She Did It!!!

It has taken me awhile to get to this post, but I'm thrilled to make this announcement!

Three cheers for Rebecca - she has reached her goal!  Wholehearted sales are currently at

$5083

In just 6 months time, a goal that seemed lofty and unreachable, has been attained.  It has taken a lot of work, help from friends and lots and lots of time!  We have been encouraged by others as the story of a little girl's vision touched many hearts. 

It was something we spent many hours doing together as a family in our bedroom while Eliana was in heart failure.  Friends would gather in our home to help out at various times too! 

I talked with a gal in the Development office yesterday.  The date for presenting the money is set - next Friday September 7th.  Rebecca will be presenting a check to Duke Hospital to be used to for heart babies to get the help that they need.  At this point she has not specified the use of the money - other than to help heart babies.  The cardiologist had suggested that we might want to "earmark" the money for something specific so that she would know where her money went.  We just haven't had any ideas what that might be.  If any of you have any suggestions for us - please let us know.  

For those of you that may have missed this story, go to this entry on my blog to read more about it.

http://www.homeschoolblogger.com/LeslieNelsen/308596/

They are planning to have one of those extra-large, oversized checks made for Rebecca to present.  She is excited about that.  She is also a little nervous about having to speak.  Please pray that she would have a calm spirit and just be able to share her heart.  We aren't sure yet exactly what type of comments they might want from her.  We are expecting Eliana's cardiologist to be there.  He has been wonderful!  I'm not sure who else will be in attendance.  I do know her whole family will be there - cheering her on!

Thank you to many of you that have encouraged Rebecca (and me) as she has started a non-profit business at the age of 11.  It has been quite a learning experience for all of us. 

I'm so thankful for her tender heart.  It's sweet for me to see her using her gifts and being willing to work hard to help others.  I learn a lot from my children.  Rebecca has been an incredible example to me of compassion and effort - doing something to make a difference in the lives of others.

If any of you are still interested in bracelets, she isn't planning to stop her business.  I'm not sure what her goals/ideas are from this point forward.  We'll have to wait and see.

Thank you for sharing in our excitment!

ETA:  One small note on Eliana.  Her burn seems to be healing well - but she is having bleeding around the site.  Please continue to pray for her healing and no infection.  It's a little alarming to see the blood.  She does not seem to be in any pain thankfully.

With love,

Leslie

Prayer request for Eliana

Hi Friends,

I have an updated request for Eliana.  I called the ped office today about her burn and the nurse didn't want to give any advice without having Eliana seen by a doctor.  We scheduled a visit for 5:30 during the after hours clinic.  I had tried calling the surgeon's office in the morning - the nurse was gone by mid-day and the surgeon was in surgery.  There was no one else there that could help me.  The ped office seemed my best bet at this point.

We left home a little after 5 (the office is about 15 min away) and got stuck in traffic.  I got off on a back road - and got stuck in more traffic.  The time was pleasant though as I was talking with a sweet friend that was full of encouragment. 

We arrived at the office close to 6pm - obviously late for our appointment.  We had a longer wait before being seen.  The doctor was very nice, though seemed a little unsure about how to treat Eliana.  She really wanted her to see the surgeon.  That doesn't seem possible given that it's a holiday week-end. 

She told me that Eliana has 2nd degree burns.  :-(  This made me feel awful!  She could tell that and reassured me that it wasn't my fault, but I still feel badly for my sweet little girl.

I had another friend tell me of this happening to her son, but I thought it was due to a combination of the medication we are using with something else.  I really didn't think it would happen to Eliana.  The first two treatments went without incident.  I guess perhaps I should have used more common sense.  I also wish I had been warned by the surgeon or given instructions on how to prevent it from happening.  Guess I have more to learn. 

For now, we are treating it with burn cream twice per day or as needed.  We are also to keep a close eye out for infection.  She is to be seen immediately if this occurs.

Please join us in praying for the following:

*No infection at the burn site.

*Healing would be rapid and complete with no complications of any kind.

*Wisdom for us as we care for her and for the doctors that are treating her.

*No pain - for now she doesn't seem to be in pain for which I'm thankful.

*Increased appetite for eating from the bottle.  She seems to be stuck at 2.5 ounces per feed for the last 2 days.

