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

Fears ... tears ... friends ... encouragment

So many things to say - yet my mind is such a jumble and my heart is so heavy.  I wonder sometimes if things had been timed differently would it be so hard?  It's just been so much for so long.  From a physically VERY difficult pregnancy to all of the many issues we've faced with Eliana, from sleepless nights to saying good-bye.  I'm weary and tired.  And very sad.  I'm struggling and really appreciate your prayers.

I have a new request for Eliana.  The site around her "button" has been red and irritated looking for a week or so.  I've been treating it per the dr's orders.  This morning I noticed that it looked swollen, very red and much larger coming around the button.  It's just not right.  I took her to see the ped on call today and he prescribed an antibiotic for her. He said though it was weird to say - that he hoped it was an infection -  as this would clear it up.  If it isn't better in a couple of days, I will need to go back and see the surgeon.

I asked if there were anything that I could have done - and he quickly told me that it wasn't my fault. I asked if there was something different I could have done and he said no. I'm not the best at attending to details and I would hate to think that this would hurt my sweet girl.  He encouraged me by saying that even though he didn't know us that he could tell she was well cared for.  He also told me that he was surprised to see this as her surgical sites have all healed well.  (It's granulation tissue for those that are in the know medically.)  I'm not sure what all of this means - and don't think I want to know right now either. My mind is full and my heart is heavy. I know that the "site" is not completely healed yet and am hoping that one of the problems won't be that it closes or becomes compromised in any way. I'm not sure I can deal with any "what ifs" so I'm choosing to stay in the dark.  I know - not the best way of dealing with things - but it's all I can do right now.

I hosted the first Mom's meeting for our support group today. Only I wasn't here to start the meeting since I was at the doctor's office so thankfully two friends took over for me.  Thank you Lea for the food and help with the meeting.  Thank you Catherine for stepping in and welcoming everyone and helping too.  Something we are used to doing for each other.  Something I am going to miss.  We have organized things for this group for a long time.  I really don't want to do it without her.  Today as people were making introductions (we had new folks in our meeting) we said our name, children's names and ages and were we lived.  (We live in a metro area with many cities in close proximity.)  When it was Catherine's turn and she said she would be living next door for another 72 hours ...  I did pretty well holding it together - much better than I'm doing now.  It was a sweet time with other moms.  It always has been.  I was thankful for friends bringing food and drinks as I hadn't done that.  Lots of hugs too.  I appreciate the care of my friends so very much. 

Someone asked me today how I could "do so much'.  That question surprises me (though it isn't the first time I've been asked) as I don't feel like I do "so much".  I didn't really know what to say.  I pondered on that more today and realized that much of what I'm able to do is due to having wonderful friends.  I am truly blessed beyond measure with an amazing group of friends.  There are many things I don't have to do - or learn - as I can depend on friends to pick up these areas.  (Learning about nature for example is a huge deficit for me - and I'm fortunate to have friends that know so much.)  I have a group of dear friends that have helped carry this load, helped to plan co-ops, camps, field trips and events for our group.  As I reflect on my friends my heart is filled with thankfulness.  For you dear ones that are reading - thank you!  I try to be careful about not talking about people by name - don't want to embarrass you if you don't want to be listed.  (Sorry Catherine - I know you would have rather remained nameless too - but you have already been named.)

I feel  I keep trying to write what I'm feeling and I'm having a hard time. I'm not depressed - just so very tired, weary and sad. I don't think I've ever been in such a hard place for such a long time. I've cried more in the last 8 months it seems than I have in my entire life. I never thought of myself as particularly emotional - but I couldn't say that now

I've typed and deleted and wondered about what to write.  Putting my thoughts to paper just leads me to tears.  I keep wondering if one day things will ever be like they were before - I know that the answer is no.  Please keep praying for the many hearts that are aching due to this move.  My oldest son doesn't understand why I don't just "look at the bright side" of things.  I told him that I didn't see a bright side.   I see something that God has allowed or is orchestrating that right now just hurts.  I know that He will work good in this.  I am trusting - or trying to - that He will do some amazing things.

Until then, I'm just sad.

One last thing.  I would love if any of you could post ideas, verses, poems, etc. of encouragment.  I'd love to put these together for Catherine.  If  you have ideas to share, please send them or post them here.  I've received some neat ones already from friends.

