Friday, September 28, 2012

Riding Waves

Have you ever had one of those days where Satan just seems to be attacking you in every single facet of your life?  Today was one of those days for me.  No matter what I did, it seemed as though I could not get away from him.  It seemed as though he was there ready to pounce on me around every turn and bend.  I was letting him win, I did not stand firm on the promises that God has given to me.  I just learned this and discussed this this week in our Bible study.  Ugh, and he did get control.

I had lofty plans of getting some house work done and a lot of snuggle time with Lydibug since the other girls were both at school.  I had to pick up something at the doctor's office, and since I was there I should get her weight checked, right?  WRONG!  She had lost a fair amount of weight since she was last seen (just a couple of weeks ago).  She really has been losing weight since June.  She was over 18 pounds and she is around 16.4 now.  Not a huge loss, but she is eating WAY more calories than she was before.  I realize she is moving more, but she has not had a period of good gain.

Every time this is brought up to our GI doctor, they say put her back on the tube.  They tell us to up her calories.  However, we feel that everything else needs to be looked at.  Putting her back on the tube is not in her best interest for long term.  She is eating and she is loving it.  So we believe keeping those orals skills is essential.  However, why is she getting all of these calories and still losing weight?  The nurse today thought maybe absorption issues.

So after much debate in the office with the nurses, I decided just to go home and wait for a call from our doctor before I contact any of her other specialists.  However, I bearly made it to my car before I just broke down.  Could it really be possible that we are standing here again?  Can she just get a break?  Can I just get a rest?  I called Eric and just talked to him.  I am so thankful to the Lord for him. 

I just could not shake this.  I called my friend and we talked.  She has been such an inspiration to me, she is battling her own fight.  She understands the doctors and the frustration.  She understands the loneliness.  She understands how draining it can be to continuously battle.  But she understands the importance of all of that.  It was a great talk.

I also found out that a friend of ours from the Ronald McDonald's House had lost her son today.  His battle with cancer had ended.  How sad that is.  I just could not imagine.  I have my daughter still to hold and hug and interact with.  She does not.  I need to be thankful, even when we are walking in that valley.  Even when I don't understand.  Even when I don't agree with God's plans.  I need to be thankful and I need to embrace the moments that we do have.

My friend surprised me with lunch today.  We had a great afternoon.  Just before she arrived at my house, the doctor had called and said they would like to do the full blood work up.  They would like to look for Celiac's Disease, Thyroid, Leukemia, make sure the heart function is good, a complete lites work up to make sure that those are all in balance.  They want to make sure that they are not missing anything.

FINALLY a doctor is hearing us.  We were just asking the wrong doctor.  I really thought that this was more of our GI doctors responsibility.  However, all he wants to do is her to use the tube.  I want to tell him..."Get it through your head buddy, we will use the tube if we HAVE to, but as long as she has oral skills, it is in her best interest to use those.  Why don't we look at why else she might not be gaining weight and not take the easy road."  Ugh.  I am so thankful for our doctor.  He rocks and so does his staff.  He listens and he cares.  He wants to make sure he looks at Lydia for Lydia.  That is so important.  She is not a diagnosis and she WILL NOT follow what the text book says or even another patient for that matter.  Look at Lydia, listen to her mom who NEVER leaves her side.  I promise I will play nicely on a team with you!

So we went in for the blood work.  I have a list of names who can draw her blood and who cannot.  I found another name as to who cannot draw her blood.  Really, please don't show ego to me!  But my rule is three pokes and you are done.  The first one was success, but due to all of the labs they needed a lot of blood.  The vein ended up rolling before they could get all of the blood needed.  Then another lady tried and she just was fishing for a vein.  Don't you realize how painful that is.  Ugh...I really think she just wanted to poke my daughter to get her to scream since she did not make a peep the first time she was poked.  They called in our favorite lady.  She was less than pleased with what had gone on...but quickly she got the blood and we were on our way.

