Party

More on Daniel’s birthday party. Curious George was a fun and easy theme to work with!  Daniel  helped pick out supplies at a local party store and was especially thrilled with the Curious George pinata.  He proudly carried it out of the store - announcing that he was strong enough to do it.  We put the pinata in Eliana's seat beside Daniel for the ride home and Daniel "held his hand".  It was cute!

On the day of the party, Daniel and his siblings helped to get things ready.  We made beanbags, drew posters of Curious George, made cakes and cleaned up a little too.  We planned to have the party outside, but I thought it a good idea to get things ready inside – just in case.

We started the party with some simple games – Feed the monkey (children tossed beanbags into the monkey’s mouth) and Pin the Banana on the Monkey.  I was going to do "tail", but realized that Curious George doesn’t have a tail in any of the books we looked in.  We also had a scavenger hunt for bananas hidden around the yard and played "Rotten Banana" (like Hot Potato).

(Note:  Daniel dressed himself - complete with an extra shirt, policeman's hat, a tie, a belt and ... a nametag!  We had them at an event the previous night with Roger's work and he liked it, so he wore it.  lol  He is a silly boy.)

Unfortunately, it started to rain about this time.  We moved the party inside and poor Roger grilled our dinner in the rain!  It was yummy and we were all thankful for his hard work.

After dinner, Daniel opened gifts, ate cake and then did the pinata.  This one was not one that you hit, but rather just pulled the strings.  Plenty of candy for everyone.

I had to include one more photo of Daniel with some gifts his Grandparents Nelsen sent to him.  A dress shirt and tie (which he has wanted to wear every day since!!!), a hat and a watch.  He is thrilled with all of these and the other wonderful gifts too!  Isn't he cute?!

We are thankful for Daniel and the precious gift he is to our family!

Blessings,

Leslie

Happy Birthday Daniel!!!

Happy Birthday Daniel!!!  I can't believe you are already 4!!!  The time does fly when spending it with someone you love. 

Daniel is such a delight.  He has a contagious grin that covers his face.  I love see him light up - from his wide smile to his mischievous eyes.  Daniel is thrilled that he is "getting bigger" and that he is becoming a "big boy".  I am excited to see all that he is learning and doing.

Daniel enjoys dressing up.  He is often dressed as a fireman, a cowboy, a police office and more.  He also has his own sense of style - which you can see just by spending a little bit of time with him.  He likes to wear long-sleeve shirts with button down collars.  Several of them at a time too.  Around here we often are heard telling him when it's time to go out that it's "a one-shirt day".  He wants to know how long it's going to be a one-shirt day - long time honey.  We live in the south and it's hot here!  lol

Daniel also loves wearing ties.  He has several of them and wears one most days.  He also enjoys hats (of various styles), dress shoes (so he looks like Daddy) and belts.  He definitely has his own style!  We think it's a cute one too!

Daniel also loves to do activities.  He has great fine motor skills and enjoys cutting, pasting, coloring, stringing beads and more.  I have some preschool activity bags from a swap with friends and he loves being able to do these.  I'm happy to add to this collection this summer. 

Daniel also enjoys reading books, playing games, acting things out, cooking, playing with play-doh and more.  He doesn't like getting messy, vegetables and things out of order.  Most of this last list are things we are working on with his sensory issues.  He is "sensory defensive" and has a hard time with certain things, but is definitely improving.

One of our goals for the summer is to work on fruit.  Daniel likes to cut fruit and we are trying to have fruit for this each day.  He is great at helping to make a fruit salad.  His therapist wants us to talk about fruit, play with it (fake food), do activities and more.  He has recently tried some new fruits - a cherry and a plucot (mix of a plum and apricot).  Way to go Daniel!!!  We need to keep trying these foods so he doesn't "lose" the willingness to eat them.  He also likes cantaloupe, banana and apple.  We are making progress albeit slow some days.

We celebrated Daniel's birthday yesterday with a Curious George party.  It was lots of fun.  I'll post pics and details when we get the pictures uploaded. 

I am so very thankful for this precious boy!  After a very difficult pregnancy (hyperemesis gr avidarum including bedrest, lots of meds, and multiple trips to the hospital), it was a delight to welcome this adorable (and big - 9 lb 6 oz) baby into our family!  He brings laughter, hugs and much joy to our days.  Thank you God for giving us this sweet little boy!

Here are a few pictures over the years.

1st Birthday

2nd Birthday

3rd Birthday

Recent photo - almost 4!

I love you Daniel!

