Monday, September 30, 2013

Different Than I Thought

My mind is a mess as it usually is.  But some how there is a complete peace.  One that I have not experienced for a very long time.  In the mess that keeps swirling around me, my heart and mind are at rest.  There is a joy that keeps bubbling from my heart.

Bit and pieces from recent Bible studies are popping in and out of my mind.  Scripture is filling my thoughts and I am releasing all of that stuff that usually troubles my mind.  It is an amazing place to be.  And the one constant thing that fills my mind and my heart is You are Different Than This World.  It is not a bad thing at all, it is actually a wonderful thing!

When we accept Jesus Christ into our lives, we are a new creation in Him.  We leave our old life behind and pick up a new one.  We are different from this world.  God now rules our lives and His ways are our ways.  We are new.  We die to self and live for Him!  It is an amazing transformation.  One that will change us!  And I am constantly reminded of this.

I have to say that I have let the routine of everyday fog my mind of this.  It has clouded this new life.  See the world tells us one thing, yet God tells me something else.  Money is a hard issue for me, I seem to let it get a hold of me too tightly.  However, today as I noticed just a silly mistake that I made, one that could have HUGE ramifications, I realized it does not matter.  Holding this smiley little girl and teaching her how special she is, is my one responsibility.  See, when I honor God and live my life for Him, I am rich beyond measure.  I am not rich by world standard, but by God's.  I have been experiencing this over and over lately and I am so filled with joy and love.  This is what I am suppose to be doing.  And it does not matter what the world says, this is what life is all about for me.

And it does not matter what the world thinks of Lydia, she was meant for our family.  She has a purpose and she is changing people forever.  God is using her in big powerful ways!  I am blessed to be part of this amazing plan.  The world says she is different, that she looks different, that she may never amount to half of what my other girls will.  The world says that her live is not even valuable; that it is probably best to terminate.  The world says that she will just bring you down and be a drain on you.  The world says she is not worth much.

But God says she will change you.  God says she is created perfectly without flaw.  God says she matters and has a purpose and a plan.  God says that she is no different than her other sisters.  God says that she is fully able to carry out her plan.  God says she is worth everything and more because she is Mine.

She is different than this world.  She does look a little different than the other girls; just as Allison looks different than Ellen.  She is slower than the other girls.  She has not walked as early as them.  However, she did teach Ellen and Allison what it means to never stop trying.  She has taught them that despite her delays and medical complications, she is able.  She may not have accomplished it when they did, but she has on her own time and she has taught a lesson that is valuable to our entire family and those around us. 

When looking at her through selfish eyes, she can be looked at as a drain or a burden.  But when looking at her through the eyes of God, she is so much more.  While the effort is completely different with her than Ellen and Allison, so is the outcome.  Yes, at times she requires more time and attention, more money and often times more of me than I would care to give; but the reward, the feeling of accomplishment, the joy, is far greater than anything I have ever experienced.  I would give everything just to see her accomplish what it is that she has set out to accomplish.  There is a journey with each of her accomplishments, a lesson, a value, a new characteristic that she teaches each time she achieves a milestone.  I am blessed to say that I get to reap that reward. 

The things in life that are so rewarding are things that cannot be bought, things that are not easy, and things that often times that are on a path that is not yet worn.  And while we know these things, how come that decision is hard to make?  How come we allow worldly things to influence our decisions and rob us of those unexpected blessings, of joy that will change us, of lessons that we need to learn?

Lydia is different and I am so happy!  I am so proud of her because she is different.  So when the world says she is different, I am encouraging myself to stand up and say "Yes she is, and I am proud of that!"  Thankfully she is different and that different can remind me that I am different too.  I am not of this world. I am of God.  I am His.  I have a new life in Him and I am not of this world.  I am in this world to make an eternal difference.  She is crafted from His Hand and she is different too (just as we all are).

Different...isn't it something that we all try to be at one point in time?  Yet, it is something that causes such fear.  When we are told that we will have a baby that is different, that is not like this world; we don't want to embrace that child, often times, we want to run.  When our child is different and not like the others in the class, instead of educating and showing them what your child can do and focusing on their given abilities; we want to change them and make them more like the rest of them in their class.  Different is good.  Different does not mean bad.  Maybe we have to change our dreams, but we don't ever have to give up on them.  The path may be different than what we intended, but it always is different.  If we allow ourselves to just be on the journey we are given, to take every moment and embrace it, we will never fail and never be disappointed.    We can find great comfort in that.

As I am able to embrace this thought more and more, I am able to let the small stuff go and just be happy in that moment.  I am able to keep my eyes on my Father and not focus on each step where it is easier to stumble.  When I am able to be thankful for each step, each milestone and not focus on what she isn't doing, what she can't do I am filled with a joy that is unstoppable.

Monday, September 23, 2013

Indescribable Joy

Yesterday morning I was sitting in Church listening to the sermon.  The sermon was being preached from John 15:1-17.  At verse 9 it says: "As the Father has loved me, so have I loved you.  Now remain in my love.  If you obey my commands, you will remain in my love, just as I have obeyed my Father's commands and remain in his love.  I have told you this so that my joy may be in you and that your joy may be complete."  As our Pastor went on to preach he said that God has commanded us to be joyful.  That means to be joyful in every situation, no matter the circumstance.  Our Pastor's wife leaned forward and whispered in my ear; joy just like Lydia's.  We could all use some of her joy!

I started thinking about that.  First off, I have failed to find the joy in a lot of every day tasks.  I did find it much easier to hand everything to God when the situation was so tough.  But now that the situation is just routine task, I often find no joy in what I do.  The joy of motherhood, of being a wife, of being a child of God seems to be gone.  How easy I forget that in all things we must be joyful, God has commanded that.  And if I am joyful that pleases God.  This is kind of that continuation of my last post when I talked about obedience.  I have a long way to go to find joy in the routine of my days, but I do believe that God has given me one large helper!

I started thinking about Mary's comment, about the joy of Lydia.  I have often times heard that children with Down syndrome are so happy.  I have also heard parents who has a child with Down syndrome annoyed at this statement.  I can see both sides of the coin.  I would like to add my thoughts about this after meditating a bit on Lydia's joy.

