(re)Defining Me

I am having a chat with a fellow mother. We talk about the weather as our babies play around our feet. The other child pulls itself up and begins to toddle around the room. I realize that this baby is the same age as Elina. My daughter remains sitting by my feet, observing. This is how Down Syndrome separates my baby from hers. It is the first of many possible ways Elina may be different. I feel warmth running to my cheeks and inadequacy chokes me.

Why? Its the same reason parents sometimes feel they need to brag about a genius child or a budding Olympian. We believe our children reflect back to us.

If our child is smart, we think we have done something right (Which, of course, is possible). Or maybe we think that we are just the superior type of person that breeds amazing children.

Then there is the other side of the spectrum. I worry that people will think we are inferior because our child is not hitting milestones. It reflects badly, and makes me feel like there is something wrong with me. So I end up compensating by pushing Elina to succeed or by telling myself that she is going to be better at something than someone else's child. Am I really worried about Elina? Or am I trying to fill some hole in the mirror of my self image?

Down Syndrome has challenged me far beyond the tangible difficulties like heart problems and early intervention. It has made me discover the shallow parts of myself. I learned that I find identity in the wrong ways. I think how smart I am, how I look, who I know, what I accomplish, who accomplishes more than me, all define what I am worth.

So what about her?

 If she isn't top of her class, does that mean she isn't important? Does it mean that I am not important?

What will I feel if people look at her in a weird way? Will I worry what they think of her? of me?

Elina shouldn't have to be something so that I can feel good about myself. It is wrong to try to live my life through my child. It is wrong for me to puff up my ego when she does something better than someone else.

Not only is it wrong, its a waste of life.

Freedom is knowing you are worth something. Freedom is leaving behind your ideas of who you need to be. When we accept ourselves we will be free to actually live our lives instead of hiding until we reach perfection. Perfection isn't coming, but life is already here.

I want Elina to have this freedom. I want to own it for myself. I want to throw away my notions about special needs. I want to embrace who my daughter is, and forget what people say she should be.

Because she already is who she should be; herself.

Elina enchants me. I am in awe of her spirit and her beauty. I refuse to let any set of expectations, stereotypes, or judgments cloud the truth of who she is, of who I am.

God, Help me to find beauty where I see flaws,

to see grace where I feel judgement

to discover freedom instead of clinging to lies

To Save Down Syndrome

There is a lot of sadness and outrage in my world.  My world of loving parents whose children happen to have an extra chromosome.

Our society is making choices that may very well wipe out down syndrome from our country, even our planet. Early testing for down syndrome is not bad in itself. However, giving that news without necessary support or information may lead to more babies with down syndrome being terminated.

See, we want everyone to get it. Get that Down Syndrome is not a terminal disease or a curse. That through time, we as parents, have come to realize that we wouldn't change it if we could.

We want everyone to know, that if you are grieving because you found out your unborn child will have down syndrome, its going to be okay.

There is Hope.

***

One tiny chromosome. It starts with one microscopic anomaly. That is all it takes to affect the fate of a child. One chromosome multiplies and becomes a terrifying diagnosis, one that creates gaps near impossible to bridge.

Because, when you have a child with down syndrome, they will struggle in many ways. Guaranteed.

They will struggle to develop.

To speak.

To fit in.

To be seen for who they are and not what they have.

So, you are left to wonder, is it worth it?

Picture yourself sitting in the hospital room. A joyous moment has been stolen from you, your excitement has been ransacked by terror. As you sit in the dark places of your heart, what thoughts will run through your mind?

Can I accept this child?

Will I live my life wishing that they were something else?

Is a life with down syndrome a life worth living?

Perhaps the only people who can answer this is those with down syndrome. If you look around, you might realize that they have answered. Elina's blog is only one in thousands.

Lily on A Perfect Lily

Kamdyn on Life is Beautiful

Noah on Noah's Dad

Nella on Enjoying the Small Things

All these children are showing us everyday that, yes, a life with down syndrome is worth living.

