Thursday, December 20, 2012

The Power of Prayer?

I have a bunch of random thoughts.  They are not going away, so I find myself at the computer on this snowy day, wanting to put down some of these thoughts.  Maybe these are things that you already know, but they have been things God has slowly been revealing to me through this journey.  I think I am just now making sense of them!

Prayer, it is the most powerful thing we believers have.  It is our line of communication with God.  It is the Facebook, the blog, the text, the instant messaging of our world with God, our Father, our Savior.  It is how we express what is on our heart, the thoughts that are not even formed in our heads, it is a way to get our feelings and frustrations out, to make a plea for our requests.  It is how we have a relationship with God.  It is how we put into practice our requests for others.  It is a powerful thing.

So, often times I use prayers as things that I want.  I want it to work out this way, I think this should happen.  I am bold in praying often times.  I often times pray for things that people say are impossible.  Example, for Lydia's esophagus to lengthen.  While most times they are things that I think will benefit me, my family, my Church, loved ones, I really have no control, no clue as to what is best for me.  I think I knew this before, but I think I understand it now.

So when Lydia was in the hospital, I prayed boldly.  Often times, as much as I don't want to admit, I prayed with blinders on.  I feel, God, in this situation you need to do this.  I would like it, God, if you would make this, this, and this happen.  However, that is not how God works, or how prayer works.

While we should make known our requests, all things are going to work for the glory of God and for our good.  That means, what we pray may not be for our good, but to bring glory to God.  That means that what I pray may not happen how I want.  I need to have an open mind to this.  I need to really understand this.

So, often times, I have prayed and said, God I would really like this to work out this way, however, I would love it if you could teach me, strengthen my faith, and bring glory to you.  I understand that God's ways do not make sense in this world.  That the way God would have it done often times seems backwards to me.  That is where faith comes in.  I need to trust that however God works it out will bring Him glory and will be for my good.

I have been shown this, not only taught it.  I see some of my requests that I made about Lydia and if those were answered what a nightmare it would be now.  I did not know best, I only knew what was affecting me in the now and speculating what the future was to hold.  God is there, He knows, why should I worry about it.

So I have the question mark on the end of the power of prayer because I have been following a little ones story and the mom keeps talking about the power of prayer.  She portrays that prayer only works when it is working out in her way.  Prayer is working when the child is doing what she wants.  When the numbers are how she thinks they should be, when she is able to hold her child, when she is able to get out of the hospital when she wants.  I remember those days, and I was probably much like that at times.  However, the power of prayer is to open our hearts, to make our requests, but to remember that God is in control, that God will work it for His glory and for our good.  Often times we don't even know what our good is.  I think about that, when we were pregnant with Lydia I just wanted a healthy child.  However, I did not realize that I needed her, that she would complete me just the way she is.  God is good...He knows us better than ourselves.

A wise friend told me once that she use to pray and ask God to change her husband.  She would have this laundry list of things.  Then she changed how she prayed and asked the Lord to draw her husband closer to Him.  When her husband is living right with God everything else will fall into place.  How that mind set has changed me.  It has opened how I look at prayer.  I find myself, now, in prayer constantly.  A lot of judging thoughts are now replaced with prayer, a lot of confusion is now replaced with prayer.  I understand it a bit more, I have a better relationship with my Father.  I don't completely understand, but I know what I need to do.

These children that were killed in this deadly shooting just a week ago, many have said were taken too soon.  It was all part of God's plan, He allowed it to happen.  The reasons are unknown to us, and the parents and siblings, the community or many of us may never really understand.  However, I know that it was to bring glory to God and for the good of those affected.  A hard concept.  One that we don't know how to handle when we are in this world.  Thankfully I am not, I believe and I don't need to understand, but I need to trust.  I need to know that God is Lord of my life and I am accountable only to Him.  God allows it to happen.  He disciplines the ones He loves, just as we discipline our children for their good.  We all need those boundaries and slap on the hands to know what is expected of us, to grow and to learn.  It really is a wonderful thing in the picture of things.  Please know I am not trying to minimize what these families are going through.  I am just simply applying what I have learned to every situation I encounter.

Random thoughts, yes, but I just wanted to share with you what God has been putting on my heart.  Especially with some of the stuff that has been happening in our lives.  Lydia's shot continues to be denied, but I don't worry about it.  Often times I don't even think about it, God has it under control and I will trust Him.  I know that He will bring glory to Him and it will be for our good.  Our tenant situation.  While stressful, I have been learning about praying for our tenant and realizing that it is not about right and wrong.  I am learning how to let God be in control, even when it does not make sense.  I know that even in these situations God has been there, He knows what is best for us, and I just need to trust Him.  What a great peace I have had because of this.  He is so awesome and when I just let Him be, things are so great!

One last thought.  Last night we dropped our girls off at Awanas and Ellen's class recited Luke 2:1-7.  It is so awesome hearing of the Christmas story, again.  Afterward the song Mary did you know was sung.  I was just struck, almost to tears.  How amazing the Christmas story is.  Jesus took on human traits, Mary delivered a Son who would deliver her.  How amazing is that.  Jesus was perfect while He was here in the flesh...something that we will never accomplish.  I just love that song.  So as we prepare and hurry around getting the perfect everything, don't forget about Christ.  He is the reason for the season....He is the most perfect Christmas present, message, name it.  It is one amazing story...please share it and make sure to keep Him as the focus of your celebrations.

As Ellen reminded me today, we were baking all kinds of goodies, and she tells me that she missed the time we spend together doing those things last year.  She said this is the best December ever because we are together cherishing these moments.  I love that girl.  How awesome that even at 6 they understand and know that. 

Saturday, December 15, 2012


I find myself caught between things of this world and things of God.  I am so upset that I just cannot let go of the things of this world and let God take over.  I have to hold on.  I just am being selfish is what it all comes down to.  I think I am better than God and I want what I think I should have, shame on me.  I know better than that.

I have been tested a lot lately.  I would have to say especially financially.  While we manage to pay the bills every month and God provides way beyond our needs, He even allows us to be very generous with what He has supplied us with.  It still is not easy.  We have this looming denial from the insurance company.  They have denied Lydia's shot.  This is a shot that could save her life.  But it is a preventative measure, so they are not wanting to pay the $2000.00 per shot.  I cannot deny my child this, it could cost us her life.  I am leaning on God to provide.  We are currently fighting this over and over.  He has gave me great peace, but I do hear that voice in the back of my head, how are you going to find the money to pay?  God will provide for us, He has already shown us that, I need not worry, but I find myself caught.

Our tenant situation has been dragging me down.  We are taking a lot of risk there now.  Again, we are trusting God will see us through.  It has been getting me down huge time.  I am learning how to be patient and not put myself in the front of the situation.  I want to just yell and scream and not be in a Christ-like mannor.  Most days it makes me sick.  However I know that God will be glorified and lifted up.  I know that when I stand before Him I can say that I showed Christs love to our tenant and I did what God would have me to do.  It is hard because it is not the way of the world at all.  I know that God will be glorified in this situation.  It is hard to say no to the world and yes to God.  I would have to say especially when it is earthly and a house.  But that is not important, I need to store my treasures in heaven.

Then there are just all of those small things that continue to happen on a daily basis.  The unexpected bills and taxes and so forth.  But with it all, I feel so selfish for even feeling this way.  I look at my child's eyes looking back at me and know how rich I am.  How can I be in this place?  Conflicted and understanding, troubled and completely peaceful. 

In light of what just happened, I am beyond rich.  There were people that could not tuck in their children last night.  I had the added blessing of tucking in two more special blessings (yes, five little girls sleeping in one room).  I understand what it is like to "almost" lose a child.  We had to prepare several times for saying goodbye to a child.  God chose to give her life for many reasons, and I know many more that I do not even understand yet.  I have been on that road where there was a large unexpected road block.  I had to get around it.  I had to lose everything to gain eternal life.  It was the biggest blessing I could have ever received.

So selfish to be caught in two places at once.  I understand that fretting over finances, or things that may possibly happen is not worth it.  I am robbing myself of the joy that God has told me to enjoy, I may be robbing someone else of hearing the Gospel that God wants me to share.  As many people found out yesterday, tomorrow is not promised.  I am sure there are things that they wished would have been different.

I have to say that is one thing that I am so thankful for.  God has allowed me through many trials, hurt, sorrow, joy, and love, that I need to embrace every moment.  I fail at it most times, but I was thankful that I did not have to hug my children extra tight because I do that already.  I was thankful that we have made the sacrifices to allow me to stay at home and have a child attend a Christan school and be involved in their lives.  Every moment I try to embrace to the fullest.  I am thankful for that lesson.  That is a lesson that I take very seriously.  Praise God for that.

