Wednesday, July 30, 2014


I sit here in the quietness of the day.  The kids are in the camper playing and tears are streaming down my face.  I silently sit and listen to a story that is on my heart as I listen to God.  I have come to Him today with a tired heart, with an exhausted body, with a weary soul.  I find rest and comfort in Him and His Word.  And how can it be that I still cannot completely rest in the comforts of His arms?

I find my thoughts drifting to "Why me?" "Why are we walking down this road yet, again?" "I don't think I can do this anymore." "What do you want to teach me this time, haven't I learned?" "Why my child?" "Why can't she be made whole again?"  I pour out my heart and soul to our Maker looking for answers, but secretly I already know the answers; I just don't like them very much.

In trials, I truly believe that is when we find ourselves.  I believe that we further become the people  God has intended us to be.  I heard a great analogy of that this past weekend.  I am going to try my best to say it again.  An airplane mechanic (not my husband) held up a wrench that was specific to a task that he needed done when fixing an airplane.  It was shaved down, fragile, and tattered.  It was shaped and molded to be exactly perfect for this one particular task that was very important to this mechanic.  He also held up another wrench.  This wrench was heavy duty and could get the job of taking off lug nuts from a car among many more.  If you used the other wrench for pretty much any other task, it would surly break.  We are all like that airplane mechanic's wrench.  God has a specific purpose in mind for us.  And, in order to accomplish that task, He must grind on us a little, polish us up, break us down so we can be effective and useful in one specific task.  Sometimes it hurts us, sometimes it feels as if it would break us, sometimes we wear our battle wounds on the outside of our skin, and sometimes we are only needed at a very certain time.

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.  Perseverance must finish its work so that you may be mature and complete, no lacking anything." James 1:2-4

Let me ask myself again these self pity questions that I mentioned above.  I was chosen by God to be on this journey, that is why.  We are walking down this path again because there is still so much God wants me to learn (maybe I have learned it and I need to test out my skills, or maybe it is just because it is the path that God has chosen and eventually I will find out the bigger picture He has written for my story).  Lydia was created perfect in the image of God, so He sees nothing wrong with her.  Yes, she has more trials than others, and much larger obstacles, but she is perfect in the image of God.  I need to embrace those and give joy as we preserve and develop more faith. 

As our surgeon said to us, Lydia was born broken.  There is no way to put her back to the typically normal.  What they did for her in all of her surgeries, was put her back together the best way that man knows how.  She is still perfect in the image of God and it is exactly how God intended her to be.  So while she lives on this earth, this fix will have to do.  She will still have to continue to walk these medical issues and overcome other hurdles.  However, God will not leave or forsake her, nor any of us.

And it is in this brokenness that we find true beauty.  I truly believe that.  When we are broken we are vulnerable and we grow in our faith (or we should be if we are truly looking to God), we are challenged and we end up changing.  In Lydia's brokenness she is made beautiful.  I see so much more now than I would have if she were not broken.

This is one reason, I believe, why children with Down syndrome are so beautiful.  They are labeled and told what they will accomplish and what they won't accomplish before anyone knows.  Parents who get the prenatal diagnosis often sit and wonder why, what will the future hold.  Some of that joy of finding out your are expecting a new baby is robbed because of the brokenness that surrounds you.  Or, if you just welcomed your baby with no expectation of a diagnosis of Down syndrome, your world seems to crash in around you, sometimes you may even feel that your child is broken just because of this diagnosis.

However, that is where the beauty comes in, God's beauty.  When we rest in His arms, allow Him to take control and trust Him, we see that are children can accomplish far more than what we ever expected them to.  Maybe it is because our expectations were lowered.  However, they should not be, they are not broken, they are your children and they are beautiful; label or no label.

But it is in the brokenness that I understand just how beautiful life is.  It is in the brokenness of our medical walk, that I see how beautiful Lydia's scares are, her challenges are.  It is in the brokenness that I see beauty and that the impossible becomes possible.

I remind myself of this often.  Especially when I long for the day Lydia will be able to eat a meal like very other kid.  I bring myself back to reality.  There are many kids that are dependent on tubes; just like Lydia once was.  There was a point on this journey that Lydia was told she would never eat orally, and yet it has been a year and a half since the tube was pulled out and almost two years without being fed.  So if we have problems here and there (or for very long periods of time), there is still great praise to give.  And no matter how a child is fed, does not matter.  I try to help myself minimize the problem, take my eyes off the circumstance, and fix my eyes upon Jesus.