So is my girl. With every smile. Every triumph. Every breath.

These voices need to be heard. Not just by those who find out at birth that their child has down syndrome. By those who find out from a blood test, too. Yes, they need to hear the scary statistics about complications and the truth about what lies ahead. Should expecting parents also hear the upside of down?

 I want them to know that individuals with down syndrome are beautiful, valuable, worthy of life.

All things that are worth while are hard. Life with down syndrome is no different.

I wouldn't change it. I wouldn't snip of those extra chromosomes, even if I could. Down syndrome has changed us all for the better.


If God chose down syndrome for Elina, who am I to challenge that?


Because, its not random, not an error.

It is a gift. The gift that seemed at first like a curse. The gift that I didn't know I needed, until it was mine.

I daily have to figure out that life isn't about being easy or smooth. Life is about making something beautiful out of the ashes of loss and complication. One day she will know that she is different. One day she will face others who only see a disorder and not who she is. On those days I pray that she hears a voice deep within that reminds her that she is beautiful, precious, and unique.

She wasn't made to blend in. I wouldn't want her to waste her time trying to be "normal". Instead, I wish that she will be able to look in the mirror and say these words,

"I praise you, for I am fearfully and wonderfully made" 

(Psalm 139:14a)

...and I pray we can say it with her.

Elina: One Year of Hope (and counting...)

Intentions to update the blog have slipped in the wake of a flood of birthday parties, big milestones, and way too many hours on the road.

Elina turned one on the first, and we are filled to the brim with memories and special moments of the big event.

(A big thanks to my cousin, Jessica, for capturing some shots that I was too "busy" to take)It seemed like her birthday almost snuck up on me. This is odd to say, considering I put more hours into working on her birthday party than I care to admit. The truth is, I was so caught up in trying to make it special that I almost forgot that it already is special. Her first birthday is a time to remember the blessing, pain, and miracles that occurred on that unforgettable day one year ago. 
Here are just a few things that I have learned this year1. Life is terribly, wonderfully surprising.2. Down Syndrome is not the end of the world3. You can choose to love, and when you do, that love transforms brokenness into joy4. A child is not meant to be a reflection of how smart, talented, or beautiful you are. They are not clay to be molded into what we think is right or good. They are gifts.5. Blue eyes, tan skin, and dusty brown hair is a breath-taking combination6. A child's smile can be addicting. Once you get one, you will do anything to get more7. God had more planned for me than I ever had planned for myself8. Great suffering and loss is the key to thankfulness and joy, because you learn what is important and the value of the things most taken for granted9. It is time to lose my expectations, my doubts, and my worries10. Hope is essential

Elina, showing off her birthday spoils

Cousin Jazzy and Elina having some much needed bonding time

Elina's friends and family from Kansas and Colorado all helped create this memory for us

Big Milestones

Elina has scored big time in the development department. When you have a child with developmental delays, you become so in tune to every bit of progress. We are proud of our little (I mean big) girl who is now sitting like a pro. She also took her first steps with our help, so she can practice walking around the house. Really, she is just gaining a lot of strength and control all over her body. We are excited for Elina and can't wait to see what these next few months will bring.

Here is a little video of Elina, a day after her eye surgery. She is getting so strong!

We are heading to the great KC in a couple weeks to find out how well her surgery has straightened her eyes. She is already focusing a lot better, and we are hoping for the best!

Giving the constitution a little love for America's B-day  (kind of its B day, not really, I think)

Thank you for sharing our blog with us. I hope that you get out of it at least half of what it gives me to create it. It means so much that you care so much about our little family, for our big girl.

Honest moments: Sparks of Joy

Sometimes honesty is hard to swallow, but not always.


There are times when the truth goes down like a spoonful of sugar. The beauty of life is that there are such undeniable, blissful truths. These truths make the hard ones more bearable. In fact, sometimes, they surpass and drown worries and tears.