I just needed to start to form these thoughts.  Even as I write I am almost embarrassed as I see how completely selfish they are.  I should know better.  Where is my faith and trust?  Shame on me.  But I am also thankful that God has a hold of me and has shown me that.  I no longer get in these ruts where it just seems unbearable, I am caught, understanding where I should be and trying to let go of the selfishness.  Just another sign that God is working in me and teaching me...I am growing!

God will provide and I can be assured that it will not be anything like what is in my mind.  It is going to blow me away.  I will most likely have to endure some kind of trial, but there are so many blessings in the tears.  There is so much good in the pain. 

As I told my children the other day, we just need to look around and there is beauty everywhere.  God is constantly with us.  I need to break free from my selfishness and cling tighter to Him.  He provides, He loves, He will see us through anything!

Monday, December 10, 2012

Letting Go of Perfection

I have heard that phrase more than once, "Let go and let God."  I love it but it has always bothered me.  I am not really sure of what that means.  I feel like I am letting go, okay God now it is Your turn.  God, where are You? 

God has patiently been teaching me this and I am starting to understand what it means, just a little.  I guess after all that we have been through we were driven into God's Arms.  We had no choice, what we had to endure was much bigger than anything we could handle on our own.  However, now that times are good, we have hurdles but much different than before, what do you let go of and let God.

Everything He has told me.  There is not one thing on this earth that is mine, it is all His.  This is a hard thing.  I need to let go of my children, my time, my money, my husband, my stuff, my home, everything.  Nothing is mine, it is all His.  And I should do with it as He wants me to, not I.  Hard stuff.

Let me paint a small picture of what I am talking about.  Because, I have found true joy in letting go of perfection, I actually have found perfection and joy in the places no one would think to look.

Christmas time, the cookies are baked, the presents are wrapped, the tree is trimmed, the house smells of Christmastime, the nativity scene is set, the stockings are hung.  Yeah, you get the picture.  We have done most of that.  I say we, because this year I decided to let the kids do as much as they can.  Yes, I have prayed very hard to not get in the way, to create the memories and watch their joy.  Man, I am such a stumbling block in my own path of what I desire.  Kind of funny!

I have allowed the girls to bake the cookies.  They used at least a jar of sprinkles on each cookie and I am still finding sprinkles scattered through out my house.  But the girls could not be more proud to present these cookies to their friends and family.  The are so proud.  Each cookie is something different (you could not tell from just looking at the shape) but they have created stories out of each cookie.  They remember decorating each of the cookies and they are not afraid to tell you.

All of the presents are wrapped.  They are far from perfect in my eyes, but my girls tell of a different story.  "When grandpa opens this one he is going to see that I put extra tape here because not all of the corners came together quite right."  Or I am adding a bow to this one because so and so will like it.  I also allowed them to write the to and from.  My husband had to remind me several times that they are still learning to write.  They are still young.  But what great practice for them.  We only had to rewrite a couple names.  And they are so proud.  They have told everyone.

Our tree is decorated and oh so pretty, however, lovely Lydia has found out how to move and pull herself up on the tree.  Everything is rearranged and at times the lights are totally off.  We laugh at how Lydia is exploring and destroying.  She loves to chew on the string from the tree skirt, so often times the presents are thrown out and she has the strings in her mouth.  We are just waiting for her to practice opening presents herself!

It is anything but a perfect picture of Christmas, but it is so perfect.  These are memories that the girls will have and ones that Eric and I will treasure for a lifetime.  After all, who I am trying to impress, what am I holding on to.  I am not going to be winning an award for the best wrapped present (I really am not that good at wrapping them anyways).  But I will make memories, things that there is no price on but worth more than all the gold in the world.

I am sure that is much like the birth of our Savior.  Who would have expected the Savior to be born in a manger?  I am sure that is not how Mary envisioned having her first born.  But it was perfect, just as it was suppose to be.  There was pure joy in that moment, there were memories made, things that people talked about for years to come.  It was part of the Creator's plan and how awesome it is!

I guess as I look at what God is trying to teach me, I need to apply that to Lydia as well.  This is certainly not what I thought of, however, I could not have imagined my life any differently in the past two years.  She may not be the perfect child in many people's eyes, but she is the perfect child for me.

I may get frustrated many days because she is not where most 16 month old children are.  But I will be there is such joy when she does accomplish something because we understand.  We know how hard she is working.  We know exactly what she had to overcome to get to this point.  There is pure joy in this perfection.  I need to remind myself too, that there is no award for crawling early, there is no award for talking early.  I just get to use these moments to feel her arms wrap around my neck and hug me, to see her with her determined look and accomplish something.  I get to celebrate with her and experience this joy.

I get to hold on to my child much longer than most people do.  Everyone says they grow up way too fast.  However, when we have a child that does not grow up way to fast, we are quick to put a label on them...often times forgetting what we just wished for.  Ironic, maybe, but I will call it perfect.

I am so happy that God is teaching me to let go of these moments.  To let Him in and experience this joy that often times is not found.  I get to find joy and pure happiness in moments that most people spend their whole life searching for. 

God is still working on me.  I still have a long way to go.  But I am so happy that God is teaching me to let go and let God.  To let go and embrace the moment.  To let go and let my children (or whoever it may be that God is using to teach me).

Friday, November 30, 2012

Lesson learned....maybe!?

Have you ever found yourself making a deal with God?  If You do this for me, I promise I will go to church every week.  If You do this for me, I promise I will never do this again.  I don't think that I make too many promises with Him anymore, but I know that I use to.  Now I find myself thinking, man I thought I learned this lesson before.  I guess I didn't.  Once again my Father is patiently teaching me the same lesson over and over.  I just don't understand how He can be so patient and I can mess up so many times and He still wants me.  Just amazing.  He wants me!

This comes to my mind as I see people busily get ready for the Christmas season (yes, it is Christmas and not Holiday because Christ is the reason for the season).  I find people bitter and just rushing to go through to motions.  Not really taking time to stop and savor the season.  I find that traditions are placed on the back burner and the focus is on the good deal (black Friday I will never understand you).  It is not about taking time to stop and think about what a person really wants, what would they enjoy and appreciate, it is about buying all kinds of stuff, the "bargains" who has the most stuff, making sure that it is evenly divided out among all the kids (you would not want to upset one).  I find that people don't want to send cards any more because it is too expensive, not ever really thinking that a card is a time to reconnect with those you lost touch with over the year, or it could simply bring a smile to someone's face.  We are too busy to make cookies and hang lights, to go get the tree, and to listen to the music.  Maybe it is because we are sick of the season before it even begins because it has become so commercialized.

I am thankful that God has placed me on this journey.  One, He has given me a child that forces me to slow down.  She forces me to celebrate all of the small steps and to embrace each moment.  She teaches me how to overcome huge challenges and to find joy in everything.  I am so blessed that I get to learn that lesson every day.  And yes, I need a reminder every day. I get so wrapped up in the world and things I am suppose to be doing rather than things that God wants me to do.  Rather than seeing the beauty right before me.  I am blessed, I am chosen and I know that it is my path, but I wish everyone could learn that lesson as I have.  But I will celebrate that God has chosen me and continue to learn and try to share as I am able!

The other reason why I am so thankful that God has placed me on this journey was because of some very important lessons that I learned last year.  If you would have come to my house last year, there was not one glimpse of life.  There was no stockings hung, there was no tree decorated, the halls were not decked.  However, we were able to decorate two places.  We had our home at the Ronald McDonald's House.  We had stockings hung, a Christmas tree decorated (even more than one!), we had our advent calendars, we had ornaments made, a nativity scene set up.  Then if you went across the street, Lydia had her own Christmas palace.  She had glowing trees, nativity scences, more stockings, pictures the girls had made, and the list goes on.  In both places there was love, there was the Spirit of Christmas.  No matter what happened we were together as best as we could be.  We were making memories and sharing time together.

You see, last year, the shopping lists, the baking lists, the tree, the presents, the get togethers, the programs, the hustle and bustle of it all did not matter.  We had a sick child, one who was waiting surgery that she needed.  But that did not matter, we were able to celebrate Christmas for what it is.  Celebrate the birth of our Savior.  We were reminded over and over why the Savior had come, we needed Him.  It was so refreshing.  And I do think that there was a piece of all of us that felt that way last year.  Even though there was a stress of waiting for open heart surgery, there was the true peace of the season.  One that I can recognize now.

The lessons that we learned last year have spilled into this year.  The excitement and joy of making memories, of celebrating our Savior's birth can be felt in this home.  It is not about checking off things from a list, to rush and get it done, but to stop and enjoy this season.  We have been listening to Christmas music for a long time now.  Talking about what the songs mean and what they mean to our family.  The day after Thanksgiving we got our tree and a day later it was put up and decorated.  How the kids loved it.  It did not matter what it looked like, where the girls hung the ornaments (usually I totally freak out over this), but it was that we were a family being together, enjoying this awesome time of year. 