Thank you for your prayers and support.

With love,

Leslie

"Our House is Yucky"

Or so says my 3yo.  He doesn't really think it's yucky.  His motives were clear to me soon after his next words came out - "I go to Catherine's house".  Hmmm ... is that all it takes to visit a friend?  Thinking that your own home is yucky?  LOL  Sometimes I just love the simplicity of a child's mind.  The ability to ask for what you want or need - albeit in a round about way.  This child of mine is such a funny little fellow and his way of thinking just tickles me at times.  I love his laugh and wide grin.  He does bring joy to my days.

I've tried to explain to him that our friends are moving as I don't want it to come as a complete surprise.  I don't think he understands though he responds to me that he does.  To be honest, I really don't understand either.

"For My thoughts are not your thoughts, Nor are your ways My ways," declares the LORD.

Isaiah 55:8

Just yesterday Catherine's youngest daughter said to me "Do you know we are moving in six days?"  Oh yes sweet child.  I know.  I know it far too well and think of it much too often.  We are trying to move about out days filling them with projects and fun - and still getting done the final things that must be done.  At times we can be practical, but as the pictures come down and things get put away the starkness is a sign of all that is yet to come.  It's depressing.

A sweet friend noting my sadness over this move asked what I'd be like when it was time for my children to move out.  I can't bear to think of it.  I know it is coming too - and far too soon for my liking.  I tear up just thinking of that day.  I love being with my family and having them all around me.  So I try not to think of it often - but often enough to remind me of what I want to be doing with my days so that I won't have regrets.  Often enough to remind me to choose the important things and not fret (so much) over the things that really don't matter.  (I still have work to do on this!)

That is a little unrealistic - wanting to have no regrets - because of course there will be regrets, but hopefully not too many.  That's a voice that I'm hearing now - the whispers of times when I should have done something differently or when I have not been the friend that I should have been.  What a sweet blessing though to know that she knows my heart.  She knows me.  It's a very safe friendship.  I'm sure that there were times I took for granted the time that we had and the convenience of being so close.  Isn't that often the way that it is though?  I know that I can't expect not to make mistakes.  My heart is just so very tender now - and has been for quite a long time now.  I keep trying to focus on God's voice as the whispers that aren't from Him can really be a burden - and a source of further pain.   

Oh, I need to focus on some happier thoughts.  Catherine and I have been working on making planners for the year.  This is a new project for us and it is a combination of the FIAR planner and personalized forms.  (Catherine is a whiz at making beautiful forms!).  She has finished hers and hopefully mine will be done and ready to use by tomorrow.  This is one of  many projects we have worked on together.  I'm not going to say it is the last either as I know we can still work on things long distance.  It will be the last one that we have the luxury of just running back and forth to each other's houses with pages, ideas, and requests for help though.

A big PRAISE update on Eliana.  She had her physical therapy on Wednesday.  This is usually a fun appointment as I am encouraged by what she can do and not overwhelmed with what she can't do.  An attitude I'm sure to have lots of time to practice and learn. 

Eliana's latest thing is to get up on her hands and knees  - and rock!  She is so cute and looks like she is ready to go somewhere.  When her therapist noted the things she was able to do and marked them on a graph she had really shot up.  This graph shows typical developement for a child.  Eliana has never been on the curve - but now she is on it!!!  Happy tears filled my eyes as she shared this.  She is between the 10th and 25th%.  This is still "behind" a typically developing child, but given all that she has been through, I think it's pretty amazing!  Way to go little girl!

Eating continues to be going well.  She is eating from the bottle each time it is offered.  She hasn't refused it now for over 2 weeks.  Yippee!!!  Today she has had 3 feedings and is already up to 8.5 ounces.  This is great for her!  One more good feeding will have her reaching a new high for eating.  I appreciate your continued prayers for her feeding.

Need to run finish dinner.  We've started the main dish as a school project for my younger boys.  (It's the Amber on the Mountain meal for you rowers.)  Catherine is working on the side and hopefully we can muster up the energy to make some cookies to go along with it. 

More later as I'm working on a project and would love some help.

With love,

Leslie

Time ... why is there never enough

There are moments when time seems to drag ... but more often than not, once you have reached adulthood, time seems to fly.  This is especially true at some moments more than others.  This is Catherine's last week here - and I just want time to stop.

