Wednesday, August 21, 2013

We Interrupt Your Life For A Test

I have been reflecting a little lately.  Sometimes that is bad and sometimes it is good.  I have read past posts; something that I don't often do.  I usually write what is on my mind in hopes that one day I will be able to come back and look at it.  That is how I have done my journaling since this journey has started.  I try to be real and very honest.  So it hits me pretty hard when I read what I have wrote (also sometimes is am embarrassed by the sentence structure and words...but that is what happens when you do not proofread!).  It is a reality show in the making on a blog post or a caring bridge website!

The other day as I was walking and just spending some quiet time with God, it struck me as odd that a lot of times I am defending Lydia and her life.  I am making excuses or trying to plead with a total stranger as to why Lydia is the way that she is.  A lot of times the world is saying something and I am trying to defend Lydia from it, justify something, or prove her importance in some way.  It really saddens me that a lot of times society looks at her as a burden, as a drain on society.  I will not even get started on my soapbox of how wrong that is.  However, it opened my eyes to a whole new way of thinking.

I have said it before and I will continue to say it, Lydia is not a mistake.  Lydia was designed and created specifically for our family with a purpose in mind.  She is not junk or left overs.  I did nothing wrong to get Lydia.  I am not being punished because I have Lydia.  She is a new perspective on life.  She is a breath of fresh air.  She challenges me to learn.

So what if everyone had that perspective.  Entertain the thought for a second that she is a test of who I am, who my husband is, who our friends are, what our faith is, who our community says they are, who are schools are, who our family is, who her sisters are.  She was put here to "test" us to see if our love is real.  To see how we act in situations of stress and fear.

Don't get me wrong, I don't feel as though she is a test.  But I was thinking back to a quote about our character is defined by our actions in a struggle.  It is our actions that speak louder about what we feel and what we believe than our mouths.  So what does that say for families who welcome children and adults with special needs into their lives?  I would say that is an act of love, a sacrifice beyond oneself to demonstrate love for their neighbor.  Isn't that the GREATEST command that God gives us?

Backing up for one second.  My husband and I decide to get pregnant.  I have always said that I don't care if it is a boy or girl; just that the baby is healthy.  I NEVER once entertained the thought of actually having an unhealthy child.  It just does not happen to me; to my kind.  That sort of thing may be OK for that person or that person, but not me.  I take care of myself, I was fairly young when I had her, I ate what I should be eating, I biked 5 miles a day, I did not smoke, I did not drink, I drank a lot of water, I got plenty of rest, and I had two other healthy kids.  But an unhealthy child does not discriminate.  It is just as easy for me to have an unhealthy child as it is for the next mom.

But at that very moment when we found out that she was going to be unhealthy and have Down syndrome, I believe the first test started.  See, I said that I valued life, I said that I did not care what gender the child would be; we just wanted one to love and to hold and to try to give the best life possible to.  See, many fail this test.  They forget what they say.  They allow society and ugly rumors to get the best of them.

Fear is a HUGE part there.  Often times there is a doctor that is not supportive, there is a spouse that is not supportive, another family member.  See this chain that is starting to happen.  Are your actions supporting your words?  I would be that many people in that situation do not think of it as that....a test.  It is pretty easy to see.  I understand the new term to abortion is putting the baby to sleep, fooling yourself that you are better without that child.  Remember, it is a test...are you going to pass or fail?  Will you allow this test to interrupt your life?

Each passing moment with Lydia is a test.  But it is the same with my others.  I say I love and I say that I am a new creation in Jesus.  Am I living that?  Can people tell that about me?  I hope so.  I have not won a battle because I chose life for my daughter, that is the only logical choice. This test is a journey, it will last for a lifetime.  This test will not be over until you are in heaven.  This test will never go away, but rather I would challenge you that it would be a reminder of who you are and who you say you are.

See if I say I love my neighbor, I better act like it.  To end a life because it may be different than mine is not loving.  Love is a choice.  Love is a sacrifice.  And contrary to popular belief, I don't have to pamper and take care of myself in order to love.  It is not about what I receive but rather what I give.  Love is putting the other person in front of your own needs.  We don't do that too much in society these days.  Love is choosing every single day to love in the worst conditions.  Love will hurt.  I know that it hurt Jesus up on the cross for me. 