Last night Eric had to make an unexpected trip to Milwaukee to fix the furnace there.  We were hoping to just hang out with the family.  Instead the girls asked to make cookies.  I said sure.  I let them do everything.  We made spritzers and their hands turned colors from dying the dough.  It was awesome, memories left in their head that they won't soon forget!  As I tucked them into bed, they thanked me for making memories with them.  They said that while we were not able to do that last year, there were so many things that we were able to do instead.  Even a 4 and 5 year old recognize opportunities.  There is no reason to feel guilty that the perfect present or the perfect stocking did not exist last year.  In these tiny minds, there was only one thing that was important...being together and celebrating the birth of our Savior.

I just sat and prayed for a long time, just praising God of where He has lead us, how He has grown us.  I could have never imagined the journey to be so awesome and powerful, to change me in a way that I am not even sure of yet.  I look at the future with promise, no matter what happens.  Fot it is in Him I find my hope and trust, it is in Him that I can find true peace and rest.

I hope that I can remember this lesson that He has taught me.  It has been very profound.  It gives me great peace.  I want to describe it, but then I remember that this is the journey He put me on, these are the lessons He wants me to learn.  I try my best to explain them, but they are lessons maybe only I understand.  I hope you can get a sense of how awesome our God is.

I encourage everyone to take some time to just stop and enjoy the season.  There will never be the perfect amount of baking that will be done, the perfect present, the cleanest house, the best hosted party, the most gifts, the perfect tree, the perfect card.  We already received the perfect present, He was wrapped in cloth laying in a manger.  While our world can disregard the true meaning of the season, when you walk into our home, it will be full of love and laughter, traditions and memories.  You will see the peace of the season and we will take the time to enjoy and cherish our memories that are getting made.

Tuesday, November 27, 2012

In a Moment

In a moment everything can change.  In a moment your world can come crashing in.  In a moment you can be on top of the world.  In a moment things can seem hopeless.  In a moment nothing could get you down.  A moment is nothing more than the gust of the wind.  A moment is just a small season in the big picture of things.

I have been thinking of this moment.  It is crazy.  One moment we are looking at the pregnancy test thrilled that God has chosen to bless us with another life.  In the moment of a phone call, tears are streaming down my face, looking into a world of uncertain reality, our child may have Down syndrome.  In a moment in the van, my husband and I hold hands to pray, we decide to embrace what God has chosen for us.  That moment of fear and unknown quickly passes and we are once again filled with happiness and hope.

The wind changes, the gust comes in and we are once again sadden in a moment.  The doctor says we must go to a specialist for there are complications far above what they know how to handle.  In a moment the world seems so unfair, everything is shattered and so full of despair.  In a moment we our overtaken with so much information, our daughter, our little girl, her heart has a hole, there is no stomach detected, it is confirmed, Lydia Ann has Down syndrome.

In a moment I lost track of Ellen and Allison and how fast they grow.  In a moment they knew a different life.  In a moment our life was turned upside down.  At first, one that seemed so unfair, so uncertain, and a path that I was not sure if I wanted to travel.  However, that gust keeps blowing, things keep changing, and in a moment things are different.

In a moment I became very familiar with medical terminology, I became familiar with things that seemed only possible in someone Else's life.  In a moment I was faced with major decisions, one that would not just affect my life, but our entire families life.  In a moment it seemed like I was pushed to the ground and my knees my only hope.  When hope and reason seemed to be lost, He was there, full of hope, full of reason, holding out His Hand, asking me to trust and walk along side His great plan.

In a moment I was holding the most beautiful girl.  I heard her cry, I calmed her, I kissed her and the next moment she was gone.  For hours, I did not see my girl, I knew nothing more about her.  For hours, that seemed like days, I longed for the other part of me.  In a moment, things changed.  I was joined with her once again, but only for a moment.  As I sat there fighting for my life, my daughter laid in a bed with her grandmas near, only for a moment.  Soon, the winds would change, a gust would bring different things, in the moment things would change once again.

In a moment I would send my daughter to surgery, I would lose all control.  I would pray and I would trust that God was holding her, He was guiding the hands of the surgeons.  In a moment I would imagine what it would be like to see her connected to so many tubes and medicines, in a moment that I could not begin to understand.

In a moment I would see my daughter fight for her life.  As she lay lifeless, blue, with no heartbeat at all.  I would watch nurses and doctors scramble to do what they do.  The gust would come and I would hear her heartbeat, I would see her chest rise and fall, for in the moment things would change.  Once again the doctors and nurses would do what they do best and bring my daughter back from her rest.  I would finally hear, in a moment, beat, beat, beat, and I could breath, I could rest.  For whatever the reason would be, God chose life for Lydia, and I was as thankful as could be.

In a moment I would see Ellen and Allison change.  I would wonder where the time was going as they seemed so big.  They would come and talk to me about things unknown, they would smile and ask questions for someone far beyond their years.  At times they almost seemed like someone I did not know, like a stranger sitting on my lap telling me their dreams.  In a moment I lost where I was, I lost sense of time and place.  They grew right before my eyes without me taking notice, without haste.

In a moment the world seemed to be perfect, bringing home our bundle of joy.  The world seemed so small as Lydia's accomplishments seemed so great.  Walking out the doors of that place, it was as if fireworks were going off and I was dancing with delight.  The best feeling in the world, a sense of peace.

Walking into a home that seemed so familiar, yet so out of place.  Learning new challenges, adjusting to a life unknown.  Watching Ellen and Allison kiss their sister, see the joy in their face, in a moment everything seemed just so.  In a moment that Eric and I dreamed of for many days, one that seemed to unattainable, so impossible.  God knew that one day we would experience this kind of joy, one day we may appreciate it a little more.

Each day has their moments, their joys and frustrations, sorrows and celebrations.  At any moment that wind is ready to come in and change.  In a moment the gust can blow and things seem so different, things seem not quite right, I don't understand, this is not right.  However, in a moment things can change once again, and you can appreciate all of the small things, the large ones too. 

I have been thinking of these moments lately.  It just seems as though sometimes they are not fair, and some times they are so amazing words just cannot describe them.  Those moments that we have nothing to hold on to, other than the amazing promises of our Father, we have no other option but to bury our face and pray.  Then we have those moments that seem like they are part of heaven.  Those moments where nothing seems to be able to get you down. 

The stark reality of life has hit me hard lately.  While I sit and fret way more than I should and worry about things that just bring more sin, I have been reminded of the moment, the moment things change, the moment things are so wonderful and the moment when I just cannot bear anymore.  To embrace every step of where you are at, no matter what.  To embrace each smile and each hug, each milestone and each accomplishment.

To see life through a different lens makes every moment so much sweeter, so much better, it just makes sense.  To see all of my children excel and learn, to watch them mark one more thing off that list of developments.  To embrace all that God has to offer.  His plan, His timing, His promises, His love, His discipline too.  I am so blessed to be chosen because there are only a few!  Praise God for this journey He has placed me on.  While some moments are so hard and it seems like no one really understands, it has created me, shaped me, molded me to be who I am today and I am so thankful.  It has taught me to embrace these moments, no matter how hard they may be.

In life there is going to be trials and persecutions, there will be hardships, however, having the promise of Jesus makes me complete.  Knowing that God has lead me to this place and He will not leave me.  He will see me through it, in His time, His place.  No matter how hard that road gets, He will not leave me, His promises will always be.  He is my Shepherd, my guide, my peace.  Thank you Jesus for this journey and never let me for get these moments, the changing of the wind, the gusts that can shake our entire world.  However, God has it under control.

Raising a child with special needs is no different than any other child.  Let your heart be open and embrace the moment that you are given.  No matter what in life, you will never live up to someone Else's expectation, so take what you are given and live.  Be proud of what you are given, for it is your path, your story you are creating.  God has chosen you to be here, not someone else.  Celebrate each imperfection, for none of us are perfect.  There will be hard days, but there will be pieces of heaven and in all those moments, the journey is worth it!

Monday, November 19, 2012

Forever Changed

November is a month where people often reflect on all that they are thankful for.  They make lists and share things, they may write notes and tell others.  However, as I continue to walk through this journey, I find that being thankful is just part of me.  There are people and strangers that have done things that I could not even have asked for.  Things that they just see need to be done and they do.  A lot of our doctors and nurses have gone above and beyond to help us out.  A lot of these folks I may see once or not at all.  It is important that I embrace each moment and give thanks.

We understand that we cannot walk this journey alone.  We understand that we count on many people to do things.  Grandmas and Grandpas to watch our kids, aunts and uncles to take the kids for a weekend, neighbors to get a child off the bus, friends to watch the kids while we are at a doctor appointment, people providing meals or gift cards.  These are all gestures that we have experienced that we cannot say thank you enough for.