I haven't been able to type much as my days are just too full.  (I've certainly remedied that this morning as I ramble on here.)  We are trying to squeeze out every last moment of this last week.  Back and forth to each other's house often - and late into the night too.  We've been talking, working on making our planners (we've always loved to collaborate on things), sharing meals and more. 

I find myself reflecting on so many things.  It seems that every place holds a memory - from our homes to roads we've travelled, times we've shared and places we've been.  Memories keep flooding my mind - many of them from long, long ago.  We've watched our children grow up - and  had planned on doing it until we were old.  *sigh*  We've done a lot of growing up ourselves.  I really don't understand God's plans.  That is true for much of what has happened over the last 8 months though.  Don't get me wrong - I can see good that God has wrought through this.  I am thankful for the ways that He has blessed me in the midst of this time.  I just wish that it hadn't all been like this. 

I remember hearing a speaker (Sally Clarkson) talk about her daughter going through a trial and hearing God ask her if she would rather her daughter be deep and godly or shallow and happy.  Yes, we all want deep and godly.  Yet most of us don't want to walk the path to get there.  Who would?  While I think we do look back and are thankful for the path and it's results, but it is still hard to walk it.  I also remember my not so godly response as I turned to Catherine after hearing that question and said that I was voting for some time of shallow and happy.  This was in March - I had been through a very difficult last three months and heart surgery was still looming in front of us.  I didn't want to be shallow.  It just seemed that happy came with no worries or cares.  I wanted happy - but is that really what I wanted? 

Or am I looking for joy?  Something much deeper and richer than just being happy.  Something that isn't a result of the circumstances of my life, but rather is a result of God in my life.  Yes, I think that's it.  I want joy.  My sweet Eliana Joy is a good reminder to me of that.  I'm guessing that she will continue to remind me of so many things.  That she will continue to teach me many things including what really is important.  Lessons I thought I had learned, but clearly not to the depth that I needed.   

I know that through all of this, that God desires good for us.  I only wish that it were not so very different from the good that we desire for ourselves sometimes.  Doesn't that sound awful?!  Like a small child demanding my own way.  I know that God can use this for good in us - but why does that so often involve pain?

I remember many years ago when Catherine and I were doing a Bible study together.  I think at the time we had only 2-3 young children between us (We have 10 now.) and we weren't yet neighbors.  We were talking about people that had a deep faith and how so often it seemed that this came through trial.  We both observed that we really hadn't had much happen in our lives in the way of trial.  We both desired a deeper faith - but honestly didn't want to go through fire to have to get it.  We wondered if this was wrong - to want the benefits without the work.  I don't think it was wrong to want it that way - it's just a natural response.  We all long for a deeper walk with God.  I wish that it could come without having to be broken.  Pain leaves such deep marks - holes even.  Maybe though we can't have joy without having the holes that pain causes.  Maybe joy can only flood into our spirits when there is room.  Room that can't be made on our own.  Perhaps the happiness that comes with being shallow is because there is no depth for the joy to pour into.  I'm not sure.  I pray that I would leave myself open to God - to flood my heart with His joy, peace and love. 

I wanted to give an update from Eliana's appointment with cardiology on Monday. 

It was a day of testing - EKG and echo, but thankfully no bloodwork!  All looks great.  Her heart is doing well.  We won't have to go back again for another 6 months!  What a change after almost weekly visits for awhile.  We thought 2 months seemed like a long wait until this appointment.  We have been blessed with a fabulous cardiologist.  I'm thankful for him.

We also got the results of her bloodwork - NORMAL.  No thyroid problems or leukemia at this time.  Thank you God!  I know that everyone wants to hear the word "normal" on test results, but honestly it has taken on new meaning after having some not normal results on things.  

Feeding is still going well.  We are about the same with her taking at least one and often 2 ounces at a feed.  I'm hoping that will increase over time.

G-tube button is still popping open, though not as much if I keep a onesie on her.  We are tentatively scheduled to get a different button in Sept, though honestly I'm not sure if I want to do that.  I don't know that I want to trade the problems I know for a new set.  Does this make any sense?  I wonder if we can just keep this one and hope that it won't be needed for long!  A girl can hope, right?

I'll try to post pictures later in the week when my dh returns home.  (I don't know how to upload them.)  Please continue to pray - pretty much the same as the last entry.

