What did I do to deserve this?

I can't believe where the time has gone. She is 19 months already! She is our little miracle, our diva, our precious little one. How awesome is that! I could not have imagined where this journey would have turned out 19 months ago, and I won't even begin to imagine where it will be in another 19 months. God has incredible plans for each of our lives and Lydia's is no different.

Just this weekend I was in deep thought and prayer about my little Lydibug. I was just giving thanks as to where she is. Each day she is doing something new, learning a new skill and making us laugh at such silly things she does. She has a deep love for her sisters and it makes me just want to melt. She is constantly bringing people together and making everyone around her smile. She is a blessing that I needed, her sisters needed, her dad needed; that the world needed.

I can see my fears now from the first moments that we knew "something was not right." Fears that I never really wanted to face, but were there. Those fears of how do I love someone that is not like me? How do I take care of someone I know nothing about their needs? How do I protect my baby from the harsh reality of the world, even from myself? I think my silent fears were more of me getting over those rotten stereotypes than a real fear. When we do not know something we get scared, we listen to the wrong things.

However, I loved this girl and I did not even know it. I loved her and God knew that I needed her. She has taught me so much in her 19 months. She has taught everyone around her. The funny thing is, she has no clue because she is just being who she was created to be. That is the amazing part of it all.

And I can say in the days that come, things are getting easier. The decisions come easier, the advocating comes easier. I guess you learn that this is just part of what you were called to do. Your bond with your child grows stronger and stronger and some where along the way to gain confidence that you never knew you had. You are able to do things you never thought were possible. You realize that you are not alone, God is right there holding your hand, walking through every valley and mountain top.

There are times when I allow the "stuff" to consume me. However, there are more and more moments when I sit and watch her, and I am totally amazed. I think I get more amazed because at some point I bought into those stereotypes, I thought she couldn't do it. Even if I never said out loud, I am sure I thought it. I thought somewhere she may never do that. Or just that fear that consumed me overtook and I was not sure what it was she could do.

However, she is no different than my other children. I didn't know who they were, but I never had anyone tell me who they thought she would be. I did not know the struggles she would have, but I never had someone tell me the probable struggles she would have. I did not know how to take care of them, but I never had someone tell me that I couldn't take care of her. There is a difference. With the other girls, they were accepted at first thought, but Lydia, it has been a struggle really from the start in someone eyes. Once you get pass that, it is easier to push forward, accept, and live your life.

I can continue to reflect and go on and on. But in the living room the other night, I just was crying at how blessed I am. The question of how did I deserve this just kept coming to my mind. There sat a girl playing on the floor showing me pure joy. She kept turning herself in circles and laughing. She would look at me to verify that I was laughing and keep going. She was so proud of herself for what she was doing. She was having so much fun. I appreciate those moments, those intimate moments that God gives me to understand the blessing all my children are, these moments that we say pass too soon, but yet don't do anything to embrace them. These gifts that are on loan to us to take care of and one day return. I have been blessed because my Father knows what I need, because He is in control of my life and is providing for me everything I need.

Overall, things have been good. She is amazing. She is now climbing the stairs, she is now into everything. She is learning all kinds of new stuff. She is constantly learning and watching us to imitate us. It is way cool. She adores her sisters. Loves them! And they love her too.

Friday I was a bit frustrated as we are still having issues with this new medicine. It is causing her to throw up and not really want to eat. However, the pain has gone away. So there is good and bad. We are sorting through everything. The GI doctor wanted to admit her this past weekend to observe. Eric and I thought that was not the best idea because of her not being covered by the RSV shot. We did not want to expose her to things if we do not have a particular reason to.

Eric and I discussed more about taking her tube out and the game plan for her. Decisions are hard. Especially when you are relying on someone else to provide you the information. Eric and I have held pretty firmly that the tube needs to come out. We believe that she will do better once it is out. It is not that she cannot gain weight, it is that she has a hard time keeping it up when she is in pain. So we need to do what we can to get rid of that pain.

Making a decision based on what could potentially happen is not a way to make a decision. While we understand the capacity of this decision, we need to make sure we are doing what is best for her now. At any point there is going to be that possibility that she may stop eating and will need something to assist her down the road. However, we need to see what is happening now and going to benefit her today.

So we will watch her weight for the next two months. I will be contacting the surgeon to get surgery scheduled the end of April or the beginning of May. Getting it out is what she needs. We are at peace with that decision. And what happens down the road, we will have to deal with that then. She is not tolerating feeds through it, and we feel we are holding on to a security blanket for no reason. It may not be the cause of the problem, but it certainly is a symptom.

It is so great when God can come in and help you make decisions and you can feel at peace with them. No matter how big or small, praying and asking for guidance is important.