Then there are lactation nurses who make sure you have everything you need to succeed in providing breast milk for you child.  We had a surgeon who has gone above and beyond to help Lydia out.  We have had nurses just send notes to let us know they are still thinking about us.  We have care takers asking us to stop by because they want to say hi.  We have therapists going far beyond their job duties to make sure that Lydia receives the very best care possible.

How do you say thanks to all of that?  It is something that changes you in such a way that it becomes your lifestyle.  Before I always thought everyone should do things for me, just because.  I often times did not give back.  I was selfish and unthankful.  God gave me this trial for many reasons.  I am thankful that He has changed my outlook.  He has taught me something so amazing.  And not only has He given me a trial to teach me but to make sure I truly understand.  It is a lifestyle that I live now.  Making sure that I say thank you or to reach out, no matter how big or small.  It is a powerful thing.  I am so blessed that I am able to model that for my children each and every day.

Being thankful is just one of the things that have changed me forever.  The way I see things is also differently.  Even though God is still trying to teach me this, I do try to look past the circumstance and give Him praise.  It is hard to live constantly in the circumstance, it totally consumes you, it takes everything you have.  However, our God is not a God of circumstances.  While it may seem like my life is totally crashing in on me, God is there.  His beauty is all around me.  To see the beautiful sunrise God has painted, to the flowers He has made, to the green grass, to my beating heart.  He is there and constantly providing miracles, constantly reminding me that He has created everything.

To be able to look past some one's faults and accept them for who they are is such a hard thing to do.  I am trying, I still have a long way to go, but the conviction is there on my heart.  It is so much easier to point out negative things rather than positive things.  However, when we can appreciate the good in people and help them with the negative, we achieve so much more.  We are able to tolerate a lot more when we give someone grace.  After all, God has given us a lot of grace.  We should be giving that to others.

Maybe someone is having a bad day and the smile you give is just what they need.  Maybe someone just lost someone close to them and a card in the mail is just the pick up that they need.  Maybe it is that person who cut you off and did not mean it.  How many times do we do that and ask for grace?  Anyways, I understand it a little more because of this trial.  I understand that things are not always as they appear.  Sometimes we really cannot understand until we have been in their shoes.  However, if we just give them grace and offer a hug or a smile, or just allow them to talk without judgement, it can make all of the difference.

God has taught me so much in this trial.  God has changed me in a way that I cannot communicate.  The lessons that I have learned are so valuable.  It is nothing that I would have ever asked for, nothing that I would have ever wanted to take on, however, I would NEVER give it up.  I would not trade one moment for the most money in the world.

I always thought that I would be a business woman, that I would have a lot of money, that I would have a lot of stuff, I would be successful.  For awhile God did bless me and Eric in that way.  However, I can tell you that we never appreciated it.  We never really knew what we had until it was gone.  But I struggled with the notion that I was not successful, that I was really nothing because I did not have the money, the stuff, the look.  I really did not measure up in terms of the world, however, I need not compare myself to the world.

In God's standards, I can rest assured that I am loved no matter what.  I don't have to store my treasures here on earth, for I am promised the most amazing place to live.  I will have eternal life worshiping my Father.  I am rich beyond measure.  I have a husband who thinks I am beautiful and loves me.  Yes, we have our share of problems and our marriage is not perfect, however, we are there for each other and we made a commitment that we are both serious about honoring.  His arms will always provide love and support for me.  I have three beautiful children.  God has given them to me to care for.  They are not mine, but His.  God has given me a great church family, super awesome mom's group, a great women's Bible study and the list goes on.  Most of all, He gave me His Son, His love, mercy, grace, forgiveness.  I am rich beyond measure.

I know that I give up much in this world to pick up my cross and follow Him.  However, in Him I have everything.  Most importantly, God has reminded me that this journey of motherhood is my ministry.  It is my job to pray and ask for guidance from Him to raise these children.  I have the added blessing of being a mom to Lydia, a child that God created perfectly.  While most people would have not given her a chance, we are loving her and learning from her.  What a blessing.

This has given me great comfort lately because I have struggled with always defending why I do what I do to people.  Comments saying I am going overboard keeping her safe, not allowing others to hold her and the list goes on.  However, I am accountable to God, I am doing what I believe is the very best thing for this family.  I will make mistakes, but I am trying to raise my children according to God.  So while people may say those comments, it is good to evaluate and make sure I am doing what is best for my family.  I have learned more about not being selfish.  While I am very selfish still, I believe that God is working with me on that.  To put my daughter first in this season of my life is what I am being called to do.  And when I feel as though I am being judged, I need to check what I am doing.  I bring judgement on myself.  I am probably not walking as God would want me to walk.

I am so thankful for the life God has given me, for the family He has blessed me with.  I am so thankful for the trials He has given me.  He did promise us that we would encounter trials and persecution.  It is in these trials that He breaks us so we depend on Him.  I have a ways to go. 

Friday, November 9, 2012

The Innocence of a Child

Today I am so full of the innocence of a child.  It is just Lydia and I home today and I have been sitting next to her just watching her.  She is so full of life.  She is exploring things, she is figuring things out.  She loves when you praise her.  She miles and loves to be by mom.  She has all kinds of things to say in her own language.  She understands what I am telling her and gives me the best facial expressions.  She is Lydia, there is no disability.  There is no Down syndrome, esophageal atresia, heart is just her.

And she is no different than my other children.  I listened to Ellen read this morning.  Sounding out each letter and trying to put all of the sounds together to make a word.  She loves to read.  She loves to figure things out.

Then there is Allison.  She is special in her own way.  She gets things without really having to work at them.  She can walk up to a new situation and tell you just how it should be.  Often times she is correct.  She has a natural gift.  She is fun to watch, mostly because she has so much energy.

Our children just see life as it is, simple and full of joy.  They don't have anything else to focus on other than that.  My children are always playing church and reading the Bible.  They always have a new story to tell.  They live now, and don't let anyone stop them.  If they hear something that does not sound quite right, they ask to get more information.  I realize they have a small amount of life experience, but sometimes that is better.

They don't put labels on things.  They just see it for what it is.  They are full of love and energy, laughter and love.  Why can't we be more like children?  Why can't we have a teachable heart, know pure joy and honesty?  Why can't we be accepting of things?  When we hear something that does not sound right, why can't we question and get more information instead of forming our own label or decision?  I love the innocence and pureness of a child.  I learn so much from it.

I also think about some of the recent decisions in our life, specifically on Tuesday.  As people seem upset and unsure about what to come, I feel more grounded and more at peace than ever before.  God holds my future, He holds my tomorrow.  Only He can tell me, show me what will happen.  I don't have to account to a president, a mayor, a teacher.  Yes, I need to respect and support them, but that is not who I have to give accountability to.  That is not who I need to focus on.

If we put our trust in this world we will get hurt over and over.  I see that pureness of the innocent child get crushed over and over in our world.  People are cruel and mean.  The simplest things are often ruined and crushed by someone just looking to hurt someone.  It is sad, but that is sin.  And just because we take up the cross and follow Jesus does not mean our life will be simple and not full of trials (just the opposite) but we are filled with the Holy Spirit.  We are filled with promises and strength of our God.

We don't have to trust in things of this world.  I am sure that our children know no different.  Our children put their trust in their parents.  They are guided and taught what the parents believe.  That is probably why my children play church...they don't know much else.  It is so awesome to see that innocence and pureness in our children.  It is our job to embrace that, teach them as God calls us to.  For mothers, that is our ministry.  They are our mission field.  This is the legacy we were called to leave behind.  They will have the strength, if taught right, to impact a generation.  To cary on the Gospel.  How wonderful and awesome that is.  What a great ministry.  There is more than just laundry, dishes, cleaning toilets, and cooking.  It is a high calling from God Himself to be a mom, it is a reward.

I will continue to trust in God and put my hope in Him.  While it is easy to get caught up in things of this world, I will do my best to be on my knees in conversation with my Father.  He is so awesome and mighty, He is worthy of our praises.

I am blessed each time I go to lift one of my girls and look in their eyes.  They always have a gleam of joy that just radiates out.  I am so blessed to watch them grow, to see their innocence and guide them as I have been called to do so.  And just because we put a label on someone or something, does not mean that it defines them.  I love the playtime on our floor, there is no labels, no one says you can't do it.  It is just pure innocence and joy.  It is awesome to see.  Take the time to redefine the label.  Take the time to get to know for yourself.  Praise you oh Father!