My honest moment? Joy is real. It is real and it can carry me through.

 There are times when Elina grabs my face and engulfs me in one of her legendary kisses. She does not give these kisses upon command, no, they are a part of her magic. So this is the kiss: She grabs your cheeks with her tiny hands, and pulls you towards her with surprising force. Then, your bottom lip is chomped on, as lovingly as chomping can be done. Elina's kisses can be a bit rough at times, but love hurts, right? If she is really into it, then she babbles while she is attacking your face. You can't help but to get lost in this kiss; to be overwhelmed and swept in by her love.

Elina's kiss is just one thing that fills me up with bubbling life.

I'll be honest: sometimes I have joy that is so pure and strong, it makes the moments move in slow motion. 

The Spark

The days in all our lives can sometimes slur together in a series of responsibilities and routines. We can live out a whole week, and lie in bed on sunday nights wondering where all the time went, as if life just sort of flew by us. It can all feel so ordinary. 

Then there is this mystery that exists alongside the mundane. There is a part of life that is a bright contrast to the ordinary.

There is a spark that can happen at any time. The spark is something that brings the daily grind to a halt. 

It happens when...

...you look deep into the eyes of your wife for the first time in a long time, and you rediscover her soul.

...your kids break out in a dance in the back yard, their tiny toes bouncing to the beat of summer freedom

... you read a story that touches you in the deepest parts of who you are

They are the moments that make you see your life for what it is- a gift. 

I find that as I keep my eyes open, these sparks are everywhere. 

If this joy is so real to me, then why do I have so much trouble expressing it fully? As hard as it is for me to show my pain, it can be just as challenging to communicate joy. 

I don't think I am alone. I feel like we live in a world that has lost some ability to celebrate. For example, when someone stands in church and shares about some miracle in their life, we can tend to keep our happiness for them on the inside. We nod and smile instead of shouting and hugging as we should. 

Perhaps showing joy makes us vulnerable. Maybe we feel to exposed when we are really excited about something; because? Is it embarrassing to let others see us swept away by joy? 

What would happen, if we not only were more real about our struggles, but also about our triumphs and our happiness?

There is a season of special joy emerging in my life. Preparations are being made for a special 1st birthday party. I will strive to not only feel the glow of this joy in my heart, but to show it in my actions and words. 

Because, who knows, maybe joy is contagious.

_____

Eye Surgery

Elina is all set to go into surgery on Friday. We will be heading to Kansas City on Thursday. 

According to the surgeon, Elina should be released from the hospital that same day. Some of the effects that will stay with her for a while are some eye irritation and a lot of redness at the sight of the modifications they will make to both eyes. 

We have high hopes for this surgery and feel pretty relaxed about the procedure. 

Updates will be posted about how it all went. 

In the meantime, were just going to kick back, put our feet back, and live joy.

Honest Moments: Self- Pity

When it comes to self-pity, I take the cake. 

If you have read Anne of Green Gables, then you know what I mean when I say that I am often in, "the depths of despair", meaning that I spend a lot of time thinking about how hard my life has been.

However, recently, I have been starting to wonder how this is helping anything.

During Elina's open heart surgery I had this notion in my head that no one in the surgery waiting room had it as bad as us. I looked around and imagined that everyone else's children were getting a much less drastic, serious surgery than my Elina. I told myself that all the people around me were so worried for much less than myself. 

Why did I do this? I believe now that it helped me to cope. Self-pity has been one of the things that has helped me make it through some of the tough things in my life, not that it is a good thing. I have always told myself that the things I am going through now would make me strong. As a child, it helped me feel that maybe there was a purpose to my suffering.

There have been a few moments this weekend at the Ronald McDonald House that have challenged all of that. 

