Ponderings

I've been pondering a variety of things this week.  Things that encourage and some that do anything but encourage.  Being the Mom of a special baby comes with a new set of challenges, but many things also remain the same.  All Moms want their children to be accepted, liked by others and able to be part of a group.  We all enjoy the comments from friends, family and even strangers who notice their good behavior or how smart or cute they can be.  All of us appreciate the encouraging word, don't we?!

On Sunday we watched Extreme Home Makeover.  One of the family members was a young man, Patrick Henry Hughes , with great talent - and also disabilities.  Over and over again you saw people on the show who were deeply touched by this man.  People who were glad to know him and who had been impacted significantly by him.  It was so encouraging to see people who were able to look at him and see his "abilities" and not his disabilities.  Isn't that something we would all like to be better at?  I know I can be guilty of being judgmental and it just isn't pretty.  How much better when we can look at people and see the value in them, appreciate them and learn from them.  I'm sure that's what God would want.  I have prayed many times that God would give me His eyes to see others.  I still want to learn that lesson.  I've been given a lot of opportunities this year. 

Also this week, there was a huge uproar about some comments a professor made in an upperlevel class.  I heard a lot about it on a local loop since it happened at a local university.  (UNC, where my dh also works.)  The professor made a statement that all older women should have an amnio so that if they were carrying a child with Down syndrome, they could do the moral thing and abort the child.  (He clearly doesn't know that most children with DS are born to mothers who are younger than 40.)   He also related that he had known someone who had a child with DS and that this had ruined their lives.  There's more if you would like to read the whole article HERE.

Many people locally have responded and written letters to the professor and the University President.  I hope that it will have an impact.  I am stunned and saddened that this is being taught in a college class.  I realize that things have changed significantly in the last several decades.  The life expectancy and also quality of life for people with DS has improved greatly.  I'm so thankful for the opportunities we have to help Eliana grow to her potential.

Many people have called this view eugenics - an attempt to wipe out a group of people.  What would the effect had been had he selected any other minority group of people?  Is it a stretch to imagine that if we allow/encourage this type of action against one group of people that it then becomes far easier to allow it for another group?  It is certainly far from "moral" in my opinion.

As I was bathing Eliana last night and watching her splash happily in her tub, I couldn't help but smile.  As I think about it, when I or anyone else is watching her, that is usually what happens - you smile.  She is such a delight!!!  I love our little girl so very much and am so thankful that she is a part of our family.  We are blessed - and we all feel that way!  I love watching my children with her and the delight that she brings each of them.  I love watching her learn new things and I think about how smart she is to be learning them.

One of her newest things is blowing kisses.  We didn't really set out to teach this, but she just picked it up and really likes doing it.  Last night while she was in the bath, she noticed the "baby" in the mirror.  I had been pointing out her reflection when she wasn't engrossed in her splashing.  At one point, she looked at her image and blew herself a kiss.  It was adorable. 

I hope that I can be a voice of encouragment about Down syndrome.  Our lives have not been "ruined" by having a child with DS - far from it!  Have things been difficult at times?  Yes!  Have we had new worries and doubts?  Yes!  Have we grown in our faith and learned lessons we might never have learned?  Yes!  Am I thankful to have the precious child in our family?  Yes!!!  I have found my heart stretched and my faith deepened as I learn more about loving and living in a way that would please God.  We are truly blessed.

With a thankful heart,

Leslie

More on the Radio Interview

Hi Friends,

Thank you for your prayers and encouragment about the radio interview.  Both Rebecca and I ended up talking and sharing our experiences.  I am glad that some of you were able to listen.  If some of you missed it and would like to hear it, try this link.

Radio Interview

I wish that I had more opportunity to share about God's faithfulness.  Hopefully, I'll improve with time.

It has been a busy last couple of days from Valentines Day (I have things to share) to a week-end trip to visit our dear friends (we had a blast) and back home again to a week of camp for Rebecca (American Girl Theatre) and school and field trip for the rest of us (and therapies!).  I'll write more as I'm able to - and post some new pics as well.

Blessings,

Leslie

 

Radio Interview

I'm not sure how this works, but perhaps you can listen to the interview tomorrow by following this link to the webpage of the station doing the broadcasting.