Today I will chose to not be consumed in the why but enjoy what I am given. I could ask why she has to be in so much pain, why me, why does she have to be different, why does it always have to be a battle? Or I could enjoy this moment that I am given, accepting that this is how God chose to make her and because of that she is perfect. She is a miracle and she is mine! To simply enjoy this blessing and learning and having fun.

I am enjoying her so much, learning, playing, laughing, having fun. I would not change anything because I would not be me and she would not be her! Praise God!

It's a medical thing

At 20 weeks we found out that our baby had some markers for Down Syndrome.  However, our OB said that it was really nothing to worry about because even though I was in the high category, there was still a good CHANCE that I would have a perfectly healthy baby.  My husband and I prayed and we got over the initial shock of have a different child.  We had to face what we had thought would be different.  After a day or so, we were filled with joy.  We could not wait to meet this special blessing, no matter what they looked like or were labeled with.  We were just excited to have another child.

It was not until I was about 33 weeks along that we discovered there were some medical issues.  They were able to tell us that she had a hole in her heart and the other complication they would not be able to full diagnosis until she arrived.  We just prayed and knew that it would be OK.  We held out hope and we were very positive about everything.

However, the medical side of things really did not hit me until we were in the midst of them.  I never realized that the medical field was so "experimental."  With my other children they had this or that and they were put on an antibiotic.  Even when Ellen had her hand surgery, we were told the most devastating news first, and then when we pressed on, it really was nothing at all.  It seemed so simple.  There was a test or a surgery or a procedure or a drug to help all of these things.

But what happens when you child has something that they are not familiar with, or there are no good answers for what your child has?  What do you do?  I thought the medical field was a science and had an answer to things.  I realize that there are not cures for everything, but I thought that there were a lot more answers than what they do have.  I thought that we would have surgery and things would be done.

I was very mistaken.  That is not how the field of medicine works.  So I went into this clueless, not even thinking that my child could have medical complications.  Then I thought that the medical field was a little more black and white.  Oh, that has proven to add to this wild ride.  I was terrible mistaken.  It seems as though every decision is experimental and every doctor has a different opinion.  The medical books are written for some kid who I don't think exists, because my child never once followed anything the books said.

It can leave a family, a parent, a sister, a brother, a grandma, a grandpa, an aunt, an uncle very frustrated.  There seems to always be more questions than answers.  There never seems to be a cut and dry answer.  It is a difficult road to travel.  You are constantly trying things, things are not working.  This is how you do the two steps forward three steps back dance.

I wish someone would have mentioned this to me ahead of time or I would have realized more.  It is frustrating.  It is a frustrating life to live.  Sometimes too, there is NEVER an answer for your child.  You must constantly live in the ups and downs.  You must never really get a good answer for your child's condition.  And sometimes you must face that there is nothing that they can do.  You must face the reality that your child may have been chosen not to make it in life.  Not to enjoy their first or second Birthday, never to come out of the hospital.

Those are harsh realities, but ones that a family who has a child who has a medical condition must endure.  As hard as those are, there are so many blessings along the way.  They are blessings that we never could have imagined.  Blessings that we could have never dreamed of.  But they are HUGE blessings. 

While the road of a medical journey is long, hard, scary, frustrating and everything else, there are many wonderful things along the way.  When you are able to get to a place to be thankful and realize this, it makes traveling the journey all that much better.  We have made some awesome friendships, ones that we would have NEVER made had it not been for this journey.  We have had some amazing opportunities, again ones that we would have NEVER had had it not been on this journey.  We have also found strength like we have NEVER seen before.  And I can't tell you what this journey has done for our FAITH.  It is amazing.

While I would take the pain away from my daughter in a heartbeat, I would never change one thing about her.  Every moment, experience, set back, trial, hurdle, mountain top has made her her.  She has been shaped and formed and molded by every moment.  Praise God for that.

I hope I can write this to encourage others who are on this medical journey.  It is not for many people, only a select few can experience and understand the true hurts and the true joys.  However, it is one that many people can learn from.  And just because your child was born healthy never ensures you will not be on this path at some point.  God holds are future and we do not know what the next moment will bring.

While at times on the journey it sucks and it is hard, keep going.  Around the next corner there is something totally unthinkable.  Take each moment for what it is and just enjoy it.  I pray for all of the families that continue to fight and battle this tough journey.  They bring so much joy and inspiration to me.  These kids are simply amazing.  I encourage you, if you don't have a child who is affected by a medical journey, get to know one.  They will change you forever.

The greatest lesson that I have learned, is years of medical school does not make someone know my child better than me.  I don't have the medical knowledge, but I have the bond with my child.  No one can take that away nor can they effectively treat my daughter without that knowledge.  It must be a partnership.  And when you are not feeling right about something, keep pursuing it.  Don't give up.

