Tuesday, April 30, 2013

What if the shoe DOESEN'T fit?

I think the longer you are around hospitals and doctors and so forth you realize that the science of medicine really has no science to it at all.  Most times the treatments, the best path to take is an educated guess.  There is no real shoe that fits a diagnosis, a treatment, a path.  Often times what seems like it will work does not and the wacky idea is what works.  I think being around medicine (I am talking when you have a child who is sick and you have little to no medical background) it can make you go nuts.  Nothing ever seems to go the way they think it will and just when you are about to scream, you try something off the wall and it works. 

I have been thinking a lot about this lately.  I think back to times when Lydia was in the hospital and how frustrated my husband and I would get.  They would try and try and try things and it never seemed like it would work.  We would get the answer oh this should work now, this drug could have interfered with the angle of the light (OK...that is a little dramatic, but you get the point!).  I guess that is why when you hear a drug and the side effects, there is a longer list of side effects than what it is actually "curing."  They need to cover all of their bases because there is no one shoe that fits everyone.

We were all created as individuals to love one another, to care for one another, I believe to praise God.  I do believe that He created us and we live for Him; this is just our temporary home.  But no two of us are alike.  Even twins have different minds and interests and looks.  They may be similar, but they are still different.  God made us all individuals and together we can accomplish great things.

I guess that is no different than Lydia.  She was created as an individual.  She is Lydia and Down syndrome is something she has, not who she is.  We can compare her, we can test her, but ultimately she is going to be who she is, accomplishing things on her time line.  Not ours.  But no one expected her sisters too and she is no different.  You can try to lump her into a group, but she will prove you wrong; she most likely will not fit all of the time.  And on a side note: I have been asked several times what level Downs is Lydia.  Not sure how to answer that.  Again, the shoe does not fit everyone and she will be who God created her to be.  My husband gave me a great idea, the next time someone asks me that question tell them that she is a level 5 and just walk away.  I think I may.  End side note!

The shoe cannot fit everyone.  Even in Cinderella we learned that.  As much as the step sisters wanted it to fit, they couldn't.  It fit perfectly on one person's foot.  If we stop trying to be someone we aren't, if we stop trying to make people into persons they are not, I think then we can truly enjoy the blessings in life.  We can accept them for who they are and ourselves for all of our faults.  Wouldn't our life be much better if we accepted who we are today.  That does not mean that we can't change that we can't work to improve ourselves, but just embrace who we are today.

Today Satan has really been attacking me.  After a rough day at the doctors I went to the store.  I wanted to buy a tub of ice cream to go home and eat and cry.  As I walked in the store I kept seeing all of these very pretty ladies who were skinny and appeared to have money.  They appeared to be happy and have something that I didn't.  As I looked at myself, I had cracker from head to toe from Miss Lydia, I am slightly overweight, but I lacked any kind of confidence. 

I should show that I am a proud mom of three beautiful children, yes, I could stand to lose weight, but I try to teach my daughter's the importance of a good self image...NO MATTER WHAT.  My clothes are terribly out of date, my hair was actually curled, and I am sure I have no style.  However, I have never been a skinny minnie, never will, but I could do a better job at eating healthy and working out more.  I have never had any style, so it is not happening now.  But I realized that I have the opportunity, the gift to present to my girls a good self image.  Because I really don't care about the "looks" my girls don't have to hear me say I am ugly, oh that doesn't fit, I am fat nor do we focus on that as a family.  Yes, those comments creep in my head but I am aware of that and try to protect my girls.  So if I have to give myself a pat on the back; I do believe I do a pretty good job of that.  Now hiding your feelings in ice cream, not so good at that.

What I am trying to say is the shoe does not fit me for being skinny.  I am pretty sure the rich shoe would not fit me well either; I am a cheapskate at heart and I enjoy the dirty work!  The style shoe does not belong to me either.  But there are many other things that do fit and I need to be proud of them.  I need to embrace them.  God gave me many gifts and if I would stop longing for something else, I could perfect what I have been given. 

Lydia will have many different shoes that will fit and many that won't in her life.  BUT her sisters will have that too.  It is important to focus on the ones that do fit.  Sometimes it is draining raising a child with special needs.  You constantly go to appointments and testing and therapies to learn the shoes that do not fit.  I would encourage everyone to focus on the shoes that do fit.  I want to focus on the ones that look beautiful on her and show those off.  I don't want her to be uncomfortable in ones that are too high or are too small or too tight...I want her to be comfortable just the way she is.