I am abundantly blessed and yet my heart just aches.  I have joy and hope in the One that loves me.  I know that trusting Him does not mean a life without pain - even Jesus had much pain in His earthly life.   I know that loving and serving Him does not mean a life without heartache and sadness.  Jesus experienced this too.  I am thankful for a Father that loves me so very much.  I can't imagine walking this road without Him!

With love,

Leslie

Upcoming week & a few pics

"Be glad and rejoice for the Lord will do great things."  Joel 2:21

Here is a more recent picture of Eliana.

This was on a birthday greeting I received this week.  I love it.  It's a wonderful verse for me to meditate on as I can find myself just feeling sad at times.  I know that if I fill my time praising God that there won't be room for feelings of defeat or sorrow.  Now, I know it isn't a magic wand to wave things away, but is a good start.

Here is a picture of my morning birthday greetings - with food, cards, gifts and sweet smiling faces!  It was really a sweet time with these children that I love!  (Christopher isn't in the photo as I think he was still sleeping.  He doesn't rise as early as these early birds do.) 

Our calendar isn't looking too full this week - for which I'm thankful!!!  I do enjoy "getting out", though I also appreciate quiet days at home too.  Honestly, our getting out these days usually involves medical appointments and that doesn't really count. 

Monday - We have an appointment with the cardiologist.  I'm not sure if she will be having any testing done - blood, EKG, echo, etc.  Please pray that all would go smoothly if she needs to have any testing.

Eliana's button site is still red and has not improved.  I'm hoping that the cardiologist will be able to help.  I might also try calling the surgeon's nurse to see if I can see her since I'll be over there tomorrow.  I just want to know that what I'm doing is the right thing - and not to miss something which could cause further problems.

We've also talked some about Eliana getting a new/different button.  At times it seems like a good idea - like when the button pops open and makes a big mess.  At other times though I wonder if I'm just going to be trading problems.  KWIM?  Would it be better to just keep this set of problems that I know?  As always, I wish for wisdom and clarity in knowing things I really know nothing about.

Tuesday - Feeding therapy.  Eliana continues to do well.  She has been taking at least 7 ounces per day.  She will often take 2 ounces at a feed which is so encouraging to me!  We still have a ways to go, but at least she isn't refusing the bottle altogether as she had been doing.

We are needing to figure out more on feeding solids.  We haven't done much with this, but know that we need to tackle that too.  She will try some and doesn't seem to mind it.  Most of it comes back out though.

Wednesday - Physical therapy.  This is one of the times I feel most encouraged.  Eliana has just started getting up on her hands and knees in the last couple of days.  She looks like she is getting ready to go somewhere!  I'm not sure I'm ready for that yet.  As if they ever wait until we are ready!  LOL

Thursday - This has been our "fun day" for so long.  It is the day we do our field trips.  We took our last one just 2 days before Eliana was born.  I have really missed these outings.  I miss this time with my children.  I'm nervous about even thinking of resuming them.  We are planning a park day for next week with our FIAR homeschool group.  This will be our first outing - the children and I - that lasts any length of time.  It will be our trial run to see how  "portable" Eliana and this feeding tube can be.  It's really a shame we haven't been able to travel with her as she has been such an EASY baby in terms of fussing and temperament.  She has been an easy baby - it's just the medical stuff that has been hard.

We are having our house cleaned again on this day.  Thanks Mom!  It's so nice to have this done - everything cleaned at one time - even if only for a short time - it's still nice.  I do need to pick up before they come though as some of our treasures (aka playmobil parts) might look like trash to someone else.

Friday - Another day of nothing.  Hopefully the children and I can do some fun things on these days - art, experiments, reading books and whatever else strikes our fancy.

Prayer requests are much the same:

*Eliana's feeding to continue to improve!  Wisdom in knowing the amounts to give, spacing of feedings, techniques to use in holding her and the bottle and more.  I am prayerfully hopeful that one day she will again be able to eat all that she needs on her own!

*Eliana's button site and surgical site are both red.  I think maybe she is trying to "pop a stitch" at  her surgical site.  It doesn't look infected, but is red.  The area under her button is also red.  I've been putting bactraban on it, but it isn't healed properly.  Also pray that the button would just stay closed when it is supposed to be closed.  It really makes a mess when it opens.