Lydia is a very happy girl.  At almost any moment you see her she has a smile on her face.  That is her disposition in life.  However, it does not mean that she does not have other emotions.  She is stubborn and wants everyone to follow her ways.  She gets crabby.  She is sad, especially when others around her are sad.  She gets angry and frustrated.  She gets upset with her sisters when they are not playing with her.  She has all of the same emotion as you and I.

However, I would argue that we often times look at the negatives of what an extra 21st Chromosome adds to a child.  We focus on the physical defects, the cognitive delays, the possible medical risks.  However, have we ever thought to think about what she adds, what a child with Down syndrome adds to our lives? 

For every shortcoming that we have, I feel like there is something else to take its place.  Just as each of my children is different in some way, Lydia is no different from that.  Ellen likes the arts more and she is a bookie.  Allison is cut and she is going to be a gymnast some day.  Ellen likes to be social where Allison has the patience of a saint. 

And Lydia.  She may be a little delayed at walking, at potty training, at doing some of the sisters were able to accomplish by her age.  But Lydia notices all of the small stuff.  She watches people very closely and imitates like something I have never seen.  She will notice every small detail.  If someone is going to the door to leave, she is already over there giving them a hug.  Lydia also has this joy that is contagious.  She has a joy that is so deep in the soul it was given to her just as a gift.

And I am not talking about joy like "happy, happy, happy" all of the time.  I am talking about a joy like what I believe Jesus was referring to in John.  A joy that is pure and holy.  I really am having a hard time explaining that joy.  I think often times you just have to meet her to understand.  She will give me a hug when she is getting blood.  She feels my pain for her and even though she is in pain; she is thinking of me.

She will reach out to a perfect stranger to give them a hug.  Today we were at the store and I was finishing checking out.  I walked around to get her out of the cart and she just started reaching for the lady at the register.  I asked the lady if Lydia could give her a hug.  Surprised she said yes.  Lydia lunged forward and hugged her.  The lady said that had made her day, that was the best thing ever.  There was a lady also waiting to check out.  She commented on how nice that was.  Lydia lunged forward and gave her a hug.  As I was putting the cart away I heard them talking about how that was the sweetest thing and that made her day.

I walked to the truck and strapped Lydia in.  I was gathering a couple of things for the next place we had to go.  I saw the lady who stood behind us and her smile lite up the world.  She waved to me as she was my best friend and mouthed thank you.  Lydia is good at spreading joy.

Lydia sees the soul of people and it is almost as though she can tell something is going on in their life.  We were at the bank the other day and the teller just seemed very quiet and reserved.  Lydia spent most of the time trying to climb over the counter to get to the teller.  I had to restrain her.  At the end of the transaction I asked the teller if Lydia could hug her.  Hesitant, she said yes.  Lydia embraced her for several minutes.  I noticed the teller had tears flowing down her face.  The teller had shared with me that she was struggling with infertility and that was just the thing she needed.  Lydia somehow knew.

Now, I am not saying that she has any kind of "special powers" but maybe with all of her inadequacies that the world says she has, her extra chromosome gave her something else, something that the rest of the world is scared of.  It is a love, a joy that is so pure and honest that it is scary at times.  She loves without boundaries, without preconceived notions, without prejudice.  She has joy that gets to others souls, a joy that others are longing for.

She may not be "happy, happy, happy" all of the time she has a joy that is indescribable.  Lydia has a joy that I wish I had; she will be my teacher!  While she may not live up to the standards of the world as far as developments and cognitive abilities, she has something far greater.  What Lydia holds is very hard to teach and I think even harder to accomplish.  And that is just who she is, no one taught her that, no one showed her that, that is just how she was made; 47 Chromosomes special.

And I get to enjoy that every day.  God already gave me someone to show me the joy...all I need to do is work on being obedient!  There is joy in everything she does, even the hard stuff.  She knows no different, that is just what makes her Lydia!

Thursday, September 19, 2013


Today I had the privilege of putting together a Bible study for our mom's group.  This mom's group is an amazing group of ladies that get together and talk and study the Word.  I am so blessed by this group of woman.  I was so excited to share what God has put on my heart about obedience.

Obedience has been on my heart a lot lately.  I think because is many ways I am not so obedient at this whole mom thing lately.  I have had a cold heart that has been full of anger.  I have been that mom who has popped the lid so many times lately over the silliest of things.  I have been very quick to yell and very slow to hold my children.

I just can't figure out why my kids have been so disobedient when their mom has been the biggest offender!  So thankful how God works.  I was given an opportunity to do a study and really it was for me.  I hope that the other woman in the room were blessed by it, but I was completely blessed by it.  Sometimes looking in a mirror is one of the scariest things to do but the best. 

God is still working on me in this area of being patient and letting things role off.  God is still working on me about handling all of Lydia's medical needs and "delays."  I am a work in progress.  But I am so glad that I am able to realize my short comings and now realize how far from obedience I am.  No one gets a blessing when I am being so disobedient!  My children learn from me and right now I am not teaching them such good things!  I am glad that God is so forgiving and understanding.

But I couldn't help but reflect on our journey with Lydia and particularly Down syndrome.  Often times her medical issues are wrapped up and lumped with Down syndrome.  That is not always an accurate view on my view with Down syndrome.  I do think it is such a blessing in so many ways.  I do not think that she suffers from anything or it makes her any less of a person.  I look in awe at all of the blessings I have received because of her.

Part of me is sad.  Sad because too often people are scared of Down syndrome and what the road may hold.  Fact is, no one knows what the road is going to hold Down syndrome or not.  A car accident could make your child a vegetable, a child could go missing, cancer could be your new norm.  No one knows but God.  That fear or often times disobedience to what God has planned for us robs us of some of the best blessings.  My heart aches for families that feel like their child is less because of Down syndrome and feels like they have to end their life before it even starts, before they even have the chance to get to know what it is like.  They completely rob themselves of one of life's greatest treasures.