In many aspects of our lives I think we can find shoes that don't fit.  But often times I would say that it is a blessing because it is not who we were created to be.  I think when we try to fit into a shoe that is too high, too low, too tight, too small, too big we look silly, we are uncomfortable.  Until we find the shoe that fits I believe we will always be out of place.

So today I will focus on who God made me and I will be proud of it.  I will focus on who God created my children to be, 46 or 47 Chromosomes does not matter to me.  All of them are gifts and have something a little bit different to add.  Be proud of who God created you to be and don't worry if the shoe does not fit, there is another one that looks better and is more comfortable.  I couldn't imagine Lydia with 46 Chromosomes; she just wouldn't be Lydia.

Thursday, April 25, 2013

Comfortable Clothes

Many times children with Down syndrome are referred to as having Designer Genes.  They are specially created with 47 Chromosomes rather than the normal 46.  They have one extra gene that makes them totally special.  They have 3 copies of the 21st Chromosome rather than 2.  They are special, there is no doubt about it.  However what about this Designer Gene thing? 

I have been thinking about this lately.  Maybe it has been because I have been wearing a lot of comfortable clothes.  Things have been a bit stressful around our house and most days I don't have the energy to make myself look pretty, to dress in anything than what makes me comfortable.  What is wrong with that?  As long as I am comfortable right?

There are many things that Lydia has taught me.  There are so many lessons that she reminds me of daily.  She is just 21 months today and yet she has changed my entire perspective on life.  She has taught me more in the past 21 months than I have learned in my 32 years on this earth.  Many people may argue how a 21 month old could change you, but I would encourage you to think back of the first time you held your child, how they took your breath away.  I would encourage you to think about how you could love someone you did not even know.  She has changed me because she is who she is.

And maybe she has not changed me as much as what the label that she caries has taught me.  As a society we chose to label Designer Genes as bad (this is funny because many people spend WAAAAYYY too much money on these jeans to fit in or to look a part).  As a society we stereotype and say that they will never be this or that.  People are often very quick to voice their negative opinion.  However, every single day she defies that label that make her Lydia, just by being herself.

Every day she meets a new milestone in her time and in her way.  She looks around with a BIG CHEESY smile and waits for you to clap and cheer her on.  She is oblivious to the outside world and what they say.  Each day she sets her heart out to do a new task.  She is determined and nothing, no label or stereotype, will stand in her way.  Despite any bad (the needles, constant doctor appointments, people poking and parading at her, mommy making her take medicine she does not want) she has a smile on her face and goes about her business.

She feels just as we feel.  She feels in a deeper way.  She is mostly happy, but she does get upset and frustrated, sad and angry.  She loves hugs and kisses and smiles.  Most of all she loves to give other people high fives and watch them smile.  You see, watching others around her be happy makes her happy.  When there is yelling and fighting in our house, she does not tolerate that well.  She will crawl over to you and hug you or kiss you.  You see, she only knows how to be herself.  She does not know how to fit into a label, she does not know stereotypes, she only knows to be the person God created her to be.

She is comfortable in her Designer Genes.  She wears them well and they look so good on her!  She can teach you a lot about her Designer Genes and what they really mean.  They are not meant to be worn to classify you as someone who is cool or popular.  They are not meant to be worn to be looked as bad or not as capable as someone else.  They are meant to be worn proudly and comfortably.  They are meant to be worn as part of who you are.

So as I sit in my comfortable clothes I think about how comfortable I really am.  Do I LOVE who I am?  Do I feel OK in my skin?  What do I do for other people?  What makes me who I am?  Is it how I look or what I wear?  Does my own skin fit who I am trying to be? 

I have a lot to learn from Lydia.  You see, she is comfortable where she is, I am not.  I am always trying to improve my look.  I am trying to loose more weight, dress to fit in, have the latest and greatest, spend waaaayyyy too much time and money on makeup and beauty products that portray a fake Tiffany.  All I need to do is look at who God created me to be and be that person.  Yes, sometimes the outward appearance helps me to feel better, but you see, that never really changes who I am, in never changes the inward appearance.  I can pretend on the outside to be someone else, but I am still the same unhappy discontent person on the inside.