This test is something that does not go away, but allows me to demonstrate in a very powerful way my love, my ability to love.  Yes, I am going to fail at it.  I fail a thousand times a day, if not more.  But each time I fail, I learn.  If I was not failing, I am sure that I was not loving.  See, there are really no right or wrongs on this test, it is just proving to yourself who you are and what you are capable of doing.  It is proving that you should not listen to the lies of the world. 

If you are in a community where there are people who have Down syndrome, you constantly hear the opposite of what the overall stereotype is.  Like each flower is different, so is each child with Down syndrome or without.  There may be some things that can "classify" them into a group, but that will NEVER define them.  I am "classified" as many things, but that does not define me.  My husband is a Spoor and usually there are bad tempers associated with that.  While he did battle that for a long time, he overcame it and it does not define him.  That is not who he is but he still gets classified as that.  I am a woman I am suppose to wear make up and dress fancy and have my nails done.  That does not define me; I don't like doing that.  I prefer natural beauty.

I would further say that this test of having a child with Down syndrome or having a child with significant medical issues is no different that having a typical child.  My typical child is almost seven and still cannot eat neatly to save her soul.  Drives me crazy.  There must be something wrong with her!  We just have to work with her over and over and over.  She struggles.  It does not define her, it does not make her a bad person; but it is an area that she struggles with.  Somehow in a typical child it is easier to overlook that than in a child with a diagnosis.  Lydia eats much neater than my oldest girl.

I would say that this test that I am experiencing with Lydia is teaching me and allowing me to spread my wings.  It is allowing me to walk the talk that I am talking.  It allows me to see how my husband and children, Pastor, friends, family, community and neighbors are walking too.  It allows me to see how important love is to the people who surround me.

I think most times people fail at the beginning of this test when they listen to what the world says and they don't even try to experience what this journey has to offer.  I think most times people fail when they listen to what the world has to say and they constantly feel like they have to defend their son/daughter.  I think when you listen to things that are contrary to love, it is extremely hard to do well in this test. 

She may never be this or that, but that is not her path God designed for her.  She may never do what I had hoped she would do, but she is going to do exactly what Lydia should be doing.  I don't have to make an excuse for her, she has just as much right as I do.  We have allowed society to take over and trick us into failing the test.  We have listened to lies long enough that says she is not worthy, she is too much work, she is different, she will never be a productive member of society, she will drag you down.  It just is not true and it is not spoken in love.  No matter what, I am to love her and that means putting her needs before my own.

So what do I get?  Pure joy and bliss.  Last night I was exhausted, questioning if I could even go on.  Music came on and she started to dance and laugh and just enjoy that moment.  She got wrapped up in the moment and I totally forgot that I was exhausted.  I could not stop looking at her and just smiling.  She has a way to just melt your heart and take you captive in every single moment.  Yes, a different journey, yes an interruption to what I thought life would be like; but oh so very welcomed.  See in that moment that she was wrapped up in, she too forgot that the world told her she had a disability and she started to walk and dance.  It is amazing.  If you let down those boundaries the options are endless.  So I get blessing after is amazing.  And really, if I am loving as Christ loved me, it does not matter what I get!

This test is worth a thousand words.  This tests exposes a picture of your talk.  I hope mine is matching one another.  But I feel blessed that God knew I was strong enough to handle it.  He has blessed me beyond words, He has opened me up as a person and is making me who He wants me to be; just as He will do with Lydia.

I no longer need to defend Lydia's life and prove why she is here.  I need to simply continue to do my very best on this test.  I need to keep loving my neighbor as myself.  I need to keep making sacrifices and I need to keep putting others before me.  That is the true test of love.  Lydia is just as important as anyone else and I will no longer listen to what the world says she is not!

