Real Awareness

I was preparing food in the concessions stand for the girl's volleyball.  It was crazy busy and we were a man down.  I have to say we were a little unprepared.  One of the girl's from the team came out and said "Mrs. Spoor, you are needed out on the court."  I washed my hands and walked into the gym.  Our principal was talking about Down syndrome.  I did not think too much of it since we were having a Dig 4 Down syndrome night.

Catching me completely off guard, I heard, Mrs. Spoor and Lydia would you come to the center of the court?  I scooped up Lydia and off we went.  They were honoring Lydia.  The senior from the volleyball team came out and gave Lydia a rose.  She smiled and cheered with delight.  She went to the principal to get closer to the microphone.  Typically, when given a chance, she will sing and chat away into the microphone.  Not this time.

However, when the principal said it was time to play volleyball, she raised her rose above her head and shook it and giggled again.  It was a true humbling experience that the entire school would honor this little girl.  That this little girl was so loved and respected.  That the volleyball team would want to raise awareness and money for Down syndrome.

A couple months ago the coach of the volleyball team had this great idea of doing Dig 4 Down syndrome.  I know that a lot of teams wear pink for Breast Cancer Awareness, however, that does not personally affect anyone at the school.  It also seems to be a bit of a fad.  It is amazing to raise so much awareness.  But for me, Down syndrome is personal, it affects my family.  We participate in the Down syndrome awareness walk (we even did two this year) and I write about Down syndrome and I have a Facebook page highlighting Lydia's achievements.  I never imagined that our school would want to create awareness too!

A couple years ago, upon returning from our prolonged experience in the hospital with Lydia, we knew that private school was the best option for our family.  There are several reasons why, but having an education that is Christ-centered was very important.  We searched high and low for a school that we could financially afford (we had some other kids coming up on the horizion) and we wanted a school that would take Lydia.

After touring many schools, we found one that felt like home.  It was a bonus too that they were willing to take Lydia.  And they were not just willing to take her, they wanted her there.  We keep evaluating how well she is doing and if this will work out, but so far, so good.  I do think that it makes all of the difference that Lydia is with her sisters, she knows she is in a place where she is wanted, and her disability is not center stage.  The bar is set high and she is rising to it.  They understand her strengths and capitalize on that.

I can't say enough about this wonderful school.  Such an amazing thing that they have done for our family and especially for Lydia.  I think that it is great that the coach recognized that Down syndrome is something that directly impacts these students and chose to highlight that!

We were able to put up facts all around to educate others about Down syndrome.  We were able to sell T-Shirts to continue to create awareness about Down syndrome and we were able to expose a lot of people to Down syndrome.  The best way to create awareness is to face it head on.  Lydia walked around giving high fives, smiling and giggling.  It take a moment for her to capture your heart, having you smile and realizing that she is more alike than different.

As a team, a school, and a community, there was a lot of money raised.  It will go towards a local Down syndrome chapter where all of the money stays and supports families like ours.  That money will give back to the community, help families out and make a real impact.

What a great idea to show the volleyball team the importance of serving others, having fun, and helping others out.  It was a win all the way around. 

Full inclusion is an important thing.  We are so blessed that Lydia is where she is at.  We are even more blessed that our school rallies behind her and is not afraid to show her support.  I have to say that being part of this event was very humbling and really gave me encouragement.  Inclusion is important for everyone and makes all students better.  These lessons are ones that cannot be taught, they must be learned.  What a great thing for all involved!  We are in the right place.

Thanks Trinity Baptist School for all of your support and love for Lydia.  Thank you to Miss Leeds for the great idea and implementation for Dig 4 Down syndrome.  Thank you Mr. Shaeffer for your support and encouragement to everyone.  And thank you to the volleyball team for playing a very hard fought battle and loving Lydia!  Way to go Patriots!

Insert Generic Title for Down Syndrome Awareness Month

It is October 10.  10 days into Down syndrome awareness month.  This is my first post.  Last year I blogged every day for 31 days (31 for 21).  I have seen my Facebook page lit up with posts about Down syndrome.  Something has stopped me from writing, from posting a whole lot (I am sure I still post quite a bit).  I enjoy seeing the posts and I really want to educate and make a difference.