Last night, we arrived right as dinner was being served to all of the guests at the House. As we sat down, I saw a family arrive to get some food. Right away I noticed that the boy with them showed some signs of chemotherapy. The pain I felt for him was like a punch to the gut. Then a boy and his family sat at a table next to us. He was confined to a wheelchair and unable to move most of his body. I felt as if I cold not breathe. My eyes filled with tears when I realized the serious condition both of these sweet boys were in. 

I looked at my baby girl, and I felt convicted. Elina has done unbelievably well in her surgeries. Her life is not threatened, and though her development may be slowed, we have every reason to hope that she will live a full and healthy life. I had spent so much time feeling that we had so many problems that I did not even stop to gain perspective.

Again, this morning I had a brief conversation with a woman whose daughter had been diagnosed with leukemia. My mind was blank with words to say that could help. I saw the depth of her worry and I felt my heart swell with anger and grief for her. As she left, I told her that we would pray for her and her daughter. As Mikey and I sat down for breakfast, we closed our eyes and asked God to comfort her, to give her hope. The same hope that we needed when Elina was going through heart surgery.


Elina has to deal with unique challenges. God has always been there to listen to my cries. We should never hold back in allowing ourselves to be honest about the pain we go through. There is a line to draw, however.  I will allow my self to feel pain and struggle, but I will not let it become who I am, I will not let it consume me. 


And, it is crazy to compare my problems with those of others. God is concerned with everything from scrapped knees to national tragedies. We can come to him in any moment or emotion. That, is truly something to take heart in. 

So today I am trading in self-pity for a spoonful of plain ol' thankfulness. 

***


Summer lovin'

 Summer is here! Elina is more than loving it. 


When it comes to swimming this girl has no fear. We think she might be part mermaid.

Update: We got back last night from pre-admission, and everything is good to go for next Friday.


More later on surgery details and preparations.


In the meantime, we have some more memories to make (plus a whole lot of very small laundry to fold)

Honest Moments: Struggles with Developmental Delays

Let me be honest: I stink at being honest.


I am the first person to sugar coat. I am horribly quick to reply "Good!" when you ask me how I am doing, even when I just got done crying in the girls bathroom (cliche, but true).


So I am starting a series called, "Honest Moments", to challenge myself to give it to you straight about some of the difficulties we face.


Why is it such a struggle for me to talk about how difficult our road can be? I fear that we will become that family. You know, that family, that is always dredging up their sob stories. They are notorious for saying things such as, "Well, if you think that's bad..." or "Join the club" (Which for the record is one of my all  time least favorite things to hear).   That family whines about their lives and fails to realize that everyone is going through their own struggles. So, I am going to take the chance and let you into my mind, even if we do come off as that family; in hope that you find a piece of truth to bring into your own life.


Developmental Delays:


When I first looked at the development charts, after Elina was born, I felt confident and maybe a little prideful. I thought to myself that Elina was going to blow everyone out of the water. She was going to overcome every expectation that the world had. In my mind, she was to be so advanced that the top expert doctors would flock to our door and ask to do a case study on Elina Esperanza, the girl who overcame Down Syndrome (you might think i'm exaggerating, but not in the slightest, I have actually thought these things). I scoffed at the "Down Syndrome Developmental Charts". My girl was going to blow through development like a bullet through jello.


Reality Check.


A few months ago I began to feel a cold worry spreading in my mind. I began to watch as Elina's development began to slow in comparison to her peers. She wasn't ahead. She wasn't even on time with some things. I talked myself out of panic by telling myself that she was just behind because of her heart condition; that she would catch up as soon as she was all healed.


A few more months went by and, though she had accomplished a lot of great things, I started to realize a great fear. People began to ask me questions like, "Is she sitting up yet?" or " Has she started crawling?" These seemingly harmless questions began to make me feel embarrassed and even defensive. People had started to notice that she was behind, that she was different.


Which brings me to the point where I have found myself:  face to face with the facts I can't change.


Elina is developmentally delayed.


...as much as people tell me that they can't tell she has Down's.