Thursday, August 15, 2013


Floods and swarms of emotions have over taken me recently.  I have blamed the fact that two of my girls will be entering school this year is the root cause for all of these unwanted emotions.  In four short days, it will be me and Lydia, alone, all day.  Tears fill my eyes when I think of it.  I am so excited to see Ellen and Allison take their wings and soar, but there is a selfishness in me saying I have failed them.  There is a voice saying that I have not been the mother to them that I needed to be.  There is a selfishness filling me saying I have failed horribly.
I think back to Ellen's first day of 4K and I do not remember it.  I remember that a parent badge still hung on my clothes; that is all that I had to show that I had a third child.  I remember my eyes being completely stained with tears because my other child lay in a hospital bed.  I could not nurse her, I could not even take care of her at that point.  That is what my mind was filled with, not the excitement and joy of watching my first born go to school.  I did not even do back to school shopping with her.  I sent her off to a school that I knew very little about, with families that I did not know, in a city we were unfamiliar with.  It really was looked at as an activity to keep her busy so we did not have to entertain her.  How horrible is that?
My memory is clouded with Lydia and my eyes were stained with tears only because of Lydia and her condition.  I feel like I have been robbed of that experience.  I feel like my children were forced to go to school instead of a choice.  I feel like I failed them.  I was not there for them as I had it in my mind that I would be.  The picture perfect send off was not there.  I may have been there in body, but my mind was constantly at the hospital or on Lydia.  I don't have that joyous send off.  I tried to be involved, but usually there was something dealing with Lydia that prevented it.  I wanted to be the involved parent, not the one that just sent them to school.  I didn't want them to be the one without the parent, but that was reality.  While I tried, I failed at it.
Lydia is once again struggling to eat.  I do believe it is mainly because of her teeth.  I do believe that she has gained the skill of knowing when she is hungry and eating when needed.  However, because of all of the troubles with eating, I have a hard time of letting go and seeing what she can do.  I feel like a failure because I can not do the simple task of feeding my child.  What kind of mother is not able to feed their child?  It is a taxing duty, it is a daily chore, it is simply a horrible feeling.  Being rejected time after time, but knowing how very important it is for her.  Feeling completely helpless just standing back and watching.  Knowing I can't force it, but want to feed her so bad.  Failing at a simple task of motherhood has left me feeling exhausted, a failure, and sometimes just unable to keep going.  That has lead me to feeling even more unwanted feelings.  It is a snowball effect.
I have to say that I have failed several times.  I would be a liar if I said that unkind words have not come out of my mouth, if actions that I have done have not been of a loving mother.  I would be fooling myself if I would say that I have handled it in a loving mother-like way.  Instead I have to say that I have been replaced with a giant monster, someone that I am ashamed of.  My other kids have seen me act that way.  Stress and anger, bitterness, and selfishness have gotten the best of me.  I have failed.  I have shown them how not to act.  I have ingrained some horrible traits into their minds, because their mom has not been able to function as a normal adult has.  I have said words that I am sure are etched in their mind that I would do anything to replace.  I have let the heat of the moment get the best of me and I know that I cannot change that.
I want to be able to lay my daughter in a bed and know that she is safe.  But that is not the case for Lydia.  I remember getting a crib ready for Ellen, picking out bedding and making sure everything was just so.  I remember laying Allison in a bed that her sister had been in.  I remember picking out new beds for both of the girls.  I remember preparing a bed for Lydia, perfectly by my bed.  She never got to sleep there.  We have never been able to have that experience with Lydia.  We can't even find something that she is safe in right now.  We are not able to afford a new bed, so we sit and wait on insurance to see if they can cover it.  In the mean time she is not sleeping well and neither are we.  What kind of mother cannot provide a bed for their child?  What kind of mother puts her child in an unsafe bed, knowing it is wrong, but knowing there is very little she can do?
I know that the list of failures is long. I know that there are several other things that I have failed my children on.  I know that as a mom, friend, wife, sister, daughter; I have failed miserably.  I wish there were many things I could redo, undo, and have another chance at.  I wish some people did not see me do some of the things so their picture of me was different.  I wish that I could have conducted myself in a better manner is many situations.  I wish that I could look back and not see so many failures.
But if I have learned one thing on this journey, is we need failures.  Through the failures we become who we are.  Each failure is a learning experience, an opportunity to learn who we are.  It is a chance to take those lessons we learned and start over.  I realize that they don't come without consequences that we must face; but it is a new chance with more learning power behind us!
While some of the failures are just that, each one comes with a lesson.  Some are harder to learn from than others, but a lesson nonetheless. 
I think one of the hardest things to accept and learn on this journey is I was not a failure in carrying Lydia.  I did not thing wrong to have a child with Down syndrome.  And each day presents itself with different lessons and learning experiences.  I need to embrace each one, do the very best that I can and move forward.
I will always see another mother breastfeeding and have a feeling of guilt.  But I need to stand proud knowing that I pumped for thirteen months and did everything that I could for my child.  It might not have been the conventional way, but I did it!  I did what she needed.  She had some high calorie, good stuff for as long as her body said she needed it.  I need to let that guilt pass and be proud of what I was able to accomplish. 
As time goes by it is easier and easier to push that image of what I thought, what I expected, the image of what I thought should be; and totally accept what is, the path that God has written for me.  Those feelings of guilt, loss, an experience of feeling robbed because I did not get what I had pictured, will ease with time, will get better as I learn from my failures.  They will pass easier when I see that I can learn from my failures, that I need to have the failures in order to be the person that I should be.  I need to fail to be a better mom, wife, sister, friend, daughter.
Looking past that picture and what I have is where I need to concentrate.  I may have sent my child to school to keep her busy, in a place that we did not know.  However, that place became a family for us.  We made some awesome friendships.  That community accepted us with open arms and did so much for us.  They supported us during a time when we could hardly stand.  There was always someone there with arms ready to give me a hug, a Kleenex to wash my tear-filled eyes, an ear to listen, a helping hand.  It was one of the most amazing things I have been able to be apart of (well one of the many amazing things).  God wrote that perfectly for our family.  So while I can look at it in one way as a huge failure, I can see what a HUGE blessing it has been.  There is always two sides to the story.
I can look back on things and see failure, or I can see how our entire family has grown.  Yes, some of the failures are horrible ones.  Me not conducting myself in a manner that I should is never fun to admit.  However, I am getting better, I am making baby steps.  By talking with my children, being open about it, they can learn.  They realize that I am not perfect and I make mistakes.  They understand the importance of failing properly.  Hopefully they can be more forgiving of themselves than I have been.  They can fail more gracefully than I am.  But I am proud to say I am learning, I have not made those failures in vain.  With every good failure come a great learning opportunity.
So I am blessed to have failed so much!  It has come at a cost; both good and bad.
Some failures are not really failures too.  I am not failing because I cannot provide a bed for my child.  I am doing the very best I can.  I do believe, however, the system is failing my child.  I need to continue to advocate for her and push for what she needs.  I know, never seems fair, but those are the cards we have been dealt and we will deal with them in the very best way we are able to!

