Wednesday, January 22, 2014

Unfamiliar Familiarity

I put my blinker on and switched lanes, gently slowing down the car.  As the car rounded the curve of the ramp, my mind, my body was flooded with memories.  If I looked left there were the restaurants that we ate at, there was the place that we got our haircuts, there was the Kohl's that we shopped at, there was the Y that taught my girls dance and swimming; there was a piece of our life that came so unexpected.  If I continued right there was the school and the church that became such a big part of our lives and there was the hospital that would forever have changed us.  It seemed so familiar but so so distant.

As I pushed backed tears and continued to drive I felt lost in a place that was way to familiar to me.  It has been some time since we have been at the hospital and I was not prepared for this rush of emotions.  I was not prepared to see my sleeping beauty in the back and just be brought to my knees by these memories.  Memories that were so familiar but yet so unfamiliar to me.  Something that was so easy to describe but yet I could not put into words what I was thinking.

This is the place that I would learn that my sweet child would be born with an extra 21st Chromosome.  This is the place that I would find out that my sweet child would have some extreme medical complications.  This is the place that I would experience some of the worst pain of my lifetime, but also experience the biggest faith-high ever.  This is the place that my family would call home for over five months.  This is the place that some how we would learn how to come a strong family unit.  This is the place that I would learn how to fight, how to live on faith, how to surrender all control to my Father.  This is a place that I drove in thinking I had it all figured out and I drove out a completely different person.

Isn't life a lot like that?  I think back to the time when we received the news about Lydia having Down Syndrome.  I think about the poem Welcome to Holland that was given to me in hopes this would bring me some peace or understanding.  I think about all of the detours life gives us.  Why is it so hard to accept things that are different than our ideal?  But don't we accept them every day?  For this life is not ours; these plans are not ours.  Yet, this prenatal diagnosis seems so difficult for so many.  The road less traveled is such a scary place.  The idea of change is frightful.  Having to deal with something that we are unfamiliar with is paralyzing.

Yet, as these thoughts came and went, I couldn't help but be overcome with gratitude.  To think where we were at and where we are now is nothing short of a miracle.  To think about how much we have changed and how hard we have fought, how much we have grown and the people we have turned into.  I see this life that God has given to us and I am once again overwhelmed with emotions.  I am flooded with thoughts of thankfulness and hopefulness.  I am thankful that God chose me to experience this, as hard as it has been, is, and will continue to be.  I am given a surge of hope that we can do this, look at where we are and this sweet sweet life.  How amazing.

As scary as the road is that we face to travel, God will carry us, He will bring us through, and we will be blessed by it.  Through all of the pain and suffering that we endured with her, there is so much joy and thankfulness now.  There is a new perspective that has been given, there are changed hearts, increased faith, renewed relationships, strengthened relationships, new relationships, a new understanding of life; how precious it really is.  We all are given a journey, a story to write.  Many times it is scary and full of pain and suffering.  However, God will work all of that out to our glory and He will bless us if we rely on Him.  If we surrender what we have and let Him, we can better accept our journey and experience life in a whole new way.

My feelings are still all over the place, but to me they are a little more clear.  I am in that state where everything is so familiar, I see the same halls that I walked two and a half years ago with pain running in my eyes, fear in my soul, and arms broken because they were not holding my daughter.  I walked to the Ronald McDonald House, to my new home, and I embraced my daughters with my arms, but my heart was aching for Lydia, longing for us to be together.  I see the doctors who poured out their souls and heart to save my daughter's life and sat with me as I cried in anger and fear.  I see the places we ate, the places that helped, and the people who gave all so our family could have some kind of "normalcy."

Yet today I look at these hallways with hope and survival.  My daughter runs down the ramp of the Skyway, saying hi to people, yelling and laughing.  She is bringing joy and hope to that mom who walks with pain in her eyes, fear in her soul, and arms who long to hold her child.  The Ronald McDonald House will always be our home, it will be part of us.  Because of them we are the family we are today.  Those walls are no longer for hiding and crying, but for rejoicing and celebrating, for sharing stories of survival.  Those doctors and nurses who sat with Lydia, who were given the wisdom and knowledge to save our daughter are smiling and laughing as they see her run through the entrance of the hospital.  They are in as much shock as we are about where she is today.

I wish there was an insight mom's who are just beginning this journey could have, knowing that all of the pain and suffering will never make sense, but you will get to a place of joy and happiness.  Not all are success stories as Lydia's was, but God has amazing plans, we will not understand, but He will work them for our good AND will bless us.  None of our life turns out the way we want.  I never thought that my marriage would look like this, that we would have to endure what we have, but I never imagined I would have such an amazing guy who treats me like a queen and is an amazing father.  I never thought I would have children, much less three beautiful girls.  I never would have thought I would be a stay at home mom, but God has away of working things out far better than what we expect or dream.