Lord, I pray that you would place your healing touch on sweet Eliana.  Make her hurt places whole.  Bring comfort to her.  Please keep infection away from her body and keep everything working properly with no complications.  Please give all of us that care for her wisdom in knowing what is best for her.  Thank you for holding her and loving her more than I can begin to imagine.  Thank you for entrusting us with this precious little girl.

Thank you for your prayers dear friends,

Leslie

A Little Bit of Life Over Here

Hi Friends,

I've been wanting to write - but just not finding the time. We've started back to school and this week is one in which we have been going full-speed ahead. It's kept my days really busy too! I can tell we are out of all of our routines from schooling to chores and more. We probably need to spend some time in training, but we'll try to do it as we go. I don't want to take a break yet as we'll be going to the beach for a week soon - so we'll work until then.

Our schooling is going well. Daniel has enjoyed having his own time with Before Five in a Row. (Reading picture books and doing activities that tie in with the story.) We are reading Play With Me this week and he has asked to read it over and over again. Today we made pinecone/peanut butter bird feeders which he thought was great (as did two of his older brothers that joined in the fun).

Isaiah and Joshua are doing Five in a Row. Our book this week is Andy and the Lion. Today they worked on two-color pictures - like in the story. Joshua really balked at being limited to 2 colors. I encouraged him to just try it. He finally did and was very pleased with the results. He thought he might even try it again.

Rebecca is studying with Beyond Five in a Row. Today she spent time learning about shelters and built an igloo from sugar cubes. (Lots of my children just wanted to eat them - yuck!) She has also been learning about the "golden spike" and the Transcontinental Railroad to go along with The Boxcar Children.

Christopher is doing a variety of studies from learning about the Romans in history to biology in science and using The Lord of the Rings to study English.

Eliana is busy playing and having fun. I love to see her face break into a smile when she sees someone coming to her to play. She is truly a delight!

She is continuing to eat well - though not that stellar day from a few days ago. Today she ate about 13 ounces which is more than half! Hoping and praying she would continue to improve.

We are still having trouble getting the parts we need for her tube. I talked with them yesterday and was told that the part we needed cost over $800. I assured her that this could not be the case! It's just a tube with a clamp in the middle. She finally found the "correct one" in the warehouse and promised it would be here by today. She was right - it did arrive. It however is not the right part. It is the one that sticks up from the photo I shared last month. *sigh* I've looked up the part on-line and am hoping we can get this figured out tomorrow!

Also please pray for Eliana's healing around her button site. I think some of her skin is burned from the cream to get rid of the "granulation tissue". :-( I didn't realize that it could do this to her skin and will be calling in the morning about this too.

I know that I owe many people an email. I will try to get back to you. Please know that I treasure receiving your words of encouragment!!! My lack of response is not reflective of any lack of appreciation. I'm truly just busy with more on my plate than I can get to on most days. I will do my best, though please forgive me if it isn't all that great or if it doesn't happen.

This is feeling a little factual - but thought it might be nice to have a peek into our lives. I've been learning a lot about how God views me (and you!) and it's just beautiful. Will try to write more soon. Still thankful to be a Child of the King!

With love,

Leslie

PS Still working on sharing Rebecca's news - hopefully tomorrow!

Our Week at a Glance - Aug 27-31

I'm very, very excited about one thing  on our schedule this week - we have NO medical appointments outside of the home!!!  When was the last time this happened?!  I honestly can't remember.  I feel like we have a free week to do with what we want.  I need to make some plans so that we can make the most of our time!

We have no feeding therapy this week as our therapist is on vacation.  Between her vacation and ours we will miss 3 weeks.  At this point though, I'm not too worried about it.  Can I just brag on my littlest girl?  Today (Sunday) she ate 15 ounces!!!  Is that amazing?!  It is the most she has had in one day since she went into heart failure in January.  Oh, happy tears.  It has been a long, long time.  I'm feeling very encouraged and hopeful at this point that she will be able to eat - and get off of this tube.  Please continue to pray for her feeding success. 