One thing in particular that has made me really focus and feel so loved on this journey is the amount of people Lydia has impacted.  The lives that she has changed.  I know we don't even know the half.  I look at a school we were part of in Milwaukee and complete strangers offering their house to us for Holidays and sorts, reaching out to us and providing whatever we needed.  Classrooms full of kids writing the sweetest notes to us.  Strangers encouraging me on my blog and caring bridge site.  People all over the world praying for us.  People from all over donating to the Down syndrome awareness walk on her behalf.  Friends that I have not kept in touch with very well joining our team.  People we have just met coming beside us to show us that they support us.  The list goes on and on.  I am completely amazed and over whelmed.  May seem like such a simple thing, but I look at the blessing this little girl has been in so many lives and think, we were obedient, we had her and she has impacted lives, changed perspectives.  It is amazing.  And please know that I am not trying to pat myself on the back, but I am just saying one simple act of obedience can change lives...just as it did Peter when he obeyed Jesus by casting his nets as instructed.  God is amazing and I certainly have felt His good Hand on our life.

Down syndrome, so what.  It makes her who she is and I am proud to be her mom.  While there are still tough moments, the medical issues consume me most of the time, I am blessed.  Today her therapist was laughing at her.  She is so smart and knows just what she is doing.  It is contagious.  No matter what you just smile along with her.  Life is better because she is in it! 

Thank you all for making me (our family) feel so loved.  I do appreciate the support.  And I need it.  You will never know how much it means to me to see a comment, see someone join our team, hear someone is praying for us, someone just loving on my daughter.  Thank you!

I will include my devotion.  I hope you may be blessed by it.  God really revealed to me what it is all about.  Walk on water and He will not let you fall.  He is waiting to bless us when we are obedient.  That is just so cool to me!  Thanks again and have a very obedient day! (I am trying!)

Blessings through Obedience


I think that I firmly disagree with the statement “God only gives special children to special people” or “it takes a special parent to raise a child like Lydia.”  To say that it has been an easy road may not be a true statement, but to say that I am a special parent because I am raising Lydia is also a false statement.  I do believe that God will give us exactly what we need when we rely on His strength.


I do not consider myself to be a special parent simply because I believe that I am being obedient to what God has called me to do.  I can look back to a couple years before I had Lydia and see that God has been preparing not only me, but also our entire family.  We are being obedient to what God has called us to do.


I look back to our marriage and see that God allowed us to suffer to get to a point where we could be one when facing troubles.  When we took our vows, we did not fully understand what they meant.  I don’t really think anyone does.  However, through trials and experiences, through opportunities, and studying God’s Word we begin to understand what it means to be there for each other through good times and bad, in sickness and in health and we start to better loving someone before ourselves.  We understand what it is like when two become one flesh.  Eric and I had to endure some very tough times to understand what marriage was all about, that love is a choice we constantly make to want their higher good and not our own.  And to our surprise, that was just the foundation that God was creating.  We had to fully rely on God to get us through some tough times, but in the end, we were both blessed, our family was blessed, and I think, even though we would not want to endure some of those trials over, we knew that we needed them.  God was teaching us how to rely on Him, how to trust in Him alone, and be obedient to the plan that God has for our lives, not the plan that we have for our life.


And I was a fool to think that the worse was over!  I know I thought …wow we endured some hard stuff the rest should be easy!  I may have been being obedient to Him in my marriage, but I was not being obedient to Him in several other aspects of my life.  My job soon laid me off.  My job was everything to me.  Yes, I loved Ellen dearly, loved my husband, but my job consumed me.  Now what do I do?  It did not take me too long to get another job.  And I thought I was right where God wanted me, after all I was serving Him by being a ministry leader.


I was consumed by money.  I had to work because we had to pay the bills.  However, this was not His plan.  I have to laugh now looking back at this and how tightly I held onto money.  His plans are amazing.  If I could only remember this all of the time and be obedient to Him more often.  Through this job He taught me about my faith and truth.  There were very lonely days of standing against a church trying to tell the Truth that the Word gives us.  I do believe that God blessed me leaps and bounds by being obedient to Him.  He blessed me with a close personal relationship with Him.  It is a kind of relationship that you can only achieve by going through the trials. 


And because I was obedient to Him, I found He had very different plans for my life.  He wanted me to be a stay at home mom (my husband was so elated and shocked by this revelation).  It is hard to obey Him and put aside my wants and needs (or what I considered needs). 


I was just settling into this new role of being a stay at home mom to two wonderful children.  Eric and I had tried for several years for another baby, but had come to terms that it was not God’s plan for us.  We were accepting that this is what He had planned for us.


A late night trip to the ER suspected I had miscarried.  I was saddened because we had tried for so long for another child and now there was a child that was gone before we even knew.  Such a hard time for us, but we knew we just needed to pick up the pieces and move on.  I was shocked when the next month I found out that I was pregnant.  We were all so elated.  God had once again blessed us.  We were obedient in what He wanted, and He honored that this time with a gift of life.


20 weeks in and we learned that there might be something wrong with our child.  Our child may have Down syndrome.  After tears and getting use to this idea, we felt blessed that this was God’s plan for us. We fully felt like God had prepared us for this.  After all, Eric grew up with a fine young gentleman who just happened to rock 3 21st Chromosomes and I had a cousin, who was one of my best friends who had cerebral palsy.  We felt we were ready for this new chapter God had planned for us.


It was around 32 weeks that these years and months of preparation would come full circle for our family.  We would see God’s plan in action.  It was one of the most incredible things I have ever been a part of.  Our child would have serious medical complications, medical complications that they were unable to diagnose prenatally.  However, we did find out that our baby was a girl and would have Down syndrome.  See, Down syndrome was a blessing…it meant very little to us.  We would also find out that she had a hole in her heart and there was something wrong with her stomach.


Fear and worry set in, but very little of why God.  The situation seemed so big and way far beyond our control, that we had on other option but to trust God.  What else were we going to do?  We relied on God that He had a plan far better than what we could imagine.  We were ready for whatever it was He had planed (or so we thought!).  There were hard days and there were good days.  There were days when we just clung to God’s Word because there was nothing else to do.  There were other days when we tried to walk, but we stumbled and always ended up in His arms.  God was holding us and showing us a lot about our faith, our family, our friends, and ourselves.  It was a time of great saddens, but also one of pure bliss…it still amazes me how God works.