Today I feel broken and empty and lost.  Today I am struggling, yet when I take my eyes off my circumstance, and look to Jesus, things seem so much better.  Whatever you are going through today, I pray for you.  Whatever your circumstance is, know that God is there and will not forsake you.  Even in times of troubles and hard, hard situations; God is there.  Remember, God is using you and has a very specific purpose for you.  Your purpose may only be for that moment when the perfect tool is needed, but without that tool, the job could not be accomplished.  You have more worth that you know and when you fix your eyes upon Him, your circumstances seem to be small too.

Today a friend reached out to me about a family member receiving a diagnosis of Down syndrome.  As I hastily started replying, I had to back up and just congratulate them on a perfect blessing.  Sometimes that brokenness takes over and we forget to see the beauty.  I pray that this family will start to understand the amazing journey they will be on and how wonderful it is.  Scary?  Yes, but so worth every moment!

And to that lady the other day who commented to me that she was glad she did not have my lot of having a child with Down syndrome...AMEN!  I am glad she does not have that "burden" too, because Lydia is no burden to us.  She is our child and we love her, just as we love our other children.  The journey a little different, but an incredible learning experience!  It is life changing and I am sure glad I allowed myself to be vulnerable and let change take place.

Thursday, July 17, 2014

Coming to Grips

To say that I have been struggling lately is probably an understatement.  I have felt like there has been a story on my heart for awhile, but I don't know how to get it out.  So many things that have run through my head, so many thoughts, so many emotions I have felt.  However, there is one word that keeps coming to my mind.  Trauma.  I looked it up and it said 1. any physical damage to the body caused by violence or accident or fracture etc. 2. an emotional wound or shock often having long-lasting effects.  I guess that seems to sum up some of what I have been feeling.

I am struggling with the birthdays of my daughters, Allison and Lydia.  I wrote a letter to Allison yesterday and it felt good.  I feel as though I have not been present in life for the past three years.  And then, how could it be that Lydia will be three?  Part of me is so excited because I never thought, due to all of her medical issues, that we would ever be celebrating three years with her.  The other part of me, due to her medical issues, is just exhausted.

When I go through the memories in my mind, the last image of Allison is her holding her new sister.  She was in a flowery dress and she looked beautiful.  When Lydia put that dress on for the very first time, I could not believe it.  I could not believe that we have come this far.  I was sad because, in my mind, I have very limited memories of Allison for the past three years.  There has been so much trauma that we all have over come, that I believe that I have allowed myself to not remember some stuff on purpose.

Besides the big birthdays that I have been struggling with, I am unsettled.  I feel like God has big plans for me, but I feel as though I just need to be for awhile.  Sometimes I forget why I write.  I write for the soul purpose of healing, of releasing emotions.  However, sometimes I feel jealous that my writing is not shared, that I don't impact people like other people do.  I hate that I feel that way.  I hate feeling jealous, especially over something simple. 

I long to make an impact in the world.  I have great ideas of helping, of raising money, of doing something that will really make an impact.  However, I get lost.  I don't know where to start or what to do.  God has me right where He wants me to be, and I need to be comfortable with that.  I need to be present right where I am at.  I need to live my life according to Him and in a manner that will bring honor and glory to Him.  Sometimes I get confused and I get caught up in what I want and not His Will for my life.  It makes me feel very unsettled.

Sometimes I just cry because I can't quite comprehend everything that we have been through.  I read stories of others who are in the hospital and going through hell and back.  They are riding that roller coaster of emotions and feelings, of highs and lows.  My heart breaks for them because I remember those days.  They are etched in my mind and they will never go away.  I remember seeing my baby blue and hearing the flat line and being so helpless as I watched everyone in slow motion try to save my baby.  I remember making phone calls to my husband telling him to come home, they were unsure if Lydia would make it through the night.  I remember having specialist upon specialist in our room, scratching their heads, unsure of what the next step would be.  I remember waiting, praying, pleading, that she would survive the next moments.  I remember the extreme stress and pressure.  I remember our divided family.  I also remember just going through the motions because you had to.  You had no choice, sometimes there wasn't even enough time to cry.  You just did because that is what you had to do.  One foot in front of the other was all you could handle.

Coming home and adjusting again to a new life.  Getting settled in your home that was now sprinkled with medical machines and medicine instead of pictures and toys.  Finding your way in a world that seemed so familiar, yet so unfamiliar.  Watching people who use to be your friends living their life just as they had planned, and you no longer had a place in their life.  I remember that life seemed to stop for us, our path had abruptly come to a fork in the road, and we took the path that had been less traveled. 