Tomorrow (Monday) we are planning to visit a pond.  My oldest and a friend are collecting various samples from the pond to study as part of their chemistry lab.  The rest of the children will be doing some nature studies/pond studies to tie in with their studies.  I'm hoping some of them will want to draw in their nature journals.  I'm also hoping we'll see some interesting things.  In any event, it will be fun to just be out.  We're just planning to go to a small pond near our home.

Tuesday - I've made plans to attend a local Mom's Night Out with the local Down syndrome group.  I'm a little nervous about going.  The meeting is very close to my house though so if I'm going to try it - now seems like a good time.  I posted a note to the group and I've received soooo many encouraging notes from other members.  It seems like a really neat bunch of people.  So, I'm looking forward to it too in spite of being a little nervous.

We have physical therapy on Wednesday.  I'm hoping Eliana will be able to do a little more and not have a sore tummy this week.  She is loving being up on her hands and knees - rocking and looking like she is ready to take off!  Her button site isn't really looking better, though I'm guessing it will just take some time.  It doesn't look any worse either. 

That's about it for the week.  Christopher has science lab later in the week with the pond samples.  That's it!

I'll try to write more tomorrow updating on Rebecca's Wholehearted.  :-)  Stay tuned for the news!  *grin*

With love,

Leslie

Guess what our girl has done today!

She is eating!!!  I'm just thrilled with what she has done today.  Her first feeding was at 8:30am.  She was doing great taking most of the bottle.  She got stalled a little on the last ounce.  We took a short break while I got ready for church and then tried a little more.  She ate 128cc - out of the 140 she is supposed to be eating.  We skipped the last 12cc as it seemed silly to pump in so little.  That's a little over 4 ounces.

She just finished her second feed of the day - and took 110cc which is a little more than 3.5 ounces.  she is getting the last ounce via tube as I type.

The surgeon on Friday asked what I thought was making the difference in her ability to eat now.  I do think that having the NG gone has made a big difference for Eliana.  She seems much more content.  While the g-tube is often a pain for me, it really isn't for her.  I'm getting used to it too.  I know the problems and how to deal with them. for the most part.  (At least I'm hoping I've figured out most of the problems.  LOL) 

I'm so very thrilled with Elaina's eating progress!  She has taken a little over 7.5 ounces so far today!  She has 3 more feeds to go.  If she can keep this up, we'll soon be able to do all of her feeds by mouth.  That will be a glorious day!

I was reflecting today on how when Eliana was born I hated giving her a bottle.  I wanted to nurse her so badly.  She was able to nurse, but not for long enough and when she went into heart failure she was not able to eat much orally at all.  Now, the bottle that I so didn't want to be a part of our day - I am welcoming and looking forward to.  Isn't a little perspective a wonderful thing?  I am thankful that we have this option for our daughter. 

Thank you God for this moment of hope.  This day has been one already of hope.  The message in church was encouraging and it was just sweet to be there with my family.  I've missed us being able to be out together.  This peace in my heart is helping to feel like I'm finding that "new normal".  I so wanted things to be like they were before that I'm sure I was resisting the changes.  I'm happy to have back some of the old (like today I'm trying to bake bread by hand for the first time in 8 months), but I'm also happy to find joy in the new too.

Lord - I am thankful for you.  I am thankful for the opportunity to praise you.  I am thankful for eah blessing - large and small - that you place in my life.  Thank you for opening my eyes to see more of the blessings that you provide.

With love,

Leslie

Real or Plastic?

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. II Corinthians 1:3-5 (NIV)

I've taken a break for a couple of days and wanted to take some time to update you on Eliana and some progress we've made.  I wanted to start though by saying that I'm doing much, much better.  Thank you to all of you that have been praying.  I think that the stress of anticipating the move - and watching everything being boxed up - was just overwhelming to me.  It was something I needed to deal with - to wrestle out with God.  I needed the time to turn to Him - alone - to find answers and also to find peace.  I needed to find the truth in my heart that He is here, He is with me and He will comfort me and flood me with His peace.  And He has.  I have sought Him and found Him just as He has promised.  He has filled my heart with His peace - for days now - and I am thankful.  It is a sweet thing to be resting in His arms.  I wish I had relaxed and fallen into them sooner! 