They told us the results for most of the tests should be back today.  They will only call if one of the labs comes back abnormally.  I am assuming all of the labs are just fine since I did not hear anything.  Well, that is what I am telling myself at least!  I am thankful for the past 14 months, I have become a lot more patient and I have learned that expecting the worse in these cases is not a good thing.  So while I prepare myself, I can anxiously wait!

She looks so good to me.  She is tiny, but she has rolls in her knees and her hands.  She did have a great length that is good!  I just want to make sure that we are on the right track.

Exhausted, yes.  Some days are better than others.  Some days you just feel like really?  But, every day is worth it, no matter what.  It is another day to live for God, another day to enjoy all of His blessings.  The highs are high and the lows are low.  At any time it can change.  I have never experienced anything like it.  I think because there is so much associated with everything that happens.  With Lydia it is not just her being sick, it is who should we call, have we included all of the specialties that should be included, where should we go, can Fond du Lac handle her or should we just go to Children's?  There are so many questions.  Often times I just feel so alone.  I just don't know who to call or what to do.  We are pushing harder to have our pediatrician primarily care for her.  It is easier for us and he does a great job.  But until thing, we will have to keep fighting through.

Good thing her smile can always melt my heart.  She just has a way about her.  Even in the roughest of storms, when I can see her smile, things will be just fine.  After all, she is the enduring the pain and the tests and the surgeries and she always comes out smiling.  So inspiring to me!  I am the blessed one. 

Tuesday, September 25, 2012

14 Months!

Wow, I can't believe how fast time flies.  It seems like such a coined phrase, but it is true.  To think, 14 months ago we were waiting surgery.  We had NO CLUE what our journey would be like.  I am sure that fear and anxiety was over taking me, even if I did not want to admit it.  I know God was holding us, and He had a great plan, but scary none the less.

My husband asked me last night when we can stop celebrating every one of her month Birthdays.  I told him never.  However, I celebrate every day with my children.  Each day is a gift.  None of us are promised tomorrow, sick or not.  We need to stop putting off what we say we are going to do, and get it done.  There may not be tomorrow.  The important stuff, our salvation, our time with God, spending time with our children, telling our spouse what they mean to us.  I am not talking about laundry and cleaning, even though I have a hard time with that.  I do have to say I am getting better with that.  I usually start off the day by asking God what His "to-do list" for me looks like.  I try really hard to make them match, but often times fail.

Lydia had therapy today and I just love hearing how well she is doing.  Not that I need that for verification, but it does feel good.  To see that she is a child just like any other, is very encouraging.  She has a smile and a laugh that is contagious.  She has a determination like none I have seen before.  She is stubborn (just like her father!!!!) but she knows what she wants.  It is such an inspiration to watch.  And to see her sister interact with her and see that, is just an amazing thing.  Her sisters are far more determined and helping because of what Lydia has shown them.  I feel SO blessed to be part of that.  I thank God that I am able to watch that, grow from it, learn, and love beyond myself.

I do have to ask for prayers for Lydia.  She has a little bit of a cold.  It started out as allergies, but now is maybe a cold, maybe teeth.  Whatever it is, it is causing her to cough a lot.  It interrupts everything she is doing.  Including her sleep...I was up with her for several hours last night.  I pray that she can remain strong and fight this off.  She still smiles, and talks, and plays, and laughs.  It does not seem to have gotten her down whatsoever.  So I am trying not to complain about my cough either!

The other night was I was reading some blogs about Down syndrome.  Usually I don't much because I am very opinionated about it.  I think every baby should live, there should not be an option for abortion.  God has a plan and knows exactly what we need.  However, I know that is not a popular belief.  But it breaks my heart that people are missing out on the joy of these children.  And mostly because of fear or wrong information.  It makes me want to fight even harder and do more to let everyone know the blessing of a baby with Down syndrome.