Friday, August 9, 2013

Parallel Experiences

Have you ever had an experience that scared you so bad you were not sure what to do?  Was there a path that was set out before you and you did whatever you could to change that path?  What if you could look at your life and see the parallel experiences, what if you could see how certain experiences have prepared you for the exact journey you are about to take?  What if you just took the plunge and experienced the journey despite the fears? 

In our lives, we often have things that are very alike.  We have experiences, trials, joys, hardships that are pretty similar.  I think often times we don't really realize it.  But each experience we encounter, I believe, we are asked to do one thing; to walk out in faith.  We are asked to trust and to do something that often times we are not comfortable with.  And it is only through that that we can truly experience the trial, the joy, the pain and suffering, or the happiness of every blessing.  And through that experience that is how we learn, how we grow, how we change into the people God wants us to be.

See, we are all born sinners.  When a lady at our church sees a baby, she says oh look at that cute little sinner.  That is true.  We question why little ones suffer, but they are no different than adults.  We are sinners because of the fall.  We all need Jesus and babies are no different.  While I do believe God has a special place for babies; they are cute little sinners!  Accepting this helped me to understand why Lydia had to endure so much pain.  Nothing is fair in this life, so it was not fair she had to endure it, but she is a sinner the same as me and she is not exempt from pain.  I know that God is in control and holding her.

The other thing that I had to come to realize and accept is my identity is in Christ and not this world.  See the world says so many things that just are not true.  So many of the things they say cause added stress and just are not worth believing.  The other night we dropped the girls off at VBS and a teacher asked if Lydia in her class.  She reminded me that Lydia is two now and she could be in that class.  WOW!  That was an eye opening experience.  Another little girl said no she is not two.  After looking at the rest of the class, I wondered too if she was really two.  She may not be where they are, she may not be where the world standard of a two year old should be, but I do believe that she is right where God wants her to be.  She is where God has designed her to be and her identity does not come from where the world standards says she should be.

