A Decision

Life is full of decisions.  Once you make the decision you must live with your consequences, good or bad.  Some decisions we make without thinking about and others we pray and fret about for a long time.  Some come with little to no consequences.  Sometimes it is a decision and you get something entirely different.  Sometimes you can weigh out all of the possible outcomes, make an informed decision, and something entirely different can happen.

I think about this as my husband and I are trying to make an informed decision about our daughter.  Lydia has been having problems with her feeding tube, we have not used it in a long time  (about 9 months) and we have talked to the surgeon about taking it out.  We have a possible surgery date (February 25).  We have to talk to our GI doctor (next Tuesday) to see what he says.

In the mean time, we are trying to gather all kinds of information and most importantly pray about it to see what God would like us to do.  I realize that if the GI doctor does not agree, the surgery will not happen.  So we may be preparing for nothing.  But we would like to have all of our information together because at some point we will have to make the decision.

The hard part comes with the surgery to reinsert the tube, it is a long complicated procedure.  So we need to make sure that she is ready to have it out.  We need to make sure that she can continue to gain weight and grow.  She does not tolerate the feeds through the tube right now and we have not used it for a long time.  So maybe it is just the security blanket it provides right now, knowing it is there.

Whatever the case is, it is a decision, a big one.  It is one that not only affects me, but my daughter and her quality of life.  The easy decision is to get rid of it because I hate taking care of it.  I hate finding different clothes for her, I, I, I.  But as she has taught me a thing or two about love, it is not about me.  I must take myself out of the equation and think about her and what is best for her. 

There is no real good answer.  The surgeon cannot say that yes this is the right time, there will be no cause of worry because she will not need the tube in the future.  No one knows, no one can tell.  It is faith, it is trust.  That is why it is so important to put it into God's Hands and let Him direct us and guide us. 

How hard is that to do?  I want to take over.  She is my child (really she is just on loan to me while we are on this earth, I have been trusted to take care of my Father's child).  I am going to have to deal with her in the hospital, watch her come out of sedation, console her as she is being weaned from pain medicine.  However, God is right there by my side.  He did say I would have trials and tribulations in this life.  He did promise me, however, He would be with me always, He will not leave me.

So even in the face of a huge decision, there is little reason to worry.  God has it covered.  Duh!  If I put my faith and trust in Him, He will guide me.  Yes, there is still things I have to do.  But I can pray and ask Him to guide us.  I can listen and wait.  I can gather information and I can see an answer.  Now, it may seem like the right answer and we may be taken down a path we did not think of.  But God will be there with us.  It may be the wrong decision, but one that I will have to live with.  I do believe God honors us who come to Him with the right heart and puts forth our faith and trust with a pure heart.

I think of the decision to have a third child.  We prayed and we prayed.  We tried and we tried.  After awhile we were finally pregnant.  We prayed for a healthy child.  We prayed for this child and we were so excited.  When we found out that things were not as we prayed for, we were nervous and anxious.  We really did not know what to think.  However, God lead us down an entirely different path.  One that has been amazing.  He knew what we needed.  I could have never imagined this life for myself, however, He knew.  It has been amazing.  So while some people may have said the wrong decision, the wrong path, I say I am blessed!  I say this is one amazing roller coaster that I am not willing to get off.  As tough as the toughest days are, the good days are beyond my wildest imagination!

We have decisions we make every day.  We have options and we must serve the consequences, enjoy the blessings, or figure out what the next "right" decision is.  When we are on our knees, when we come to God with a pure heart, I do believe that He honors it.  And just because we don't get what we thought we were, does not mean that it is bad or that it will not be worth it.  Lydia is worth more than any amount of gold.  She brings joy to me that is indescribable.  She is a light in the dark.  She is a true miracle of God.

And because of what I have learned from her, I am a better person.  I am a better mom.  A different path, yes.  One that we did not consider.  Would I change it?  No!  I am embracing it, hanging on, and trying to enjoy the ride.  I have learned about love and life.  I have learned the important things.  While I still have a pretty tight grasp on some of the things in this world (money) I am learning to let go.  I am trying to have complete faith and trust in God and allowing Him to guide my ways...not me.

I wish you a very happy Valentine's Day.  I encourage you to love with your whole heart and to remember that love is not a feeling.  Love is an action, a choice, a decision to love beyond yourself.  A decision to think about someone more than yourself.  It is hard but so worth it.  Lydia is teaching me to continue to think of others and not me.  Thank you Lord for blessing me.  I am the blessed one. 

Thankful; even in the tough stuff

The past couple of weeks have been pretty hard.  We have had a lot of different things happen, some tough and some not so tough.  But the hardest for me is the mundane every day things that are just getting to me.  The ups and downs of Lydia's eating patterns, the disrespect from the other kids, who are just being kids, and just the blah days.  I hate being trapped inside these walls, even though I know that it is the very best thing for Lydia and our family right now.

I need a HUGE attitude adjustment.  I am just in a funk and cannot seem to get out of it.  I don't know what my deal is.  I know that I have been questioning God, looking for answers of why?  However, I have been able to see so many blessings and kind of be thankful.  However, I think that my heart has not learned that word of contentment.  I want, I think I need this, I am entitled to that, I have suffered enough, if only that would happen.  I don't know if you have ever been there.  I am thankful, but really only to a point.  I am thankful that I have my daughter but why won't she eat.  I am thankful that there is food provided for me every night, but why can't we have more money in the savings account.  I am thankful that God let me enjoy another day, but man I wish those kids would apply the respect I have been teaching them about.  Yeah, not being content with what I have.