I do have to say, it is a tough road.  We had medical issues to deal with, but I would not trade it for anything.  I have become a better person because of it.  I have grown and learned a lot.  Things that I would not have.  I feel truly blessed that God chose me to have this child.  God wanted me to learn these things and experience pure joy and love like I have never loved before.  It is in those tears and pain and suffering that I have found myself.

I too, did not understand just 14 months ago.  Sometimes you can not fully understand until you are in those shoes and walking that journey.  However, by educating and getting informed, you can understand better.  Surrounding yourself with people who have this disability, you will soon learn that Down syndrome does not define them by any means.  They are people just like you and me.  They excel at some things and have trouble with others.  No different than you and me.  They, however, have a harder time with a lot because they constantly have to overcome these stereotypes.  But education is the key to realizing how many myths there are about Down syndrome, and it is not how many people paint the picture.  And most of the time it is painted by people who aren't surrounded by a person with Down syndrome.

It breaks my heart that the new statistic that came out is that 94% of prenatal testing that comes back with a diagnosis of Down syndrome are aborted.  I want to cry out to Jesus and just ask WHY?  They are missing one of the greatest blessings.  I don't understand.  I can't understand.  I think that is one reason why God has allowed me to write Lydia's story....there are bad days, just like anything, but the joy is so much more.

Imagine someone telling you that your daughter would never eat.  As you are deciding what surgery your daughter should have, all the information says that she will never grow, she may die, she will live a horrible life, there just does not seem to be a good option.  You exhaust all of your possibilities and decide on a surgery.  14 months later, your child is thriving, is growing, is eating 100% on her tube.  Your daughter is full of laughter and smiles.  Your daughter has more love than she knows what to do with.  Your daughter has this bond with her sisters that is so special.  You see your daughter spread love and joy to others.  Your daughter is an inspiration.  This is Lydia's story.  See, we are not promised a future, we are not promised tomorrow.  No one can say that Lydia WILL respond this way or that.  Rather, they can say, based on what we have seen, this most likely will happen.  I have faith, I walked blindly holding onto my Father's Hand and He NEVER let go, He NEVER let me fall.  Things did not work out how I thought they should, but they worked out just as He had planned.  To explain to someone that joy and emotion you have when you see your daughter doing what everyone else said they could not do.

And when did we become a society of telling children that they can't do that?  I thought we encouraged children that they can be whatever they want to be when they grow up.  I thought we encouraged the next generation to do their very best and try as hard as they can.  Yet, that is often over looked in the medical field.  We tend to think we know exactly what will happen when we don't have a clue ourselves.  TRUST.  God is the ONLY one who knows what is going to happen. 

Sorry, I am so passionate about this.  It really fires me up.  I think it is good to read the opposing views, but it is much better to educate.  To provide the most accurate information.  For mothers, families, fathers, grandparents who may be facing a birth where the diagnosis is Down syndrome....CONGRATULATIONS!!!  Celebrate this child.  Raise this child just as you would any of your children.  They are a special blessing.  They have joy that will melt your heart.  The path will be hard, there will be days, but we all have that. 

As we head into Down syndrome awareness month, take time to educate yourself on these special blessings.  Take time to spread the word.  Let's see if we can't get more accurate information out there.  Don't be scared, God will hold you.  God knows what you need and He WILL NOT let you fall.  Don't let fear and anxiety or someone with false information rob you of the joy and blessing a child with Down syndrome will bring to your life.

Monday, September 24, 2012

First Things First

I thought maybe a little introduction to who I am and why I am blogging would be helpful.  I blog because through the past year, I have found writing to be a good escape, to have some time with God, and to get my feelings and frustrations out.  I am not a writer, but I hope and pray that Lydia's story can inspire and help other people out as well.

I am a stay-at-home mom and I am loving it.  I have three beautiful girls (5, 4, and 14 months).  I am married to my best friend.  I get myself involved in a lot of stuff.  Currently, I help teach gym at my oldest girls' school two days a week, I lead a support group for families who have children with disabilities in Fond du Lac, WI, and I lead a Bible study with an amazing group of woman.  God has blessed me in so many ways, and I am just filled with joy that He allows me to do what I do every day!