Tuesday, November 6, 2012


My fingers are itching to write and my brain says I cannot keep up.  My brain needs a rest from everything.  So I thought that I would jump on the bandwagon like all of my friends from face book and write about what I am thankful for.  After all, Saturday when I was in Target, I was looking at the little girl dresses and just started to sob.  I actually and able to get a Christmas dress for all of my girls, that they can all wear together, and they can all attend church.  This year we can all be under one roof for this great holiday!  Wow!!!  So thankful!

I guess on today, election day, it is a great day to be thankful for many things.  I am thankful that we live in a free society.  I am thankful that I am not getting persecuted for my faith (well, at least I can be very open about it, live it, and not hide it).  I am thankful that I know, even under these circumstances, that God is God.  He is sovereign and He is King.  It does not matter what happens in this election, because He is still God.  His plan will continue no matter what.  I am accountable to only Him.

I also give thanks for trials.  This last year has been an emotional roller coaster.  It has seemed like an uphill battle most of the time.  However, God has provided abundantly through all of it.  Most of my requests have not been answered the way that I have asked, however, God's Will has been done and it has been amazing.  I am so blessed to be part of this journey.  While I would never want to relive everything, I would not take one thing away.  For it is every large and small detail that has made me me today.  My faith has been strengthened, I appreciate my daughters, my love for my husband is strong and awesome.  I feel like I am a renewed person.  I have learned so much about faith, trust, hope, love, and most importantly about who I am as God's child.  Without this trial, I would not be me, Lydia would not be Lydia, Ellen would not be Ellen, Allison would not be Allison, and Eric would not be Eric.  We have been changed, but more importantly we have been shaped and modeled by our Heavenly Father.  We have been loved and provided for beyond what we deserve.  My words cannot quite describe how I feel about it, but I am so thankful for this trail.  I just praise God.

I also love that God sent His Son to save me.  Without that, I would not have my saving grace.  I would be nothing without God and Jesus and the Holy Spirit.  I am so thankful.  I am blessed.

The list can go on and on, however, my eyes have been opened to other things.  As we enter this holiday season I am going to try to not focus on gifts, on the things this world tell us is important.  However, I am focused on what God has been teaching me, what God has taught me last year.  People who gave their Thanksgiving to come and serve those who were hurting.  Those people who could not be with their families, or those who were there because their families were divided because of sickness.  Being at the Ronald McDonald House has opened my eyes to a whole new way of thinking.  People put others before themselves.  They were serving because they wanted to.  They were helping others.  It was amazing.  There was a chef that came in on Thanksgiving and prepared for hours to provide a meal to many families.  There was a church that came in and helped out.  It was so awesome.

And not only at the Ronald McDonald's House but at the hospital too.  There were nurses, doctors, care partners, greeters, the hospital was in full function.  It was amazing to see.  A cardiologist actually came in to talk to us on Thanksgiving about our daughters surgery.  A physician assistant came in to get signed consent for Lydia's heart surgery.  They did not take a break.  They were still serving others on a Holiday.  Yes, I realize they still get paid, but they are sacrificing a lot to be able to take care of sick little children.  It was amazing as well.

I guess it just opened my eyes to yet more stuff that goes on in this world.  I am thankful for my family, for our health, for being together, for our church family, for all of the material blessings.  But mostly, I am thankful for the things that I have learned through these trials.  I could not be me without these trials.  I could not realize the full blessings I have without these trials.  To think, we have the opportunity to look at a trial and feel sorry for ourselves (I know that I have done this), we have the opportunity to look at a trial and just give up (I have been there too) and we have the opportunity to look at a trial and just fall to our knees in blessings.  I have been doing this a lot lately.  I realize there are probably stages that we all go through, but to be able to say thank you in the trial, is the important thing.  God gives us these trials to shape and mold us.  To make us be better, to increase our faith and knowledge in Him, to give us more trust and strength.

While I am thankful for all of the little things to, I am so thankful for the moments that God has given me that have pushed me to my limits, that have shaped me to be the person that I am today.  I am thankful. 

We have already started to listen to Christmas music in our house, my Christmas cards are actually all done.  However, all of those things mean very little.  It is about being together, about being healthy, about having our Savior born and how important that is in our life.  Thanksgiving is something we as believers should be doing every day.  Thanking God for allowing us one more day to be alive and spread the Good News. 

I did not mean to get so "holiday season" in this, but in my mind, I am already there.  I am excited because I know what it means for me personally to celebrate the birth of the Savior, because that is one of the things I am most thankful for.

Today Lydia has not been eating very well.  I have been praying and waiting on God.  Those that wait will renew their strength.  She did very well in therapy today, however.  It is just a matter of weeks probably before she will be taking off and I will have to run after her!  We are very excited.  It has been so fun to watch the process.  To really see how much work it takes to crawl.  The steps in getting there and watching her accomplish each one.  What a blessing that is!

Sunday, November 4, 2012

Who will you believe?

It has been a nice and relaxing weekend.  One that was needed in this house.  We did much of nothing except hang out as a family.  We created many memories and laughed and smiled.  I think it was a little bit of reteaching one another what a family is suppose to do.  We left the things we just can't seem to get away from go for moments and really just enjoyed the simple moments.  It is hard to do this in life, but something that we just need to do.  What a great weekend!

One thing that I have been thinking about a lot is the irony of some things.  I think there is a lot of odd stuff in this world that just does not make sense.  So, let me tell you about the one that really has been bothering me.  There is a movement to do more and more genetic testing to see if an unborn child has a "defect."  If this "defect" is detected than it would just be nonsense to allow that unborn child to live in such a matter (no one really asks that child if it is OK or even the parents).  There are scare tactics and lots of statistics thrown at people to make them think that killing that child would be the best thing.  I realize this is not the case all of the time, but if you are up on your reading, about 90% (or better) of the unborn children who have tested positive for Down syndrome alone are killed.  That is not to mention all of the other "defects" where the child is killed.  Or there are such things as non compatible with life diagnosis that doctors label children with. 

So, the doctors seem to think they have this figured out, except when a child who tested positive for Down syndrome is born and is perfectly healthy.  Or a perfectly healthy child is born and has Down syndrome.  Well, something must have been wrong with the test, something went wrong.  Or could it be that we just don't know?  Maybe we are not able to look into a crystal ball and know everything.  Maybe science will only take us so far and we just have to trust in God for the rest?  I am not sure.

So, let's say you get through the pregnancy and have the child, now, this same profession wants you to trust them to care for your child?  Remember, this is the same one that thought that they did not have a chance, the same ones that said your child would be better off dead.  And you want me to trust you to care for my child and give me advice.

Really, in a lot of cases, you have no choice.  If a child, like Lydia is born, there are so many medical complications you must trust.  So you do.  Mistakes are made, your child does the very same things that they said she would never do.  Your child does not match the label that they are given.  Your child does not fit the description in the books.  You child certainly does not do as they are suppose to do.  Now what do you do?  Just let them poke your child one more time?  Just let them run one more test?

And what happens when you trust that person and they tell you something so absurd?  Something like your fairly healthy, developing child would be better institutionalized.  You can just wash your hands of your child and move on.  GULP, let me swallow this.  No, I think not.  And then you are to continue to trust them?  You are to continue to have them give you advice about your child?  I think not. I am being a little sarcastic here.  Sorry.  Well, not really.  I just can't help but think how ironic it is.  How insane this sounds.  These doctors, sometimes, think they know more than God.  They think that they can play with the parents emotions and feelings.  They can predict the future.  Now, we have had some INCREDIBLE doctors.  I am not saying all of them are this way.  We were very blessed that we were not pressured, by a doctor, to have an abortion.  Most of our care takers and nurses and doctors and surgeons were great.  However, sometimes it is just that one bad apple that spoils it all.

I have been praying and trying to release this and ask God over and over what I should be learning.  I just cannot give it up.  I just seem to not be able to let it go.  I have been here before.  I have asked these same things.  However, this time it I just could not put my finger on it.  I was actually sitting in church and I was slapped across the face.  Duh....I keep asking the doctors and I forget to ask God.  Yes, I ask Him what I think, but not what does He think.  I ask for His Will to be done, but not really.  I want her to grow and I want her to be healthy, I want all of this.  I am asking doctor after doctor, but I never really asked the Great Physician.

So maybe this is as clear as mud to you, but this is as clear as bathwater to me.  It just made sense.  When I was born again, I remember that I am different than this world.  I live to a different standard.  I am accountable to God, not to this world.  I am not of this world, I am just in this world.  This is my temporary place until I meet my Father.  That is so wonderful! 

I guess my slap in the face was this is just one more thing of why we cannot trust this world.  These doctors are human just as I am.  They are sinners just as I am.  They cannot predict Lydia's future.  Yes, they have more information of the anatomy of her body than I do.  They know the inner workings better than I do.  They can give me insight and they can give me perspective.  However, they cannot predict what she can or cannot do.  It is unfair for them to do that also!