We failed a thousand times a thousand daily.  However, God never did.  He held us, He cried with us, He carried us, and He was there always and never left us.  He is faithful and true.


We are currently sitting at a place on this journey where I feel beyond blessed.  We have a little girl that is thriving, that is continually teaching me and has made our family a much better place.  We are reaping the blessings of being obedient. 


Often times I think of obedience as a bad thing.  Today’s society is not one for obedience.  I see a lot of rebelling.  However, when I looked to the Bible for the definition of obedience it is nothing what our society says.  The general concept of obedience in both the Old and New Testament relates to hearing to a higher authority.  One of the Greek words for obey in the New Testament means “to trust.”  Another Biblical definition of obedience is “to hear God’s Word and act accordingly.”


Read Deuteronomy 11: 8-28


Once we understand obedience I think it is easier to apply it to our lives.  Once we understand that God is commanding us to be obedient so we will receive His blessings, it is easier to obey.


The Bible has all kinds of good examples of obedience.  Can you think of any?


A. Noah’s obedience saved his family from the flood.

B. Abraham’s obedience resulted in his becoming the father of a great nation, God’s chosen people, Israel.

C. Moses led the Israelites out of Egyptian bondage.

D. Joshua won the battle of Jericho by following God’s supernatural strategy.

E. David refused to harm Saul, the anointed king.

G. Peter obeyed Jesus’ command to fish in the heat of day.

H. Paul followed God’s will and took the gospel to the Gentiles


I would like to look at Luke 5: 1-11 and read about Peter’s obedience and how it blessed him and others.

None of these requests were large, but they ended up blessing Peter and Jesus and all of those people who heard Jesus speak.  See, obedience is more than just doing it for me, but doing it because God calls us to.  In doing so it also allows others to receive a blessing from your actions.  As a result of just small acts of obedience large things can happen, our lives can change.


Often times it is so much easier to be obedient to the world instead of God.  Sometimes, dare I say, I do think of what life would be like without Lydia.  Yes, my life would be totally different, however, maybe easier, but I would have lost many blessings.  Because of her I have been able to witness a miracle (I saw her dead and alive in the same breath) I have experienced things that I never would have been able to, I have had experiences that I could have only ever dreamed of before.  We really do have to be obedient, suffer through our trial to learn.  And if it were not for Lydia, I am not sure where my faith would be.  I have a close personal relationship with God that has weathered the storms of life.  He has never failed me and because of that there is closeness in our relationship that is eternal.


God gives us all kinds of blessings because of being obedient.  He gives us peace, joy and contentment because we step out in faith and obey God.  We trust Him and Him alone knowing that He will not fail us even if it is not what we want.  We experience Spiritual growth.  I have to say this is where I have been blessed the most through this trial.  Through this growth we have more faith, which makes it easier to trust God the next time and the next time challenges arise.  He also gives us Eternal blessings when we stand before Him on judgment day.  He will reward our obedience. 

As I had talked about before, there is the suffering before the blessing.  Why must we suffer?  Why must I see my child suffer?  It is because of sin.  We have the freedom of choice.  There are a lot of consequences we must reap because of sin.  Suffering is one of them.  But through that suffering, if we rely on God and bring glory to Him, we always will receive a blessing.  Sometimes it may take a long time, but there is always one there.  If we look to the Bible there are two great examples.


A. Moses followed God’s command to lead His people out of Egypt. Not only did the leader experience difficulty in freeing the Israelites from bondage; the people also complained bitterly about life in the dessert once they were released. Despite these and other challenges, Moses is known as the most important leader in the Old Testament.

B. Paul obeyed God by preaching the gospel. As a result, he suffered tremendous persecution, danger, and physical abuse (2 Cor. 11:23-27). However, because he was imprisoned, the apostle had time to write his epistles to the Colossians, Philippians, Ephesians, and Philemon. His obedience resulted in supernatural blessing (see 2 Tim. 4:7).

Why must we suffer?  If God is in control why can’t He just make me understand instead of making me suffer through something?  There are many reasons why we suffer.  And usually when I look at my life and see where I am suffering often times it is because I am being disobedient. 


God allows us to suffer for many reasons.  He allows us to suffer so we rely on Him fully.  I think in our situation with Lydia it was so large that we understood it was something much larger than ourselves and we did throw ourselves at the feet of Jesus.  For me, anyways, it was an easy decision to rely on God.  I learned really quickly too when I would rely on myself!


God allows us to suffer to prevent becoming prideful.  All good things are gifts from God and not earned by us.  I know that is contrary to what our society thinks.  But we must suffer to make sure that we are not full of pride.


God allows us to suffer so we are only worshiping Him.  God does not want us worshiping idols.  He wants us to rely on Him and worship Him alone.  Romans 8:28 reminds us that He causes all things to work together for our good.  Even if we are unable to see the good at the time, God has a purpose we just need to trust!


God allows us to suffer to bring us closer to Him, to better understand His ways.  When the situation is one where we don’t understand we know that God will teach us something new about His plan for our life.


God also allows us to suffer to demonstrate how faithful He is.  As I mentioned before, I stumbled thousands of times but He never did.  He has always been faithful.  It is hard because it does not happen on our time, but on His.  However, His way always proves to be much better than our own.


Some days it is easier to see God’s purpose, His blessings, and His plan than others.  Often times when I find myself suffering through life’s discontentments it is because I am not in good relationship with God.  For me, I am not a special parent, but I try to be an obedient parent.  I would like to think that any parent would love their child unconditionally no matter what.  I know that is not the world we live in.  But I am blessed in many ways because I have been obedient to Him.  And many would look in and say that my life is not a blessing.  However, the blessings God gives to us sometimes are not what we expect or want and certainly may seem odd to others.  Remember God is not a God of this world, He is the Creator of all and often times His ways are backwards to what society thinks.

Be encouraged that being a mom is tough stuff and God understands.  Remember when we are obedient others around us receive a blessing too.  Lately I have found my children being very disobedient.  However, when I look at their mom I see the same thing too.  No one is receiving the blessing because we all are being disobedient.  God loves us and is patient with us.  Remember this is a journey not a race and being obedient is essential to our relationship with God.  However, no one is perfect and it is a learning process!