I think one of the hardest things I have to come to accept is how I have changed.  My life does not resemble anything like our "pre-hospital" days.  I am a much stronger believer.  My faith has increased and that is who I am.  I am nothing without my relationship with God.  He was the One who saved me, who changed me, who carried me, who got me through this trauma. 

The images that we lived through are etched in my mind and always will be; it's not something you forget.  The trauma that we endured is close to my heart and still continues to have lasting effects. 

I am starting to come to grips with this.  It seems like some of the dust has settled, but I have recognized that it will never completely settle.  As we thought things with Lydia were finally "good" she gets sick, the oxygen supplies sprinkle our home, the ugly comments when we are out in public are heard, the added stress of a sick child are felt, the house arrest (not going outside to play), and the constant worrying about your child; Are you doing the very best for them?  These emotions and feelings are felt over and over, and this is just the way it will be on our path.  This is our new path, it is our life, and as much as I fight it; it is good.  This is our story, our path, our life and I would not trade it for anything. 

We no longer live life on a whim, but we plan everything around Lydia and her needs.  And that is OK.  This life is OK.  The trauma that we all experienced has changed us, challenged us, affected us, and will continue doing so; and that is OK.  The people we have become is by God's design.  We have not lived this path for nothing.  God has given us a story, one to share because is it is ours.  This is the life we live, these are the stories we live and that makes it beautiful because it is ours.

To put these words down on paper and breathe makes me feel so much better.  To release these emotions that have been eating me up inside is so freeing.  This is my story, this is what I have to tell today.  Trauma is living out those injuries life has given to us.  Our baby was created perfectly in God's image, He provided the medical resources to allow her to live this life, He empowered the perfect family to have her live with.  In doing so, we all faced trauma of some sort and we live that out.  We are changed by it, we have been affected by it and in the end, we have become better people by it.

Wednesday, July 16, 2014

Happy Blurday Allison

Dear Allison,

Happy 6th Birthday my love!  I can't believe where the time has gone.  In my mind, time has frozen still.  Somehow I don't remember you last birthdays.  The past three years have seemed like a complete blur.  As I sit to write you, the tears are flowing down my face and a picture of a three year old is etched in my mind.  I want to so badly grab the past three years back and hold on to the moments.  However, God has written different plans, and as painful as they are, I look at who you are today and I could not be anymore proud of you.

As your mom, I am hurt and I look at the past three years with a lot of pain and little memory.  Somehow it has been a complete blur.  However, God has given us this amazing summer where I feel like we have been able to make many memories, have the snuggles you so enjoy, and talk and laugh together.  I feel as though my mind is once again working and I can now etch your beautiful, freckled covered nose, gorgeous blue eyes, long blond hair picture into my mind.

Three years ago you turned three, mom was pregnant and we were all scared about what was going to be happening.  We knew that you would be welcoming a new sister, we knew that she was going to be sick, but we could not have prepared ourselves for the ride God wrote for us. 

The sites and sounds and smells and fears and pains of three years ago are still so fresh in my mind.  When I look at you, sometimes it is hard for me to see who you are today, I still see you as that little girl.  I cry because I feel like I missed so much with you.  I really have no clue where that time went.  I know that I was doing as I needed to do, you were in loving arms, and mostly I was there.  But I write you this letter to let you know how much I love you and how proud I am of you.

Three years ago we had your birthday party at the toy store in town.  Mom was unable to drive and I was really not suppose to be out.  Your grandma's and your aunt made that day possible.  There were many loving friends who came to support us as well.  We didn't know when mommy would be going to the hospital so we tried to take advantage of all those moments, we tried to soak up every last snuggle we could.  I am so glad we did.

You were so excited to have your very first friend birthday party.  You had picked out a gorgeous princess cake with your grandma.  You were so excited.  And moments after your party ended you left with your grandma.  Mommy needed to have her rest.  My arms were so empty, I wanted to continue to celebrate with you, I wanted that moment to never end.  Your pony tail bopped around in the wind as you put your foot in grandma's van.  I waved goodbye and tried not to show my tears.

Six short days later, grandma brought you back to the house.  You were wearing the cutest little dress.  Your face was so beautiful and you had a smile that lit up the room.  I remember your hug.  You strong arms wrapped around mommy's neck with your little hands patty my shoulders.  Mommy and daddy were leaving for the hospital.  We did not know if your sister would be born that day or if mommy would have to stay in the hospital.  We were nervous and scared.  You were so happy to be home and playing with all of your new toys from your birthday.  You waved at me, told me you loved me, and said it was all going to be all right.  I remember that day as if it were yesterday.