So what does all this mean?  What am I trying to say?  I am not really sure.  As I was mowing yesterday, I was thinking back to some of my recent experiences and thinking about what it is like to have Lydia as a daughter.  She really is no different.  There are different experiences with her, but I have that with my other two.  Really when you boil it down, there are not many differences.  She is a baby who loves to snuggle and play, test my patience, get into things, explore, learn, grow.  She does most of these at her own pace, but she really is no difference.

My biggest hurdle though was to overcome the label that was put on her because of her diagnosis.  I had to over come a mental picture that was false.  She was not; just my picture.  I had to realize her identity in Christ.  I had to accept that this is the path God wants me on, and I need to bring honor and glory to Him.  And through it, I get to experience some of life's greatest blessings.

Let me try to explain myself.  Recently I was feeling anxious, like I needed to do something.  My friend kept coming to my mind.  She is a mother of six small children and she is fighting brain cancer.  They are struggling and I wanted to do something to help them.  We don't have a lot of financial resources to help and I felt that money may be one their biggest needs at the present time.  What was I able to do?

I kept fighting this anxiousness.  I did not want to be obedient.  I did not want to do this.  I knew that planning and organizing is my gift and God gave it to me to bring Him glory.  I knew what I wanted to do, but I did not want to do it.  I did not want to give up my time, I had a lot on my plate.  No one did something like that for us and there are things in my life that we are struggling with.  What about Lydia, she certainly would interfere some way (medical needs that would arise, bad days, not eating).  There was no way I had time.  OK....get it...lots of excuses and all very selfish.  It is hard to admit that those excuses crossed my mind, but they did.  I am a sinner, shamefully. 

And one day I decided to be obedient.  I decided to just take that leap of faith.  I could not deal with this restless feeling anymore.  In a matter of hours we had everything planned.  We had a date set, a place to have it, we decided on a breakfast and a bake off/silent auction.  I had other people to assist in the planning of it.  And like that we were off!

The days passed and my girls and I drove around town putting fliers up and talking with people asking for donations.  Before I knew it my girls were fighting over who would ask, who would hang up the flier.  You see, at that moment, without me realizing it, I was teaching my kids some VERY important lessons.  Ones they would have missed out if I would have not taken "the plunge" of being obedient and planning this benefit.

I met people whose kindness and generosity have changed me to the core.  Their willingness to help a stranger without even thinking was amazing.  I met people who went out of their way.  I saw how the story of this sweet family affected others and instantly they wanted to help.

I got the blessing of seeing others coming together to work for someone else.  I saw friendships form and new relationships formed.  I saw old connections strengthened.  I witnessed miracles right before my eyes.  God had His hand in every detail of that.

I saw Satin trying to destroy plans, to distract me and the other planning, but then I saw God honor that and do something even better.  It was one of the most amazing experiences that I have gotten to be part of.  I was not doing something for myself, no matter what sinful, selfishness self said.  I was able to serve, learn, experience, enjoy the blessings from above and none of it was for me, but maybe I benefitted the most.

We did not serve as many people as I thought we may have.  However, we made more than I ever thought was possible.  While final numbers are not in, the initial totals have totally overwhelmed me.  God is so amazing.  A family being benefited by the generosity of other people.  It started with one person who was being obedient to God, even though they kicked and fought it.

So how does that relate to Lydia and raising a child with special needs?  Can't you see all of the parelells there?  Most times, our world says to abort a child like Lydia.  They say she is not worth it.  They say she will take too much work.  They say she will cost too much.  However, I think that it completely wrong.  Yes, the journey will be different, but if we are obedient to God, we will be blessed beyond belief.  Because we are all sinners, yes there will be pain and suffering.  At times the road will almost seem unbearable.  However, the blessings will be beyond anything we could have ever imagine.

Once we are obedient to what God wants us to do, once we find our identity in Him, it is then we can start to experience life, start to enjoy the blessings and joy only He can fill us with.  Once we accept that the path is His and not ours, it does not matter if we end up in Holland or any where else.  We will be blessed and get to experience joy and pain in a different way.  There is nothing on this earth that I deserve, but because of Him dying on the cross and conquering death, I get to enjoy His grace, much more than what I deserve.

