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. 

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