I have been very real and raw with my emotions.  I've struggled at times as to whether or not I should hit the submit button with some of my entries.  (I think I mentioned this in an earlier post.)  I've wondered if I would be misunderstood, judged or criticized by others.  Overwhelmingly though, I am sent notes of encouragment, prayer and love.  Today I received a CD with songs to encourage me.  (Thank you Cyndi - and I'm praying for you!)  One sweet sister shared with me that it helped her to see my struggles.  It helped her to realize that other Christians struggle with their feeling and circumstances.  That even though we may experience pain and sadness we do learn to trust and hopefully come through with a stronger faith.  Isn't that just like God?  To use something that seems hopeless and full of despair to comfort and encourage someone.  Thank you Father!

I've also had to remind myself that I am really only accountable to One.  I need only to live for the approval of One.  A sweet friend talks about the "audience of One" in relating how we should live our lives.  We aren't to seek the approval of others - though it is a nice thing.  We aren't to live our lives for others, but only for God.  In doing this we will obviously be helping and serving others.  In all of this, even the struggles, I've been trying to do what He has called me to do.  I am thankful that He will let me know what it is that He requires of me - even though at times I do not understand.  I am thankful that even when I'm not sure, that I can trust Him to be with me, guiding me, loving me and sometimes carrying me.  

There are times though when being vulnerable comes with a price.  It is those times that I've wondered if it would just be better to deal with it privately.  It is what many people do and there is probably nothing wrong with that.  Unless it isn't what He has for me.  It may be easier to let God come to me - or more likely me to  Him - in His timing.  Would it be better to leave out the struggles, the tears and questions?  Would it be better if I only shared the end results - the times when God has taught me or helped me or filled my heart with His peace when I least expected it?  Would it be better if my lessons were just that - mine?  I've been asking God that.  

I received an email devotion this week that talked about being real or plastic.  Well, who wants to be plastic?  I don't know anyone that aspires to that!  On the homeschool message board I'm part of, we have talked about being real and how hard it can be to find "real" even in the church.  We've talked about why it is that people feel like they need to present a front of having it all together.  I think sometimes it may be less of a pretense and more for protection.  I know from my experiences that when you have been wounded, it can make it much harder to want to be vulnerable again.  It would be easier to be silent rather than to risk laying your heart bare and hoping that it doesn't get hurt again.  Though isn't that what Christ did?  Layed it all out for us - and was wounded and criticized and worse in spite of - or perhaps because of - being real.

The devotion went on to talk about the scars that we carry as a result of the difficult times in our lives and how these very scars are a witness to others.  The scars are a part of who we are.  We can hide our scars in various ways.  This protects our heart - but also keeps others at a distance.  It also fails to allow God to work in the lives of others that could perhaps learn from our scars.  It fails to put us in a position to help others as they are struggling.  

No matter the hurt or ugliness we have as a result of pain in our lives - these can be redeemed by God!  He doesn't want me to ignore or run from the pain, rather He wants to meet me and comfort me in the midst of them.  Then when we are able, He will use us to comfort someone else. 

Isn't that amazing?  God wants to use us in spite of our past - the pains, the poor choices and the times that we have failed.  Satan wants us to believe that these things render us useless, but the truth is that God uses these very failures to show witness of His love, His strength, His peace and His redemption.  

This devotion really spoke to my heart.  Isn't it cool how God so often sends just the right thing to you?  I was wondering about my usefulness and about the benefit of being real.  I was encouraged that this is what He wants.  Yes, it may come with some pain, but He will be there when it does come to comfort and hold me. 

So despite the wonderings, I'm wanting to be real.  There have been benefits to being real too.  I've had people share with me that God has used my experiences in their own lives - one in particular in a life-changing way.  How amazing is that?!  It is clearly God doing that - not me!  I am humbled to know that in the midst of my struggles that He can be glorified.  Thank you Lord.

I promised news on Eliana.  We saw the surgeon, Dr Rice, on Friday.  It was one of the shortest - if not the shortest - visits I have had at the doctor's office!  He looked at her site and confirmed that it is indeed granulation tissue - though not "bad".  It is something that just happens and will probably happen again.  He cauterized it with silver nitrate.  (It's like burning away the bad tissue.)  It didn't hurt her at all!  I'm to continue to do this (treat it with silver nitrate) every 2-3 days until it is gone.  If it reappears then I will do it again. 