Struggles

I have to say that I felt pretty beat up after our appointment yesterday.  I feel like we have no plan to manage our daughter's pain.  I feel like we are no closer to making her comfortable than we were before.  I also feel like our one hope (having surgery to remove the tube) had been taken away.  We were unsure if this was the cause, but it seemed reasonable and at least it was something.  Instead we were given a "miracle" medicine to give her and hope that this will work.  All the medicine has done is make her very sleepy (how are you suppose to eat, much less gain weight when you are sleeping all of the time) and not want to eat.  Yes, I need to give it more than 24 hours but to say that I am frustrated, is a bit of a understatement.

I feel beat up and worn.  I feel like there are probably not many other people who can relate to this feeling.  I look at their children and they are not battling what we are, they don't understand, how could they.  I feel like this just will not stop.  When can we just have a day to enjoy this sweet girl and relish in what God has given us?  When will the constant problems stop?  When will I have to stop fighting for my girl?  Struggles.  Struggles that never seem to end.  Struggles that seem impossible.  Struggles that are bigger than me.

So what do you do when your struggles feel more than you can handle?  I have been praying, but I still don't feel like there is anyone there.  I know that this journey of faith is difficult and I know that I am NEVER alone.  But some days just feel so awful.  I feel like I have been so beaten up.  I feel like I have been so battered.  When will it stop? 

As I have been praying and asking God to show me, that thing that I needed all along was right in front of me.  It actually is at the heart of the struggle.  Her name is Lydia.  I was sitting on the floor last night just feeling so low, wondering why this was all happening.  Not really feeling like any of the pieces of the puzzle were connecting.  I picked her up and she smiled back at me.  My heart instantly melted.  Sometimes God gives us the most strength in the most unexpected place.

During all of these struggles I saw through that smile that these are her struggles.  These are real things that are affecting her, shaping her, creating her.  And in doing so she is teaching others, she is affecting others, she is a testimony.  I realized that she is battling these struggles with grace and courage.  She has been fighting and smiling through every struggle.  This is creating the person that she will be.

I am not sure if I can really put into words that moment, the smile, the answered prayer, the renewal of strength, the "light-bulb" moment, the duh moment.  I realized that in a lot of this struggle the I has been before the she.  I do put her best interests in mind.  However, when the struggle seems to big, am I putting myself in her shoes?  It is a struggle to get her to eat sometimes, but what is happening with her?  Does it hurt?  What is happening?  To watch her cry out in pain is so hard.  To not be able to comfort her is so hard, but what is going on with her?  She obviously is hurting. 

It has helped me to think of her, to really think of her.  As I am fighting for what I think is best for her, I am trying to take myself out of it and really think about her.  I am trying to think about how she handles these struggles.  She is awesome.  She smiles and she makes others smile.  She betters those around her.  She has a way of bringing everyone together.

Maybe it was a little lesson in gratitude.  To be thankful for the situation, not to find thanks in the situation.  To be able to praise God and have a TRUE thankful heart in the midst of a storm.  Maybe it is growing in love even more, to be able to purely think of someone else and not just me.  I loved that moment, it was amazing.

To say that this journey has been a struggle may be an understatement.  However, to say that I have not learned, I have not become better is also an understatement.  I can't tell you how blessed I feel to be able to take care of her, to be able to learn from her, and to be able to love her.  Most days I want to literally bite her in love (seems so crazy but my love runs so deep).  My love for her is so great.  When she looks me in the eye, I can't help but just stand in amazement.  She continues to fight and learn, she is determined.  Despite all of her pain that she is going through she is still developing and wowing other people.  She is not letting any of that small stuff (and the large stuff for that matter) get in her way.  She continues to be her no matter what the situation is.  I have a lot of learning left to do! 

I can't explain how wonderful these struggles are when I look her in the eye and see this journey.  As much as I want to say it sucks and it hurts and I am exhausted (all things that I am) when I see that cause, when God has revealed that blessing in disguise, it is all worth it.  We never really know what we have until we take ourselves out of the equation, we find a pure heart of love and gratitude.  While there are things in this life that I would love (no stress of money, a child who would not have to suffer from the pain, this that and the other things) this is what God has blessed me with.  God knows what I need better than what I know I need for myself.  That is so awesome.  I need to learn to be content in this situation, in this moment.

None of us are promised our next breath, so are we going to honor God and appreciate where we are?  Lydia is teaching me that.  So as much as I want to complain, I need to give thanks and rejoice.  As hard as the last couple of weeks have been, as tired as I am, I am here, I have a loving God, an amazing family, health, and the promise of eternity.  All of the rest of the stuff is trivial.  It really does not matter. 

I hope this makes sense.  It is hard for me to put into words these moments that God gives me.  However, they are so important and I want to make sure I try to capture them for future reference. 

My struggles, the are God's, He has been there, He is with me, and He won't leave me.  What do I have to worry about?

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!