I love Lydia and I am so blessed to have her.  I enjoy her so much.  She just lights up my world.  She has a personality all of her own.  I don't wish that she is in any way shape or form different, however, if I am being honest, the medical aspect of things are wearing down on me.  I do feel like I am entitled to rest at this point.  She is 18 months and we have been through a whole lot with her medically.  Why can't she just eat and we get on with our lives?  Why do we have to keep battling this failure to thrive business?  Why can't we just get to enjoy where we are and not constantly have to have blow after blow (apartment is still not rented, gas prices are going up....yeah just complaining now!)  But the question I should be asking is, why can't I just be thankful that we are not sitting in a hospital room watching her fight for her life?  Why can't I be happy for what God has blessed me with already and not be longing for things that He says I don't need.

I am getting caught up in things of this world and I get confused.  Where is my faith?  Is it really unshakable?  Am I really walking in God's love and grace?  Is my faith strong enough to handle even these mundane tasks of being a stay at home mom?  Well, if I really trust God with EVERYTHING, if I put Him first, He will provide, He will walk through it with me, He will hold my hand.  Just as He has done before.  I need not look back too far in my life to see the miracles He has already given me.  Most days she is attached to me 24/7!

The world says that more is better.  The world says that just a little more won't hurt anyone.  The world says that I am entitled to this and that and something more.  The world says that I deserve it.  However, that is not what God says.  That is not what His promises say.  Shame on me, I should know better.  But it is so easy to get caught up in that and wrapped up.  It just has sucked the life out of me.  I need to be thankful right where I am at.  I have a lot of stuff to be thankful for.  However, I still struggle because I have not learned to be content and thankful, even in the time of struggle.

God said that there will be trials, there will be suffering.  I am not different.  And I may suffer for a long time, it might continue the rest of my life.  I may never see that bank account where I want it, Lydia might never get off the tube, the struggles with eating she may always have, and I am going to have to accept that, I am going to have to learn to be content with that.  Hard stuff.  But I cannot do that without Him.  I cannot do that on my own.  I need Him.

What if blessings come through raindrops, what if the pain never goes away.  Great lines from some great songs.  That is true.  What if we are called to live in pain?  What if we go through trial after trial and never get a break?  Our promises are not for here on earth always, but for our rewards in eternity.  It is hard to understand and accept that when we are caught up in the way of the world.  Does not make sense, it is not suppose to because I am different than that, I have the Holy Spirit living in me. 

I have a precious daughter (actually 3 of them!).  She is amazing (they all are!).  I love being her mom (I love parenting all of them, but Lydia is quite amazing!).  I would not change her (any of them, but especially Lydia).  She is the light of my world (they all are, but Lydia has that extra special light in her!).  However, I am exhausted from the medical issues.  I am just tired and weary and feel as though I just cannot go on.  But, I am still called to be content in this time, to be thankful and praise God.  Hard.  I am struggling at it.  I have been in a place lately that it has been super hard to just be every day.  I have failed at being a "good" mom.  I have allowed this discontentment to take over my life.  I have allowed myself to get exhausted because I am not walking with God as He wants me to.  I am holding on to stuff, I am trying to take over again.  I need to remember that He is my Master, He will give me what I need, He knows what I need  and when I need it, far better than I do. 

I am going to challenge myself to be thankful for what He has given me.  I am going to try to be content in where He has placed me.  So that means that I need to thank Him for these medical issues that He has given to Lydia.  I need to accept what I don't really want to accept (she may need the tube longer than I want), we may always have the ups and the downs of eating.  I need to be thankful that she can eat, what she has eaten, how well she has done.  There are far more things that I am blessed with than what I could ever ask for.  He knows my every need and will provide for me in His time.  However, I need to be thankful and content today.

So today I am thankful for a sweet girl that I am able to pick up and hug, a girl who makes me laugh and teaches me something new every day.  I am thankful for a loving and supportive husband.  He is devoted to His family and God and I am so blessed because of that.  I am so thankful for two very healthy, happy and wonderful girls.  They help with Lydia and Lydia just lights up around them.  They are the best oldest sisters one could ask for.  I am thankful for an amazing mom and dad.  A mom who supports me and loves me.  She is one of my best friends (who would have thought that growing up, we were like water and oil...we did not mix well).  But God has created an amazing friendship and I am so blessed because He chose her as my mom!  Thanks mom, I love you.  And lastly, today I am blessed because of an amazing friend.  She is not only battling her own fight (brain cancer) but she is one of the most giving people I know.  She is an amazing mom to six wonderful kids and she is an inspiration to me.  Today she really showed me what it is like to be thankful and full of joy right where God has you.  Today she came to get my kids (picked one up from school and the other at my house), brought me a soda, and some candy.  She is keeping my two kids overnight so I can continue to focus on being content where God has me.  Yeah, I am pretty blessed!  Maybe it just helps to write it down, but God has blessed me far more than I deserve.

Heroes

When you hear the word hero what comes to your mind?  Who is your hero?  Why are they your hero?  What have they done to make you think of them in that way?  What have they done to make you a better person?