However, after my last encounter of feeling as though I needed to defend why I had my daughter, I have paused to reflect.  I have read the comments as my blog was shared and people weighed in.  I was not offended, we all have our own opinion.  I just took time to reflect.  I asked myself if I did the right thing by walking away or should I have educated the person?  For me, the right thing was to walk away.  I don't have to defend why I had Lydia and I don't have to force her upon people.  I have understood that my words will not change everyone's opinions or behaviors, and I am OK with that.  But I also recognize that I don't have to be in a situation where I have to hear demeaning comments about my daughter, walking away with a smile I think sends a loud enough message for me!

And in the past couple of weeks, I have seen my daughter do the unthinkable and become very ill.  This is the life we live, this is who she is.  We have reached the 3 year post op anniversary of her surgery that connected her, that allowed her to eat.  On that same day she preformed in front of many grandparents for the very first time.  She is completely inclusive in the private school that our other girls attend.  There were times that I never thought that they would all be together, much less all sing together.  I did everything I could to choke back the tears.  She was amazing (if you want to see the video you can go to www.facebook.com/teamlydibug).  I was told she would never amount to anything and she should be institutionalized.  She did better than most of her peers (speech or no speech), she put her whole heart into it and it was great!  My miracle!

And later that night Lydia fell ill.  While she did not have to make a return appearance to the hospital, I am pretty sure that this is the worse she ever looked.  She lost a lot of weight and when she looked me in the eye, the illness had stolen her twinkle.  It is exhausting rocking a sick child, wondering if she will make it through, and putting all of your needs aside for your child.  However, when the twinkle starts to come back, it is a huge celebration!  There is nothing that can describe that feeling.

I have been looking at the posts and seeing all of these cuties who rock a little extra.  See, in my mind, I can't begin to understand why people think that Lydia's life is less than the next person.  I can't begin to wrap my mind around why people think they can determine life based on a label (because after all, a diagnosis is just a label, it can't describe the person either).  I know you have heard it before, what if we all came with a prenatal label that would tell us what we would do in life.  What if I knew that I was going to get breast cancer, would my life be less valuable because I would incur medical bills and I would have to fight to stay alive, I would have ongoing medical needs?  Absurd!  What difference does it make if a person is born sick or gets sick during the course of their life?  I have come to realize that those labels help shape us to become the people we are today.   And those labels certainly cannot determine the quality of life, the kind of person they will be, or really anything about that person.

As Lydia put a challenge out, educate yourself and get to know someone with Down syndrome, I would like to challenge you to that as well.  Our fears and preconceptions rob us from blessings.  Think back to high school and that heart throb.  What kept you from asking him out?  What kept you from that cute "nerd" who sat in the front of the classroom?  Those labels, I am sure, do not define who they are today?

Down syndrome is not the first defect that has a label.  There are all kinds of things in society that have labels.  Some are good and some are bad.  We must first get to know the person.  We must first be educated on things.  It is only then we can understand the blessing we are missing.  There are a lot of wrong facts out there about Down syndrome.  The only way you will know the entire story is to get to know the person.

Maybe that is one of the biggest blessings that I have learned on this journey.  I have learned to look past the things that society says are not socially acceptable.  It is only then I can have some of the best friendships and relationships.  My children are better girls because they know how to look past the labels.  They get to know people for who they are on the inside.  Labels inform us, they do not define us.

Just as my title on this blog is generic, the message is too!  I think this is what we all hope for as parents.  Get to know my kid and accept them for who they are.  In Lydia's case part of her is Down syndrome and medical issues.  However, most of her is love, goofiness, determination, friendship, caring, giving, and making others laugh.  There is so much about her that Down syndrome cannot describe. 

For Down syndrome awareness month, Lydia's challenge is to educate yourself and get to know someone with Down syndrome.  It will change you for the better, it will change our communities, and it will reduce the number of times that parents have to defend why they chose life for their child with Down syndrome.  I know not everyone will accept the challenge, will have the same opinions as me, but if we can respect one another by being educated, we are on a great step forward!

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!

Affected

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!

Somethings Can't Be "Unetched"

I woke up sweating and my heart pounding as though it was being bounced down a basketball court.  All my ears could hear was a monitor flat-lining.  I sat up and was out of breath as my mind wandered back to the days in the hospital room.  It seems like no matter how much time passes, those moments are etched in my mind.

I remember it as though it was yesterday and at times it hits me, usually when I am not prepared.  Those images that are permanently etched in my mind play through my mind.  I relive those moments over and over.  These are the memories that I wish were "unetched" in my mind, but for some reason they are the ones that are the most vivid.

