Wednesday, September 24, 2014

Never Gets Easier

We walked into the Post Office hand in hand.  She was babbling and I was looking for the mail drop.  I picked her up and she dropped the letters into the slot.  We headed towards the door to leave, still hand in hand.  We walked out and the rocks next to the flower garden caught Lydia's eyes.  She liked the sound of the rustling leaves too. She sat down and I just smiled.  As she was playing there was an older gentleman passing us on the sidewalk. 

He looked over at Lydia and then he looked at me and said that babies with Down syndrome don't deserve to live.  I looked at him and smiled.  He went on to say more, but I scooped Lydia into my arms.  Her cute short arms wrapped my neck and her little fingers gently rubbed my shoulders.  I hugged her and politely walked to the car.

It never gets easier to hear the words that your child does not deserve to live.  It never gets easier to defend why you chose life for your child.  It never gets easier hearing the snares and snickers of other people.  It doesn't get easier.

But what I learned today is that I have grown as Lydia's mom.  As much as those words crushed my entire spirit, I know that she is not defined by them.  Lydia gets her worth from God because that is who created her just as she is.  He designed her perfectly.  He intended her to have 47 Chromosomes, slanted eyes, stubby fingers, low tone, a smile that is contagious, more love than she knows what to do with, a heart of gold, a sassy attitude, and a caring heart.  She is exactly who she was created to be and she has just as much right to live as any of us.

As I drove home the tears filled my eyes.  I looked back at my miracle and just was filled with love and gratitude for being put on this journey.  I have changed because of her.  While I am sure I will most likely hear some mean comments, I know the truth.  I know that because of her, because of those 47 Chromosomes I am a better person.  I know that our family is better because of her.  I also  know that most times people say those malicious comments because they are uneducated.

I also know that those kind of people don't deserve more than a smile from me.  I no longer have to defend my child or our decision for bringing her into this world.  It was never a decision for us, she was our child that God placed in our family.  Down syndrome, medical issues, and a sassy sassy attitude.  That was all meant for our family.  The only decision we made was to have a child and God knew the perfect child to place in our family.

Hearing such horrible comments will NEVER get easier.  Those comments are etched in my mind.  In weak moments I hear those comments and I wish they were never uttered.  However, it makes me want to share Lydia's story more and more.  There are so many good people.  Most of the time I hear how cute she is, how they want to take her home, what a ham she is.  There are far more good comments than bad ones.  The bad ones, however, are just so terrible.  How could you think that she does not deserve to live?  She has more life in her than most people I know.  She has done so much good in this world already and she is only three years old.  And I don't think that any parent wants to feel as though they have to defend why their child should live, it really is just not a fun thing.

As I write I am amazed at what a difference it makes when we get our self worth from God and not from this world.  When we truly understand what we have, nothing can tear us down.  There is still a huge sting from the words, but it has not broken me down and it won't.  It has allowed me to want to keep spreading Lydia's story, keep creating awareness and keep loving her.  I love taking her out in public and I love seeing the joy she brings to just about anyone she meets. 

I guess you have to take the bad with the good.  And while I will never get use to hearing things like this about my daughter and I know that it will never get easier, I am OK with it.  I know that it will not tear me down, I know that it does not define my daughter, I know that it will not break me anymore.

Please help educate about Down syndrome.  While we have come so far in acceptance, there is still so much to do.  We can make better communities by educating one person at a time.  And I know it is in how I react too to these comments that will make a difference.  I can smile and move on with my day knowing that, other than a few tears, it will not ruin me.  I will pray for that gentleman and I will continue spreading the joy that Lydia brings to me each and every day.  I am so blessed to have her!

Friday, September 19, 2014


We all go through things in life that affect us, that change us, that shape us and mold us.  We are affected by a trial or a crisis or a change in direction.  We are affected by one decision that we make or someone else makes.  We are even affected by those around us, their behaviors and decisions and actions.  We are affected by a sickness of ourselves, our children, our loved ones, we are affected by an unexpected diagnosis.

As I was thinking (something that I have been doing a lot of lately), I realized that just because I have been affected, does not make that a bad things.  Actually, I have challenged myself to see it as something as a positive.  I have been affected by many things, but does that make it a bad thing?

Absolutely not!  I have been affected by Down syndrome and I am better because of it.  My daughter has been affected by Down syndrome and that is who she is...and I LOVE IT.  I have been affected by many things in my life and I choose to look at it as a blessing (now anyways) rather than a burden, a tragedy, or something bad.

Down syndrome has changed our entire family, has changed the way I look at things, who I am, how I deal with things, and the things that are important to me in my life.  I would say that Down syndrome has affected me to my core in the very best possible ways.  Down syndrome has affected the way I look at things, the way I behave, the way I give of my time and who I am as a person.

I am sure if someone from my past met me on the street and got to know who I was today, I would be almost completely different.  I am sure that most people would say that.  But if someone who knew me just three short years ago met me again, I am sure they would see someone completely different too.  I have changed so much since Down syndrome has affected my life.

Many look at things that have affected our lives as something bad.  For me, it was the best thing that could have ever happened.  I have learned how to love deeper, love more unconditionally, I have learned how to stop and really smell the roses, how to appreciate the smallest of things, I have learned how to step up and accurately communicate something through lots of emotions, I have learned how to live life effectively under the most chaotic circumstances, I have learned how to give of myself more freely, I have learned the value of relationships and friendships, I have learned more about me, I have learned about miracles, I have learned about Faith and the goodness of God.  I think that I could go on and on about what I have learned, but because my family was affected by Down syndrome I have become a whole new person.

I understand that for someone to truly understand what I am talking about, you have to be affected too.  And since we are all affected by our own things, I share Lydia's story.  I pray that her story may affect others and other will be impacted profoundly by her story.  I realize that by sharing her story, I will not affect everyone's life and I am OK with that.  But if we have affected someone's life, if someone has come to understand what a blessing Down syndrome is, it has been worth it.

There are so many days that I wish I had Lydia's disposition on life.  She gets so excited over the simplest of things.  I think we all could use more joy in our life (after all, God does call us to live with joy).  I wish that I could be that comfortable in my own skin.  I wish that I could let things roll off as she does.  I wish that I could always be as thoughtful as her.  I wish that I could be as determined as her.  I wish that I could overcome as much as she has overcome.  I wish that I would have known all of the positives Down syndrome has on your life, instead of the negative ones.

I have been affected and I am changing each day to be more like the person God wants me to be.  He placed Lydia in our life for a very specific purpose.  I am blessed by her.  I love her to the moon and back and once more!  I have been affected and I am sure happy that I was.

I am not saying that just because you are affected by something that everything is good.  We had to endure some very tough things.  But in those tough things we learned and we grew a lot.  It was because of those tough things that we are better today.  I look at my older girls and they are incredible.  They went through things that I wish they would not have had to.  However, it was in those tough lessons that they learned things that I could not have taught them.  They are better because we were affected by this journey.

Even now as we battle some very tough things with Lydia's IEP, I am affected.  I feel like some days I am living a nightmare.  However, because I have been affected on this journey I can better handle these things.  I have changed and I am now better equipped to deal with these things.  And I am sure, through these troubles with the IEP, I will be affected once again and I will be better.

Down syndrome is part of what makes Lydia, Lydia.  I would not change her for anything, even on the hard days.  Life is not always easy, the course is sometimes very tough, but nothing worth doing is every easy!