...as much physical therapy as I can demand.


...as much as my habitual denial can push it away.


It remains true.


She struggles to do what most of us take for granted.


So I find myself praying that God would help her to grow and master these things; but I have to stop and ask myself if I want it for the right reasons.


Why am I embarrassed? Why do I need her to be "normal"? Why am I forcing her into a competition that I have created in my mind?


Its for the same reason that I spend hours looking up other babies online to see how she compares. Its the same reason why I look at my own reflection and feel disappointed.


The pressure to be lovable, accepted, beautiful, smart, human.


It is a poison that I both hate and cling to.


For me, this is the moment where I feel myself turning to God. In His eyes, Elina is beautiful. He sees the pure, tear jerking beauty within her heart and is satisfied. She doesn't need  to fight to fit in, or climb to the top. He intended her to be free, to grow in her own time in the shadow of His wings. When I accept this (it is something I must realize fresh all the time), I can breathe. I can stop and take it in; the beauty of who she is and the truth that her being "delayed" doesn't define who she is.


So take your time baby girl. Live your life of joy. Don't let us rush you in our panic to get you to the finish line; enjoy the journey.


Will I always face the questions about her development without worry? Knowing myself, that is a definite no. I am still finding my way. I have a long way to go with acceptance of all that Elina's conditions bring with them. However, I am walking with more peace in this season of her life.


I will be thankful on her first birthday...


...even if she isn't sitting, crawling, pulling up to stand, walking, etc.


I will look into those stormy blue eyes and glimpse a fierce, terribly beautiful soul... and I will be satisfied.

More lemonade?

Summer is upon us in all its humid glory.

   After recovery, finals week, graduation, Mikey's CMA course, and a much needed week in Denver- I finally find myself here, ready to reflect and share about Elina. 

   Mikey and I have been wondering how to tell all  the people that we love that Elina is heading into another  surgery sooner than we thought. 


   As many of you know, Elina has been wearing glasses to try to correct the eye problem that intensified during her heart surgery recovery. We went to KC to see how the glasses were working. Our opthamologist told us that the crossing was stronger than before. Elina is having to switch back and forth between her eyes in order to focus. Not good!!!! 


   So I will leave you with a date: June 22nd. One week before Elina's birthday, she will be braving another procedure. 


PLEASE PRAY that this surgery is successful. We are told that the problem with her eyes lies within her brain. They are making some changes to the outer eye in  order to encourage the brain to straighten her vision. Some kids need to have eye surgery several times. We are praying for another miracle! We need your help in that. 

My mom and Elina spending some much needed time together

   To be honest, when I heard the news about Elina's eye problems, I felt defeated. I mean, here was my girl not even out of the hospital yet, having to deal with more. I was sitting in the hospital parking lot. In my dreams, I was going to ride off in triumph with my family and a girl who was whole and healed. I felt that this eye problem was enough to break me. Even now, there are times when I still feel as though life has been a bit unfair to her. I feel angry that I can't take her problems upon myself. 

   Then, I remember all the amazing graces that God has provided us along this journey. Then, I look upon a tiny girl who is brimming with both strength and joy. I realize that these trials have transformed me as a person, for the better. I am a thankful person- one who realizes that today is a gift.

Life has handed us some seemingly unwanted lemons. There are these things that make us feel angry and scared. God gives us a choice to take those things and to put them in his hands. He makes them into something beautiful. Lemons into lemonade. 

So, with this lemon in my hands, I take heart because I can trust that God is here. He is already taking our struggles and making them into something beautiful. 

More lemonade, please. 

***

 Summer is upon us. We are looking forward to ruffled swimsuits, a hot pink baby pool, and ferocious little hands splashing water with fervor. In the midst of all the appointments and procedures, we will find times to have some traditional summer fun.

  I will have some cute pool photos up soon! 

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."

-Romans 8:28

Believe it for yourselves, our world, and for our girl.