Maybe you have to experience to understand it, but she is my role model.  She teaches me about me more than I know.  She is comfortable in the skin she was born in and she is proud to display that.  She does things because that is who she is, not because someone tells her to, because she needs to live up to a certain standard, but because she is being exactly who God created her to be.

I think we have it all wrong as a society.  We label Lydia when I would argue that we are all longing to be as comfortable in our own Designer Genes she is.  I think we all long to be confident in the skin God created us in.  I am sure there will be days when she wants to fit in, that will be hard; but I am sure the days will be far less than what my other girls experience.  You see, there is a twinkle in Lydia's eyes that you can see that is different and I want that twinkle.

I am the blessed one because I have that role model each and every day to help me learn.  I am a far from being comfortable in my "comfy clothes" but I am sure going to try.  I want my kids to have the kind of role model that Lydia is.  I want their mommy to be comfortable in her own skin, to be confident and to be who God created her to be.  I don't want to dress to fit in, but I want to be who I was created to be.  I want to wear my own Designer Genes as comfortably and confidently as Lydia does.

Monday, April 15, 2013


Sometimes it amazes me how fast sin can creep into our lives.  When we least expect it, there is the sin staring us in the face.  And for me, most times I am caught off guard.  There seems to be something going on with me and I can't put a finger on it.  After a couple days of prayers, readings, and meditation, I often times find out that sin has taken over in some area of my life.  I normally have a hard time with my thoughts; they seem to run and never stop.  I have to stand back and continually ask God to take them captive.

I think that I have shared over and over that the past couple of months have been a bit rough for us.  It just seems like one thing after another, and there is no break in sight.  The storms have raged and the water has flooded our lives.  But we still find a way to build a relationship with God, a stronger marriage than the day before and we try to parent our children the very best way we can.  I think that is what we all would do.  After much reflection, however, I have come to realize that sin has crept in my way.  Although, I am SO GRATEFUL for my experiences, for this journey God has given me, I have felt pretty lost.

Mostly because jealousy and discontentment have set in on me.  While I try to say I am so thankful, in my deep thoughts I yearn for something different.  I decided that if I write them down, they will be real and I can deal with them and move forward.  I think when sin has flooded me and caught me off guard I try to make excuses.  So I am forcing myself, today, to confront these nasty voices in my head that have been consuming me.

I am jealous at people who are able to go out with their spouse without a constant worry of a child.  I have always worried about my other kids, but with Lydia it is different.  There is so much about her, so many things that could go wrong.  Eric and I have gone out very little in the past two years.  And it is not because I am being an over-protective mom, it is because I am doing what I have to to keep my child safe from harm.  It gets to me to hear people doing this and doing that.  I am happy for them, but I wish that we could do it to.

This past weekend there was a woman's spring fling at church.  How I longed to go to that.  I couldn't.  My child was sick, she needed me.  The first call that God has given me is a mother these days, and I have to protect His child.  I wanted to be there, I wanted to be in fellowship. learning and growing.  I also did not want to face the guilt because I was not there.  The comments made by people who just don't understand the situation.  It is hard.  I try really hard to give them grace, but inside I am screaming...you just don't understand.  You have no clue what it is like.

There have been many events that I have had to miss because of a sick child, no one to watch her, or it is just not the best thing for her.  I had to miss saying goodbye to one of my childhood pays as they laid him to rest.  I had to miss going to benefits for other sick kids, to support their families.  I have had to miss out on my favorite Easter service, fellowship opportunities, Birthday parties, family events.  But in the end it is worth it.  I was given a job to protect this child, to give her the very best life I can, I do believe that I am doing that.  While it is hard, there are so many blessings she brings.

I have had to watch friends distance themselves from me because our lives are too different.  Yes, my entire life changed, I changed, but it is hard to watch "friends" come and go.  They go on with their life, while I am here, sitting rocking a child, going to multiple doctors appointments, trying to figure out what is wrong with my child.  It is really a feeling of isolation.  I have made some super new friendships, but I miss some of my old ones.  People who use to call me and ask to do something, who hardly look at me in passing.  My heart aches.  I didn't ask for this, this is the path I was given.  I will live it to the fullest and if you are not suppose to be part of it, then I will accept it.  It does not mean that it does not hurt me.