*Peace for my heart.  I feel in such a swirl of emotions some days - and the weight can seem so much.  I'm trying to take naps when I can as I know that lack of sleep doesn't help at all.  Oh, I do look forward to the day when I can get a full night's sleep!  I know that I need to hand over this load.  I do better on some days than others.  I appreciate your faithful prayers.

*Vision as we start back our schooling.  I want to make the most of our time and not fill it with unnecessary things or pursuits.  I want to  spend our time doing the "best" things and not just "good" things. 

*Blood test results - We haven't heard back which I'm hoping is good news.  Perhaps I'll learn more tomorrow?

Will try to post more later.  I want to share some photos and some fun from Sat.  ETA:  I've put in a few photos and here is one last one of me with my girls.

With love,

Leslie

Birthday and more about our week

I had thought on my birthday that I would write a list of all of the blessings I received on that day.  From early morning birthday wishes via email (before I went to sleep) to messages on the FIAR board, to a chorus a precious voices singing Happy Birthday to sweet friends notes, cards and calls. 

My youngest children of course were up early.  Only Christopher & I ever want to sleep in.  LOL  He gets to on many days and I'm looking forward to my turn!  Rebecca and Joshua cooked a breakfast for me to have in bed.  They brought up the tray of delicious food (bacon, grits, biscuits, juice and milk) while singing to me.  They also had many gifts for me to open.  Daniel was quite taken with the gift he had presented to me - a candy bar - and carried it around for quite a long time examining it and asking me questions.  I'm surprised he didn't try to eat it!  My sweet girl gave me 4 cards!  Two she had bought and two she had made.  All were very sweet and indicative of her tender heart. 

She tried to corral the boys so that I could rest after breakfast.  I tried to sleep amid the boys coming in and out to ask me questions or tell me happy birthday. 

Catherine brought me a yummy smoothie in the afternoon.  For dinner Roger and Christopher cooked (low country boil - shrimp, corn, kielbasa) a great dinner.  Christopher also made me a CD of many of my favorite songs.  It was a thoughtful gift from him.  I am truly blessed and have much to be thankful for.

Other happenings this week as I'm somewhat behind in my writing.  I'm behind in so many things that I feel I shall never catch up.  Though don't we all feel that way to some degree?!

Physical therapy - All is going well.  It's fun to see Eliana learning new things and for me to learn new games and ways to play with her that will benefit her development.

Feeding therapy - I told our therapist that since the last meeting she had greatly improved!!!  She has not refused the bottle since July 31!  This is a wonderful praise!!!  She typically will take from 1-2.5 ounces at a feeding.  Over the last week she has taken from 7 to 10 ounces per day.  This is up from 4 being a great day in the past.  Last night she took almost 4 ounces!!!  I was thrilled.  I was choking back happy tears.  It's times like this that make me think that maybe there will be a light at the end of the tunnel.

Keepers of the Faith - We belong to a group of families that plan and teach various skills, hobbies, crafts and skills to the children in a variety of areas.  It is similar to scouts in that the children work towards earning badges.  There is a Christian focus to the program.  We had our planning meeting for the year last night.  It was during this time that Eliana had her great feed!  She had been asleep through most of the meeting and had gone a little long for her feed - but it was so worth it to get such a great one!

Homeschool - We are plugging along.  We haven't gotten done all that I wanted to this week, but all in all we had a good week.  It's been fun watching Isaiah learning to read.  I'm hoping that we can get into a good routine so that we can be more productive.

Medical equipment - We have had quite the saga regarding getting the items we needed.  This week I received a shipment of NG tubes - that we no longer need.  The kicker though - they were still the wrong size!  This is the 3rd time they've sent the wrong size.  I called today and talked with several of the gals and hopefully we'll have it straightened out soon.  Later this afternoon I received another package and it's a new extension to the pump/button.  It's also the wrong one!!!  Lastly, I received a bag in which to carry her pump that is supposed to help make it easier to go out.  I haven't tried it out yet, but hope to soon.  the surprise to this one was the price tage - $400 for a nice backpack basically.  I'm thankful we have insurance.  It's amazing to me the price tag on some of the medical equiment/supplies.

More later as I'm about to fall asleep.  I want to upload some photos and share a verse. 

ETA:  It's morning now and I have a few moments before Catherine and I head out for spa pedicures.  Happy Birthday Catherine! 

Love,

Leslie