We ended up having your sister that night.  Grandma and grandpa drove you to Milwaukee late that night and you swam and feel asleep in grandpa's arms.  At 9:00 that night, Lydia was born and a new chapter in our life was beginning.  It was scary, but nothing broke your smile.  You were always thinking about other people.  You gave me strength because I missed you so much.

I remember the next day, you walked into that hospital room.  You had the cutest little flowered dress on.  Your aunt gave it to you because you were growing out of your clothes and mommy was so busy she did not noticed.  You were so shy.  You saw mommy and ran to her.  We showed you your new sister and you were shy.  You did not want to leave your grandma's side.  Eventually you warmed up and once you did, there was no separating you from your sister.

The next five months we spent more time apart then we did together.  I tried so hard to be strong, but it tore me apart to see you hurt so much, to know that you had to spend so much time apart from me.  All you wanted to do was snuggle, and believe me, that is all that mommy wanted to do too!  This was just the beginning, but you were so strong and brave.  God gave you two of the best grandma's who took such good care of you.  He gave you cousins that kept you running and playing until all hours of the night and He gave you aunts that cared for you as if you were theirs.

Coming home was amazing.  You took care of your sister like a pro.  You were always there to give a helping hand and comfort the saddest of souls.  I know there was never much time to be with just you, it seems as though Lydia's needs were always put before yours.  As a mom, it is so hard; but I did my very best.  As a mom, I was stretched so thin, but God gave us an entire community that helped you understand just how much you are loved, just how important you are.

I look at you today and I am so proud of who God made you.  When I think of the past three years I often think of the pain and trauma our entire family endured, but you survived.  Most times we talk about Lydia and what a fighter she is.  I think you one too.  You were behind the scenes and you often were left to the side.  You did not complain or hide.  You wore your smile, you showed your tears.  You were a big girl when you should have been mommy's little girl.

But you are a better person because of this experience.  You understand and care far beyond your years.  You notice the smallest of details and you love so deep.  It is not the road I would have picked for you, but I am so glad that God is the author of your path because you are one amazing girl.

I realize that we are on a journey with your sister, that her medical needs will always be there.  But some how God has really brought all of us together.  He has allowed me to see you for who you are today.  The pain is still there, but I am so enjoying being your mom.  I wanted to let you know how special this birthday is for me.  I see you in that pretty little flowery dress holding your sister for the very first time.  Your eyes lit up the room and you were the proudest sister ever.  Today, you are one amazing little six year old, filled with love and compassion far beyond your years.   Because of what you have done for you sister, she is wearing that dress today, looking up to you, learning from you, and wanting to be just like you.  What an amazing role model you are!

I love you Allison.  I am so proud to be your mom.  Lydia has a GREAT big sister.  Thanks for being so selfless and allowing us to grow together as a family.  I can't wait to see what else God has in store for you as you continue to spread your wings and soar.


Thursday, July 10, 2014

This Is Why

It's that time again, we are starting to raise money for the Down Syndrome Awareness Walk and recruit people to be on our team.  It is a passion for me, for my daughters, for my husband, for our family.  But why?  Why is it important for us to raise awareness for Down Syndrome and what is it that we are hoping to gain by doing so?

These are some of the questions that have been on my mind recently.  I have pondered them, prayed about them, and just sat silently thinking about them.  Before Lydia came along I never quite understood why it was so important.  I was connected to the world of Down syndrome.  My cousin has a son who has Down syndrome and my husband's friend growing up has Down syndrome (he even was in our wedding).  But I never understood like I understand now and that is why I write. 

It was at the diagnosis that I started to understand.  At 20 weeks we were delivered the news.  We had a "chance" of having a child with Down syndrome.  While our diagnosis was given in a positive light, there were questions and whys and what did I do.  I think that there is still  astigmatism that comes with this diagnosis that automatically puts you in a very elite class.  However, it is not an elite class that everyone is ready to sign up for until you have experienced it.  Now I would not trade it for anything!

That diagnosis began our journey into the world of Down syndrome.  I remember telling people and it seemed as though everyone knew someone else who had Down syndrome.  "Oh, my sister's friend's brother is Down syndrome and he is so happy.  You will be just fine."  I remember just wanting someone to congratulation me on the precious life I was carrying.  I did not want anyone to classify her, no one did that with my other children.  I remember questioning what was so different.  She was labeled even before she had a chance to show the world who she is......she was Down syndrome, she would be happy all of the time, and we would be just fine.

I remember one ladies perspective, a complete stranger who stopped me in the store and felt the need to give me her opinion.  After asking some questions, and my daughter mentioning Down syndrome she told me (my daughter was right there) "Oh, your baby will amount to nothing, she should be aborted."  That was the future that many saw fit for my child.  It was not the "Oh your pregnant, congratulations."  I heard a lot of "I am so sorry for your tragedy, I am so sorry about this, I am so sorry you have to go through this."