The only thing we can trust in life is God, His promises.  He has been the only thing that has been constant, unwavering, unchanging, in this total mess of a life.  He is always listening, even when He is silent, He is there.  That light turning green on your way to work when you are late, that extra $20 that you found in your pocket when you thought you were broke, that smile from a stranger when you were tearing up in the store.  Those are not coincidences, no the God who created this world, He planned each and every detail of your life.  He cares and He loves you, it was not by chance, it was by design.  Praise God!

This is just so exciting to me.  So I am not trying to put down the medical world by any means.  We are so thankful to have all of the nurses and doctors and surgeons on Lydia's team.  We are so thankful for all that they have done.  But I needed this reminder.  I have been so focused on what they have been telling me and trying to get it all right, that I somehow slipped into this world.  I somehow put it first before my Father.  It is so easy to do.  But He is so loving and gentle that He just reminded me, He taught me.  I am so thankful for that.

But the irony in somethings is just funny to me.  When you stop and think about it, it really does not make sense.  Yet, in our world, we try to make sense of it.  A lot of times we put all of our stock in that.  We make ourselves crazy (yep, I am guilty of that) trying to make it make sense.  God is waiting there, He wants to help us.  He may not answer the way that we want Him to, it will still be His plan, but He will be there.  It often times is a long hard road, but He will never let go.

Crazy thoughts tonight, I am just so gitty about what God has taught me.  Now to apply that to life.  To not only remember it this time, but the next and the next!!!  Thanks for sticking with me to the end of it.  I need to mention again, we have had wonderful wonderful doctors and nurses, I am not trying to put them down.  I do believe that God hand-picked each one of them for a very specific reason and purpose (and yes even the ones whose bed side manors are less than desirable), we have been blessed.  So, please hear me when I am talking about the irony of the crazy world we live in and I really am praising our medical team because it was all God's doing.  Glory to Him.

I have to add, on day six, Lydia threw up.  He has a wonderful sense of humor!  However, I don't believe that she was sick, we are thinking that it is a gag reflex from her teething.  But she is slowly starting to increase fluids.  So continue to pray that this would be God's Will.  She seems to be doing well.

The Echo is scheduled for November 14.  Please pray for this.  Pray that Lydia takes the sedation well and that we get a clean Echo.  Also pray that she is able to stay healthy for the Echo this time!

Thanks again for your prayers and support.  We really appreciate them. 

Friday, November 2, 2012

Defending Life

The music is playing and I am holding Lydia.  We sing (well I sing and she sings in her own way), I turn her gently and she lets out a howl, showing me she loves to dance with mommy.  We sway back and forth and turn a couple more times and she is smiling with delight.  These are the moments that people need to see, she is just like anyone else.  She is a child, she has a beating heart, she loves to experience things, she laughs and enjoys life.  She is a child of God, she is special and she is just like my other children.

I cherish these moments with her.  It was not too long ago that I could not because she was too sick.  And too soon she will be too big to do this with, so I will savor these moments.  I have danced with all of my children and it is has been something that I will remember as they do.  It is quiet moments of pure joy to share with your children, to just embrace that moment.

It has been weeks since I have been able to pick her up and dance.  I have allowed words to get the best of me.  I remember that saying when I was younger "stick and stones may break my bones, but your words will never hurt me."  I can't help but think how wrong that saying is.  Words can crush a person.  Yes, you have to let them, but they are hard to shake sometimes.

I just cannot shake the fact that a doctor told me to wash my hands of my child.  Breaks my heart.  If they are really in practice for children, why do you feel that way?  Every life, no matter what, has purpose and is special.  No matter what the circumstances were that that was said under, I think it is inappropriate.  When I was pregnant and shortly after Lydia was born, I did have several people tell me that I should have had an abortion/aborted her.  However, most of these were strangers or distant friends.  People that I could disassociate myself with easily.  However, when it is someone that you are suppose to trust and rely on for advice and knowledge of how to raise you child, it is really difficult.

I am not sure why so many people have to defend why they had their child.  Why is she any different than anyone else?  I praise God that our family has been pretty shielded and we have not run into that too many times.  However, some people have to constantly defend the life of their child.  Down syndrome does not make her any different.  It does not define her.  There may be some limitations, but we all have those.  What she can offer is different than what I offer, but that is what makes life beautiful.

I can't quite explain how upset this subject makes me.  Mostly because I don't understand why I need to justify her life, when there are other people out there that don't.  A friend of mine just found out that her daughter has cancer.  Does that make her child less of a person?  Her life may have limitations, she has medical issues, and she is struggling.  Does she have to defend why she had her?  No.  It just bothers me how judging and inconsiderate we are as a society.  We want to be accepting of everyone, yet we go to great lengths to make sure our child is not that one.  Oh I don't want Down syndrome, oh I am so sorry for you, oh it has to be so hard.

What I can say, however, is the blessing that these folks are robbing themselves of.  Lydia, as all of my children, has been such a blessing.  She has taught me more about myself and what in life is really important.  And let me tell you, most of that is not because of her Down syndrome.  It is because she has had some defects and yet has over come them with a smile on her face.  She is determined.  She looks at the glass as half full all of the time.  She tries and tries until she get it, she does not give up.  She looks at the good in things.  She laughs....a lot.  She smiles all of the time.  She chooses to look at the good and not the bad. 

So, I picking myself back up and trying to put all the pieces together.  I have grieved over these words long enough and they have robbed me of some weeks.  However, I know that I am stronger now because of it.  I am more proud of my daughter (all of them because they also heard the comment) more than ever.  What we are learning now is something that no one can teach you other than God.  God loves our family enough to give us this miracle.

The road has been tough lately.  There has been a lot of things going on.  However, the blessings that we continue to get are amazing.  Each day is something new.  The road has been lonely and weary.  The circumstance has gotten the best of me.  However, now that the mud is getting clearer, I am stronger, and am more faithful, I am a better person.  God is teaching me.  God is showing me what is really important.  God holds my tomorrow, and now more than ever, I am SO thankful for that.  The world is a scary place, and I find GREAT rest knowing God has it, I need not worry!

I made a verbal complaint to the GI clinic about our doctor and that the nutritionist never returned a phone call or an e-mail for 5 weeks.  I am getting past that and see just how resilient Lydia is....she is overcoming great obstacles.  It is all because God is working in our lives.  He is a miracle worker, big and small, He has everything covered.  On a side note, if you are ever someone making a complaint about an inappropriate comment, don't defend the person and try to "cover up" why they may have said that.  That may have gotten me a little more fired up.

So, yesterday Lydia had her 15 month appointment.  Last week she was down weight a lot.  She was only 15lbs 12oz.  Yesterday, she was 16lbs 3 3/4oz.  WOW!!!!  Ellen yells, mom now that is something to celebrate.  Yes, honey, yes that is.  The prayers are working!  Our doctor thinks that she looks great.  We hope that we have changed a couple of things around with her nutrition and this will help her out greatly.

We still need the prayers as we are not out of the woods at all.   We still need her to stay healthy, that is really going to be the key for us over the winter.  She still needs to continue to drink.  We are not at our goal, but we are getting closer!  We have decided to stay away from the tube for the time being and see what she can do on her own.  She also needs to continue to eat (just a side note for any of you mayo lovers...Helmans really is a lot better for you than store brands.  We are using mayo instead of oil, but Helmans is like 60 calories and the store brand is we are using the store brand naturally!)  Thank you for your prayers, we ask that you continue to pray for her.  We ask that she continues to stay on this track. Well, maybe not 8oz a week, but at least 2oz a week!

We are not on as big of a push to get the tube out.  Our concerns were that she was not spending anytime on her stomach because of the tube.  She was also getting a lot of infections from it and it seemed to be causing her discomfort.  Since switching back to the smaller tube, we seemed to have resolved many of those issues.  So, as we discussed with our pediatrician, we will try to leave the tube in for the winter just in case she should happen to get really sick.  The tube will allow for some different options then.  We are satisfied with that.

She will see her new GI doctor the end of December.  Please pray for that as well.  It has been a long battle with GI and we just could use a break!

We are still waiting to hear back from cardiology as to when her Echo will be rescheduled.  We would like to just get a clean Echo so we can put the heart stuff behind us for a bit!  That would be awesome!

I will defend Lydia's life until I die.  She deserves it.  I guess it teaches me that we all classify life somehow.  However, we should not.  We have no business doing that.  I am sure that I do it to and don't even realize it.  Everyone has a purpose and is special.  God does not make junk.  I am just blessed to be able to realize that each and every day.