 My dh just sent these links to the website of the station doing the interview.  It looks like you may be able to listen to a live broadcast.

http://www.wralfm.com/Article.asp?id=68145

And here is a link to a webcam.  (Guess I do need to look decent for a radio interview.  LOL )

http://www.wralfm.com/Article.asp?id=350390

Roger found these and sent them to me.  I hope they might help someone who is interested in listening - like you Mom.  :-) 

I'm off to bed now as it will be a full morning tomorrow.

Blessings,

Leslie

Radio Interview tomorrow - and a funny story to share

Hi Friends,

I have mentioned this before, but wanted to share it again.  I'll be doing a radio interview tomorrow (Valentine's Day) at 10am.  Duke Children's Hospital is doing their annual Radiothon and they have asked me to share Eliana's story.  I'll be talking with Bill and Sheri of MIX 101.5 for those of you that are local.  They liked the idea of the heart connection with the holiday. 

I would love prayers for clarity and words to share that would offer hope and encouragment.  I have no idea how long it will be (I"m guessing not very) or if I'll be asked questions.  I'm excited about the opportunity. 

*~*~*~

Here's the funny story.  I was just giggling over this and thought it may give some of you a laugh too. 

We were talking at dinner last night about colleges and jobs. Do I really have one old enough to be considering any of that?!!! Anyway, Christopher mentioned motorsports engineering and I said that it would mean he needed to focus on his math. He also talked about being interested in sports medicine, to which I responded that good math and science skills were needed there.

Well, then the other children wanted to share their ideas of jobs they would enjoy. This was the one that made me laugh.

Joshua (8yo) - "I want to be a baseball player because they don't have to know anything."



I'm sure he was thinking about school subjects when he made the comment - but still.

Blessings,

Leslie

Down syndrome Clinic

We visited the Down syndrome clinic this week.  I considered cancelling as it was the same day as a field trip.  Since this only happens once per month it is hard to reschedule (and often conflicts with our field trips!).  I called about an earlier time, but was encouraged to show up a little early and that it would hopefully not take too long.

I didn't go early and am really glad of it as it would have made NO difference.  (I was told I could get labwork done early, but the lab tech showed up after I did!)  It's nice to see a positive in not running early in the morning.  LOL

What I thought would take about an hour - ended up lasting 4 hours.  It was a long morning.  Thankfully Roger had been able to take time off to be with our children and they all had a fun morning/lunch celebrating the Chinese New Year.

We waited for more than 1.5 hours before being seen.  During that time though I saw several other familes that had a child with DS.  It was interesting to me to see a variety of ages from 2 to teen.  I enjoyed watching the children and also their interactions with siblings and/or parents.  I talked with one mom there who shared some of her thoughts on DS.  These are things I've heard before and have to admit that it rings true with me too.

She talked about the blessing of her son.  She also said that she wondered sometimes if "we" weren't the ones with the problems - not the ones with DS.  In addition to being "advanced" also comes the addition of violence, hatred and bitterness that isn't seen so often in those with DS.  Now, I'm not saying that people with DS are without sin- far from it!  I've seen impatience, disobedience and tempers.  I've also seen an incredibly loving and forgiving nature that is quite beautiful.  I wonder if these sweet souls are here to help us learn about unconditional love, forgiveness, patience and appreciating the small things in life.  I know that those are lessons that I can stand to learn!

I was asked a lot of questions about Eliana's progress, development, medical history, etc.  We met with the dr who thinks Eliana is doing well.  Since we are very well connected medically (cardiologist, ENT, eye doctor, great ped, therapists, etc already in place) we did not need to see any of those folks at the clinic.  (They coordinate all of this for people that do need the services.)

We talked some about various testing.  She thought Eliana needed to be tested for thyroid and an ABC (don't remember what this is).  She cancelled the iron test and the celiac screen.  Eliana hasn't had a lot of exposure to wheat or a variety of foods so those tests would probably not reveal any useful information.  She noted that people with DS have elevated red blood cells (who knew?) and that this can mask problems with iron deficiencies.  (This dr has studied this specific thing.)  We will probably test for this at the next visit in 6 months.