All of our "extra" financial resources have gone to pay for gas to get Lydia to and from doctor visits, to pay for extra supplements, drinks that are not covered by insurance and I can continue naming.  Eric has had to take many days unpaid, just so there is sometime to use for actual vacation time with the other girls.  There has been family who has stepped up to help us big time, and we are so grateful.  But it does suck, your financial resources are drained and you feel like a constant charity case with your family.  We did plan financially for the our third kid, but never in a million years did we expect this.  And having to tell your girls that the pool is no longer good, something they look forward to each year was a hard reality of that financial issue that many families face who have a medically challenged child.  The pool liner did not make it through the winter months, and we just are not able to afford another one, so we had to tell them no.  I am sure there will be many more things like that too.  However, it is never gets easier.  I feel like those girls have been robbed of so much, it just is hard to continue taking things away.  It is a struggle and it adds to all of the other mounting stress.  I know the girls are learning great lessons, they are seeing devotion and love like many never get to experience, but sometimes you would just like to say yes and give them something more.  However, God is a faithful provider and He will continue to provide.  None of us go without anything and we are grateful for that.  There is always a hot meal on the table, gas in our car to make it to the next appointment, clothes (and I might add choice of clothes), heat, warm bed, insurance, the doctor bills workable.  I am not trying to make a pity here by saying this, but simply stating a fact...it is hard.  That sin has worked its way in and I have believed that I deserve everything that the next person has.  But that is only a lie.  God has provided abundantly and I need to be thankful for that!

I see people post things of their kids doing different activities on Facebook.  Many of them the same age as Lydia.  She is no where near that.  While we are so excited about the accomplishments she does, where she has come from and where she is today, it still stings sometimes.  It is hard.  Sometimes, as much as I love our journey, love Lydia and would not trade her for ANYTHING, those broken dreams of having a child who has special needs are still there.  Every now and again those feelings creep in and get you in a way you were not expecting.  It is hard.  And please know that I don't wish her to be anything else, I am happy with her and our journey, but I am being honest about these thoughts that run in my head at times, this sin that consumes me.

The pain of watching your child go through medical procedure after medical procedure is hard.  The constant phone calls of trying to figure out what is wrong with your child with no answers.  Waking your child in the middle of the night to give them medicine to only have to make them cry, wretch, and gag to get it down.  The hours of consoling pain that you cannot find where it is coming from.  The hours that you spend teaching your child to accomplish something, when it took your other daughters only moments to figure out with no help at all.  The pain is real, the hurt is there, and sometimes it is just hard to say it is going to be alright.  I know God is there in all of it, I feel Him holding me.  But sometimes it just does not feel OK, yet that is when we must allow Him to pick us up and carry us.  He does, He has been carrying me for months now.

Sometimes just know that other people are not going to get it because it is your journey.  To always try to see God's Hand at work, and to be joyful over every moment, no matter how big or how small.  And sometimes just being honest, letting out all of those nasty feelings, is the best way to let go and let God.  It is the best way to understand that most of this is perfectly normal, as long as we don't allow ourselves to stay in that place.  While everyone tells me it is just a season, I understand, but sometimes that stings harder because there does not seem to be an end in sight.  Sometimes just listening and allowing someone to vent is the very best medicine!

Sometimes on this journey, no different from my other girls, it just gets hard.  So thank for listening, encouraging me, and just being there for me.  Those are the best things you can do for me!  I thank God for giving me this journey and allowing me to learn all of these great lessons!

Saturday, April 13, 2013

Have I?!?!?!

Have I always been open and inclusive of people different than me?  I am sure that I would have argued with you that it was.  I am sure that I would have said that I accepted all kinds of people and did not pass judgment, but really the only person I was fooling was myself.  If I am totally honest, and that is what I intend to do in this post so I can see it in black and white, my mind never really became open until that situation that I judged became my reality.  I feel that it is important for people to understand, but more importantly those of us walking a journey raising a differently-abled child!

I have walked by someone with a disability and thought man, I am sure glad that is not my fight.  I have heard of someone who was diagnosed with cancer and the road never seemed to go anywhere but in a circle for the family and now death was staring them in the face.  I have walked by a person in a wheelchair and thought I am glad I have sisters who are able to do "normal" things.  I have walked by someone having a melt down and thought, control your child, that is so rude.  I guess I am glad that other people are not in my head, there are not nice thoughts most of the time.