Education has been a big thing for me.  Yesterday I ran across an amazing video.  If you have about 14 minutes, I highly recommend you watching it.  And don't just watch it, but pass it along.  Continue educating one another on the blessings of life.  May we all be able to embrace the life God has given us (sometimes I catch myself here because I am not asking you to embrace lifestyles, choices we make, but the differences in how God created us physically.  I hope that makes sense, but I do believe the Bible and know that some lifestyles were not created by God and therefore I am not saying embrace those.)

I hope this link works!  It is great!

As we start off November, it is the month to be thankful.  I believe that I can't even begin to start to thank everyone in our journey, however, I give thanks to God for sending His Son to die for me.  Without that, I am nothing.  Thanks for saving me, Father!

Sunday, October 28, 2012

6 days

Will you join us in asking our Heavenly Father to give Lydia 6 days of health, eating, and drinking? Also, if God will give our family 6 days of rest, a time to recharge and gain our strength again?  We feel that if we are able to get some time of rest and steady eating and drinking and most importantly health, it would really help Lydia.

It has been really stressful.  As my husband and I found out today, it is really affecting us.  As we are trying, we just are failing.  I know I am starting to feel like a fish out of water.  Every day it seems as though there is something new to worry about and there is something else we need to watch for.  Every day it seems harder and harder to get her to eat.  It is a constant struggle to get her to drink.  And most of that is because we are so stressed out.

I think the added stress of not having a good plan is more than I can take.  I still cannot shake the comment about institutionalizing my daughter.  It has gotten me really mad.  Satan is having a hay day there and I am allowing it.  It really is a struggle.  And then I get really mad and guilty when I do let that comment get the best of me.  I know I need to just push it off, but it is really hard coming from a doctor who was suppose to be caring for my child and having her best interests in mind.  Ugh!

So, as we were in church today, our Pastor's wife came up and just asked how the church could support us.  I think we are wearing our stress on our face and our poker face is gone!  People can see the fatigue and the dark circles under our eyes.  When Allison prays in church for Lydia to just get is a struggle.  But as we were talking, I just kept saying if we could just get 6 days of good eating, drinking, and health for Lydia, that could put us on the right track.  If nothing else, it could de-stress all of us and give us some rest.

I know that this is not something that will be fixed today or tomorrow.  This is our life.  This is a marathon that we are racing in.  Slow and steady will get us there.  However, sometimes it is good just to admit that you are in over your head.  If we can just get a small window of time to give us some hope and recharge, I think things will look a lot better!

Each day I wake up expecting that miracle of her eating and the scale to say like 18lbs.  While I will still anticipate my miracle, I give thanks to God for all of the others He has showed us.  He allowed her to survive two MAJOR surgeries.  She has overcome the odds in so many things.  I know she can do it, and I know that He is holding her.  I think we just need a little time to recharge.

Thank you for joining us in prayer.  As always, we appreciate your comments, your prayers, your means A LOT to us!  Thank you!

Saturday, October 27, 2012

Accepting what you don't want to accept!!!

Our paths are determined by our Father, to love us and teach us.  He knows the very best stuff for us.  His path often does not match what we want in life.  Often times the path seems windy and long, the path has bumps and mountains.  Often times we wonder why and don't understand why things happened the way they have.

It is hard.  Faith is what is required to get us through.  God wants us to trust Him, to walk blindly, having Him lead us.  He wants us to surrender complete control and allow Him to lead.  He will lead us down the path He has planned for us.  It is a path that will teach us, grow us, stretch us, strengthen our faith, and require all of us.

Life is not easy and God never promised that to us.  He did promise to never leave us or forsake us.  He will be in every valley with us, He will be on every mountain top with us.  He will not let us fall.  He will be there.  But, we must allow His ways and accept His perfect plan for us.

That means the parents who never were able to take their child home, God is still there.  The child who was killed in a car accident, God is still there.  The child who lost their mom to cancer, God is still there.  God has a plan, and He allowed that to happen.  He wants to teach us, He wants all of us.  He wants our faith to grow.  He wants us to lean on Him. 

I have been at this point before.  I remember in the hospital praying, God if it is Your Will and I was only able to have her in my life for 2 months, I am ready.  That is not what I hoped for, but I will trust You.  I will try to accept it and ask what You are trying to teach me rather than why is this happening?  What will I learn from this, rather than I don't understand.

I came to this point once again.  It is not without kicking, screaming, and resisting every way I can.  I want her to eat orally, I want her to gain weight, I don't want her back on the tube, I want her to get better, I don't want her on the oxygen.  I I is not about me.  I know that, but I don't want to accept that.  I am selfish and I want what I want.  I forget, or rather just ignore that.

But God has been working on me.  It is time to accept that I may not get what I want.  Rather I need to move aside and let God show me what His perfect plan is.  Even though I rely on His strength, I take over, because I want to control the situation, I want what I think is best.  I am sure looking on it is easy to see that, however, even though I know what I am doing, I just cannot help taking the reigns and take control.

Yesterday I just prayed to God.  I said I know that Your good and perfect Will will be done.  If that means that she needs to go back on the tube, then that is what needs to happen.  It is SO hard to think that this may happen.  But I need to trust.  I need to allow God to show me His plan.  I am open to what God's plan is and need to accept and trust matter what.

It is hard.  Once again I am losing control.  I have no control.  I have to sit back and allow Him to show me His perfect plan.  It is the hardest thing to do, especially when it is your child.  Especially when you just want to do the very best thing for your child.  I don't really know, so I need to just trust.  He does have our very best interests at heart, He created us, He sent His Son to die for us.  He suffered for us.  He cares about this too.

Friday, October 26, 2012

Morning Coffee

Sitting here in the temporary morning silence, sipping my coffee and listening to Pandora, my mind is busily sorting through thoughts and trying to just release.  My body aches from the stress that I keep putting on it.  My fingers are steadily hitting the keys and I am trying to comprehend what I am writing.  But I remember, it is not me, it is God, this is my time of release.  This is where I sit back and God takes over.  He allows me to be honest and just to release all of the "stuff" that has built up over time.

It has been a busy week.  Lydia is sick again.  We went in on Tuesday and she was put on an antibiotic as a preventative measure.  With her, they would rather be very aggressive at staying ahead of the game instead of find themselves in a position to play catch up.  She has been placed back on oxygen and we switched her inhalers to a nebulizer.  The nebulizer she thought was pretty cool for the first couple of days, but she is pretty annoyed by them now.

She has also had lots of episodes, once again, of loose stools and vomiting.  Very frustrating, especially since she weighed in at 15lbs12oz this week.  WHAT?  That is the total opposite direction than where we need to be at, kiddo!  If things could just settle down and we could get her healthy, we may be able to get a solid week for her to eat and get a better weight.  But she has been a pretty good trooper and we will be patient and continue to work with her right where she is at.

We did hear back from our new nutritionist, and she gave us some good suggestions.  We were told that she is taking in enough calories...finally.  However, she is deficient in calcium.  So we are looking into a supplement.  I pushed the idea of going back on the sodium.  She is low in intake on that.  She was taken off the sodium when she started losing weight.  I just figured that would be an easy harmless trial.  I am still waiting on word for that.  But we also found out she is grossly deficient in fluids.  Something that has never been brought up to us before.

I can't tell you how frustrated and angered I was when I found that out.  That is something that I had asked over and over about and I was told she was getting it from her food.  However, we have found out differently.  Every inch of my body wanted to scream and I just really wanted to choke someone.  I got over that, and just pushed forward asking more questions and trying to figure out what we had to do.  She will be getting some extra water through the tube at night to meet her fluid goals.  We will have to work HARD on getting her to take in the needed fluids.  Of course it would help that she feels better to start trialing some of this stuff.

We had to get our pump back from the medical supply company.  So the first night we went to use it, it would not work.  God has an amazing sense of humor.  Last night was the first night she was on the pump, so we will see what today brings!

This last frustration episode with GI confirmed that we need to switch now.  It hurts so bad.  One, I don't want to start over.  I don't want yet another opinion.  I don't want more speculation and have to retell everything again.  I am fearful that we will run into the same situation as before or something worse.  However, at some point this unnecessary stress needs to be eliminated.  Lydia deserves to work with someone who cares for her and appreciates her.  Someone who looks for her and will give her a chance.  I owe that to my daughter.  So putting aside all of my fears, frustration, anxiety, worries, I pushed through and sent the request.  The medical director now has the information and we will wait.

I am praying that today will be a much better day.  Yesterday was an improvement.  Yesterday Lydia was even able to get herself in the crawling position all by herself.  That girl amazes me.  She does not feel well and she still pushes herself to do stuff.  It was pretty cool.  I had tears in my eyes.  She is even working really hard on her transitions from sitting to laying and laying to sitting.  Also, she is so smart.  The stuff that she figures out in play with her sisters, still blows my mind.  She is capable of so much.  I am SO blessed.