While I didn't enjoy the hours spent waiting, I'm glad we were there.  It was good to see other families and children.  It's always nice to hear encouragment on your child.  Eliana was a complete doll!  She had fallen asleep before her blood draw - and even after waking up to that  (Ouch!) she was a sweetie (after crying for a short while).

As I was leaving, Eliana was in the stroller and we were waiting to check out.  A young man with Down syndrome (teen) was in front of us.  When he saw Eliana, he commented baby and started walking toward her.  I wasn't sure what he would do and just watched.  He stared into her eyes and began very gently stroking her face.  At the same time she just stared up at him.  It was such a sweet and tender moment.

We are incredibly blessed to be living in a time and an area with such great services for Eliana.  I am thankful to be here.  I wish all children that needed these services could get them.

Blessings,

Leslie

Test result, appts and updates

I'm sorry for not updating sooner.  Things have just been busy and it's been hard to find much computer time.

Cardiology - We met with our cardiologist on Monday.  It was our first appt in 6 months!  What a long time that seemed after being in there sooooo often.  It was a long day - 4 hours there - but a good one.  Eliana had an EKG which is a simple, painless test that she didn't mind at all.  She did well on that.  We saw our card briefly then before heading to get an echo. 

This is where it took a loooooong time.  We answered questions, then it was time for her to get sedated - and she really fought it!  I was surprised at how long she hung in after being given the sedating meds (directly into her tummy too!).  The echo then took about an hour.  There was a fellow there learning and she spent time looking taking pics after the other gal finished. 

Then we went back to see our card.  The great news is that her repairs look wonderful!  She does have some small leakage around one of her valves, but this is not related to her surgery.  This is not a problem at this point, but will be monitored, as will her repairs, for life. 

At one point our card smiled at me and reminded me that he had said that the heart repair would be the easy part - now came the work.  I'm not sure on that though.  Going through the trial of heart failure and surgery was so very hard - frightening and overwhelming.  It was scary.  I'm sure that learning to deal with all of the issues surrounding Down syndrome will also be a challenge - but hopefully not in the dramatic and life-threatening way of heart surgery.  I do know that this did cause me to lean on God in ways I've never had to do.  I would not choose this for anyone, but I can see good that has come from it.  So while the situation wasn't good - it was worthwhile.

ENT - We went to our appointment only to find out that I had the date wrong.  *blush*  What a silly thing for me to have done.  I wrote down the 5th and instead it was the 25th.  Guess we'll be waiting a couple more weeks for news on her hearing.

Therapies - She is doing well.  We are seeing improvements in all areas which is encouraging.

   Physical - She is learning to climb the stairs.  A necessary skill, but not one I'm thrilled about teaching her.  LOL  We have always discouraged this in the past.  She is still working on pulling to a stand.  She can do this on low objects (like me when I lie on the floor) but has trouble with higher things like the sofa.

   OT/Feeding - Improved from last week when her tongue seemed to be in the way.  She is eating about 1/2 of a square container of baby food once a day.  Slow going, I know, but it is progress.  She is doing well with her formula and we haven't used the tube in months!  Oh, her weight gain looked great at a couple of appts this week so I'm encouraged that we will soon get the approval for the removal of the tube!

   Speech - We hadn't seen the therapist in about 10 days and she was really impressed with Eliana's improvement.  :-)  She is pointing to a baby in the book when we ask where is baby.  She is learning and responding to things we are asking which is really fun to see.

I need to go help Eliana so will write more later on the Down syndrome clinic, Chinese New year and more.

Blessings,

Leslie

 

A Look at our Week

I'm going to apologize in advance if this entry is dry.  I'm battling some sinus stuff and my head really hurts.  I do want to update on our week though as it is a busy one. 

Today we are relaxing and hanging out at home.  I enjoy those days.  I waver between wanting to play and wanting to "get something done".  It's hard to rest at times when I look around and see so many things that need to be done.  Those things will still be there tomorrow though. 

Monday - We have an appointment with Eliana's cardiologist.  It's been since last summer since we saw him.  (We did see him on various week-ends at our daughter's soccer games as well as at heart functions.)  I'm not sure what types of tests will be run, but am anticipating a good report.  I'm hoping it won't be a really long day, but am thankful that we have been able to go months without having to visit there!