I am sure we have all had those thoughts.  We judge before we know the situation, before we understand what is going on, before we are able to be in those shoes walking their life.  How unfair is that?  I have had that tendency my whole life, but I need to fight against it.  I need to ask God to take my thoughts captive and be more loving towards everyone.  After all He created all of us for a purpose and a plan.  And I would say that it is not just a "disability" but anyone who does not look like me, does not act like me or does not think like me.  Yeah, pretty small population that I don't judge; mainly me and my family.

It may seem like I am being crude here, but I am just being honest.  I am sure that I am not the only person who, maybe out of fear, judged someone differently than me.  I was uneducated and never took the time to educate myself, to surround myself with people who are different than me.  For whatever reason I passed a judgment that was unfair.  I looked down on someone when I should have been lending my hand out.  I am sure someone can look at me and judge me just the same way.  I am far from a perfect person.  I have many more flaws than I do good points!  I am human, I am a sinner.

So I was blessed with Lydia.  We prayed for each of our children, we never found out boy or girl because it did not matter, we wanted a surprise.  We prayed for a healthy child, but never considered the "unhealthy" child.  When we found out that our baby may have Down syndrome, the shock came in.  However, after a day or so, we were excited.  We thought about how blessed we were.  We really did not care what the diagnosis was because we would love our child no matter what.  However, I think when we thought about a child with Downy syndrome; we never considered medical complications too.

We prayed and tried for a long time for our third child.  We got pregnant.  It was a mostly normal pregnancy until the end.  I did not smoke, I did not drink caffeine, I did not drink, I exercised, I took my prenatal vitamins.  I did everything the way I was suppose to.  The fact is, a disability does not discriminate against anyone trying to have a baby.  I strongly believe God gives us just what we need.  Many of us don't know we need someone who is different than us or different than our expectations until we unwrap that gift. 

The thing about life is there are no guarantees.  I realize we all wish we knew what the future holds, but really all we have is faith to cling to.  I have my hope in Jesus to carry me through each day.  He is the only thing that is for certain in this world of uncertainty.  I could get pregnant and lose the baby, I could have a perfectly healthy child, I could have a child with severe complications, I could have a child who has problems breathing.  I also could have a perfectly healthy baby to find out later in life that there are complications, a car accident, cancer, a sudden death. 

So what happens when that situation that you wished was not yours has now become your reality?  What happens when your entire life turns upside down because you love your child, because you would do ANYTHING for your child?  What happens when you have to lose everything to love your child, to take care of your child?  What happens when you are that parent standing there while your child is breaking down and other people are staring at you?  What happens when you are in the store and the little girl comes up to the cart and stares at your baby because they are on oxygen?  What happens when that situation that you never thought you would deal with is your new reality?

I realize that no one will know what it is like to walk in my shoes, other than me.  However, my point is that I thought that I was open minded and that I was accepting and inclusive.  But I wasn't.  I realize that now because of Lydia.  A whole new world has been open to me.  It is amazing how God works.  It is almost as a new level of love has been shown to me.  Not better, just different.  I understand better and I see differently.

And I have seen that on this journey.  I see the transformation of people who get to know Lydia, understand the medical side of things and see how their life is changed.  It is one of the greatest blessings that I get to be part of.  I can't describe it, but it is amazing.  That is just one small part of this amazing journey.  Fear, sadness, grief, anger, love, confusion, guilt are some of the emotions that were standing in my way of realizing this huge blessing.  By educating and surrounding myself with people who are not me, I get to enjoy this journey God has placed me on.  I get to learn and grow and most importantly I get to be a mom to one very amazing child and two other girls who are so much better because of her.  They get it, they are learning things that cannot be taught, but must be experienced.

I wanted to remind you that a disability does not discriminate against people.  No one is "safe" from having a child with some kind of complication; either at birth or some where in life.  However, we can discriminate against the person because they are different, because we don't understand.  Ask yourself the question, "Have I?"  Make sure to do something about it if you don't like your answer!