I have been married to my husband for almost 9 years.  We have traveled a great journey so far.  It has not come without much heartache and joy.  In these trials God has given us, I have found out that I am His.  He is shaping me and teaching me.  Through these trials our marriage and our friendship is much stronger.  Again, I have been taught what love is, it is a choice.  After the initial sweep you off your feet feeling is over, you are left with someone you chose to spend the rest of your life with.  It is not all fantasy and gushing (probably far from it).  But if you make the choice to love and live a life serving beyond yourself, you can experience joy beyond all understanding.  It is because God will continue to bless you as you seek His face and choose to love like He loves us.

We moved from Milwaukee to Fond du Lac about 6 years ago and bought a fixer-up house with the intent of remodeling the barn and living out there.  God had much different plans for our life.  By the time we closed on the house, we were pregnant with our first child.  Just before Christmas in 2006 we welcomed her into our family.  What a blessing that was.  I thought I knew what love was before I held my daughter.  Praise God!

Eric and I shared in some more tough trials in our marriage.  However, the Holy Spirit was speaking to both of us.  We were not fulling listening, we were trying to be in this world and a child of God.  It really does not work.  But, by God's grace He protected our marriage and kept us safe.  He was holding us, waiting patiently for us to completely take up the cross and follow Him. 

18 months later our second daughter came into this world.  During my maternity leave I was laid off from a job that I loved.  I never ever considered myself to be a stay at home mom, even though I loved them dearly.  Now I was left in a position that I was scared and unsure of.  However, God kept working in me.  He provided a job at our church.  I was the new director of children and family ministries.

It was in this position that both Eric and I became very challenged about our faith.  As there were decisions being made in the church that clearly went against God's Word, God asked us if we would stand firm.  It took everything we had to follow God.  To just walk by faith and not sight.  WOW!  We have been blessed.  He has been continually shaping and molding us.  It has been an awesome journey to travel. 

Once we knew what God wanted us to do, I quit at the church to be a full time stay at home mom.  I am so blessed that I am able to do that.  As we had been trying to have another child, we were at the point that we could accept God's plan for us.  We felt blessed to have what He had provided.  One night we took a midnight drive to the emergency room as I was experiencing a lot of pain and bleeding.  While it was not confirmed, it was suspected that we had miscarried a child.  It was tough, but we kept seeking what God wanted for us.

The following month we discovered we were pregnant.  It was awesome.  We were excited but our other daughters were even more excited.  At twenty weeks we were told that there was a possibility that our child may have Down syndrome.  I remember that phone call.  I was in the kitchen and Eric was just getting home from work.  I was sobbing and he told the kids to go outside.  We talked.  While we did not care what diagnosis our child may have, we would love them no matter what, the fear and anxiety that consumed me was almost unbearable.  I was happy to be going to woman's study and couples study that night where I could be held in prayer.

We decided not to get ourselves too worked up as God's will would be done.  Our child's story was already written.  All of the worry and the fret would not change anything.  We continued with the house project.  Not sure why every time I was pregnant we decided to do more remodeling on the house, but I guess it kept us busy and my mind off of things.

It was at my 30 week appointment when my doctor looked at me and asked me what had happened.  He said I was huge.  I was measuring at 42 weeks.  He decided to schedule an ultra sound in two weeks to see what was happening.  It was a tough 2 weeks to wait patiently and not think of the worse.  I had actually went into labor July 4, just one day before the scheduled ultra sound.  They were able to stop it and told me to go home and not do anything until my appointment in the morning.

July 5, 2011, Eric's Birthday.  We also had our ultra sound.  We learned that they could not detect a stomach and I had an extreme amount of amniotic fluid.  They wanted me to get into Milwaukee as soon as possible.  We did not even wait for the referral, we called and were able to get in the next day.