I guess I really don't have a point to this post, but I wanted to share some of my feelings.  Such an amazing place to be right now.  I am so amazed at our journey and how simply amazing Lydia is.  NOTHING could have prepared me for this life, but I would never give it up.  Even on the hardest of days, I thank God for my family, our journey and for teaching me lessons only Lydia could have taught me.

Thursday, January 9, 2014

The Difference

I have a seven year old daughter and I over heard her talking to one of her friends.  Her friend is African-American and my daughter was asking her questions about skin color and if it affects how she does things.  My first reaction was to want to jump in and stop the conversation or to redirect the conversation.  However, it was very interesting to me so I just listened.  Her friend politely responded that God created her just like you (Ellen, my daughter).  She went on to say that just because she has a different skin color does not mean that she is any different.  She said, however, that sometimes people make fun of her or are scared of her because of her skin color and that makes her sad.

Ellen responded that sometimes people say the same thing about her sister (talking about Lydia), but that she is no different than us; other than it may take her longer to do some of the same things.  She said that it is hurtful to hear others talk about her in that way.  She apologized to her friend that she felt that way and she said that she was happy to have her as her friend.

My heart melted.  But there was something more profound in this conversation that I have not been able to get out of my head.  One, I was upset at myself for wanting to stop the conversation.  Why? because I would much rather have people come and talk to me about Lydia than judge her.  I should not discourage my children from asking questions for the purpose of gaining information.  However, often times those questions are for hurtful intentions rather than educational, and that is sad to me.  The other very profound thing was the way it was handled.  It was so innocent and amazing.  I need to learn more from my children and how they interact.

Since this little conversation my daughter has continued to ask questions.  She is starting to notice that people come in all shapes and sizes, colors and abilities (her pure innocence is wearing off :( ).  She has been asking a lot of questions about why and asking what to do with these thoughts when she sees someone different.

We have been trying to help her along, however, I have been taking a deep look into how I handle that.  WOW!  Completely eye-opening.  I feel like a HUGE hypocrite.  I ask, beg, advocate, educate for acceptance of my daughter; however, I am not very accepting of others myself.  I may not say anything or act on my thoughts; but I do have those thoughts.  Those thoughts are just as bad.  And we are talking about everything, the way people dress, their size, the color of skin, disability, how they parent, how they act and the list goes on....there are so many more things that we form our judgments on that just are not fair.

I am struggling to write this, so I apologize if my thoughts are coming out disorganized and making no sense.  I am struggling because I don't want to admit it.  I am struggling because I am seeing how deep this issue actually goes.  I am struggling because as I want to change the world for my daughter; I realize that it really must start with me.

As I have been very deep in study of the Bible, I have read about how important it is not to point out someone else's speck in their eye, when I have a HUGE plank in my eye.  Yikes!  That is really hard to swallow.  I recognize how hard this is and how deep this issue is.  I realize how far from that I truly am.  I don't want to admit it, it is extremely hard, but I am understanding how hard this really is.

I like to think that I am accepting and open to different folks, that I share the love of Jesus with others and I act in a decent way.  But I am a sinner and I fall so short of how I am suppose to live.  Just the other day I handled a situation completely inappropriate.  It has been on my mind and I had to swallow my ego and make things right; that is really hard.  But I realized that I handled this situation inappropriately and did so in front of others who did not know me.  Those folks were not present when I went back to ask for forgiveness.  Those people were left with an impression about me; that I would like to think was not very characteristically correct of me.  They can easily judge me and say that I am not a very nice person.  Ugh.  It happens so easily.  I am sure for many the impressions of me are not very favorable because I fail a lot and I don't always handle myself so well.  But does that define me? 

The more I am writing, the more I recognize how complicated this is when you think about it; it almost makes my head hurt.  I understand that it is NEVER OK to judge someone by outward appearance, NO MATTER WHAT.  But if we are honest with ourselves; I think that we have all done it before, even when we have the best heart, best intent, even if we are open to all kinds of differences.

However, the acting part is the one that hurts the most.  When we act upon those thoughts and we form opinions of people before we even know or understand, that is just a tragedy.  If we could all ask those questions to just find out information first, I think we would be a lot better off.  I think it is bad enough to think a thought, but we need to practice that it stops there.  Regardless of what our first impressions are, everyone deserves a chance.  Regardless of what our brain thinks, or if we were taken off guard by an appearance or if we don't understand; we should not judge someone based off of that.  Get to know them, ask questions, have an understanding first.  I think we could all surprise ourselves.  Ellen found out what happens when we act on those thoughts.  She came up to me and said that she was thinking something inappropriate.  I asked her what and she told me I was fat.  My heart sank.  Yes, I could handle to lose some weight, but my daughter really thinks that?!  I was just glad that she said it to me and I had the opportunity to use it as a teaching tool.