Many kids grow up with heroes in their lives.  Many of these so called heroes are made up, something that will never be.  They come in the form of a cape and someone who can fly.  While these are not bad things in a make-believe world. I certainly don't want my children to think that is reality.  I don't want them to think that a hero can just come in and save the day and things will be just ducky.  That is not reality.  I don't want them to live in a made-up world idolizing something that will never be.  I want their hero to be someone who inspires them, who makes them better, who cares for them.  I want their hero to be real.  I want them to think about what a hero really is.  Someone who gives with all of their heart, gives selflessly, someone who makes those around them better, someone who does not think of themselves, but fights for what is right at all costs.  I can think of many heroes that we, as a society just ignore.  I don't want them to idolize someone because of money or fame, that means nothing. 

There are many things that bring me to this post today.  I watched a video today about the Super bowl's super kid.  He is a child who was born with six different congenital heart defects.  He has endured so much.  During the interview they were talking about how inspiring he was.  At the end, one of the anchors said that it must be so awesome for the boy to be there watching his heroes.  However, the boy never mentioned that.  The interviewing anchor said that this boy painted a much different picture.  It is just a game.  What he (the boy) endured was so much more than a game or fame, it was real.  It was not just about a game riding on a lot of money, it was about a life, something you don't have a second chance at.

I just started thinking, that is so true.  What we idolize as a society really means nothing in the scheme of things.  Money, greed, big house, fancy car, nice clothes, the best of this, the best of that.  When push comes to shove, none of that means anything.  My daughter's life means everything to me.  When you have been blessed to be put in a position where you can recognize this, you are rich.  You are a super hero to someone else.  You have watched someone fight and give everything they have to win their life, not a game, not some money.  Life.  This is reality.  I realize some may not have a clue what I am talking about and that is OK.  But for those of us who have watched our children, a loved one, a friend, endure more than one can think possible, that is what a hero is to me.  Someone who has beat the odds, given their life for a cause (military), someone who does not think of themselves, someone who does not want that fame, but just to do the right thing.

Look at Jesus.  He was broken for us.  He endured pain and suffering that we can not imagine.  How many of us think of Jesus as our hero.  He lost everything, He gave His life, for who?  Sinners?  Yes, people who rebuked Him.  He hung on a cross battered and shattered.  He submitted to His Father, who called Him to be the ultimate sacrifice for us, our sins.  While we were still sinners He died for us.  It gives me goosebumps every time I hear that.  And yet, we often times forget this.  We go on living for something else, idolizing things of this world.  And most of that stuff will just fade away.  Nothing, other than the promise of God will give us everlasting life.

I may be a little passionate about this.  I see people spending all day planning and preparing for a game.  Something that really means nothing.  I could not tell you who played in the Superbowl last year, but I can tell you something about my hero, what she endured.  I can tell you that it changed me.  It changed me to be a better person, to live a better life.  She inspired me do something, to reach for a higher goal, to make an impact in this world.  She does every day, just being her.  Every day she works so hard for things that come so naturally to us.  Every day she accomplishes more than I do.  She does not give up, she is persistent.  She amazes me.  And she does it with a smile on her face.  Jesus, my hero, has sent the Holy Spirit to live inside of me.  He has given me promise after promise.  He has been faithful, He has answered prayers, and has left some unanswered.  He has worked all things for my benefit, His glory.  He is amazing.  Has your hero done that for you?

I guess I just get sick of looking to people who are not good examples.  They may be good athletes, they may be cute, they may make a lot of money, they may drive a fancy car.  I want my children to look up to real people.  People who are going to want them to do the right thing, inspire them to do more, be a good role model, mimic their values and faith.  I want their hero to be someone that respects them back, who loves them and cares for them.  While it is fun to see a superstar and to watch a game, but to idolize is wrong.

The other reason I was inspired to write this post is there is a little girl who is in surgery right now getting a new heart.  She has waited her whole life, in the hospital for a new heart.  She has fought for that new heart.  But not only that.  There is a family who is mourning the loss of a child, sibling, son/daughter, mother/father, aunt/uncle, friend.  Someone who gave life to another person selflessly.  Someone who realized that a life had ended, but that the beat of their heart could give life to someone else.  How amazing is that.  A true hero that we may never know of.  We may never hear the story.  But one that I look up to.  One that inspires me to be better.  I can't even imagine what either family is feeling right now.  One is getting life because another life ended.  One is mourning a loss and had to make a tough decision to allow life to go on for someone else.  How beautiful is that.

God works in amazing ways.  If we can embrace these miracles, these heroes that He has placed among us, what a blessing we can receive.  I feel like the most blessed mother most days to be able to parent someone like Lydia.  She has fought, she has battled, she has won.  Each day she wins.  Each day she lives to the fullest.  Each day she inspires someone.  She is my hero.  Heroes come in all shapes and forms, who is your hero.  What have they done for you to make you a better person, to inspire you?  God gave me Lydia to constantly remind me of what Jesus did for me on the cross.  To be reminded of who I hold the highest in my life.  I am so blessed.  I am so blessed.