Tuesday, April 9, 2013


I am currently doing a Bible study on being grateful.  I sure have a long way to be grateful as Jesus calls me to, I have learned that it is about conditioning the heart, training my heart to be grateful in everything.  After all, Jesus died for me, I did not deserve it (still don't), so no matter how bad things get, I ALWAYS have something to be thankful for. 

Lately, Lydia has been waking during the night.  Normally she sleeps right through the night.  She has always been a great sleeper.  However she has not been feeling well so we usually are up with her.  At our Bible study the other day we talked about being thankful at all times of the day.  So this morning when she started crying, I woke up and started grumbling.  Then I remembered to be thankful, this is another time that I can give thanks to God.  I did.  It was amazing.  I want to share with you my "whispers" from my daughter and what it teaches me in life.  What another great blessing she has taught me!

This morning you woke and started whispering to me in your cute soft cry.  I picked you up out of your crib and you hugged me tight.  You cooed and smiled all the way down the stairs.  Your little hand started to sign milk.  You drank and drank until your little tummy was full.  You sat on my lap and smiled and melted my heart.

You are always whispering things to me, but often times I miss it.  I am too busy with life or I am too concerned about you eating or what I have to get done around the house.  But this morning, you had my attention, you were pulling at my heart strings. 

You whisper to me in many different ways.  You always have a story to tell.  Sometimes it is with your sweet soft cry, or a huge vicious cry.  Sometimes you take your hands and run them through my hair and whisper to me.  Sometimes you hug me and pat my shoulder ever so gently.  Your smile can tell a thousand words to make any one's mood change.  Your pouty face is enough to make the sourest faces turn to a laugh.  You have so many expressions and each one of them whispers to me.

This morning as the soft gentle light was shining on your face, you smiled with such delight.  You were whispering to me, "Mommy I know it is early, but I just wanted to hang out with you.  I wanted to see you and smile to you.  I wanted you to sing to me and tell me stories."  Your face spoke a thousand words to me.  The smile you gave me told me everything was going to be OK.

As you turned to hug me, I know that you felt the stress in mommy's body.  You patted my shoulder and I knew everything was going to be OK.  I know you are not fretting or worrying, I know you are trusting and walking the path God has laid before you without any hesitation.  Your pat reminded me how faithful your love is and how I need to be better at that.  Your pat reminded me that I need to be stronger for you.

You started to sing to me.  You have a very pretty voice and all kinds of things to say.  You were singing the Psalms I believe!  You were rejoicing and getting me to sing along with you.  You have a way to make even the saddest people realize the joy they have in this world.  You have a gift that whispers right to my heart, to look at the world through your eyes, non judgemental, just with a pure heart.

You reached your cute small hand up to my head and started to twirl my hair.  You were starting to get sleepy, but you wanted to make sure mommy was OK.  You were playing with my hair, eyes fading in and out, and you were talking; telling me how much you loved me.  You would nod and smile and then you would open one eye to make sure I was still looking at your precious face.  You were whispering to me and telling me to keep the faith, to keep pressing on.  You were reminding me of these great silent moments where you just whisper to my heart!  I often over look them, but I am blessed that you keep reminding me about them.

As you nuzzled in to sleep, you were singing and talking to me.  You were telling me of your hopes and dreams.  You were telling me of what you endured and how much better you are because of everything you went through.  You were thankful that you have a great story to tell others.  You were whispering to me about what you would accomplish in life.  How you would keep surprising everyone and keeping everyone on their toes.  You whispered into my ear well beyond when you were fast asleep.

When you woke, you had a smile on your face.  You were still whispering to me your dreams.  I pray for you precious baby, God has His hand on you and you have already done great things.  I am so excited to see what else He has in store for you.

I realized at that point about how blessed I truly am.  There is a love, a pure joy there that is so much different from my other children.  There is a purity that cannot be stained.  There is a sense of complete love, the kind of love that can only come from our Father.  There is an innocence that is untouched and won't be lost.  She has something about her that I cannot describe, but it whispered so deeply to my hear that I am forever changed.

In quite moments of the mornings I think we learn so many important things.  For me, it was what she really means to me.  How much she really has changed my life, how blessed I am.  I needed that in more ways than one.  I have struggled with our path the good Lord has set before us.  We have had many trials and tribulations lately.  And through it all, she is constantly smiling, growing, learning, developing, and affecting every one she meets.