I was helping the nurse clean up Lydia and change her sheets.  We were having problems with her breathing tube, but on rounds the doctors insisted that the X-Ray looked just as it should.  They ignored both me and my husband's and the nurses pleas to re-tape the breathing tube.  As we shifted her, her fragile body stopped rising and falling.  Her perfect delicate skin started to turn gray and then blue.  The monitor started on a slow musical decline that kept getting louder and louder and eventually there was just one note that played....BEEEEEEEEEEPPPPPP.  There lay my daughter completely lifeless.  I prayed and I asked the nurse how I could help.  When she yelled for back up and the nurse said the doctors were in a meeting, I felt the temperature rise in my body and my voice yelling, but I was frozen still watching my lifeless child.  The charge nurse leaped over the desk and mowed down the door where the doctors were.  Within seconds, Lydia's room flooded with doctors and medical professionals.  Her nurse sat there continuing to bag her while that horrific note played....BEEEEEEEEPPPPPPP.

After what seemed like an eternity, but most likely only moments, my husband joined my side.  He had a puzzled look on his face until he looked at mine.  I am sure I looked just as lifeless as my daughter.  I prayed and begged and pleaded to bring my daughter back.  This surely could not be happening to my daughter.  I have had no time to play with her, she hasn't even left the hospital.  What would her sisters think?  How could we handle this?

Moments later, they were able to get a heartbeat and that annoying beeping never sounded so beautiful to me before.  My baby was back. She was sick, but she was alive.  Praising God for bringing my baby back, but knowing how fragile life is.  In a moment life can be completely drained and only hope is left.

I remember other times in the hospital where we just had to hope and trust God that it was in His plan to allow my baby to live.  I remember making a phone call to my husband in the middle of the night.  There have been specialist after specialist in Lydia's room.  We have given her every blood supply we can and she is not responding to anything.  Her heart rate is so fast and she is eating through every kind of pain medication, sedation medication that we are able to give her.  I believe there is nothing more we can do.  What?  We are in a hospital, you are suppose to be able to do something to help my child.  As horrendous as it was to make that phone call, the two hour drive to the hospital must have been complete torture for my husband. 

Once again, God saw fit in His plan to make the impossible, possible.  There was a great doctor who stood by my side as I laid my daughter flat in the bed.  This was something that we were forbidden to do.  However, instantly, yes instantly, her heart rate came down 20 beats per minute and continued on a steady decline.  The surgeon that was called in to attempt to reintubate, stood by her bedside and just shook his head.  As she was monitored and watched very carefully all night, we witnessed a miracle. 

These are moments that are completely etched into my mind and every time they make an appearance in my mind, I feel as though they are happening again for the very first time.  Things that I wished were not etched into my mind, things that I wish that I could erase.  Things that I know have changed me and made me a better person, but things that I don't ever want to relive again.  As real as the pain is, there is hope that fills me and allows me to breath. 

There are other moments that are etched in my mind too, that I wish were not there.  The pain and the fear that filled my mind as I learned that Lydia would have Down syndrome.  The myths and false thoughts that I believed would be my new life.  The grief that I had for the loss of a child that was never meant to be.  Lydia was meant to be in our family and I was so wrong to think those thoughts.  I did not know better.  I wish that I could "unetch" those thoughts, those moments, those fears from my mind.  I wish that I would have embraced the diagnosis and saw it for what it was, a blessing from up above.

Once again, those things cannot be "unetched" but it has become part of our journey.  I will most likely continue to relive these moments, experience this pain, but I have learned that I am stronger, that I am better because of these memories.  Just as I am better because of Lydia.  I am better because of Down syndrome.  I would not change anything and I am not afraid of her future.

I have realized that I understand things differently than other people do.  While I have not lost my daughter, I do understand the process more intimately.  I have seen life and death in my daughter and I understand how fragile life really is.  I try to embrace that on a daily basis.  I understand what it is like to embrace something so passionately because I realize what a difference that can make in someone else's life.  I wish everyone would dump a bucket of water over their head to bring awareness of Down syndrome, so people could truly understand how beautiful life is.  Instead I will continue to share our story and create awareness one person at a time.  Hopefully by sharing our story, I can help someone else as they face the diagnosis, hear the so call facts and grieve the loss of the child that was never meant for them.  I hope they can understand what a true blessing Down syndrome is.

I can't change the past but I can embrace the future with hope, as the new person I have become because of those memories.  And the best part of me reliving these memories last night, I rolled over and there was my beautiful daughter laying next to me.  Her chest was rising and falling and her little hand landed on my face and she started playing with my hair.  I wouldn't want it any other way!  I am so blessed.