And what we try to teach our children is grace.  I believe that grace is much different than tolerance.  We have a strong belief of the Bible and we will not compromise that.  Tolerance is  allowing anything and everything to be OK.  However, I believe the Bible clearly states right from wrong.  Now I know that is pretty controversial; however that is what I believe.  I am not perfect, I cannot be perfect.  I sin just like everyone else sins.  I make mistakes and I let people down.  Dare I even say that I act inappropriately more times than I care to admit.  But to judge someone, to form an opinion about someone before getting to know them; I believe that is just wrong.  I want the people who see me acting inappropriately to extend me grace; give me one more shot and not form an opinion based on that.  I need that grace to show people who I am.  I fall way short of the glory of God and yet He continually shows me grace; He continually is seeking me out.  I need to extend that to others as well and freely too!  After all we all have bad days. 

I know not everyone will agree with me on my points, but this is what is on my heart today.  The difference is in how we handle these situations and how we present ourselves.  I guess this helps me to realize that I am far from perfect, that the things I am asking other people to do for Lydia; I do that to others too.  I am more conscious of this now, we talk about it as a family.  It is so much fun to watch the girls grow and develop.  While I know that they will not be perfect, they will fall on their faces several times; they are getting a very important lesson.  There is a profound difference in all of our differences and that is what makes the world so much fun.  Lydia brings something different to the table than Ellen and so Allison adds her flavor too.  It is fun and that is very special.

I know that this little conversation has made a difference in my life and I am going to work harder on removing that plank from my eye than point out the speck in someone else's eye.  I am going to work harder on controlling how I handle myself in EVERY situation, but when I do fall, I am going to ask, even beg, for grace.  And I too, must remember that God is giving me grace; I must too.  And when I don't understand, I am going to ask.  I would much prefer a stranger to come up to me and ask me a question about Lydia than judge Lydia based on what they see (and that goes for all of us!).

Saturday, January 4, 2014

My Dream

Good New Year to all of you!  I hope you had a very Merry Christmas and your 2014 is starting off to a great start!  So are you a person who does New Year Resolutions?  If you are what kind of resolutions do you make?  Do you usually keep them?  Is it a bummer at the end of the year when you did not accomplish the New Year Resolution or do you celebrate because you achieve the goals you set before you for the year?  I get curious about how others set their New Year Resolutions; or if they just embrace the new year for what it is.

I have had a lot of time to reflect lately.  I have time to just take in God's Word and to meditate on what our journey all has been.  I have been sitting back and watching Lydia accomplish many many goals that we never thought were possible.  While I am still holding my breathe as I know at any moment a virus like RSV or Influenza A could be very hard on her, I have to say that I just appreciate our journey so much more, praise God that He has allowed our family to stay so healthy, and let loose a little bit as I see her being stronger and more resilient.  While I still don't want to let my guard down completely, it is almost as I can see a light at the end of the tunnel (at least a light for this part of the journey!).

Last year I had a crazy idea, a dream.  I have prayed and pondered on it.  I have given it much thought.  It is NOT going away.  I am not sure what God wants me to do with it yet, even if anything.  But it is right there on the top of my head at all times.  As I finally decided to sit down and share my crazy thoughts with my husband; I felt an urge to share my dream publicly.

I have to say that this is hard for me because I feel like it is nothing but a silly little dream.  However, one of my "resolutions" is to be in the Word more (I really have struggled with that) and to just sit quietly and listen to God.  This crazy dream is not going away.  These crazy thoughts are consuming me.  So as I prayed through the store today, I just felt like today is a good day to share with you my can't hurt!

I am going to tell you the background pieces first that lead me to my silly dream and then pull it all together at the end.

When we were in the hospital and it was after Lydia's first surgery.  She was VERY sick after that surgery and it was a ROUGH recovery.  It had been over a week since I had the privilege to hold my child.  I missed her.  I never thought that it was possible for your arms to ache so bad for your child; but they can and mine did.  I had received a gift from one of my sister's friends.  I had never met this lady, but she has made a HUGE impact on me from her gift.  She gave Ellen and Allison books (they are their favorite books) and she put a scarf in there for me.  I have NEVER worn a scarf before.  If you know me, you know that my style is pretty simple.  She wrote a note and it went something to the tune of sometimes you just have to dress up in the hospital and look nice; it can change your entire outlook.