My words do no justice of what she means to me, the impact she has on my life.  But as I could have listed off a million and one reasons to complain and mumble this morning, she whispered to me life's greatest blessings! (what an impact it made on my day...it still was a very hard day; but so much better to start off with the whispers of her heart)

Thursday, April 4, 2013

Labeled in a Disposable Society

Have you noticed that they do not make things the way they use to?  My parents dishwasher is the original from when they bought the house, over 30 years ago.  It is starting to show some wear, but it has lasted a very long time.  It has withstood many different changes and it has proven itself!  Our refrigerator is 6 years old and it needs to be replaced.  When we called about getting it fixed, they said it is cheaper to just buy a new one.  They proceeded to tell me that they do not make things the way they use to.  They said they make things to "go bad" in a couple of years because the styles are constantly changing and people want the most current thing.

So that is the type of society that we have become?  The one who has enough money to replace non worn out things so we can have the latest and greatest?  We are the kind of society to just replace it instead of investing some time and energy to make it last, to bring out the best in it.  We are the kind of society that we don't wan to stick with something too long in fear that we will have something "out dated."  We don't want to commit to something, we don't want to work at things and our society, in general, seems to not want to invest in something simply because that is the right thing to do.  Often times we want more, we want something out of it.

It actually disgusts me.  I really wish this was one thing that did not change.  As much as I never liked the fact that my mom's towels would not wear out when I was growing up, and we always had to have the same ugly green and orange towel; I miss that now that I am a mom.  As much as it is hard to teach your children the value of something or the value of working at something, it is something that has become a lost art in a world that has become so disposable.  We cannot even commit to Tupperware anymore, we have this cool thing called glad ware that we can just throw it away when it gets old or we forget it some where.  (I actually like it, but you get my point!)

What happens when you are labeled in a society that is so disposable?  What happens when you are not the cool thing in a society that tends to be so picky and choosy?  What happens when you are someone who needs some extra attention?  What happens when you cannot be just replaced or thrown out, but you need love and a little "elbow grease" to fully show your potential?  What happens to these folks?

I have to say that our society now does a great job at trying to include and mainstream folks with disabilities than they did before.  Often times folks with disabilities were institutionalized (I know some still feel that way, we had a doctor who recommended doing that with Lydia), or "locked-up."  The stigma with having a child who had a disability in "old times" was not looked on favorably by society.  Today it seems normal, we celebrate awareness days and months.  So probs to our generation that has accepted or at least has made more awareness for disabilities.

However, what I fear is what we are currently seeing or a strong trend towards eliminating things based on wrong perceptions.  Prenatal testing seems to be a hot topic.  However, if we do prenatal testing to make sure we are safe from Down syndrome or Trisomy 18/13, or other defects.  And if the test comes back positive instead of educating ourselves, we abort because we are scared, we do not believe that we are capable of this.  Or if we use prenatal testing for the soul purpose of gender or eye color or to pick and choose what we think we want, scares me.  We choose to abort and start over.  What about the belief that God created each of us unique and special.  So what happens when we test for the soul purpose of our choice?  We pick and choose what we think is important, even if we are uneducated by what it actually means.  (I am thinking about the case for Down Syndrome.  There seems to be a lot of myths people have with these kiddos.  Many people are uneducated and make a decision influenced by someone who has never interacted with a child who have Down syndrome.  Maybe the information they were given was outdated and no longer applies to Down syndrome.  As a mom who believed some of this stuff, I was shocked that most of the information was not accurate.)  We are doing things that I don't believe God ever intended us to do. 

Prenatal testing for the case of preparing yourself, getting therapies and meeting with doctors is a beautiful thing, in my opinion.  But to abort simply because of fear, a myth that someone put in your mind, the unknown, is devastating.  I think to have the information upfront is a good way to deal with some of the emotions.  However, I could not support it and it angers me to think that folks abort, kill a life, because of fear, little information, influenced by someone who had no place influencing them and the list could go on.  I just cannot support making a decision based on a label and then disposing of it to start over for something better.  It makes me sick.