I shared with him that Eliana was doing better eating.  She is routinely eating double what was her best feeding prior to surgery.  Dr. Rice said that was the goal and he thought she'd have it down in the next couple of months - but not to hold him to that!  LOL  I hope and pray that He is right.  He didn't want to change out her button which is nice, but I wasn't ready to go to that either.  He said the goal was to get it out in 4- 5 months after surgery so that she wouldn't need another surgery to close her up.  He said that he hoped this would be a good motivator for us.

Well, I thought on this throughout the day yesterday.  I do want her to eat more and more orally.  I'm doing what I can do - or at least I think I am.  Praying for wisdom if there are changes that I need to make.  We won't be seeing our feeding therapist of the next three weeks due to various vacations.  I would love to surprise her with some exciting feeding break-throughs!

Yesterday was her best day to date - well, since she got her NG tube in February.  She took 10.75 ounces.  That was just one ounce short of being HALF of her total amount for the day!  I was thrilled!!!  We sometimes do less as she is asleep during her feeds.  I'm wondering if I should try to start waking her for all of them?  We'll need to ponder on this one. 

Prayer requests:

*Continued improvement in eating.  I sometimes set small goals in my mind - which is silly since I have NO control at all over this.  I'd love to see her get to taking at least 1/2 of her foods orally.  She is frequently doing about 1/3 right now.

*Healing for her button site.  I think she has been in pain as she has not wanted to lay down on her tummy.  I'm hoping that this will be healed soon.  (The silver nitrate is a mess - and it stains - so it will be great to get rid of that!)

*Peace & God's vision as we try to get back into some routines with schooling, meals plans and hopefully soon field trips.  I have not been out with the children much at all since Eliana's been born.  We haven't gone out at all with her feeding pump.  I'm hoping though to do that sometime soon. 

*Yielded - I am praying that I would continue to learn what it means to be yielded to God.  Listening to His voice and following His paths for my life.  I wish that for all of you as well!

Thank you again for your patience with me as I've struggled.  Thank you for your love and encouragment.  I am thankful for the many, many times that others are the hands of Christ in my life.  It is a beautiful way to see the body of Christ in action.

With love,

Leslie  

 

Some sweet times

At times now I'm living aware of the importance of time - of making the most of the moments.  It's probably a good way to live all of the time.  Aware of the words I'm saying and choosing them carefully.  Saying "yes" more often to the children even when it may not be most convenient for me.  Taking time to make memories and to just have fun.  Choosing the best and not just the easiest.

We've had Catherine's girls over here most of the day.  It's been fun hearing the children playing and laughing together.  Sharing a meal together - well in shifts due to tending to the babies - but still nice.

The children played in my bedroom tonight for a long time.  I loved watching them and listening to them.  I fixed the girl's hair in rag curls.  It will be fun to see how it turns out tomorrow.  I hope it's cute!  They enjoyed giggling and being silly.  We had some good discussions together and prayers too.  I'm thankful for these times.  I'm also looking forward to more of them in the future.  I know it will be different, but it will just mean that I need to be more intentional with my time instead of casual with it. 

I could probably stand to be more intentional in all of my relationships.  Putting more thought into all that I do and say.  Examining my heart, my motives and my actions.  Making sure that I'm doing and saying the things that God wants so that I can become the person He has created me to be. 

I know that I've had much time to ponder, pray and think about things over much of the last year.  I've wrestled with God over a variety of things.  I don't ever "win" and I'm not sure why I struggle so at times.  When I'm afraid of the path that God has chosen, it's hard to just say "yes" sometimes, to surrender completely.  I've still got much to learn.  It's a good reminder for me to see how much I have to learn so that I don't become frustrated with my own children when they are struggling to obey or listen or learn. 

Tomorrow our dear friends will head out for their new home.  Please join me in praying for their transition.  There will be many changes and challenges facing them - though I know that God's loving arms will be wrapped tightly around them.  I know that He will care for them, led them and love on them.  I know that this is true for us too.  That doesn't erase the hurt and the sadness that we will feel, but hopefully peace will reign in our hearts and minds.