Mommy

More on the Duke Children's Classic

Thank you for those that prayed for us.  We had a wonderful day!  We were planning on bringing Eliana and at the last minute decided it might be better for all of us if she stayed with her Daddy instead.  She was dressed really cute in a new dress with hearts on it.  A baby gift from a sweet friend (thanks Karin!). 

Rebecca and I went to the Washington Duke Inn - very nice!  It's on the golf course and is a huge hotel.  We went back to where the boutique area was located.  There were other "shops" there.  There were various vendors - with at least 4 of them also selling jewelry.  We didn't walk around and look at much (though I did buy some gifts from one of the vendors - won't say what as I haven't given them yet). 

We worked at the booth for about 30 minutes or so before lunch.  We were seated at the "head table".  Things were beautifully decorated with peonies in the center of the table and gifts for each woman in her chair.  Included in the gift bags were a Vera Bradley cosmetic bag, cookies, a bracelet made by Rebecca and more - so very nice!  Rebecca and I were seated with the main speaker, Amanda Lamb and her friend, two gals who that had dh's working for Fresh Point (supplier of fresh fruit for the week-end) and two gals from the Duke Development office.  A fun table!

One of the gals asked when we sat down if I were the speaker.  I said no and indicated that Amanda Lamb was the speaker.  I told her that I was speaking only for a short time as the mom of a Duke patient.  She told me that this was always her favorite part of the lunch.  That she found these talks encouraging and inspiring.  I began then to wonder if I could even measure up. 

We were served our first course (the food was wonderful!) and then shortly afterwards, I was introduced.  I wasn't too nervous - I do actually enjoy talking to people.  This talk was probably the easiest in some ways - I knew the topic inside out.  LOL  It was also emotionally the hardest topic I've ever spoken on.  I did get teary and a little choked up at points, but didn't cry.  A good thing I think.

I began talking about the things I didn't know before Eliana was born.  (See my blog post on 11/15/07 for more on this).  I used this as a starting theme.  I'm not sure I followed it though as then I just began telling our story.  I shared the challenges and the victories - all things that I've shared here.

Towards the end I shared that I could often remember seeing other moms handle difficult things and think I just couldn't do it.  They must be stronger and more special some how.  As a mom of a special needs child that has walked through trials with her, I find that I'm just a regular mom still.  A mom that just does what needs to be done - just like other moms before me have done and moms after me will continue to do.  Most women would do anything for their child - learn, adjust, struggle and rise to meet the challengs.  When you see that "special mom", know that inside she is just like you - one who loves her child and will do whatever it takes.  She is one that has been tested in a different way perhaps or perhaps she is someone with whom you identify. 

The gal that organized our involvement in this event (thank you Robin!) told me that she had admired the way that I had handled all that we had been through with Eliana and that my comments reminded her of thoughts she had.  I am encouraged whenever I hear that people can see strength as I know it isn't me.  God is good.  I remember early on having someone say to me that I would have a story to tell.  I argued with God and told Him that I didn't want a story to tell.  I just wanted a regular life.  Well, a little further down the road and I'm thankful that I have a story - and thankful too that people are interested in hearing it.  It's really quite humbling. 

I shared that even though this is not a path I wanted to walk, that if I had to do it over again, I would choose the same path.  Any other path would not likely include our sweet Eliana.  I have been able to walk this path due to God leading me - often carrying me; family and friends supporting and encouraging me; strangers also reaching out to walk this journey with me.  It has been an incredible journey - one we are just beginning.  Even though Eliana is not the child I asked for - she is the one I wanted and just didn't know it.

I feel like I'm rambling.  I spoke for about 10 minutes.  It was encouraging to me to look out over the audience and see women identifying with my statements of faith as a part of our story - or seeing tears when I spoke of the difficulty.  When I sat down, the main speaker told me that she was glad she didn't have to go right after me.  (Lunch was in between.)  It was a sweet thing to say to me.

I wish I had taken pictures of the day - but I don't have any.  :(  Poor planning on my part.  Here is one photo of Rebecca with the jewelry she had to sell.

 

Rebecca sold over $300 worth of bracelets in addition to the $1250 sold for the bags for each woman attending.  I need to update her totals, but she should be at about $7000 so far (I think).

While we were at the luncheon, there was also a golf tournement going on and a Kids Zone for the children.  We didn't attend this on Sat, but went back to it on Sunday.  It was great fun.  There were games of all sorts and the children won a ticket when they played.  These could be traded in for prizes of various values.  It was interesting to see how this affected my children.  One earned lots of tickets, used 2 of them for a special beanie baby, and then donated the rest for someone else to use.  Another was focused on earning as many tickets (and prizes) as possible.  I did convince him to donate some to other children there. 