It's Really Going To Happen?...You Are Really Going To Go To School?

I sit on my couch, completely paralyzed in disbelief that this is really happening.  I stare at the bath rug, the rug grandma bought you when you came home from the hospital to help you sit, to help you roll, to help you with the foundational skills of getting stronger.  It is the same bath rug that you will be taking to school on your first day.  I am sure that you will have many happy memories on that rug, that you will learn lots of new things, and you will experience life outside of being with mommy.  I know, it is a rug, get real...right?  I never thought I would be so emotional over a silly rug!

I never allowed myself to get to this point where you would be going to school.  It's a good thing, really it is.  It means you are strong enough, you are ready, and you have many more skills to learn.  I have been so wrapped up in your medical issues, your IEP, the day to day of adjusting to this new life with you and your sisters.  I have been processing all that we have been through and I have been trying to play catch up with your sisters from time I missed out on with them.  I have been trying to share your story in hopes to change other people's perspectives about Down syndrome.  I have been busy helping others as a way to try to show my gratefulness of all those who gave to us when I was not sure how to put one foot in front of the next.

It is not that I never thought of your future, because I did.  I was in the public school far before I needed to explaining to them who your are and what your needs would be.  I researched and talked with people to figure out what the best transition route would be for you.  I definitely have done my homework on it, but I never imagined what it would be like to get you ready and actually hand you off to someone other than a surgeon or doctor. 

I talked with your teacher (I will just clarify, we have chose to send your to the private school your sisters attend for many reasons, and we are still working out the details of your IEP, but you will get home services) the other day.  I am so impressed.  Lydia, you will be having a teacher who wants you there, who is willing to work with you and me, and who is completely passionate about teaching.  I have to say, for many reasons, this makes the process so much easier for me.

So as I prepare to get you ready for school, I feel lost.  There is a feeling of overwhelming pride and excitement.  There were many days that I thought that we would never be able to take you home, much less be at the point that we are sending you to school.  There are days when I hope and pray that I can send you away to just get a little break.  And then I feel guilty as I want to soak in every single moment with you and your sisters.

Last night was preview night.  I had tears in my eyes as I saw your name tag.  I saw your special mats on the shelf for changing you and sleeping.  I looked around the room and saw an environment where you can learn and be safe.  I have prayed for this moment but I have not prepared myself for it.  I know that every child in that class, as well as the teacher, will learn so much from you this year.  I know that you will really thrive in this environment and you need this.  I know you will do great so forgive mommy if she is sad or seems unhappy for you.  I am not.  You are growing up before my very eyes, you are doing things I never thought were possible and I am so proud of you.  You continue to amaze me every day and I am so full of joy. 

Lydia, you are at home in this school.  You enter the door with force and confidence.  You walk down the hallways and wave to everyone, giving Pastor knucks every day.  You sit on Miss Leeds' lap and go through her drawers.  You sit in your sister's desks and pretend you belong there.  You are not afraid of the high schoolers and often give them a run for their money.  You belong there and that does this momma's heart good.

To find a school like this is such a blessing.  To know that the staff truly wants her to be there and they really want to teach her.  To know that in every decision they have her very best interest in mind, I really can't put into words what that means.  I am glad because it has given me a peace as I accept that she really is going to school.

While we don't know if you will be healthy enough to make the year or how long you can handle in the classroom each day; I am happy you have this opportunity.  I am excited to see your new skills, hopefully you will start talking soon and maybe even eating better.  I am excited you will make many new friends and play with others in a more public setting.

It is really happening, you are really going off to school this year.  I am excited, but I do have to say that I feel lost.  And, mom will be at school every day you are.  That was part of our agreement, just in case there is an issue with you choking or something.  But you will walk in next Tuesday as a preschooler.  You will sport your back pack on your back, packed with your lunch and snack.  You will hang it up on your very own hook and walk into your room.  You will soon forget about mom until I come to see you at the end of your day.  I am sure you will embrace me and continue to be the HUGE stinker you have been lately.  The few moments of quiet will be a welcomed change for me, but my heart will break just a little knowing my girls are growing up.  Allowing them to soar and become the person God desired them to be is so hard.

I pray for you Lydia and your first day of school.  I pray for you and your sister to grow up and be the girls God desires you to be.  I pray that the choices that your daddy and I have made are just right for you.  I pray that your school gives you the opportunity to soar, experience new things, grow, and have fun.  It's really happening baby girl, you are really going off to school.  I am excited to watch you grown and learn.

