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! 


  1. Everyone grieves in their own way, some more than others, some longer than others. And it's totally OK to have those moments, even if they are hard to admit (at least for me!).

    I'm not a big fan of Kelle Hampton--she's just rainbows and unicorns all the time for me. I have read a lot of other Ds memoirs, so these would be my suggestions if you're interested in reading more:
    A Good and Perfect Gift by Amy Julia Becker
    Choosing Naia by Mitchell Zuckoff
    Sun Shine Down (brand new!) by Gillian Marchenko
    Roadmap to Holland by Jennifer Graf Groneberg
    The Year My Son and I Were Born by Kathryn Lynard Soper
    The Shape of the Eye by George Estreich

    1. Thanks Stephanie. I appreciate the feedback and suggestions of books. I will have to look into them. I am so new at this blogging thing I just discovered a ton of blogs too! Now to just find the time to read all of them! Thanks again and congratulations to you on being published...what an amazing accomplishment!