This storm has been pretty intense.  It has been a long week with a very sick baby.  The other girls have done a great job at helping her get better.  Lydia is so blessed to have those girls.  My patience have been tested and tried.  However, as storms keep rolling in I find it easier and easier to just trust.  It is still really hard.  There are many times I feel like walking away, but I feel Him here.  I know He is here.  It is in the small things.  He is here and He will not forsake me.  Even when the winds are raging, the rain is pouring, you are dodging the lightning bolts, He is there.  He is holding you and He is just waiting for His perfect timing.  Not easy, but so worth it. 

Ellen also said that she prayed and asked Jesus in her heart.  Oh how happy I was.  She is such an amazing kid.  She is so on fire for God, learning His Word, doing as He asks.  We have been having a lot of faith conversations lately.  We talk about how important it is to constantly rely on God, knowing we cannot do anything without Him.  What great teaching moments God has given to me, but to my children as well.  What a beautiful blessing that I never expected.

Sometimes when you get to the other side of the storm you question why you were even stressed to begin with.  But during the storm the emotions and feelings, the doubt, the frustration, the aloness are real feelings.  While you know you should not feel them, it is real.  Faith is not something that comes easy and I think when we feel like we have it mastered, God gives us something else.  It is in those storms that we grow, our faith strengthens, we learn, and we become better people because of them.  Or that is how I want to look at it.  Through every storm I have become stronger and I know that I am a much better person that I use to be.  Praise God.

We are not through this storm, but we are getting there.  God is teaching and using us.  God has some great things in store.  While I was writing this, I had to step away to get Lydia to find that her pump did not work last night either.  Maybe God is saying give it time, Lydia can get to the fluid that she needs.  Or maybe it is just a laughable moment.  Either way, we will try again tonight, that is if she does not surprise us and drink her goal!

Some verses that were given to me in this storm by some friends:
In Psalms 121 it says that "He will not let your foot slip"
2 Cor. 4:16 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.
17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison,
18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

IPeter 5:7 "Cast all your cares on Him, for He cares for you." 

Some great encouraging verses.  Thank you and thank you God for your faithfulness and your promises.  Thank you for being patient and being there for us.

Our prayer requests are: that she can drink her 16oz a day, she can gain weight, that she begins to heal, her lungs get better and her coughs gets better.  Patience as we wait for a new doctor and patience to continue to weather the storms.  I also pray for all of you, that you know our Father, and He meets all of your needs right where you are at.

As I feel the walls of our house closing in on me with medical equipment, I look at this sweet little girl.  This girl who is content and happy.  A girl who has taught me so much.  I hold her close and pray with her.  I give thanks for her and just hold her as close as I can.  The walls often seem too close, but I think about a life differently and I would not want it.  I would not be the same, she would not be the same.

Often times we cannot think of a life like hers or his.  We cannot think that we can handle it. However, when we are placed in that situation, we cannot think of life differently.  I would lose so much if I was not in this position.  I would not be the person that I am. 

I think about what I would be missing out if abortion would have been an option (it was NEVER an option, but just a thought).  It is a fear, something unknown.  Just because she had some issues, does not make her any different.  My life changed drastically with the other girls who were healthy.  There were many unknown factors, but joy and excitement nonetheless.  None of that was really different with Lydia, but a label, wrong facts, and other peoples opinions clouding a huge blessing, a beautiful baby.

We don't know what we are capable until we are there.  We don't know our full potential until we run the race.  We don't know what we really need until we are given it.  So to look at something that may or may not be, to look at something that seems so big and to give up on that before even trying, we are robbing ourselves of the greatest blessing.  The road is not going to be easy no matter what.  We live in a fallen world, we are why do we think that we are better and make an uninformed decision.  Just because one person says it is not worth it, why give up before you start the race?

Fear can get the best of us, but it is that fear that gives us the greatest blessings too.  Walk with Him in faith, trust His plan He has set before you, and trust that He knows better than you.  You will not be disappointed, He will be there, He will hold you.  Even when you do not understand.  Constantly look at who you are and how you changed because of that fear, because of that storm.  I know that I never thought I could do what I am doing, never thought I would be a stay at home mom, much less taking care of a specially abled child.  The love and the joy, the laughter and even the storms, have made me who I am today and I would not change one thing.  The same goes for all my children.  They are fearfully and wonderfully made and I think they are perfect, extra chromosone and all!

Monday, October 22, 2012

Joy in the Hopelessness

It has been a VERY trying couple of weeks for me.  I am worn out and exhausted.  I feel like I have lost all hope.  It has been very hard.  However, through it all, I am reminded that God chose me, He gave me this journey, surely I am able to handle it with His help.  But the days have been long and it seems like no one is there.  I am reminded of that quote that the teacher is quiet during a test.  I am just wondering what kind of test it is.  I feel as though I have given everything over to Him...I am just struggling.

Every since our appointment I begin to question what I am doing.  Why am I working so hard when her doctors seem to think she can't do it?  Why am I pushing when everything seems so stacked against her?  Why can't I just accept it and give up?  Am I do the very best thing for her?  I have asked how I can keep going on?  I have even questioned where God is?

The road has been so long with so many bumps and it just seems like one thing on top of another.  Don't get me wrong, we have had many great days and many praises and even witnessed many miracles.  However, right now, today, things seem more than I can handle.  Things seem way over the top.

This morning it was another day to try to get her to eat.  It was another struggle getting the food down just to see it come up again.  It was watching her struggle to breath and my heart was just aching.  It is more conversations with my husband about what to do next.  Who do we call?  Do you think it is her teeth, her lungs, issues protecting her airway?  Who should we call?  The endless questions and the continued uncertainty pains me heart, continues to wear me down.

I just want her to have a couple of days where she is not struggling.  We have had those days and they are so wonderful.  I just want to be able to enjoy her and not have all of this "extra" stuff in the way.  I don't want to continue to take away from my other children.  I don't want to have to tell them no anymore.  I want to enjoy things with them too.  I want us to be a family just enjoying activities together.  Yes, there have been days, I have not forgotten about them, but they seem too few.  It is a struggle every day, we never know what is going to happen.

I am not trying to sound negative, but I am trying to be very honest with myself.  I do understand that not everything is horrible, but in this spot today (and actually for a couple of weeks), I just am exhausted and totally worn out.  I feel like my patience have been tested to the limits, I feel like all of our resources are used up, I just feel like we are continuing to hit a road block, we are financially exhausted, and I am stressed to the max.  It is a tough situation, but there is hope.  God is working on that with me.  Today I am provided for, and that is all that I need.  Today, God woke me and her, He has given us another day.  What more is better than that?  Through this He will make us strong. 

I was reminded in a Bible study this morning that our children are a reward...each and everyone of them.  And I have a purpose as a mom, a very important one.  God created a mother for a very specific purpose.  I was reminded that she was created fearfully and wonderfully created.  She is exactly who she is suppose to be.  I have been chosen to be at this specific spot. 

So, I am trying to chose (it is extremely difficult) to be joyful even when the circumstance I am in seems hopeless.  The battling of eating and worrying about the doctors and the ups and the downs just seem endless.  The other night Eric just hung his head and was just sick of it.  When will this stop?  Will it stop?  When will there be a time that we don't have to worry and she can just live?

But even in the questions I see this smile that lights up the world.  I see these eyes that are full of life.  I see a little girl that is determined to do so many things.  I see a girl that has made a positive impact.  I see a fighter and a child God is holding so close.  I see a miracle.  I see how she has brought a family together.  I see how her sisters adore her and she adores her sisters.  I see someone who is full of life.  A hug from her melts my heart.  She laughs and giggles and plays.  She smiles and laughs and talks.  She is now frowning and it is so cute.  She loves to play peek-a-boo.  A child like any other child.  She hides her pain so well and caries herself like no one else can. 

Even when the circumstances seem so hopeless, she is so joyful.  She is doing what she knows how...being herself.  I can't help but weep.  Sometimes I feel like she is so much stronger than me.  How did I get so blessed to have her? 

I guess each circumstance has two sides to it.  You can wallow in despair and frustration or you can see the bright side of things.  You can feel defeated and ready to give up, or you can renew your strength in the Lord.  I am trying to look on the bright side and hand over EVERYTHING to God.  I struggle, but He is patient with me.  He is waiting for me to learn.

Our specific prayer requests are: For Lydia to drink (our goal is about 16 oz a day and we are currently at 4 oz), for Lydia to continue to eat well (she has been doing pretty good), for the food to stay down (Lydia has had a really bad cough and it has caused her to throw up more), for her to get some comfort with her teeth, for her lungs to heal (her 02 levels have been lower and she has been laboring to breath more), I also ask for strength as we continue on this journey, I ask that you help me hand over everything to Him and I am able to praise Him through the storm, I also pray for our family that we are able to continue to get through these road bumps and know that God is holding each one of us.