 

 

 

A little funny to share.  At the end of the event, Isaiah and I walked over the golf course.  I had heard that they were selling Duke t-shirts there and I wanted one.  For those that don't live in this area, there are 2 universities just 7 miles apart - great rivals.  Roger works at UNC, the other is Duke.  As we were at the t-shirt booth, Isaiah asked me (very loudly) why I was buying a Duke shirt if I was a Carolina fan.  I laughed and told him that we liked Duke - they healed Eliana's heart at Duke! 

This event was so well-done.  We were said to find out that after 35 years, this is the last year of the Duke Children's Classic.  I am thankful that we were able to be a part of it this year.  It was an honor and privilege to be able to share our story.  I am thankful that God continues to provide opportunities to tell about how He is good.

I hope this isn't too disjointed.  I wrote most of it a couple of weeks ago, and finished it tonight.  Sorry it was so late in coming.  Thank you for your prayers.  If anyone knows of a site where we might have a booth to sell bracelets or another opportunity to sell some of Rebecca's jewelry, please let me know.  :-)

Blessings,

Leslie

A busy couple of weeks - but now (hopefully) a little time to settle down.

Hi friends,

I feel like I've been gone for most of the last two weeks - since our Duke outing.  I'll try to catch up soon - over the next couple of days.  Here's a little of what we've been up to.

May 31 - Duke Children's Classic - It was a wonderful event.  Rebecca and I both had a great time.  I'll write more as I do want to share.  I've written most of the blog post, but wanted to see if we had a few photos to share.  The same day, we had some good friends come to visit for a couple of days. 

June 2-5 - Camp for my children.  A co-operative camp done by a group of friends.  It was a full week of outdoor activities.

June 6 - Clean, pack, prepare - and finish a scrapbook!  :-)

June 7 - 14 - Spend a week at Lake Lure celebrating my parent's 50th wedding anniversary.  We were there with my parents and my sister's family.  We stayed in a wonderful house and did so many fun things together.  I'll be posting details and photos as I can this week. 

We just arrived home late last night.  We are tired and resting up.  Also celebrating Father's Day here. 

I didn't post in advance about our vacation as I felt a little funny announcing that we were leaving for a week.  Perhaps a little cautious, but in any event - we are home.  We have no plans for the rest of the summer and I'm looking forward to some down time to organize, plan and prepare for the upcoming school year - also time to just play and have fun with my family.

Before I close I want to say Happy Father's Day to my Dad.  I am very thankful for my Dad.  He has taught me much in life and I'm thankful for his example, his words of wisdom and his generous heart.  He taught me (often) that life isn't fair and that having a good attitude meant more than just having good fortune.  He taught me about honesty and a strong work ethic - through the things that he said, but mostly by just the way he lived his life.  He showed me that even when others are criticising you (he was a college basketball coach) and second guessing you, that you just had to keep your faith and do your best.  I couldn't imagine having a Dad greater than mine.  I thank God for him every day.

Happy Father's Day Daddy!!!  I love you!

Happy Father's Day to my husband, Roger, too!  Our children are working hard to make this a special day for him and showing their love in a sweet number of ways.  I'm thankful that you make time to spend with our children - playing and just being with them.  I'm thankful that family is important to you.  I hope your day is special - just like you are.

Love,

Leslie

 

Music!

Eliana loves music.  I think my other children have liked music, but none have been so taken with it as Eliana.  It really seems to speak to her and just the mention of the word can set her in motion.  When she hears music - she starts to dance.  She moves her little arms up and down and sways back and forth to the beat.  All the while she is wearing a huge smile across her face. 

We have a digital piano and she can just reach the keys.  She loves to "play" the piano and dance.  I tried to capture it on video - but can't seem to find it.  Here though are some photos that I just loved!

 

 

Have a blessed day!

Leslie

 

Duke Children's Classic

Just wanted to post again about our exciting opportunity coming up!  The Duke Children's Classic, a fundraiser for the children's hospital, is this week-end. Rebecca and I have both been asked to participate.

There will be a golf tournement, "Putting with the Stars", over the week-end.  I'm not sure if we'll try to go by this or not.  On Saturday, there will also be a luncheon for the wives and friends of the golfers.  We've been invited to attend this.  There will be "boutique" shops and a speaker as well as a lunch.  I'm not the main speaker, though I am speaking (briefly). I've been asked to share our story.   (At times I wonder how you can be brief about something that consumed your life for months.  I will though!)