Thursday, September 12, 2013

How Did That Happen?

My phone recently broke causing me to sift through all the files and the pictures.  As I was just about done deciding what I needed to keep and what was no longer needed; I paused for a moment on a particular picture.  It was the very first picture of Lydia.  I noticed tears streaming down my face.  They were different tears though, they were no longer tears of pain and sorrow but rather happy tears; tears of surviving.  It confirmed for me that I had started a new chapter.  But for a moment I allowed myself to just take a small journey back to something that changed me to be the person I am today.

I remember that picture as if it were happening today.  There were at least twenty five pairs of eyes looking at me in the delivery room.  There were surgery teams for me, doctors galore for this little girl we were about to meet and many nurses.  There were so many people that my husband did not know where he should stand without being in some one's way.  I felt her coming out and I heard her scream.  She was not placed on my chest but rushed by doctors to be looked at and examined.  The anticipation I remember feeling to just see my precious girl was almost painful.  The ache in my arms were piercing because I could hear her scream and yet not feel her, not even see her face.

I remember sternly telling the doctor that I was going to hold her before she left that room.  They did not rattle off her stats, but they looked over her color and her test scores.  They finally handed her to me.  This wet screaming ball of love.  Once placed in my arms, she instantly stopped screaming.  That would be a memory, a moment that I would need, that I would take with me for the moments, days, weeks, and months ahead.  She knew her mommy and loved being in her arms.  After seconds she was stripped from my hands and left the room with the entourage of people following behind.

My in-laws made their entrance into my room only seven short minutes after she was born and there was no sign of a baby, there were no doctors or nurses.  There was one lonely mom trying to figure out if her baby was OK, trying to figure out how much she weighed, how long she was.  The only sign of a baby was my gushy stomach.  My eyes were filled with tears and my fears were great.  I was lonely and ached for my daughter.  Such as short time I was able to hold her and the future for her I was unsure of, I needed her...NOW!

As soon as I was placed in my new room I insisted that I be taken to the NICU to see my daughter.  After a quick examination they said I could go for a couple of moments to see my daughter.  The nurses pushed me through door after door, we rode the elevator to different floors, and I was pushed through winding hallway after winding hallway.  It seem to take FOREVER.  We were finally there and I had to check in to a new department.  I was impatiently answering questions just pushing to get to see my daughter, my arms were aching.  We approached the room and I wanted to leap to see her.  As I started to move forward from my wheelchair, blood gushed every where.  I was worried for my baby, what was happening?  Where was the blood coming from?  Was she OK?  I was  worried and confused.

As people rushed me through those hallways, on those elevators, down the  winding hallways that now seemed like they were closing in on me, I could not understand that it was me who was in trouble and not my sweet daughter.  This commotion was for me.  My arms sat aching for a child who lay sleeping in her crib with wires and cords and such.  No mommy to comfort her.  The fuss was about her mommy who was bleeding profusely and doctors and nurses were being paged to my room, blood was being ordered and I was still confused aching for my daughter.

They placed me in my bed and all I could see is my brand new slippers I had picked out perfectly for this grand occasion were soaked in blood.  It took them several hours to get me stable.  Those were hours that my baby lay alone with no mommy.  I could not go see her for several hours after that as I had to be closely monitored to make sure I was OK.  Oh how my arms ached.  But I did have one brief moment that would help carry me through, a moment that she was in my arms and knew that I was her mommy.  One brief moment that mommy was able to comfort her and make it all OK.

How did we get here, how did this happen?  How were we going to make it through.  I still cannot comprehend some of the things Lydia had to go through, some of the things we saw and had to endure.  However, I smile and know that God was holding us.  This was all part of His divine plan.  We trusted Him and knew that no matter what happened, we would try to bring honor and glory to Him.  He is our rock and I never knew it until we faced trials of this splendor. 

To be honest, I think that we asked several times how this happened.  And mostly it was not how did Down syndrome happen?  It was more like how did it happen that she was so sick, that she needed so many surgeries, that our family had to be ripped apart, that we had to watch our daughter suffer like this.  How did it happen

I think back to some of those very dark days, as she lay in a hospital bed and I was unable to hold her, as doctors scurried about the room trying to save her, we heard her heartbeat flat lining, and just watched; praying that this was not God's plan for her to leave us.  We have watch her meet milestones we never thought were possible, we watched her doctors amazed with her progress and tried to give her the world.  We have seen our other girls show love and compassion that adults don't have and we have watched them struggle as we adjust to a life that we never could have imagined. 

And now I can say that I look on that with pride and a smile.  I can say that we have grown, that we have changed, we are stronger because of all of those trials.  While at times they still get me down, at times I feel like I can't believe that we went through all that we have, at times I still am waiting for the next major medical crises to hit  But I have realized we have survived, we have been taught, we have learned the hard way in many aspects and I would not trade any of that! 

Last night I looked at my two year old, she was sitting on her potty wiping herself.  She is not potty trained, no we are just starting that process.  But she is liking to sit on the potty, she loves to wipe herself too!  She walked over to the sink and climbed up on her stool.  She held her hands out to wait for the water so she could wash them.  She pointed towards the soap with a grunt and waited until I placed soap in her hands.  After she was done she pointed at the towel and she dried her hands herself.  She grabbed her toothbrush and brushed her teeth.  When she was done she climbed down and went to her mat where she attempted to put her PJs on.

How did this happen?  When did this happen?

Last night we picked her up from Puggles to be told that she did well.  We were told that she was keeping up with the other kids.  While she is not walking all of the time, she was looking at the other kids and trying to do what they were doing.  She was stacking blocks with them and pulling stickers off to put on her chart.  She is capable and determined to do what the other kids her age are doing.

How did this happen?  When did this happen?

It appears that I have learned when I turned my head for a second she grew up.  That is not my frail little child that looks like she could pass for twelve months.  That is not my child who is struggling to breathe and in so much pain.  No, at one point in the last three days someone replaced my little child with this independent big girl.  Her cheeks are full and look so healthy, her eyes twinkle with determination and delight.  She is trying so very hard and soaking up everything around her.  You show her something once and she has it accomplished.  She wants to do what her sisters are doing and try the things her peers are doing.

