Saturday, August 30, 2014

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.

Friday, August 22, 2014

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!

Wednesday, August 13, 2014

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.