Tuesday - We have a return visit to the ENT.  Again, I'm anticipating a good report.  Her hearing looked good at the last visit and we have seen no reasons for concern regarding her hearing.  Thankfully she has not dealt with any ear infections!

I'm considering a week-end away next month with friends.  I'm concerned about flying with Eliana and any difficulties it might pose for her.  I'm hoping he can share information on this as well.  We flew when Isaiah was a baby and he had difficulty with his ears adjusting to the altitude (fell asleep before the flight).  It was a miserable trip for all of us.  I don't want to repeat this!

Wednesday - Our therapy day.  We are working with Daniel on various sensory things - trying to help him learn to deal better with things and not just "melt down".  It's hard at times to discern what it just misbehaviour and being whiney (yuck!) and what is a real issue for him!  We are working on it though.

Eliana is learning more and more.  We are helping her learn to climb the steps.  (I'm not really sure I want her to know how to do this though I do realize that it is a necessary skill.)  She is able to do is with some assistance, though it often tires her out.  We are also helping her learn to pull to a stand.  She can do this on low objects, but not higher ones (like our sofa) yet. 

Thursday - We have a field trip with our homeschool group.  We are doing a program at the library on Chinese New Year.  There is an ESL class meeting there before our program and a Chinese man in the class has agreed to talk with our children about his perspective on this holiday.  Isn't that cool?  Afterwards we will be going out to lunch at a Chinese restaurant.

Friday - Speech therapy.  We are working on helping Eliana learn to identify objects and begin to point to them.  All of the things that children typically just learn and do on their own.  We are having to be more intentional about teaching these things to Eliana.  One of the things we are doing is reading a peek-a-book book with baby faces in it.  She enjoys this book.  We are hoping she will begin to point or pat the baby when we ask "Where is baby?"  She enjoys doing this which is fun.

We also do a small co-op type activity with another friend on this day.  The older boys do a science lab while the younger children are doing an art lesson.  We are hoping to add in an electronics class to this too.  It's a fun afternoon.

That's about it for the week - I think.  I will update on the various appointments as I'm able to.

Blessings,

Leslie

Ministry ... God's calling of us!

I've been corresponding over the last year with a dear friend from college.  I've been blessed by her prayers and encouragment and thankful to have her as a sweet part of my life.  One of the things we have been talking about is purpose and God's calling on our lives.  Both of us are searching and talking with God about what exactly it is He is calling us to do.

She shared with me a portion from a friend's carepages that I wanted to share with you.  This was written by a Mom who has recently lost her 13 yo daughter to cancer.  It was an aggressive and quick illness.  My friend notes that through it all this dear sister has been an encouragment to keep our eyes on God.  I know that her words encouraged me and I hope that they will you too.

God's timing is always perfect and this was no exception. I have been studying the life of Elijah. Today, I focused on I Kings 18 where Elijah had to challenge Ahab to determine which god was the strongest...God or Baal. Elijah's ministry was not his idea but God's. He did not come up the idea and then ask God to bless it. He was simply walking w/God and obeying what God had told him to do.

Later in the morning, John (her husband) came to me and said "we have a new ministry and I do not like it." He was referring to our new ministry of helping parents cope when they lose a child. Right now we can hardly cope ourselves, however, we know the day will come when someone will need our support which will be unmatched by others who have not walked this path. John did not realize I had studied the passage earlier in the day which followed exactly his thoughts. John and I did not sit in a chair and raise our hand acting like an anxious student saying "oh, oh, oh, pick me, pick me, pick me!" You know the scene to which I am referring. We never asked for this ministry.

What I learned from Elijah was that true ministry is initiated by God, which means it is received, not achieved. A God-initiated ministry comes only through following God in a relationship of dependence. We have no say in the gifts God gives us. We must use whatever He gives us and follow Him.

The ministry I envisioned was that Ashley would be completely healed on this side of heaven and I was going to take her on tour to visit the youth groups who had been praying for her so that the kids could see a walking miracle of God. Instead, He chose to completely heal her on the other side and allow her life to impact the world. It is up to John and I to continue to walk closely w/God and to do the work He has called us to do...even with huge broken hearts!