Reasonable Understanding

Yesterday my morning started off at 2AM with two girls in bed with me, wide awake and a husband who was already at work.  I really did not want to be up that early.  Eventually one went back to bed and the other decided to stay awake.  At ten to six the other one woke up from the day and miss Lydia was still awake.  I decided to make the best of it.  I looked out the window to see a four foot drift behind the truck, I had to get out to take Lydia to the doctors.  So I made breakfast for Allison and went out to snow blow.  I could not even move the snow blower, the wheels were locked.  I was frustrated.  So I tried to start it in the garage, no luck.  I took the shovel to that four foot snow drift and it was against me.  It was hard blown snow and it did not want to move well.  After working for a couple of minutes I was exhausted.  I went in to Allison screaming because Lydia had pooped her pants and she was upset because it smelled.  It was not bothering Lydia as she sat on the floor playing contently.  I called my husband crying begging him to do something over the phone to make the snow blower work so I could get the truck out.  He told me to settle down and I just cried harder.  I was thinking, God really?  Hasn't my life been hard enough, don't I deserve a break?  But I went back outside and shoveled.  I took the truck out and I was able to get it through the first drift, but did not realize that there was a second one there.  Oops, the truck was stuck.  Allison is outside screaming at the top of her lungs at this point because she does not want to smell Lydia's poop.  I wanted to join her.  I dug the truck out and came inside.  Allison kept screaming and I screamed back at her, partly because I was completely deaf and could not hear anything.  I gave her a spanking, yes I hate those spankings that are done at inappropriate times, I felt guilty.  But we discussed forgiveness and how it was wrong that mommy spanked out of anger, but you can't scream for no reason.  I did take care of Lydia's smell and Ellen came down the stairs.  Breakfast made for her, Lydia fed.  The neighbor is standing at the door while I try to french braid Allison's hair, praying the bus was not here yet.  Thankful for a late bus!  I quick get in the shower to take care of myself and dress to realize that we need to leave.  We are driving in and I knew I needed an attitude change so I decided to pull over for some coffee.  I get in the drive thru and my window is frozen up.  Really?  Get my coffee and continue on to the doctors and I am stuck by a train.  Really?  Could one more thing happen?  Well, we made it to the doctors and actually with a couple minutes to spare.  Not sure how that happened!

I think we all have mornings like that.  The stress of the day overwhelms us, we make poor decisions, we question why, we feel alone.  However, I did leave out the most important detail of the morning.  When we were driving into the doctors, in the sky, there was a rainbow.  Ellen said, "Mom, that's odd that there is a rainbow, it did not rain, it is only a partial one, and in a very odd spot."  Yes, Ellen you are right.  I believe God placed it there just for me to remind me that I am not alone, to be reminded of His great promises.  I am sure other enjoyed that rainbow too and I prayed that they too were reminded of the promises God gives to us.  How awesome is that, in the midst of my mini-melt down (well not really, just a really bad morning) God is still there, He was actually visible.  He is reminding me of His awesome Word.  Completely took my breath away.

Lately, in every single devotion, reading to the kids, or just meditation in the Bible, I have been reminded that I am never alone, God wants us in our brokenness, God's way will not make sense, but we need to continue on our Faith adventure.  We need to trust God.  Over and over He keeps reminding me.  He will not let me forget.

So, I want to just break for a second and share with you some of the stuff He has revealed to me, before I continue with my story!  "Jesus took some bread and blessed it.  hen he broke it in pieces and gave it to the disciples, saying, "Take and eat it, for this is my body." Matthew 26:26.  Jesus body was broken for our salvation.  His broken body reminds us of what it means to be broken, but beautiful.  Our brokenness makes us useful and pleasing to God.  I can't even put into words how amazing this revelation was to me this week.  My brokenness, my ugliness, God wants me just like that.  His Only Son was broken for me and how beautiful that is.  "The LORD had said to Abram, "Leave your native country, your relative, and your father's family, and go to the land that I will show you.  I will make you into a great nation.  I will bless you and make you famous, and you will be a blessing to others." Genesis 12:1-2.  I am not sure that I could do what Abram did.  I am not sure that I could leave everything.  However, I must obey God.  I know that most times I will not approve of God's plans, I realize they are not easy and often times there is suffering, and most times it makes no sense to this world.  However, the fulfillment of God's promises will go beyond my own ambitions by an infinite degree.  I know that the blessing will more than match the longings of my heart.  AMEN!  And the last verse that spoke to me is "God has now revealed to us his mysterious plan regarding Christ, a plan to fulfill his own good pleasure.  And this is the plan; At the right time he will bring everything together under the authority of Christ-everything in heaven and on earth." Ephesians 1:9-10.  God promises me that I do not need to live in fear of a dangerous dictator, a dreaded disease, or some kind of terrible mother nature disaster.  I can rest assured that one day all of Gods plans will fall into place and all of the promises will be reality.  I know it does not make sense to the world, but it should not, I am not of this world, I only live here.  I am different because I have the Holy Spirit living in me.

As I try to make sense of the situations in my life, as I try to understand why, God is telling me to trust.  God is telling me that His plans probably will not make sense.  But one day, everything will come together, one day I will understand.  One day all of His promises I will see.  So I need to continue to live my life according to Him and not this world.  As hard is that is, I don't understand it.  But once again, I need not understand, but simply trust.  He is leading me in a way that I will not ever understand, He is leading me to a place that is far beyond my wildest dreams.  I will be blessed more than I deserve.  I already am.  Just like that glimpse of the rainbow, He has not left me nor will He ever.  He will be beside me in the darkest of the dark problem, He will be by my side, carrying me when I need, and He will never leave.

As I was thinking of this, feeling guilty for my actions yesterday morning, I decided to make a Valentine's board.  Reasons why mommy loves Daddy, Ellen, Allison, Lydia.  I am reminded all of the time of why God loves me, what He has done for me, the promises He has for me.  Have I told my family?  Does my family understand what I would do for them.  So in our kitchen I have a heading for each one in our family.  Each day I add a new heart to tell them why I love them and what my promises are for them.  A reasonable understand of why I love them.  Just as I have a reasonable understanding of why God loves me. 