We had no idea of what to expect.  We waited.  We were called back and had the ultra sound done.  Our doctor, who we had not meet before, came in.  She briefly introduced herself and told us that our child not only had a hole in their heart, but they could not detect a stomach.  She also said that she had never seen as much amniotic fluid as I had before.  She recommended that we get an amniotic reduction that day and then be admitted to have an echo done the next day.

So our new journey begins.  We asked to be alone to pray and just talk about it.  We had the reduction.  They took off over 750 mls.  I went into labor for about 8 hours.  They were eventually able to stop it.  Doctors came in and out and talked.  I just cried.  I was so scared.  They told us possibilities of what it may mean with the stomach. 

The next morning, we found out we were having a girl!  We were so thrilled.  It had always been a surprise, but this time around, I was not strong enough to take too many more surprises!  We had the echo and it was a "classic" AV Canal defect.  It was common in children with Down syndrome.  We had also learned that our daughter would have Down syndrome.

There were so many medical issues that we had to deal with, that having a child with Down syndrome seemed very trivial.  It just was not that important.  We had bigger things to worry about.  However, God gave me such peace and just joy during this time.  I am so thankful for my relationship with Him.  I could never imagine living a life without Him.

For the next couple of weeks we would travel to Milwaukee (one hour away) to get checked and meet with more specialists.  Each day, each week was a small victory.  God was working in amazing ways.  I was on bed rest so the construction in the house had stopped.  Our other girls spent a lot of time with Grandma and Grandpas or Aunts.  It was a HUGE blessing to us to have such a strong support system.

At 37 weeks I went in for another amino.  If the lungs were developed we would meet our girl.  If they were not developed, I would get to lay in a hospital bed for a week before they could induce.  By God's grace, her lungs were developed.  After 8 hours of labor, which included 2 hours to break my water, we welcomed Lydia Ann into this world. 

I was not able to hold her very long, but after demanding that I hold her, the bond had started.  She was crying and as soon as she was in her mom's arms, she stopped.  This would be a memory that I needed to get me through so much in the coming months.  I did not realize it, but God just supplied at that moment.

She was taken to the NICU and just 8 minutes after she was born, you could look around the room and not even be able to tell that a baby had just been born.  A mom lay in her bed wondering what her daughter was going through, wondering how many pounds she was, how long she was, was she going to make it?  It was a lonely time, but I did feel God holding my hand.

In the days to come, we did find out that she was born with Esophageal Atrisa (there was a significant gap between her esophagus and her was not attached) and she had a hole in her heart.  She would have to stay in the hospital until she was able to have surgery to attach her stomach and esophagus.

The next days were a blur and were very difficult.  However, she was a miracle.  She was a sweet baby.  She was mine.  God had richly blessed us.  She was perfect. 

Lydia ended up staying in the hospital for over 5 months before she could finally see her home.  Our family found a new home at the Ronald McDonald's House.  We were blessed to have my mom or my husband's mom care for our children while we tended to the needs of Lydia.  It was very intense and hard, but we learned so much.  We felt God holding us.  To watch your child endure what she did changed me forever.

Coming home it has been my mission to educate about Down syndrome.  We are finally able to focus on that, now that most of her healthy issues are fixed and behind us.  We still have some and she will always have issues, but she interacts and acts just like any other child.

I want to help mothers turn their fears and anxiety into peace and joy, especially if they find out that their child may not be "perfect."  I have learned that there is no such thing as perfect or normal, so don't define your standards in such a way.

Love is unexpected and will take you by surprise.  You will find love in the most unexpected places.  It is a choice and not a feeling.  God chose me.  He loves me no matter what.  I mess up daily, and He still loves me.  He patiently teaches me time after time.  He forgives me.  He does want a relationship with me and He wants all of me.  But He blesses and He holds.  He does not promise an easy life, but He does say that He will be there always!