I've thought through some of what I want to share - and couldn't get through it without tearing up. I was kind of surprised at the emotion just recalling the first half of Eliana's life. I don't think that is all bad though, getting emotional.  It was a very hard time.  I need to spend more time thinking and praying about what I want to share. At this point, I'm planning on sharing some of what I did in one of my blog entries called "I Didn't Know". (Can find it if anyone wants to read it - I think it was in Dec.) I don't have a lot of time, but want to share something that helps people understand and appreciate what it is like to have a child with life-threatening medical needs.  I think sometimes it helps to put a face with difficulties.  I hope that it will help people to understand or appreciate. 

Just today I was reading a forward in a book about a little girl with DS and a heart condition. She also had surgery, but it did not go as well as it did for Eliana. It made me again thankful that there were no complications for her. It also made me pray for this family for whom the outcome was so very different.  It was 20 years ago, but it does still happen today.  It reminded me too of how very frightening it was to have this looming over us for months.  I also was thankful for the Mom that used this difficulty in her life to make things better - not only for her daughter - but for others following behind her.  I want to do this too.  I want to be an encouragment. 

The other part of this is that Rebecca and Eliana will be going with me.  Rebecca was asked to make a bracelet for EACH woman in attendance - 125 of them!  She has been working soooo hard for the last month and a half! Hours and hours of time beading.  She will also have a shop there to sell bracelets (and a few necklaces).  She is hoping to raise another $5000 this year to donate. I'm not sure where she is right now, but hopefully we can update soon.

We would love your prayers. Prayers for whatever it is that God wants me to share. I'm sure He has words for me - and I do want to glorify Him. Prayers for our time there and the people that we will be talking with.

We are both very excited about going. We are thrilled to have been asked to participate.  I've enjoyed the opportunities we have had thus far and hope that there will be more in the future.  Rebecca even has a new dress. I wish I had thought ahead to look for one too. 

Thanks for sharing in our excitement!

Love,

Leslie

Happy Memorial Day ... and more!

Whew!  I feel like I have a lot to catch up on.  I'll try to be brief.  LOL  I also have some things that have been tugging on my heart - related to beauty - but I'll try to post that on another day. 

We had a good time at the NCHE conference last week.  I went with Eliana, Christopher, Rebecca and a dear friend and her son.  I had expected my girls to go home on Friday, but Rebecca was having such a fun time (I thought she'd be bored), that she wanted to stay.  We all enjoyed our time.  I ended up carrying Eliana most of the time.  It was crowded so I ended up having her in my sling instead of the stroller.  By Sunday I was very sore!

While there, I attended several workshops.  One of the keynote speakers was Jeff Myers who spoke on a variety of subjects including leadership, guy/girl relationships, "passing the baton" of your faith and more.  He was excellent - funny, passionate and informative.  I bought a lot of his tapes and am looking forward to listening to him and sharing it with my family.  I also attended a workshop done my my sweet friend Bonita Lillie on adding "sparkle" to your homeschool.  She gave loads of great ideas of things to do in each subject to get out of the rut and just have fun!

I also tried to purchase most of our needs for school for the upcoming year.  I have most of what I need for my younger children.  Some of my purchases were things that will be beneficial to both Daniel and Eliana - puzzles, activities and games.  I also purchased art supplies, audio CD stories and of course books. 

Monday we celebrated Memorial Day by spending it with family and friends.  We had friends over for lunch, some games outside and then a visit to the pool.  This was Eliana's first time in our pool.  We didn't go at all last year due to the feeding tube.  It was too much at the time.  She loves taking baths and we were sure that this would translate into loving the pool as well.  We were right!  She floated around in her boat for about an hour.  The water was cold - and she didn't complain.  This boat was a hand-me-down from Daniel.  I think she rode in it more in this one day than he did ever ... cumulatively.  He still doesn't like the water.  He did put his feet in this time - more than he usually does.  (And although I have a pic of him doing this - I'm also in it and it's just not going up on the web.  *grin* )

Here's Eliana having fun.  Both Rebecca and Joshua spent a lot of time pulling her around the pool in her boat.  I had planned on doing it - but the water was just too cold for me!

More friends met us at the pool and then came home with us for a cook-out, badmiton and just time to talk and laugh.  It was a beautiful day - filled with laughter and fun.  I'm thankful for the many that have sacrificed so that we can enjoy a day like this - one in which we've made memories to last for a long time.

BTW, here is a photo of our finished (well, painted at least) room.  The other photo I posted was just the primer and the actual color is darker.  I haven't hung things on the wall yet (or even gotten everything off the floor), but I'm really enjoying the color!  I do love color!

Blessings to you friends!

Leslie