5 Things I’ve Learned From My 6 Month Old Child Living With T21

In honor of World Down's Syndrome Day, here are 5 things Ive learned from my 6 month old with Down Syndrome.

1.  A New Definition of Healthy.

    When I first found out that #babyaverimae might have to live with T21 (Downs Syndrome), all I prayed was that we would have a healthy baby.  Saying those prayers at that time I thought meant she would be born a “typical” baby.  Not having to live her life with T21.  Once she was born and the diagnosis confirmed, what I quickly found out was that my baby girl IS healthy, and simply has an extra 21st chromosome.  She is 100% healthy and has a couple things she has to work a little harder at than typical children. Over the past 6 months I have learned a new definition of what health means for my life.  

    Health is not how I look.  A six pack doesn’t make me healthy.  Health is not always how I feel.  Just because I’m rested doesn’t mean I’m healthy and vice versa.  To be healthy for me, is more about what’s going on in my mind and heart.  What am allowing to make its way through my mind and into my heart.  It’s more about those unseen areas and less about what is seen.  The Bible says, “Out of the abundance of the heart, the mouth speaks”.  I’m learning that what comes out of us is already abundantly in us.  You cant hide your heart!  It spills out with every word you say.  So, “guard your heart, for out of it flows the issues of life”.  Health is found in your heart.  If you want to live a healthy life, you have to have a healthy heart.  OH…and Averi’s heart?  100% healthy!

2.  A Smile Can Give Life.

    I came home one night and I was tired and grouchy.  Averi was about 3 months old at the time.  I walked over to say hi to my baby girl, who was laying on the couch.  Her eyes were closed so I was about to walk away but I hesitated and decided to sit down.  I'm glad I did.  I sat next to her, grabbed her hand and wrapped it around my pinky.  As I did she began to open her eyes.  She looked at me and without hesitation, her face lit up with the biggest smile.  It literally took over her face!  At that moment, I felt a warmth begin to flow through my body.  I felt my grouchiness leaving and my exhaustion going away.  My mood changed immediately.  Not only that my physical body felt different as well.  She literally gave me life that night.  

    I believe it’s no different for anyone else.  We never know what people are going through.  More importantly we never know what our smile could do for another person's day.  Like Averi, our smile could be life giving to the people around us.  It doesn’t cost anything, it isn’t difficult to do, and could quite possibly change someones day.  Her smile gives me life.  I want people to say that about my smile too.

3.  She Doesn’t Know!

    For anyone who may not know, when your child gets this diagnosis, it comes with an extremely long list of things your child won’t be able to do because of this extra chromosome.  So not only do you find out your child won't be "typical", but you also have to deal with all the so called limitations your child may have.  It’s not spoken to you with hope that they will beat the odds, but it’s presented as if your child will for sure have all these limitations. What I’ve learned in these short 6 months is that Averi doesn’t know any of the limitations she supposedly has.  She doesn’t know she isn’t supposed to be doing the things she's doing.  And you better believe dad is already telling her she can and will do anything she wants to do.  

    Sometimes I find myself listening to and believing the limitations that have been spoken over my life.  When my heavenly father says “I can do all things through Christ who strengthens me”. I’m starting to believe it.  I want to live my life saying, I didn’t know I wasn’t supposed to do the things I’m doing.  I didn’t know I couldn’t do this or that because of my past.  Oops, sorry, I didn’t know I wasn’t supposed to be able to change the world.  You see, Averi is living her life at her pace doing what she wants to do and, with the help of her father (both earthly and heavenly), breaking down all the limitations T21 has set up against her.  I will do the same…No more limitations for my life.  

4.  It’s OK to Cry.

    This really has nothing to do with anything Averi is doing or has done but everything to do with my perspective being changed because of Averi.  It’s not easy to hear the diagnosis that your child will have Down Syndrome.  And just because you come to grips with the inevitable and you love your child just the way they are, doesn’t mean it’s not hard still.  I love my Averi Mae but every now and then I cry.  It’s not often and it’s usually not a long cry but I do.  I cry for my baby.  I cry for her sister.  I cry for my wife.  Mostly I cry because of the difficulties she faces.  Difficulties that she will overcome but never the less has to face. 

    At first crying made me feel like I wasn’t trusting God in this situation, but what I’m learning is that crying has allowed me to be honest with God.  Which in turn has allowed God to give me what I've needed in these moments to get though them.  So it’s ok to cry.  I’m not down. I’m not worried. I’m not upset. I just need to shed a few tears sometimes and that is ok.  The bible says God is near to the broken hearted.  I’m learning when I don’t suppress the broken hearted moments and allow myself to be human in the middle of them, thats when God is the closest to me!  

5.  Nothing is a Surprise to God.

    Sometimes I forget that God is in control.  I often forget that he is all knowing and all powerful.  Every once in awhile I have to ask myself, “do I really believe what I say I believe?”, because if I do then I need to respond based on what I really believe.  See, I believe that God is all knowing, and that he had #babyaverimae’s life planned out before she was even in her mother’s womb.  None of this is a surprise to God.  Because of that I can trust and believe that God knows the plans he has for Averi.  Plans to prosper and not to harm her.  Plans to give her a hope and a future.  Although I don’t know those plans, I do know I can trust the God who designed those plans just for Averi Mae Zachery.  And I trust what His word says about the plans that he makes.  God has a divine plan and purpose just for Averi and I am excited to see how it all plays out.  

    There are so many more things I’ve learned since we had Averi.  Maybe at 1 year I’ll do this all over again.  We’ll see.  But I’ll end with this, after 6 months I can honestly say I am honored to be trusted with this baby girl.  It’s a privilege to steward that little life.  We are truly lucky to have her.  She is a world changer for sure and my hero!! 

HAPPY WORLD DOWN SYNDROME DAY!!!