So I made this yesterday as Ellen was making a Valentine's card box.  She can read now so she was able to know what I was doing.  Pretty soon she asks me to help her cut something out.  I look and she copied what I wrote..."Reasons why mommy loves mom."  It melted my heart.  It was very precious.  Her first reasons was I love you bekus you love me.  Isn't that so, I love God because He first loved me.  Simply a wonderful moment for a mom (and that was even on a day that started so bad).

And as I close today, I just wanted to add a little something to think about.  I read a blog yesterday about the Today show and a segment they had on there about the new prenatal testing.  I still don't have very strong views on this other than it should not be used as a decision to abort.  Matt Lauer was talking to the couple and said now for the good news, the baby does not have Down syndrome.  The couple said yes they were safe.  It struck me as odd.  In the media there are so many people talking about Down syndrome, however, many of those folks have never had the opportunity to have a child with Down syndrome.  They are speaking on a astigmatism or an old belief, not on fact and experience.  Because most of the families that I talk to, who have a child with Down syndrome, have nothing but good things to say.  They feel blessed and chosen.

Sometimes I do find myself getting wrapped up in that school of thought.  I guess the unknown speaks louder.  There are medical issues most times that come with Down syndrome, there are horrible stereo types that they must overcome, most times they need to work harder at attaining a common task.  And the list could probably go on and on.  However, I want to spend the last moments just telling you what you are safe from.  It breaks my heart because the joy that you are missing out on by allowing fear to overtake is so sad to me.

What you are safe from by not having a child with Down syndrome....love, pure love.  Love like you have never felt before, love like you have never seen before.  It is not something that you can quite explain until you have experienced it firsthand.  Joy like you have never seen.  Pure joy from everything.  Looking at the glass as half full all of the time.  Not seeing fault, but seeing you for you.  Loving and caring beyond what anyone has for you before.  Determination and a will unparalleled to anything in this world.  A drive that is contagious.  A laugh and a personality that is infectious to everyone around them.  A sparkle in their eye that you cannot ignore.  An attraction that is oh so deep.  A happy spirit.  Most of these things you just need to experience to really understand.  And as I write this, most of these are traits, promises my Father has given to me.  So chosen to be her mom yes, it is a calling like no other.  One that I don't think you know the entire blessing until you are living that journey prepared for you.  Special, yes...something you cannot even imagine until you are the blessed one to experience.

I would pray that the fear of the unknown would not take over you, that you would open your heart and eyes to a love and devotion like you cannot even imagine.  And I would pray that you would talk to someone who has experienced it and not allow the stereotypes to get in the way.  Is it hard...yes, one of the hardest things that I have ever done.  I would do it over and over again without thinking about it.  It has been some of the best times, I have grown and I am a better person because of what she has taught me.  Love with all of your heart.  Trust in God that He knows better for your life than you do!

What if I can't?

I just wanted to preface this journal.  This is raw feeling and emotion, I am doing this to just let some of the stuff out that I have been keeping inside.  I am not seeking anything from this, I don't want anyone to feel sorry for me, I just really am doing it for me; just to let it all out.  These are really my deep personal thoughts today.  After a stressful weekend and a small break down, I just need to release.  I struggle with these posts because I really am not seeking anything or trying to make anyone feel sorry for me or anything like that.  But as much as I have been fighting the urge to sit down and write, I feel God pushing me to continue to share the journey He has set before me.

With that being said, it was a rough weekend.  I just came to a point where I knew the behaviors and patterns I have been doing are not healthy for me or my family.  I have been playing the pretending game.  I pretend everything is going good, but most days you can find me rocking Lydia and I am sobbing.  I attempt some housework or to make a meal or play with Allison, but stress and this overwhelming feeling of I can't do this anymore, I am not cut out for this journey comes over me.

Lydia's eating has gotten the best of me lately.  I am mom, it is my job to feed my child.  I worked so hard for over a year to pump milk for my baby because I believed it was the very best for her.  I wanted to feel as though I was doing something for her so I pumped, I endured painful infection after painful infection.  Even when the stress was high, I still pumped.  I had a HUGE support group cheering me on.  My husband was super supportive too.  A special lactation consultant was one of my biggest fans along with some awesome nurses.  But that was my desire to feed my child to see her grow and thrive through all she has been through.  I was her mom and I was suppose to be providing her food.

As we transitioned to eating solids, I have become the primary feeder for her.  I have listened to our speech therapists, doctors, nurses, read things, I am part of support groups, to know the very best for her.  Day after day we teach her to eat, I try to be as patient as I can, I try to nourish her so she can continue to grow and stay strong.  She did very well.

Then we had a time when she was not growing so well.  We worked with all kinds of different people to get her to eat.  If you ever enter our house at a feeding time, you will agree that I have gone off the deep end.  I make bird noises, sing, dance, play with toys, wear silly hats, play peek a boo, anything to get her to eat.  I use my other girls to help distract her so she will eat.  My husband helps when he is home.  It has become a family affair.

However, it is taking a toll.  The ups and downs of feeding her.  The ups and downs of watching her not want to eat.  The ups and downs about how the day will go.  With Lydia, she is fed more often because of her new anatomy.  It is hard to continue to feed her and watch her struggle.  It is hard to watch her play games, it is hard to watch her not drink.  Knowing that a lot of her lack of drinking is because of medical problems.