I will update after her first day!

Through Your Eyes

I sit here, rocking you, staring into your beautiful two-toned, almond-shaped eyes.  I see so many stories through your eyes.  I can remember the time in the hospital when you were hooked to tubes and wires and you had multiple machines pumping medicine into you.  I remember you fighting to move your body, your mouth making a dry painful soft noise as a machine continued to breathe for you.  I remember looking into your eyes.  I remember seeing pain and suffering and I remember you looking at me telling me "Mom, please help me, make it go away."  I remember feeling so helpless for you, I remember wanting to scoop you up out of that bed and hold you.  I remember wanting to take the pain away, but remembering this is your lot and this was your battle to fight.  I remember telling you I would hold you when I could and I would never leave your side.  Those eyes, were tired and worn and exhausted.  They showed pain and looked helpless.  But you never lost your spirit, you never lost your fight and through it all, your eyes always had a twinkle of life in them.

As painful as some of those memories are to relive when I look into your eyes, they strengthen me and give me hope.  Your eyes tell a joyful wonderful story of pain and sorrow, but of overcoming, of never losing hope.  I love the beautiful stories your eyes have to tell.  I love the twinkle that your eyes hold no matter what the struggle is for you.

I remember hearing of your diagnosis and reading more about it.  One of the main physical characteristics of Down syndrome are eyes.  They say that children, adults, people with Down syndrome will have almond shaped eyes.  They say it like it is a bad thing.  They say these eyes will define you, will let someone know that you have Down syndrome just by looking at you.  These almond-shaped eyes will be a tell tale sign.  I read of many moms and dads who don't like the almond-shaped eyes because they don't like what that means for their life, their future.

Looking back, I have to say that they were in part right.  Your eyes do define you in many ways.  I personally like the almond-shaped look on your face, it fits you just right.  But looking into your eyes I see so much more.  I see the stories you are yet to communicate, I see the battle wounds that you carry with you, I see the hope that you give to so many people, I see the love that you have for everyone you meet, I see the beauty that God created just for you.  And through your eyes, the stories that you are telling, I get to see a whole new perspective on life.  I am the blessed one because of those almond-shaped eyes.  But sometimes it is looking beyond the physical appearance and looking right into those eyes and the stories that they tell.

When I am sad, you look directly into my eyes, lay your sweet head on my shoulder and gently caress my arm.  You see stories in my eyes too.  Without saying a word you communicate a love, a story, a passion, a gentleness to me.  You understand me in a way that no one else does because you see something no one else can see.  I truly believe that you see the soul of a person because you are not concerned by things of this world, by outward appearances, by what others tell you.

When I am struggling, when I am exhausted, when I feel worn, you look at me with such compassion and strength and tell me a story.  You remind me that I am strong because He gives me strength.  You remind me what faith can do, it can move mountains.  You remind me how important hope is.  You remind me of miracles.  And most importantly, you remind me of the little stuff, the simple stuff, the most important stuff.  You remind of love and not just any kind, the sacrificial love of Christ.

When I start to wonder how will I ever make it through?  When I start to wonder why?  When I start to get angry because people just don't understand?  When I see the ignorance of people and their unwillingness to accept differences.  When I start to doubt why I was given this long journey.  When I start to feel alone and cry.  When I feel like I just cannot go on.  When I feel like no one understands.  I look into your eyes.  I see the stories that you have to tell, I remember the overcomer that you are, and I remember what God has done for me, I am once again filled with the strength that I need.  I remember it is all because of your almond-shaped eyes.

When I look into your eyes and see how joyful you are and how full of life you are, it gives me comfort and peace.  No matter how tough this journey has been or will get, we can overcome any obstacle that is put in our way.  You have overcome so much, you have shown just how mighty and powerful our God is.  With faith, hope, and perseverance we are tested, shaped and molded to be more like Christ.  And your almond-shaped eyes remind me that the journey is not mine, it is not the one I planned.  Things will not go the way that I want them to, the outcomes will most likely not be the ones I prayed for.  However, they will be God's perfect plan, just as He gave you to me.

When the world would like to say that your almond-shaped eyes are a defect, I look into them and say they are perfect.  They were created in the image of Christ, perfect and whole.  So while someone may look at you  and think something horrendous or be completely ignorant, I see the stories and the strength and the love that your eyes hold.  You are teaching me, dear child, to look through life with a different lens.  Personally, I like how the world looks through almond-shaped eyes so much better than what it looks like through oval-shaped ones.