Colossians 4:17 "Take heed to the ministry which you have received in the Lord, that you may fulfill it."

I know that I identify with the vision of ministry that she describes.  I was content in the ministry opportunities that I had - ones that I had "signed up" for voluntarily.  I did not want a new ministry.  I saw a friend (that I haven't seen in awhile) earlier this week and as we talked she said that she remembered me saying before Eliana was born that I didn't think I could handle being the mom of a special needs child.  She also said that she told her Sunday school about me when she was talking about God's grace in watching all that unfolded after Eliana was born.  That blessed me incredibly!

I know that I had friends tell me shortly after Eliana was born that "I would have a story to tell".  I also remember thinking - and perhaps saying - that I didn't *want* a story to tell.  Guess my heart was pretty hard about it all, huh?

Well, I think I'm becoming more comfortable with this new ministry.  I called my OB office this week and said that I would love to be a contact for anyone with an ultrasound screen of Down syndrome or that has had a child born with Down syndrome.  They seemed really excited at the idea of having me as a contact.  I know that there are a lot of negative misperceptions about having a special needs child and if I can help encourage someone in any way, I would count it a privilege.

I am also being given another opportunity to tell Eliana's story.  This time it will be during Duke Children's hospital's Radioathon fundraiser.  I'll be interviewed (with Eliana) on Valentines Day.  They liked the heart connection for that day.  I'm not sure what I'll be sharing, but hopefully it will be a message of hope and encouragment.

Rebecca may be making another donation on that day as well.  If any of you are interested in helping with her sales, please email me.  As of now, she doesn't have a large amount to donate (compared to the fall) so I'm not sure if that will happen or not.

Thank you friends for walking this path with us.  I'm thankful to be on this road. 

Blessings,

Leslie 

Living, Loving and Making a Difference

So many things to ponder - and I find myself pondering things often.  I know that though I pray often throughout my day that I need to spend more time in the word - alone.  Why is that so hard for me at times?  Why haven't I learned this lesson that keeps coming back in my life - over and over again.  I know that the days I start with God are richer and more peaceful so why do I let things get in the way of that?  Why is this still a struggle?  I do know that when I pay attention, that it is a good reminder to be patient with my children when they struggle over and over with the same thing(s). 

For those that know me in real life, you know I'm not a morning person - and never have been.  I love the quiet of the night and waking up early is tough.  I don't find my mind is very alert then either.  So while I love the idea of an early morning quiet time, my body fights it all the way - and probably my mind/attitude too!  Sounds like a discipline problem doesn't it?  I do think my day starts better though when I spend time with God.   

A friend sent me this video/poem called The Dash   I think you will be encouraged by it.  I know I was.  I know that I want to make a difference.  I want to live my life fully - loving those that are around me!  I know that God has called me to be a Mom and that raising my children is an incredible task.  I am so thankful to have this calling!  Some days I feel like I've blown it - like yesterday when one of my children confronted me about complaining about his/her behavior to a friend on the phone.  Ouch!  I need to watch my tongue.  A lesson that I think is never fully learned. 

I think that the role of a Mom is an important one - and not limited to just serving your family.  I think this is true of whatever God has called you to do in your life.  I think at times we watch others who are "going" out to serve and think that they are somehow doing more.  There are many other ways we can serve - praying for others is one of my favorites.  I know that I personally have been incredibly blessed by the willingness of others to pray - and even to fast - for Eliana and our family.  God has touched my heart many times through this selfless and faithful act of others.  There are other ways I have found to serve during this season of life as well.   

• Encouragment - This can come in so many forms from a word well spoken, a note/email or even just a hug.  Don't underestimate the power of encouragment to help someone get out of a hole or even have the desire to then encourage others in their lives. 


• Service - There are so many opportunities in our families, neighborhoods, churches and communities to serve.  We just need to open our eyes to them.  My daughter Rebecca is especially good at doing this.  She has been bringing bags of food and other things to a homeless man that we often see on our way to church.  I love her heart for him and the way that she remembers him.  Just this week she decided she wanted to make Valentines for children that may not get them.  We are hoping to make bags with a card and candy to take to a local group of children.  I love that Rebecca doesn't feel bound by her circumstances, but looks for ways to work within them. 