Talking with the doctors and specialist, they always seem to have a conflict of opinion.  So it is my job, and my husband's, to sort through everything and figure out what works and what does not.  She is anything but a typical child and she likes to walk her own line, I think as most kids do.  It is frustrating though when the medical books are written not for your child.  It is frustrating.  So we try different things and some will work for awhile but then you are left guessing.

You want the very best thing for your child, but you are unsure.  The last couple of weeks have been a huge struggle.  Before each meal I pray with her.  "God thank you for another time to feed Lydia.  I pray that You use this food to give her nourishment and allow her to grow.  I pray that you allow her to eat well and give mommy the strength to continue on this path.  But most importantly, I pray that Your Will be done.  If it is the Will to be on the feeding tube, I pray You make that clear, if it is to eat orally, again, I pray you make it clear.  Thank you for all of Your blessings. AMEN."  But time after time I am still left confused and frustrated.  I am unsure of what to do.  I am her mom, I am suppose to be able to feed her.

On Saturday we decided to pull back on the amount of food she was eating and see if that would encourage her to drink a little more.  She ended up drinking less than 2 1/2 oz and eating only about 20 bites of baby food.  FRUSTRATING!  So we decided to put her on the tube.  She has lost a little weight because she was sick and we want to stay on top of that.  We are not sure what is best and she has not had the feeding tube for "feeding" purposes for a long time.  We hooked it up and she just kept on throwing up.  NOW WHAT?  Really, we are keeping the feeding tube in as a back up and we go to use it and it makes her sick.

So we are back to the drawing board to see what to do next.  Another theory about what is going on, but no real answers.  It is getting frustrating.  Who do we call?  Who can we talk to, it is a weekend.  On Monday I will spend my day on the phone, trying to just take care of Lydia and pushing Allison aside once again.  I am sick of doing that.  I am sick of treating the other girls as if they don't exist.  I am sick of not being able to clean my house or make a meal for my family.  It is bad enough that I feel locked in my house to keep Lydia away from germs, now I am just taking care of her.  I look around my house and the mess it is and feel completely helpless.  Not only do I feel like I am a failure at taking care of my child, but my house is a mess, my other child is being babysat by the Little House on the Prairie and I am a mess.

I wasn't cut out for this.  I never asked for this.  We just wanted a third child.  We prayed over this child and though we said a healthy child I don't think we ever entertained the thought of an unhealthy child.  Why us?  Why can't we get a break?  Why can't it just be normal?  Haven't we suffered enough, can't it just be easy for a little bit?  Why can't you come and allow her to feed?  What am I suppose to be learning from this?  Are you still there?  Do you even care for me?  How can this be for my good, I am making myself crazy.

The one thing I loved about being saved is that the Holy Spirit lives in me.  I have these thoughts and then I think of the many blessings.  It does not always take away from what I am feeling, the anger I am feeling or the frustration, but it helps.  It allows me not to dwell in that place so long.  However, since I have kept this in too long, it is a bit longer process of releasing this time.

I remember a time not too long ago that I would have loved having this trial as I sit by Lydia's bedside not knowing if she would live or not.  I would have loved this trial because she was eating...something I thought that she would never accomplish.  I would have loved this trial because we were in the comfort of our own home and not in a hospital surrounded by machines.  Isn't it funny of the things we wish for.  If we could just absorb the moment and understand that it will not last forever, that God is walking through this trial with us, that He has not left us, and as crazy as it seems, it will be for our good.  Those are hard things to accept when you are in the trial.  For me too, it is hard to just let go because I still want to control things.  In the hospital I think that I did better because there were other people there telling me what to do, most of it was totally out of my hands, and I was focused on the task at hand with little distractions.  I don't have that luxury now (never thought of that time as luxury!).  I also feel like it all rest on my shoulders and it does not.  I do not have to cary that burden by myself.

I know that the Lord is still teaching me and pruning me and working on me.  I am struggling and that is OK.  I am not a perfect mom and I don't have any of the answers for what is going on now.  I need to continue to be in prayer, in His Word, and embracing the moment.  I need to to continue to count my blessings and do the very best that I can.  But it is OK to admit that I am struggling.

I realize that this situaiton is far beyond what most people can understand.  I don't need people to understand, but I need an ear to listen, a word of encouragement, a Bible verse.  I cannot do it alone.  A hug or a friendly smile is sometimes what is needed to change a day.  I need to remember that as I try to be the Hands and Feet of Jesus.  I need to continue to try to look beyond my circumstance (it has been really hard for me as it has totally consumed me) and be the Hands and Feet of Jesus for other people.  It does take a village to raise our children, we should be lending a hand to help one another out.  I pray that I am able to do that more and more.

I know that my tomorrow is held by God.  So I need not worry.  Can someone please tell my heart that?  I care about her so much and I would do anything for her.  I would do it until I can't.  I felt like I was at that place this weekend.  But talking with my wonderful husband and just being open to God, I feel like I can pick up the pieces and attempt again.  He is my strength.  I don't understand what we are going through and quite frankly I do not agree with it at all.  But I know He is walking through it with me, He will not leave me, and no matter what I think, He has my best interest at heart.  His ways will not make sense to the world, but His way is the only way!

Please continue to pray for our family.  Specifically for me.  I am struggling and hurting right now.  But I know He is holding me and because of that I can continue to put one foot in front of the other.  As I wait for the doctors to return my phone calls, I pray we are able to get some answers.  I pray that I can do the very best for my daughter!