I'm feeling more at peace tonight than I have in quite awhile.  I appreciate those of you that have encouraged me with your words and prayers.  So many have shared stories with me that were so very helpful.  I'm glad that God is able to touch my heart through these and other means.  God is not through with me.  He has carried me - even when I don't feel it - and been with me all along.  I know this, but at times have to go through it again and again to believe it in a new way.  I'm thankful for a patient and loving Father. 

I'm thankful too for those of you that have been patient with me as I've rambled, ranted and cried.  I've made myself vulnerable and with that can come great comfort and also more pain.  It was a choice I made - though perhaps will make differently for the future.  I don't know.  For now, I am feeling God's peace that passes understanding.  I needed to wrestle it out myself with God.  My words though gave others a view to my struggles.  I hope that in some small way that God will be able to use my own struggles to help someone else. 

It's really not in my hands.  I know that He can do amazing things out of a small and sometimes unsightly piece of clay.  I'm willing to surrender.  It's not like a choice anyway though is it?!  Have your will Lord.  Mold me as you will. 

He is with me - as always.   

With love,

Leslie

Unbelief

God help me my unbelief. 

I know that God loves me.  I know that He cares for me deeply.  I am praying that I can really let go and trust Him.   It's not always easy though.  One more opportunity to trust.  Trust the One that loves me completely.  The One who has promised never to leave me or forsake me.  As someone reminded me, He has not promised an easy or even a happy life. 

A precious friend shared these words with me.  They encouraged me greatly and I thought someone else might need to read them as well.

 I was once told to let myself be weak and let Him be strong for me. It is like clinging to a rope and slowly getting weaker and being afraid of what will happen if you fall. As weariness over takes me and my grip slips, I cry out in desparation "Oh, Lord, I can't do this! I can't bear this. I can't hold myself anymore. Please, Father, help me!" Sometimes He puts His arms over mine and helps me hold on, other times He let me falls off that rope, the first feeling is of terror but landing in His loving arms and feeling surrounded by His strength is comforting beyond words. Which ever He chooses to do, dear Leslie, He loves you more than you will ever understand and He is so VERY, VERY near.

I know I must sound like I'm having a pity party over here.  At times I probably am.  I'm trying to trust - and at times not doing a very good job.  I'm trying to listen to God and fall completely into His arms.  I'm praying that God would help me to trust.  I'm also being completely real with my feelings and like I've mentioned before I sometimes wonder if I should be.  I wonder if I should just pour out my heart to God alone.  I wouldn't want to say anything that might hurt someone else.  I wouldn't want to say anything that would damage someone else's faith.  And honestly, I don't want to make myself vulnerable to more hurt.   

For now though, my heart does hurt. 

Eliana's last two feedings have been better!!!  Her feeding therapist thought she was in pain based on her response to touch while we were at her appointment.  Poor sweet baby.  She is also seeming a little constipated which might also affect her eating.  I hope that her lack of  feeding is based on some external factor like these that can be addressed and hopefully fixed!  I have great hopes that one day my little girl will be able to eat completely on her own!  Oh what a happy day that will be! 

I did have a bit of humor in my day - something that you might find funny too.  I'll admit it irritated me when I first saw it - but I also saw the humor in it.  We received a package today from the medical supply company.  I was hopeful when I opened it that finally the extension tube had arrived.  (This is the tube that connects Eliana's button to the feeding pump.)  We've already received 2 wrong shipments waiting for this tube.  Well, we got an extension tube - but not the one that we need.  The one we received is a "Male external catheter tube".  *sigh*  I know that I explained that this was for my infant daughter.  I did call today, but since it was after 5pm I wasn't able to talk with the person I needed to talk with and will need to wait until tomorrow.  This is the 5th wrong shipment we have been sent.  I'm really hoping that they can get it figured out soon!

Thank you to each of you that are praying.  I am grateful.  Thank you too for your words of encouragment and hope.  I appreciate them.  I am thankful to be a part of the body of Christ.  I am thankful for the verses of love and hope that you share with me.

With love,

Leslie

A Time for Mourning ...

My heart is aching.  Thank you for the notes and words of encouragment you have sent or posted.  I appreciate them greatly.  It's been hard over these months to deal with the changes in my life.  It's time for one more.    