• Financial - There are always groups that need our support.  We have found two that we wanted to support this year.  I wanted to share them with you. 

The first is Reece's Rainbow.  This is a group that helps facilitate the adoption of children in foreign countries with Down syndrome.  There are pictures of many of these children.  One of my friends who has adopted children with Down syndrome once told me that she wanted to help people see value in these beautiful children.  I can understand that.  I know that before Eliana was born that I couldn't image choosing Down syndrome.  Now though, I can.  Would I have chosen for Eliana to have Down syndrome - no.  Though my life is so much richer for it now! 

Eliana has brought such joy, love and blessing to our lives - I can't imagine life without her.  I'm so thankful she is ours!  At the same time, I realize that others may look at us and not see the blessing of this special child - I hope that won't be the case though.  I hope that we will live our lives in such a way that they will see that there is great worth in each child created by God. 

The second group is called Kiva.  This groups helps make loans to people in foreign countries who are trying to start or build their business.  You look through the profiles of those wanting a loan and then can choose to make a loan in $25 increments.  You will receive a note when the loan is made - and I'm not sure if you get any in the midst of the loan period.  (There is a specified time for each loan.)  When the loan is repaid, you will get your money back and then can loan it to someone else.  I think this is a neat way to have a heart for those in other countries and to appreciate and encourage the work that they are doing.  The repayment rate for the loans is very high too.  We have just made our first loan last month thanks to a gift from friends and it will be a neat thing to follow along. 

I hope none of this sounds preachy.  Just wanted to share some of what is in my heart.  I am thankful for the work that God calls each of us to do - and it does look different for each of us. 

With love, 

Leslie

Creatures of Creation

We went on a neat field trip with our  homeschool group a couple of weeks ago.  I haven't talked much about our homeschool group - but I love it!!!  It's a small group of families that use the Five in a Row curriculum.  We plan field trips around the books used in our curriculum.  We go on a field trip every other week and have Mom's meetings once per month.  I am very thankful to have this sweet group of friends with whom to share the journey of homeschooling.

Back to the field trip.  We hosted Dan Breeding who presented a Creatures of Creation program for our group.  (Click on the title to visit his website.)  The program was awesome!  He talked about animals and how they were specifically created to live and do what they do by a Creator.  He also showed us the animals that he talked about.  We were up close too!

The first animal we saw was a porcupine.  This animal fluffs out his quills when he feels threatened to try to scare away the threat.  He will back into the enemy if needed - but does not shoot his quills.  I thought it was fascinating to watch him eat a banana - peeling the skin off with his teeth and then eating the sweet fruit.

The next animal was an owl.  This was the tie-in for our family as we have been reading Owl Moon this week.  He talked about the size of the owl's  eyes relative to it's head size (would be like our eyes being the size of a softball).  He showed us how the owl could rotate his head and explained why their flight is so quiet (fringed tips of the feathers) - and then had the owl flap it's wings so we could hear for ourselves.

The third animal was a gibbon - sooo cute.  The moms were all impressed to watch him change his diaper with just one hand while perched on his knee.  LOL  The gibbon is able to hang from it's hands for up to 30 minutes.  He also talked about training varieties of monkeys in film projects over the years.

The last animal was an alligator - 7 feet long.  We were sitting close to the table edge and I kept hoping none of the animals would hop down.  He talked about how alligators have a special valve in the backs of their throats that stays closed when they swim through water so that they won't drown.  When they want to eat, they lift the mouth into the air so the valve opens to let in the food.  He let anyone that wanted to  have a photo with the alligator.

All through the morning Dan talked about God and the awesome design He had for animals - and most especially for us because we are created in His image.  It was fun, exciting and interactive.  He does travel if anyone wants to talk with him about doing a program in their area. 

He told us about a movie he had worked on and our family rented it and really enjoyed it.  It is called Most Vertical Primate about a monkey that learns how to snowboard.  Dan even had a small role in the movie and it was fun to see him in it!  We are planning to rent some of the other movies in this series too.

Will update more later on the rest of the family.  We are all well and there is much to share from therapies and such.  At the moment though I have a wiggly girl on my lap and I need to get off  of the computer.

Love,

Leslie