Our baby was born with a lot of medical complications.  She spent time in the hospital.  We continue to spend time in the hospital.  However, this is her story.  This is her journey.  She handles it all with grace and compassion and she teaches everyone she meets along the way.  Hard or unfair really does not come into play, this is her story and she lives it beautifully.

I still hear unwanted comments, I still hear old stereotypes and people always tell me how happy she always will be.  I hear that we will be OK and I am special because I was chosen or Lydia is such an angel.  I guess among some of those thoughts there is some truth.  I am special that I was chosen to be her mom, but I am special that I was chosen to be Ellen and Allison's mom too.  We will be OK because there really is nothing different about Lydia than Ellen or Allison.  However, the other comments could not be further from the truth.

The fact is, Lydia is a person.  She is just like her sisters.  She has a beating heart, a personality, she gets angry and is stubborn and she is laughter and joy.  She is all of it.  She is a person with a voice and a mind of her own.  She is delayed, in some areas. She holds a pencil, crayon, marker, pen like no body's business.  She, however, cannot dress herself completely on her own.  She is a hard worker and she usually works on something until she gets it.  She is not interested in potty training, however, she does understand the concept.  She does not talk too much but she can communicate to you exactly what she wants.

We walk to raise money because it is important when families learn that their child has Down syndrome, some things will change, but everything will be OK.  It is not as scary as the false perceptions and stereotypes that are out there.  We walk to raise money because these families need help and support to give their child the very best chance in life.  We walk to raise money because if we are able to change the mind of one person, we have accomplished our goal.  We walk to raise money because spreading awareness in our community will provide for a better future for our daughter and her peers.

We recruit people to come on our team because we want these people's lives to be impacted like ours.  We want to show off the ability that our daughter has.  We want you to interact with others so you understand what we understand, there is no difference.  We recruit people to come on our team to walk so you can hear the speaker at the walk.  The lasting impression that they will leave on your heart is priceless.  We recruit people to walk on our team so you can come around us and show your support too. 

There is no cure that we are looking for, only a better place for our daughter.  Down syndrome, in my opinion, is not something that needs a cure, but it does need acceptance.  Down syndrome is a journey just like anyone else.  Yes, there are tendencies that describe people with Down syndrome, but that does not define who they are. 

By sharing our story, we are opening our lives into a sneak preview of what it is like to live with Lydia.  She is Down syndrome, she is a daughter, she is almond eyes, she is a sister, she has congenital heart disease, she has an extreme love for people, she is happy; a lot but not all of the time, she is determined to do what her sisters do, she does have Chronic Lung Disease, she is Lydia.  I pray that our story touches your life in some way and you can appreciate Lydia and Down syndrome.  I pray that our story has changed you and you can help us break down some of those walls and change the stigma that is associated with Down syndrome.

If you are a new mother, a new family, a new grandma or grandpa who has just learned someone with Down syndrome will be joining your family...CONGRATULATIONS.  In sharing our story, if we have created awareness, broken some stereotypes, if we have opened up your mind to how beautiful life is no matter the label than we have accomplished our goal.

I am passionate about creating awareness, sharing our story, and helping other families.  I am passionate about creating better communities where all life is precious and valued.  A disability comes in many shapes and forms, some you can see and some you can't.  However, everyone has a story, everyone has an opportunity to impact someone and everyone has an opportunity to change some one's mind.

Ellen and Allison understand this concept.  This year they are Peddling Awareness for Down Syndrome. They decided they would raise money by biking miles in honor of their sister.  It is that important for them to raise money.  As a mom, my heart is full.  They want everyone to know what a joy Lydia is.  They are the big protective sisters, but they are in love with her and they see no differences in her.  They help her (maybe a little too much) but they also encourage her and push her to see her full potential.

Please consider joining our team or supporting us as we try to change the communities we live in.  I would hate for another mother or family to receive a diagnosis (prenatally or at birth) and feel like it is b ad.  I would hate for another family to feel like there is no hope.  While there is a normal grieving process that usually goes along with any disability, knowing that this journey is awesome, makes all the difference.  Here is our team page for the Down Syndrome Awareness Walk for the Fox Cities.  We would love for you to join our team, or help us raise some money.

And if this has touched you, please share this with others.  This is why we do what we do.  This is why we share our story.  If it helps one person, we have accomplished our goal.  Also, it is great encouragement for Ellen and Allison to see supportive comments and have people pledge.