In addition to that, Eliana is not eating well.   She didn't do too well on Sunday, but some of it was because she was asleep through a couple of feedings.  Between church, the doctors office and a meeting at my house, her sleep was very interupted.  It's plummeted in the last day. She was doing so well and I'm not sure what is going on.  She has been taking about one once at a feed.  About half of what she was doing.  I'm hoping that this isn't just a short phase - and something that will soon be corrected.

We see the surgeon on Friday about the problems with her button. I think that they will cauterize the site to eliminate the red swollen tissue. Please pray that the procedure goes well - no or minimal pain for Eliana. No infection.   I really don't know much about it.  I'm just willing to wait and find out more then.  The surgeon's nurse told me that the antibiotic Eliana is taking wouldn't help it at all with this issue. 

I'm struggling and find myself crying often.   It's been a sweet 17 years of friendship.  Walking through everything together. That is a really really long time. I just can't believe that in 2 days she will be gone.    I know we will still be able to talk.  I know we'll still be able to visit.  Yet I'm so sad to lose the closeness, the familiarity and the ease that we have now.

There are times when I feel like I've been walking in the wilderness - and it feels like there is no end in sight.  I'm feeling overwhelmed     I'm so tired of crying.  I long for a different time - back when things weren't so very hard - or better yet a new time when I'm better able to stand in the rain.  I feel very weak. - and need prayers for a stronger faith.  Thank you for your prayers

Love,

Leslie

The truck is here

***As I've written this and looked back over it I realize that it is utterly depressing.  I'm not sure if you will want to read beyond this.  Don't if you don't want to just read sadness.  That's all that is here.  I'm just overwhelmed with sadness right now.  ***

What a thing to get up to this morning.  My daughter walked in with tears in her eyes.  When I asked her what was wrong, she told me that the truck was in front of their house.  It didn't really hit me - until I saw it for myself.  I remembered the last time a truck was there  - 7 and a half years ago - and how very happy we were to have our friends moving in beside us.  And now ... something we never thought would happen. 

I want to be there.  I want to help, but I can barely keep it together.  And honestly I'm not all that much help either while holding Eliana.  So I'm here.  Just sobbing.  I'm tired and weary from this ride.  I'm ready to get off.  Yes, I know that this is not the most difficult thing people are facing.  Yes, I know that it isn't a life and death scenario.  Yes, I know that we'll still be friends.  I also know that I am going to miss her - and her family - so very much.  How often is that someone is blessed like we have been - to live right next door to each other?  I am thankful for the time we've had.  I'm also sad for the time we had thought we'd have - and won't. 

Just last night I was reading an article in a homeschool magazine about special needs children.  I'm sure at a different time it would have been - or maybe will be - encouraging.  For now, it was just depressing.  It talked about the weariness of caring for a child with special needs and how most people just don't understand.  Having walked on both sides now, I realize how true that is for me.  I know that I tried to be helpful and supportive.  I did the best that I could and hope that I was helpful.  I can see now that I should have done so much more - though I couldn't have known that then.  I saw how hard it was which is probably why I prayed over and over and over again that Eliana would not have Down syndrome.  Yes, specifically that prayer. 

That sounds horrible I'm sure.  I love my little girl so very much.  I wouldn't give up having her for anything.  I am so very thankful Eliana is in our family.  I have watched my precious friend love her little boy so very much.  I have also watched her struggle with the weight of caring for him - the changes in how you do things, the endless therapies, the years of stages that you hope that they will one day grow out of and the huge unknowns about the future that are so very different from the unknowns with your other children.

When Eliana was born, we both heard over and over again how blessed I was to have a friend that had a child with DS.  Honestly, at the time I didn't really like hearing that.  It was as if somehow the road would be easy.  I think what they meant was that I would have someone walking the road with me that not only loved me, but that understood the weight of this path.  I have struggled at times with sharing the weight - wondering how others would take it.  Some have told me to be happy for the good things.  I do try.  I can't ignore the pain either though.  It's hard to balance sharing the love and joy that a special child can bring while also being honest about the fears and struggles that come too. 

I don't understand.  I feel so much now that I don't want to feel.  This is hard - so very hard.  Why is this a part of God's plan?  Why now? 

I hesitate even posting this.  It's raw and not very pretty.  I'm weary and hurt.

Thank you for your prayers.

Leslie