As most of the times, I had this story written so much differently in my head than what I am able to do on paper.  I hope that I made my point, I hope that you understand what I am trying to say.  Raising Lydia is an honor and I am blessed that I get to do that.  But raising her is a different path than Ellen and Allison, but a joy nonetheless.  See I can focus on what I am missing or I can relish in what I have.  Ellen may not be the hockey player that I had in my mind either, but she is going to be exactly who God wanted her to be.  Allison may not be the tomboy I wanted, but she is going to be who God wanted her to be.  Lydia may not be the tall basketball player that I wanted her to be, but God will make her exactly who she should be!

Maybe for me, it helps me to parallel these experiences to wipe out that distorted mental image, in order to fully accept where I am at.  This journey of raising Lydia is not really any different when I find my true identity and when I measure her identity to Christ and not this world.  We never will measure up to what this world is telling us and we will constantly feel like a failure.  Each time I go into a developmental appointment, that failure is there.  But when I understand that she is right where God wants her to be, I am proud, and I know that she is a special blessing and she will bloom when God wants her to.  She is Lydia and she will do it on her time.  Just as the fish will never climb a tree, I need to make sure that her expectations are accurate and not impossible but not limiting.  

Wednesday, August 7, 2013

The Picture Isn't Perfectly Painted

Today is one of those days for me.  Emotions are getting the best of me.  Usually on a day like today, I would stay away from the computer.  I don't like others to think that I am complaining, that I don't like the cards that I am dealt, that I am fishing for something, that I need something, that I am not able to take care of myself...  But today I thought I would write.  I thought that I would let my emotions take over.  I would try to expose that other side of living life in my journey.  I do try to be thankful for what I have, but sometimes it is OK to let it out; I am praying for good therapy here!

Breathe in breathe out.  I must remember that at times.  When we first started out on this journey I couldn't wrap my mind around what life would look like.  I could not picture what our new path would look like.  One think that I have found out; you never know what that path looks like, it constantly changes.  I have become accustom to changing and realizing that plans are just something that I would like to do, but Lydia will really determine what it is that we really do!  I am OK with that most times; but sometimes it is draining.  I feel bad for my other girls, but is it really bad?  I don't think it is, I think that it more a battle of being selfish.

One thing that I could not prepare myself for was the constant needing from a child.  I love the baby stage, but at times I am ready for a break.  I can't just have a babysitter come over and babysit her.  She needs specialized care and only sometimes is it safe to actually leave her.  Lately she has been getting more upset and it keeps reminding me that we are doing the right thing and I am going to just have to get use to it.  A child that has to constantly have an eye on.  She is not my other two year olds.  She is not independent.  She needs help doing things and she needs someone to monitor her.  I will miss it when it is not there, I will long for it and probably cry that no one needs me anymore.  I need to enjoy that instead of complain.  My mind drifts back to that picture that was painted in my head, and the images are not matching; but it is not really a bad thing....not even close.  It is me letting go!

She is just discovering her voice and she yells all of the time.  It makes my head hurt.  I love her, but I wish there was a way to channel that, to have her speak, to deal with the splitting headaches I get from her screaming.  Sometimes I walk in embarrassment through the grocery store as she screams.  She is not screaming out of control, she is just trying to speak.  I get it, but it does not mean that it is easy to deal with.  I love her for her, so I will find a way to deal with it; but the picture in my head keeps getting more and more distorted.  I need to change that image because she is my daughter and I would not change her for anything.

There are things with Lydia that I need to do a better job at accepting and just understanding that I am right where God wants me to be.  I am on the exactly journey, doing the exact thing that God wants me to.  I need to bring Him honor and glory in this too.  There are other decisions involving Lydia that don't match that picture either.  These are things that are just hard to accept.  Maybe because they deal with material things, and as much as I would like to say that they don't matter, they do.  I am a sinner and I fall short of what I know to be true and important.