Sticks and Stones

I find myself in the quietness of the house.  Lydia is snuggled on her mat sleeping, the sun is shining on her face and all is perfect.  Quietness is something that I have taken for granted, because I am not sure what it is.  I thought that I would embrace the moment and write a little as I am sure it will not last!

The past couple of days have been a little tough on me.  We had two different evaluations for Lydia to base where she is developmentally.  While those things really should not matter, no matter how much I tell myself, they sting.  They hurt and make me feel awful.  Neither one of my other children were tested against things that they could not do and then told how dumb they were.  OK, so Lydia was not told how dumb she is, but maybe you get the point?

I don't understand why the thought process is to compare apples to oranges?  Why we need to continue to hit families when it is an already tough situation.  I understand Lydia is delayed, she may be that her whole life.  Who knows?  My other children could be that way too.  But because of her diagnoses, she is classified and then tested and then put under a microscope as to what she can and cannot do.  It is one of the hardest things that I still have to accept and understand.  Can't we celebrate where she is and look forward to the next milestone instead of comparing her with others that don't have her challenges?  My six year old is not quite reading yet, but they do not compare her with the others and make a big deal.  She is close, she will get it. 

Maybe I am making a bigger deal than I ought to, but those words sting.  Your 18 month old is only testing out at 8 months in her physical therapy skills.  Part of me wants to jump and scream and celebrate.  Do you know everything she has been through, this is a huge accomplishment.  Do you understand her diagnosis and her set backs?  The other part of me feels as though I have failed as a mom.  Why is she not doing better, what else can I be doing?  I am failing her.

It is a tough battle.  I was not prepared for it either.  I had two healthy children, the system does not operate for them in that way.  I still can't understand why it operates this way for Lydia.  I am lost.  However, I keep pulling up my big girl pants and pushing forward.  Fighting back the tears and the emotions, pushing towards what is best for my girl.

I know that it is not going to get better.  I know I have to toughen up now and get use to it.  There will be plans in school, there will be folks who don't feel she is as worth the time as I feel she is.  There will be more obstacles, I understand.  But for the moment I just want to let you know how unfair it is, how horrible of a feeling it feels.  I know that I am not alone, I know many others go through it.  It is tough.  It is a constant battle in several directions, but I look in her eyes and my heart melts.  I know she is worth it and more.  I would do anything for any of my girls, no matter how much the words sting.

I am trying to choose not to focus on how bad those words sting.  I think I would rather be hit over the head by a two by four than hear, constantly, how far behind my child is.  How unnormal my child is.  How much more work she needs to put into her development to get to "normal" standards.  Now, let me stop for a moment, most of our care providers are super in telling us this information, however, we have had a couple that have not been sensitive at all.  It is a constant thing that we do also.  It does not go away and that is hard to hear over and over!

So, I will stop complaining.  I want to tell you some of the things my daughter does.  She makes me smile at almost every moment of the day.  Her smile lights up a room (the other day we were in the store and Lydia smiled at someone.  I asked them what drew her to Lydia.  She said her smile.  I asked if she could tell Lydia had Down Syndrome, and she said no.  I just have always wondered and this simple question opened up a great conversation.  Some people are so amazing.  God blessed with with that wonderful conversation.)  She laughs and plays constantly.  She is stubborn.  She does not like to eat, but she will play with you, she will cover her mouth and she will laugh and play, but you have to be super sneaky for her to take a bite.  She loves to hid blocks in her outfits.  Often times I will change her and find several blocks hiding in her back, just one more thing that makes me smile.  She can do the splits better than anyone I know.  I thought I was pretty flexible when I was younger, but man she is amazing.  She fights harder than anyone I know.  She is more determined than any person I have ever met.  She will work at getting that toy in the hole until she is successful.  Amazing.  She loves more than anyone I have ever met.  She makes sure to give everyone a hug and kiss and smile.  She interacts with people and makes them smile, it is what makes her happy.  She is so many things.  Down syndrome is one of them, but that is truly what makes her her.  Lydia does not know anything else than who she is and I never want her to know anything different.

So I will fight for you Lydia.  I will do the very best that I can.  I will try to guard you from hearing those words that sting so bad.  However, I know that they are only words and do not do justice for who you are.  You are one amazing child.  You have brought our family together, you have taught us so many things.  When we could be divided about eating, you have showed us if we all work together you will eat very well.  We are all so blessed to have you in our lives.  I am sure that you are by far a greater blessing than we ever will be.  But I am honored to be your mother.  I will endure the words and I will know that they don't define you.  You define yourself.  No diagnosis or test can really judge you.  You have potential given to you by God and I am so excited to watch it grow.

I am sure if you do not have a child with special needs, it may be really hard to know what it is like to have your child judged constantly.  However, I think we all can learn something, not one of us can be judged or defined based off anything other than who we are.  Not our looks, not our weight, not our diagnosis, not our physical features, the amount of money we have or the car we drive.  My faith defines me because I was created perfectly in His image.  He is the author of my life.  But nothing in this world can define me.  Praise be to God for that.  May I always remember this lesson, may I always remember what is the most important stuff. 

Even though these days are tough to hear about how far behind my daughter is, I will rest peacefully knowing that she is right where God wants her to be!

Love Thy Neighbor

I think this is a pretty familiar commandment, Love Thy Neighbor.  I hear about it all the time about being nice to others and helping others out, we are suppose to love thy neighbor.  God has been teaching me more and more about this.  It is more than just being nice to them, it is more than just extending a helpful hand to them.  You are suppose to love them.