Last night at dinner the girls were signing and she picked up five new signs.  She kept doing them and was using them in the proper context.  How did this happen?  When did this happen?  I only turned my head for a moment and she is all grown up.

The pride and smiles, the feelings of accomplishment; I sometimes need to remind myself that we prayed for this moment.  I need remind myself that there were times we never thought that this was possible.  We prepared ourselves that we may never see this moment.  And not necessarily because of Down syndrome, but because of the medical issues, we were not sure what to expect with her.  Sometimes I don't want to give her the exposure and distance that she needs.  I want to still hold her as if I was trying to make up time we missed when she was younger.

She has shown me that she is ready.  While we are still cautious because of the many risks she carries, I am trying not to look at her size and only concentrate on what she is proving to me she can do.  I get wrapped up in what a little peanut she is and forget how capable she is.  She is yelling at me, "Mom it is OK, I have this.  Let me spread my wings and fly."

I don't know when it happened, but I woke up and have a whole different child.  But I also woke up a different person and I am stronger.  I no longer look back on her past, as hard as it is and cry with sadness, I cry with accomplishment knowing those hard trials have made these moments so much sweeter.  I relish in the moments and just soak it in.  I smile and am filled with pure joy as I watch her climb on that stool and grab her toothbrush.

I have been completely blessed by these milestones.  Many of them are ones that I completely missed with my other girls.  But as I have learned, I need to stop and smell the roses.  I need to relish at every moment and every accomplishment all of my girls teach me each moment.  By doing so, I don't have to stop and ask myself how did this happen?  I know how it happened because I was enjoying it right along with them!

Thanks Lydia for the many lessons you not only teach me but every one else.  I will continue to cheer you on and watch all of these accomplishments.  I will try not to hold you back and allow you to be the independent girl that God has created you to be.  Soar high and mommy will always be behind you cheering you on.  Thanks for enduring the pain and suffering you had to in order to teach mommy about herself, her faith, God, and the important things.  You are a blessing and I love you so much!

Monday, September 9, 2013

Opening the flood gates

I started off my "training session" to the third through fifth graders by asking them what they noticed was different about Lydia.  I was prepared for the worse; I told them to bring it on and be very honest.  I was not sure if I was, but I needed to do that.  To my surprise only one child raised their hand and said that he noticed her cheeks were often red.  Really?  That was all you noticed about my child?  I asked again and they said she smiles a lot.  Sigh...see these honest little children did not notice the things that the world stamps on her and defines her on and maybe even I do it to her at times.  The redness in her cheeks is either from tearing tape off of her after being on oxygen or from her dermatitis.

I was pumped and ready to go.  I gave all of the children a Karo type for a child with Down syndrome.  We talked about how God has designed us all differently.  And when you see a Karo type like this one, with three 21st Chromosomes present, it means that that person was designed specifically with Down syndrome.  And based on that, there are several physical characteristics and cognitive characteristics.  We talked about those and what it meant.  We talked about why some of the kids have blue eyes and some have brown eyes.  This is our picture of who we are; who God designed us to be.  This is our stamp that tells who we are, why we have birth marks or blue eyes or are short or tall.

I went on to explain further that there is no shot or medicine that will "cure" Lydia.  I made it clear that she does not need any curing, but that this is who she is.  She was designed like this on purpose, to have three 21st Chromosomes.  A boy raised his hand and rephrased what we were talking about.  "So if I touch Lydia, I am not going to catch anything from her?"  No, you are not.  She is just like you and me, but her design card allowed for three 21st Chromosomes and gives her some different traits than you and me.  His response was "cool!"  It melted my heart.  She even went over and emptied out his desk and he smiled and laughed with her as they played together.

I showed a video call Just Like You.  It is an amazing video about how to deal with kids who have Down syndrome.  It talks about their differences and similarities.  I always choke up during this video.  I was in amazement when I looked up and saw a third grader with tears streaming down his face.  He was moved too!

At the end we discussed the Down syndrome walk.  I told them that they can participate to show support for Lydia, to surround themselves with others who have Down syndrome and to have a fun day day.  The same little boy who was crying during the video was visibly upset because he was unable to go last year.  He said he really wanted to go and he hopes he can go this year.  I thought that was so amazing that he got it and cared!

Talking and educating, breaking down the barriers, exposing yourself to the unknown seems to be my calling.  I was so rewarded and fulfilled when I was through.  It changed me in a way that I am still unable to describe.  I was able to educate young minds and help them to understand who Lydia is...she is no different then you or I.  This is how God created her and made her for a very specific purpose, just like all of us.

I kept replaying the talk over and over in my mind.  I felt so blessed that God has chosen me.  He chose me to be Lydia's mom.  He chose me to talk to these kids.  He chose me to be on this journey.  I am reaping the benefits of this.  Because of an extra Chromosome, my life has been change, our path took a less traveled path, and I am being blessed in many different ways because of it. 

Right before I had the honor of going in and talking to this class, I started the book Bloom by Kelle Hampton.  It is a memoir of a mom who had a child with Down syndrome.  She did not find out about Down syndrome until the baby was born.  She was shocked and unprepared.  She is very honest and upfront.  I receive the book from our Pastor's wife.  She said it was interesting. 

I have not read many books with stories about Down syndrome.  Most of the books are resources and how to books.  And I often don't read many books that are not portraying the Gospel.  I do have to respectfully disagree with her position on God.  I do believe that the Bible is very specific with how we should live our life and that God is more than love.  While love is one of the GREAT aspects of Him, there are so many more!  However, I could not put it down for some reason.  I had to keep reading.

The book played with my mind in several ways.  I appreciated her honesty.  I loved how open she was.  There were feelings that I totally understood because we have walked down the road.  While we knew ahead of time and we had so many other things to worry about, there were so many similar feelings and emotions.  I felt like on some levels I could connect with her very well.