I remember with Ellen we searched high and low for a crib for her.  We searched for the bedding that was just perfect.  When Allison came along, we had to move Ellen to a bigger bed and that search went on.  Allison was able to have the perfect bedding and crib that Ellen left to her.  I never thought anymore of that.  Then Lydia came along.  The bedding did not matter what it looked like but mattered if it was functional for her.  What was the best for her?  How could we keep her upright to keep her safe?  There were so many more questions in there, it was not simple and it still is not.

We originally decided on the nap nanny.  She has been in there since 2 months.  We have used that every single night.  Even when she came home, she was not able to sleep in her bassinet that was perfectly prepared for her arrival; it was not safe for her.  Recently we have noticed that she is growing so much that she is just about out of the nap nanny.  What do we do now?  Upon more research we realize that the nap nanny is no longer, you are not suppose to use it!  Ugh!

We found someone who would construct a custom bed for her.  However, that is very costly.  But where do you draw the line?  Where do you say that money is more important than what is best for your daughter?  There is one bed that may work, again it is very costly.  So we begin the process of getting the letter of medical necessity, the prescription and then starting to work with the insurance company to see if they will cover it.  But in the mean time, sleeping has become very hard for her because she is not in something safe.  I constantly worry about her at night.  Most nap and night times you can find her sleeping in her mommy or daddy's arms because she is upright.  Not a horrible thing, but during the day I do get frustrated because it prevents me from doing things.  I need to enjoy this moment, right where I am at.

Then there is insurance.  I really should not get on this topic today.  I spent over four hours on the phone with insurance and the hospital to get billing corrected.  Not to mention the amount of time that was spent two months ago, a month prior to that.  And it is the same story each time you call.  It is just one big game.  The insurance company tells me that the hospital is billing out wrong.  You aren't able to see the exact bill, so you just have to trust that they are telling you the right thing.  Then you talk to the hospital and they are doing it right of course.  So they tell you that there is nothing more that they can do.  They are doing everything that they are suppose to be doing and it is the insurance who is making the determination.  So if I was upset with it then I would need to talk to the insurance.  Just a game and I don't have time for games.  Who am I suppose to trust?  What am I suppose to do.  It is like they have you in a corner and you have to just pay...there are no rights for you.  GRRRRR. 

Lydia has been getting more and more upset.  We have learned that we are not able to allow her to get upset, or try to calm her as quickly as we can.  If we can't, bad things happen.  We ended up in the ER the other day because she was upset, choked, irritated her connection site, was too stressed and maybe had a virus or was teething on top of it.  So we do our best to help her out.  We do our best to be as observant to her needs and respond as quickly as possible.  God gave her to us for a reason.  So even if I feel like I am being too over protective or whatever else, I know that I am right where God wants me to be.

As I just vented; there are so many things that I am learning.  Lately in the news there was a new finding that they can turn off Down syndrome.  I would not change her for anything, she simply would not be herself.  The good far out weight the bad, no matter how bad it is.  Because I need to constantly take care of her I have learned how to be more compassionate, more patient (I have a very long way to go there, but I am surprised at how very little patients I had before), I have learned how to articulate my feelings/wants/needs to others, I have learned how to manage under pressure and stress which are constant, I have learned the lesson of persistence, I have learned the lesson of respect, I have learned how to treat people with respect even in really bad situations, I have learned how to love when all I really want to do is think about myself, I have learned how to serve others before myself.  The list could go on with the things that I have learned, with how Lydia has changed me.

At the end of the day, I long to be like her.  When I was a complete wreck today, crying and feeling sorry for myself, she was there with a HUGE grin on her face and a hug to wipe all my tears away.  She has a connection with people that we all should envy.  She has a way of loving, breaking down walls, making people feel important, even when she is so misunderstood in society. 

That picture may not be perfectly painted.  That picture may be very distorted.  That picture may have looked completely different in my mind than what it looks like on paper.  But that picture that is being painted is prettier than anything I have ever seen.  The picture keeps changing; things being added and things being erased.  There are lessons that are being learned and new color combinations that are being tried.  The picture is better than ever imagined and I am the blessed one who gets to admire that picture day in and day out.  So I can chose to focus on the little imperfections or I can stand back and admire the majesty of it all.

Sometimes, however, it feels good just to vent.  It is a hard road that requires many people to help.  It is a hard journey, but I would not change it for anything.  Thanks for allowing me to vent.  And I do really love her, my life, our journey EXACTLY the way it is.