Well, that day, as my arms ached for my daughter, I put that scarf on.  My posture was a bit better, a smile appeared on my face, and I felt like I could once again fight this fight.  The nurses and doctors even complimented me on my appearance (it was a change from the lounge clothes I had been wearing).  That day, I was able to hold my daughter.  The nurse told me to go to the bathroom.  As I was in the bathroom her and the RT were gathering cords and wires so I could hold my daughter.  This picture is the same picture that I use for my blog.  I will always remember that scarf and the gesture from this lady.  While I have since had the pleasure of meeting her, I have never been able to tell her the profound impact that the scarf made on my life.

The second part is what we did for Christmas this year.  I feel that each year we are just searching for gifts to give to the girls because it is Christmas.  When you spend a Holiday or more in the hospital there is a different perspective that you have.  There are so many people who "give up" their Holiday to serve others, to make it the best Holiday for their patients.  There are many patients who never get to get out of that hospital.  And I think when you are in that situation you really understand that no amount of gifts will EVER replace what it is that you are going through.  However, memories are critical to the situation that you are enduring and the future.

This year we did not give our girls presents on Christmas (they were given a couple Christmas Eve but really not much).  We spent the majority of the day making hand scrubs and foot soaks and body scrubs.  We had the best time doing it.  No one complained about what they did or did not get, no one fought, everyone had a blast.  We shared stories and talked about our dreams and just had a wonderful time.  When we were done we took them to the hospital and gave them to the nurses and staff that were working on Christmas day.  We have a lot of great stories to tell, and the girls have memories that will last a lifetime.  They were SO excited to give the gifts.  It was one of the most amazing things that I was part of and it is because Lydia had to spend several Holidays in the hospital.

The other thing we did for Christmas this year was make a lot of gifts.  I, myself, and not a crafty person; but thanks to Pintrest I feel like I am very crafty.  We painted canvases with the girls feet and it spelled love, we made family trees using finger prints, we made salt dough ornaments decorated with the girl's hand prints on there, and we (Lydia and myself) learned to make scarves!  We made calendars and made our own wrapping paper.  We had a good time and we created many memories.  It does take a lot of time, but I would not trade the memories of this Christmas for anything.

I guess this brings me to my silly crazy idea.  After a lot of reflecting and dreaming I thought of creating a foundation in which a family, who is the hospital, at the Ronald McDonald House, could have a basket to make memories.  Especially around a Holiday, but really anytime.  I remember a little girl that lived next to us in a room at the hospital for only three days, her parents never got to take her home.  But every child needs to have memories.  So the baskets would be full of canvases and paint to make hand prints and special paintings to be hung in homes.  All of the ideas and everything that is needed would be in there.  There could be baskets of supplies to make presents for nurses and doctors, there could be baskets to make gifts for grandparents or aunts and uncles that may be unable to visit a special patient.  The baskets would be able to create memories for the families to have for a lifetime with a tangible item to remember it by.  There could be party baskets to make memories for people celebrating anniversaries, birthdays.  I hope you get the idea....a basket to make a memory by doing a special project with the ones they love and have a piece of artwork or a finish project to remember the memory by.

And each mom would receive a scarf.  Every mom that has to endure having their child in the hospital needs to look and feel good.  While I understand it is not the scarf itself that changed me, it has given me a lasting memory.  It is something fun, an item that may not be bought by the mom.  But it is important for me to continue giving this gift as I hope it would make many other moms feel as special as I did when I put that scarf on.

My mind goes on and on and on.  We could spread the Gospel tract in these baskets and we could spread awareness about Down Syndrome.  We could sell these baskets to other people who are maybe working moms who don't have the time to make these important lasting memories.  Or maybe there are people like me, who lack creativity, and would like to have their home decorated with memories.  We could use our barn at some point and have it the distribution center for these baskets and we could employ people with Down Syndrome to help compile these baskets.  The ideas in my head keep going and going.  I am not sure where this idea will go, but I needed to share it with someone!

So in 2014 I am going to be bold and share my wild crazy dreams.  Maybe nothing will come out of this, maybe it will.  I have no idea how to go about it, no money to start it, but everything starts with a dream.  I know if this is God's Will; it will happen.  It is time for me to step out of my comfort zone and start doing more!  I am so excited for 2014 and what God has in store for me, for Ellen, for Allison, for Lydia, for my husband, for our family, for my marriage, for my relationship with God.  I know being connected to Him, amazing things will happen...I have a great reminder of that...Lydia.  He has brought her so far and I am ready to watch her continue to spread her wings and fly.

Lea's Blessings is what I would call the foundation, non-profit, or whatever it may be!  Lea's is made of up: Lydia, Ellen, Allison Spoor.  Blessings because we have been SO blessed!

Thanks for reading my crazy dream.  I hope this maybe inspired someone else to dream and share their crazy dreams!!!