I think one of the most important things it allowed me to do was to be OK with the moments of grieving I have at times and I have experienced in the past.  While I am in the community of Down syndrome, I have not heard that other mothers have done that as well.  I know that it is OK to grieve and there is a small process, but I have not had that priveledge to talk with someone or share with someone my grieving.  I also have not had someone validate that it is OK to grieve.  I know there is a sadness of finding out and there are stories to help depict the journey we have to travel now, but I did not realize that I was not some kind of weirdo for grieving even some of the smallest stuff.

But it did one other thing for me, it allowed me to move on, to close another chapter.  Reading that book along with doing this talk for these kids, allowed me some healing that I did not even know I needed.  I allowed me to hold my head higher and put things into perspective.  For the first time I felt blessed that I had a child with medical needs.  I was so focused on her needs that Down syndrome rarely played into our worries.  While I wondered what she would look like, how she would function, how people would interact with her, what it would be like for her sisters, how my husband would react; we had more important fires to put out.  We had to make sure that we could even bring her home.  I NEVER thought that there would be a time I would be thankful for her medical needs.  It allowed me to "skip" some of that pain or grieving that Kelle Hamptom wrote about.  I felt blessed that I could hold her, sad that she had to be in a hospital room by herself, blessed that she ate something, happy that she could hold her head up after what she had been through not that she was delayed in doing so.

I realized that as we focus on our journey, we need not focus on Down syndrome or what she cannot do or how far behind she is (another gentle reminder).  Often times it is so hard to do that because the way the tests are done, the IEPs are conducted; this is one major focus; what Lydia can't, how far behind she is.  But when we truly put down all of our walls and see the person for who they are, their true beauty, it is amazing.  I saw this the day that I was talking to these kids.  I saw this in the book I was reading and I continue to see it in the communities I am connected with.  Even though we try very hard to not focus on that, our society makes us in ways.  I think each time we knock one of these walls down and allow the flood gates to be opened it is a wonderful thing.

In my marriage I had an image, an expectation of what I thought it would be.  My marriage is nothing like that image.  My husband is not that man of my dreams, he is so much more.  I never imagined I would have children.  I thought I would live in this huge house with these wonderful gardens and I thought I would be making a lot of money.  However, my life is a far cry from that.  My husband is more than I could have ever imagined, he is just not who I imagined.  I never imagined kids, but I have three beautiful girls.  They are all different and wonderful in their own created ways!  I am no where near rich financially, but I am rich in love and family.  I don't live in a big house.  We actually live in a very small house but the walls are built with love.  The environment is open and honest.  We don't have amazing gardens, but we have enough land that maybe one day that dream could come true.  See, just because Lydia has Down syndrome is not the reason why I am visiting Holland.  We all do in our different ways.  I would venture to guess that no one is living their picture perfect dream of what their life would be.  So if we put those expectations aside and just enjoy where we are, we are able to find blessings that we never expected; that we never thought were possible.

So somewhere in this past week I just had one of those ah-ha moments.  This is my life, this is where I am suppose to be and I am going to enjoy it.  Maybe it was that lasting image imprinted in my head of a child crying because he was affected by a video, or a silly book that allowed me to grieve and be OK with it.  Maybe it is just me submitting better to what God has written for me on this journey.  But whatever it has been, the flood gates are open and I am ready to love hard, advocate deeper, share more, be open to others better and just be who I am and proud of that.

Down syndrome or not, we all have a special design a special plan for our lives.  I know one thing that our plan for our life gurantees, is to not follow our expectations but take us on a path that is far greater.  Down syndrome is just one hurdle that more people need to experience to get over the false stereotypes.  While I know I will never change everyone's opinion on who Lydia is, or that she has a right to live and should have the same rights as you and me.  I can create an environment around her that is positive where people understand not only her but themselves too.  We all have a time to bloom and grow.  We all have a time to shine, but not all at the same time.  We will when we were created to!  We have to be pruned, have enough water, get just the right amount of sunlight before others can see that beauty.  However, that beauty is ALWAYS inside just waiting to amaze!

And as I thought that I had it all figured out and that this has changed me, has opened me up, that I am ready to write a new chapter, the wind blows and puts something else in front of me.  I was in church reading our mission moment and saw a prayer request for a girl that is a Down's suffer, that is suffering from Downs.  Oh my heart was angry and mad.  I understand that this is a cultural thing.  This little girl is living in another country much different than ours.  This is their understanding.  I am thankful that we don't hear that.  Just look into her eyes and you will see that she is not suffering, she actually enjoys life much fuller than I do most of the time.  I have to put things into perspective.  I have to remember and I am thankful that I have learned that lesson!  Praise God.

As I finish this chapter and open up to the next one, I am thankful for the experiences that God has put me on.  I walked in to visit a friend whose daughter just had surgery the other day.  Seeing her daughter lay there in that bed brought back many memories.  It made me super weak in the knees to remember what our daughter endured to get to where she is today.  I had a knot in my stomach that would not go away.  Then I looked at my girl who had now climbed up on the chair and was figuring out how to press the nurse call button.  Yes, I am blessed and I have a survivor on my hands.  Open up the flood gates, Lydia and I are both ready! 

Monday, September 2, 2013

What is Down Syndrome?

I have been asking myself this question of "What is Down syndrome?" for a couple of days now without any answer.  I have been trying to put into words how you describe Down syndrome.  I have been trying to figure out why it is so important for me to share our story and educate others about Down syndrome.  I have wondered and questioned what the importance is of sharing our story for others to judge and mock the life that we have.

Most of this comes from one simple conversation that I had last week.  A teacher approached me and asked me if I could come in and share with her class about Down syndrome.  I jumped at the chance.  After all, I have been secretly wanting to do this with my life.  I have been praying and patiently waiting for God to show me what He wants me to do.  Does He want me to write a book, does He want me to share with others life about Down syndrome.  I don't know, I have no answer on that yet, there is no direction.  But I will take this opportunity to "get my feet wet" and I will savor every moment of this sweet opportunity.

I do believe though I will never answer that question of what Down syndrome is or why it is important for me to share our story, or why I am so passionate about educating others about Down syndrome.  I want others to understand, to give Lydia a chance.  But just as I cannot completely describe who she is, what it is like to live with a child who has Down syndrome; I will never change every one's perceptions, not everyone will give Lydia a chance.  But I need to continue to try the best I can to educate those around me about her.