Every child deserves to be loved and treated with respect.  We all have our individual flaws.  Just because you may have a child that is not quite normal, means nothing.  There is such great joy in Lydia.  She has the most wonderful smile, a personality that just blows me away.  She is funny and engaging.  Her sisters love her more than anything.  I cannot even begin to describe the joy we have.  She may have Down syndrome, but by no means does that define her.  I will not ever let it define her.  She is my child, just as my other two are my children.  I am blessed.

One of my most favorite verses, that kept me going was, "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will gaurd your hearts and your minds in Christ Jesus." Philippians 4:6 and 7.

Please know I share Lydia's story to heal and release some of what we are dealing with.  God has also allowed me to share to help others.  I have a true passion for helping others understand the joy and blessings God gives to us.  No matter what the world says, there is joy and blessings in everything.  I pray that you will be encouraged and inspired by Lydia's story.  I pray that you will see the blessing these folks are who carry an extra chromosome.  I pray that we can knock down some of these false myths about Down syndrome.  I pray that Lydia will be accepted and embraced by others for who she is and not what her diagnosis is. 

Sunday, September 23, 2012

What do you see?

One of the things that I have wondered a lot about lately, is what do you see when you see Lydibug?  As a mom, I see my daughter.  I see a loving little girl who is very full of life.  I see eyes that sparkle.  I see the joy in her face when one of her sisters comes into the room.  I see my child.  I see a miracle.  I see someone who has overcome so much and beat the odds.

What does someone who is not connected to her see?  Do they see Down syndrome?  Do they see her scars?  Can they see a story in her eyes?  Do they just see a child?  Do they see the physical features?  Do they think that she is not as capable as someone else?  Can they tell that she has low tone?  Can they tell that she is behind developmentally? 

I wonder.  It does not make a difference to me, but I wonder.  I guess I hear that phrase a lot about how love is blind.  I understand that now.  I don't see the things that this world sees.  I see a miracle that God has given me.  I see a child who has overcome more than most people ever will in their life.  I see a child with unlimited possibilities.  I see inspiration.

Love is seeing through what the world tells you to see.  Love is making a choice to love.  I will have to say that it is a pretty easy choice to love Lydia.  And most days it is not really a choice.  But love is blind.  Love is something so powerful that makes me forget all of these things.  Love is not about me, but all about the other person.  Love is amazing when we understand what it is and how to do it.  It does not make me feel anything, it is a choice and by making that choice, God blesses me.

I remember some of the emotion that I had when I first found out about having a child with Down syndrome.  What would others think?  How could I do it?  Would it be OK?  What if?  I know that I was scared.  But I was also over taken by this strong need to love.  It would be OK if I made that choice to love.  God loved me so much that He placed this very special child into my life.  He loved me enough to give me a child who would be wearing designer genes for her entire life.  He loved me enough to give me a child with an extra chromosome.

I don't think there is anything that can prepare you for what love will do when we make that choice.  As I sit here and think about some of those thoughts, I just laugh to myself.  Most of those fears seem so silly now.  She is my daughter and how could I not love her?  She was created just for me (and my family).  She was hand picked and chosen for us because we needed her and she needed us.

There are still many things about the future that are scary, but when I think about how blessed I have been because the choice to love was made, everything just melts.  I can't begin to describe how wonderful she is.  I look at how Ellen and Allison just love and adore their sister.  I can't think of anything more perfect than that.

I am so glad that God gave us this opportunity.  This road that we call our love story gets stronger and stronger every day.  Years ago when we said "I DO" I don't think we even could comprehend what love was.  Today, I think we have a better understanding, but really know we are just touching the tip of the iceberg.  Love is a powerful thing.  Love is a choice.  Love is one of the most beautiful things, even when everything around you seems so ugly.

For us, there was no choice, but to love our daughter.  I hope one day every family can understand that.  No matter what they are facing, the choice to love is the only choice.  God will see you through if you trust in Him.

So, I guess what I am telling myself, it makes no difference what others see when they see our precious Lydibug (or any of our other girls).  Love has made me blind to what the world thinks and has allowed me to focus on what God wants me to perfect girls.