Love is not a feeling but a choice that we make.  I have to go out of my way to choose to love my neighbor.  And what if it is a neighbor that I don't like?  What if it is someone who has done something to me?  I am suppose to love them anyways.  The Bible says we are suppose to keep our enemies closer.  This does not fit with the way of the world.  This is opposite thinking of what the world says.  It is backwards thinking even to what I think I should do.

I have been learning a lot about this commandment lately.  I have struggled with what our tenant is doing to us.  We have opened our hearts to her, we have helped her out, we have bent over backwards for her.  For what?  To just get used and abused?  She has not paid rent in several months and now will not get out of the apartment.  She keeps telling us that we have to have a judge ordered motion to get her out (we are in the process of doing this).  But in the meantime you are living in someone else's place, not paying, and you are OK with it?

I guess I don't understand because I could never think of doing something like that.  I am pretty much law abiding and get nervous about even the small things I do that I believe that I can get away with.  I don't understand how someone can use someone and continue to do it.  I don't understand how you can lay your head down at night and be OK with that decision.

SIN.  That is why.  We are not good people, we are full of sin.  The good things you see, that is God.  It is not because I am good.  I will be really honest, I am not.  The thoughts that have filled my head lately are totally sinful and dishonest.  The things that I would love to say or do to our tenant are not what God wants me to do, in any way shape or form.  God wants me to love her and forgive her.

I am struggling with that.  I have had Eric deal with most everything because I am so angered by the things that she has done.  She has done more to me than just not pay, she has taken things away from my children because she is selfish and dishonest, she has stole from my family, and she has "checked up" on my personal things, using those things for her benefit.  Shame on her.  That is so low and dishonest.  I want to scream and shout and just be inappropriate.

Instead, God is trying to quiet my tongue and is teaching me.  What she is doing is no different than my sin.  I need to learn the repercussions of my sin, not just on my life but on others.  I need to learn how to openly forgive and to give my love away as God has given His away.  It is so hard.  We open ourselves up to give and to show love only to get hurt.  But we must not let our emotions get in the way, we must continue on. 

My heart will be guarded for the next tenant and there were lots of lessons to be learned, things that we will do differently.  However, I must find it in my hear to forgive and move on.  I have been able to pray for her.  I have been able to start to ask for forgiveness.  We may never see another dime from her, even if we take her to court.  We will try to exhaust our resources that we have available to hold her accountable for her actions.  However, I must forgive her, I must continue to love her.  I am failing at that.

I thought I was doing good, until she e-mailed me again this morning.  She just does not care.  It does not concern her that she is stealing from my family.  It does not matter to her that she is illegally living in someone else's house.  It does not matter that she has not paid.  She is only looking out for herself and her benefit.  She is tied only to her.  Her actions hurt others, her actions are unkind.  That is sin.  I must forgive it because Jesus paid the price for me so I could.  He suffered so I could forgive and spread His love and Word.  I need to be obedient to Him.

I have to say that it is difficult too because it is money.  Money really is the root of all evil.  She is digging into something that I probably pride more than I should.  While money is tight, God has always provided for us.  Our bills have always been paid and we have been able to honor our word in saying we would pay this money back.  I have to not concentrate on the money, what we would have had, or what we are losing, but on all of my other blessings.  God is so good.  Our family is healthy, we have all 5 of us together, God has allowed us to be at home for the Holidays, when so many people are sick with the flu and respiratory infections, He has guarded our home for the time being and allowed us to be healthy.  He has provided my husband a good job, health insurance, I am able to stay at home with my children.  Ellen goes to a great school as does Allison.  We have some of the most amazing support people we could ever think of.  Our church family is supportive and encouraging and Ellen's school family is prayerful and helpful as well. 

After looking at that list, I am more rich than anyone in the world.  I have it all.  God has provided.  He is faithful in His promises and I need not worry.  I need to allow Him to continue to teach me and trust Him that everything will work out for His glory and for my good.  It will be His idea of my good and not mine.  I need to put my selfishness aside and understand my sin and how it affects others as well.  I need to focus on the blessings that He has provided and be content in where He has me today.

Please pray for me as I continue to forgive our tenant and continue to show her God's love.  I pray that she may find Him on her path somewhere.  I know these are valuable lessons.  I am sure somewhere in this journey there will be others that will say something or do something, and I will have to forgive, to love, and to show them grace because God has called me to do that.  Even as hard as it may be, that is still what I am suppose to do.

I know this is my learning moment, but it is really hard to do.  I never saw this commandment in this way before.  Yes, I have always tried to extend a hand to others, I have always tried to love, and show compassion.  However, to love someone through a tough time when it is them who has done you wrong, is really hard.  I am sure I will grow greatly in my faith and who I am when I can work through this.

My prayer for you as we enter 2013 is not to reflect and see the negatives, but to look on the past and see how you have grown, to see those blessings in disguise, to be thankful for every experience God has blessed you with.  It is much easier to look back and say 2012 has been so horrible, I hope 2013 will be much kinder.  However, if we never learn from our mistakes how can we expect to grow forward?  Nothing is as horrible as it seems.  With God's love, promises, grace, and forgiveness, we are able to get through anything.  And He will be there with us.  He will never leave us nor forsake us.  What comfort we can find in that.  Look beyond your circumstances, turn your head up and you will be blessed.