I have also realize something in reflecting on this recent question.  It does not matter.  I am not on a mad dash to change every one's perceptions, I am not in the grieving process that I feel like I need to defend her or our decisions.  I don't feel like I need to explain her to everyone, explain why she may not be at the milestone you would think a two year old should be at, or why she is so small, or why she has almond shaped eyes.  No...she is Lydia, sweet Lydia and I am proud of her no matter what.  I want to educate others so they will give her a chance and not miss out on the opportunity of what she has to teach you. 

When I write, I always lump her medical complications with Down syndrome.  She is just Lydia; the entire package.  But sometimes I may not accurately describe Down syndrome.  I cannot separate one or the other, because all of it makes up Lydia.  The fact is, a child who carries an extra 21st Chromosome is at risk for having some medical complications.  But, many of these extra special kiddos don't.  You see, they are no different than any other child.  Yes, a risk is there, but does not mean that they will have that.

I like to think of Down syndrome as a label.  When we grocery shop we read labels to inform ourselves.  Sometimes there are warning labels and some times there are content labels.  However, none of them accurately describe the product until you test it out.  There may be several different types of noodles, they may all have the same label, but when cooked are completely different.  Down syndrome is a label but not a definition.  I think that is extremely important to keep in mind. 

Your child may have almond-shaped eyes, one crease in their hand, a separation in the first and second toe, Petunia (low muscle tone), a crease in the back of their neck, a hole in their heart, thyroid problems, a pre-disposition to Leukemia, and the list can go on and on.  However, as I was reminded in the hospital, Lydia has very few of these physical traits.  Her physical traits do not dictate the "level of Down syndrome."  Yes some kiddos have better cognitive skills than the next, but the physical characteristics do not determine that.

Just like any child, you need to have a relationship with them, you need to get to know them.  The labels describe, but do not define a child with Down syndrome (nor any other child).  The labels that come with Down syndrome mean as little to me as the size, color, and make of my underwear.  That is information (and probably too much information in that case!) but do not make me who I am.  You have gained some knowledge about me, but you don't know me and that certainly does not define who I am.

If you simply listen to the labels and do not take the time to get to know Lydia, you will miss out on unconditional love.  She sees your heart and soul for what they are.  She does not allow social influences to distract her from seeing you, who you truly are.  She does not like to see you hurt or suffer.  If you are crying, she will come and hug you.  She loves to see you smile.  She loves when she is loved back.  She offers a hug to anyone.  There is no color, size, financial wealth, that she sees...she just sees you.

There is a beauty in a love that is so untarnished as hers.  There is a purity to her love that I try and try to teach my other kids, but they just don't get it.  She does.  There is a simpleness to her that I wish I had.  There are so many things that she is that can't be explained; but must be experienced.  I do believe that is like with anything, she is NO different than anyone else.

So how can you wrap who she is and explain it?  How can you defend who she is and that she has purpose when it is hard to explain her (or anyone for that matter) without first experiencing it?  I think it is foolish.  I can't describe my other children so how can I describe her?  You need to get to know each of them.  Each of them has something different to offer and say.  You must treat each of them a little differently because of who they are.

This is where it is really hard for me.  I can't describe her, I can educate, I can encourage you to spend time with her (or someone with Down syndrome) so you can experience first hand the things that I am trying to say, to describe.  But then I get frustrated and upset that we can't see beyond these labels.  Why do I have to describe her, why do I have to defend?  And that is simply where I am at...I don't.  She is perfect the way she was made.  She has value and worth because God created her for a specific purpose.  She is my daughter and I could not be more proud of her.

I will educate to break down those barriers, but I will not feel like I have to defend her or describe her any longer.  I want to make the world a better place for her, where it is easier for her.  However, I do realize that this is our temporary home; this is not what life is all about.  So I will educate and encourage, I will advocate on her behalf. 

I am not asking for a cure.  I don't want to change her, wouldn't want to change her.  I believe she is a piece of God right here on earth.  She is still a sinner and far from perfect, but she adds a whole new perspective to life.  She unwraps a whole new way of thinking, adds a new way of looking at something.  Sometimes challenging but always rewarding.  She makes me stop and get out of my box and open up new channels of thought in my brain.  I am still learning how to do this, how to appreciate this; but it is so amazing.  She has changed me by simply being her.

There is beauty inside of everyone, if only we could take the time to see it.  If only we could overcome ourselves, our way of thinking, our stereotypes and get to know the person. 

She was not an accident.  It was no accident that the cells divided differently when she was conceived.  I did nothing wrong to get her.  There was nothing differently that I would do in my pregnancy to change this blessing that was created just for me.  Her life is just as important as any of her sisters.  Our path may have gone a different way, but we will enjoy the scenery along the way.  We will take the different path and curves and bring glory to God for all of it.  She is a blessing, not a mistake.  It is time we as a society realize that.  It is not about changing her, but changing the world for her.  What a sad thought that we think, as a society, we are better than the next person.  The only thing we miss out on is a blessing; the opportunity to change ourselves.  What a devastation that is.

Down syndrome, what is it?  To me, it is nothing more than a label, some information that tells me very little about a person.  The possibility that a person may have a certain physical characteristic or an increased chance of this or that.  There is very little useful information that this label carries.  What is important lies within the person; their soul and ability.  Take a moment to go beyond the label that describes and get to know the person who defines themselves.

In my mind I thought of many things that Lydia is.  I have thought of many things that she is not.  However, once I sit to write at the computer, that escapes my mind.  There is no way of me accurately describing her.  I could not accurately describe a marriage much less my marriage; because each one of them are different too!  How do you describe yourself to someone? your children? your parents? your spouse? 

Help me to educate about Down syndrome.  Help me to encourage others to go beyond the labels; beyond the information and the possibilities!  Help me to encourage relationships and experiences.  Help me to create a better world for people like Lydia.  She is so misunderstood in this world.  There is no cure needed, just a new change in attitude and a breaking down bad stereotypes.