Let me put another spin on it.  What if we all came with labels.  Mine might have said overweight teenager, liar, selfish defiant little brat towards mom.  I am glad that my mom chose to love me anyways, she helped shape and mold who I am today.  I think I was worth it.  I know my husband and my children would agree with that.  What if we could know the label of our children; murder, molester, cancer survivor, confined to a wheelchair after an accident, an adult who suffers from MS, a learning disability, an adult who discovers they have a rare disease?  The list could go on and no.  What if we knew ahead of time what life would have in store for us.  What role would that label play?  Would we still choose to love that person, or would we abort, walk away and choose to see what other kind of label we could get?  The problem with labels is that we all have them.  Some of the labels carry a bigger consequence, some are more accepted in society than others.  Are we less of a person because of our label?  Can a label accurately describe me?  Just because you meet someone with one label does that mean that everyone is like that then?  The questions are endless.  My point is that once we start putting labels on people, we start to walk a very dangerous line.  Again, where do we stop?  So why is having Downy syndrome or any other genetic defect that can be detected prenatally make it so horrible?  I understand the grief of not having a "normal" child, but why as a society do we think of something less?  What are we so afraid of?  I still have not been able to answer that question, and I walked through a lot of the same questions when we found out about Lydia.

So maybe I am being a little literal here, but really?  We want everything and we want it now.  We want it our way and we don't really care about anything else.  I think often times we close ourselves off to what could have been...what might be, for a growing opportunity.  We rob ourselves of some of the greatest blessings because we feel we know better.  I would argue that blessings come in all sorts of packages and we better be willing to open whatever package we get because we just never know.

And at what point are we satisfied?  At what point will that right "label" fit with our lifestyles?  It is the child who society says has everything, will marry well, have 2 1/2 kids, have a great job, be rich, have the white picket fence?  What is the right label?  How far are we willing to go to get that label?  And when will that "right" label not look good with our lifestyle and we will want to throw it away for the next newest, greatest thing?

What I am getting at, is we will never be satisfied when we have to choose ourselves.  See, we will keep longing for what the next person has.  We will keep wishing we did something different.  But if it is a surprise, if we are able to open that odd shaped package and experience all that it has to offer, I feel like we can be satisfied, that is what God intended for us because He knows us better than what we know ourselves.

I will be honest, our path with a child who has Down syndrome and many medical complications has been tough.  Just yesterday I wanted to give up, I felt like I did not have what it took to raise this child to face the complications of the day.  However, when she pulled herself up and looked at me with those gorgeous almond shaped eyes, my heart melted.  She has shown me a kind of love that I could have never imagined before.  I like to think that it is a love very similar to what God demonstrated to us by sending His One and Only Son, or what Christ did for us on the Cross, He gave His life for me.  She has a pure love, one that I have NEVER seen in all my 32 years of life here. 

I think back to the countless appointments, the frustrations, seeing her in pain, enduring yet another procedure, having someone tell me how far behind she is.  But I think to most of those relationships and how awesome they are.  I would not have those relationships if it were not for Lydia.  I would not have been able to be impacted by so many people if it were not for my daughter and her requirement to be at the doctors, in therapy, having another surgery.

I can only pray that she has affected all of those people as much as she has affected our family.  I look at our other daughters and think how blessed they are.  Yes, their life changed big time with Lydia came along, but they are such loving and caring girls because of it.  At this young age God is already using them and teaching them.  It is so amazing.  I can dwell on what I thought that they are/were missing. or I can bask in what God is teaching them and the wonderful young ladies they are.  They are learning things that most people will never learn in their entire lifetime...what a huge blessing for them!

It is not an easy path, it is very hard actually.  But it is one that I would not trade even a second of it.  It is tough to see your child in pain and endure procedure after procedure.  However, we all suffer in some way.  Maybe she won't have the emotional suffering like I did growing up.  Maybe she will be able to dodge that ball.  And if she doesn't I know she will be strong enough to handle it.  She is nothing short of a miracle, a hero.  She is a fighter and a warrior.  I am so proud to call her my daughter.  I am so glad that I knew this package was meant just for me and my family. 

I would like to think that every life is so special.  And even if your child's life was only meant for a moment here on earth, your child was special and made impact that no one else could have.  Those labels mean nothing in the scheme of things.  The labels scare and detract people from one of life's richest blessings.  And if my daughter's label meant that today she would die, I would do it all over again.  I would not trade any of those moments.

While some things are great as disposable items, a human life is not that.  While I enjoy labeling my file folders, a human life cannot have a label.  The label will NEVER accurately describe anyone.