Thursday, October 31, 2013

Last Day of Lessons Learned from Lydibug! Day 31

Well, October has come and is almost gone.  It has been fun writing down the lessons that Lydia has taught me.  I am a better person because of her.  However, the most valuable lesson that I learned this month was from a lady who chose not to look beyond a physical difference, a lady who chose to stay in a world where she closes herself off to learn some of the greatest lessons and experience some of the best blessings.  I can write today and say I am thankful for that experience.  While the words still sting and I will never quite understand what would lead a person to say something so horrible out loud, I appreciate her teaching me lessons too.

Just because October is almost gone does not mean that the job of spreading awareness stops.  As I was taught by this lady, there is still much work to be done.  Showing people that folks like Lydia are much more alike than different.  If we could all accept each other like children do to one another, life would be grand.  I had the opportunity to talk to a classroom of 3, 4, and 5th graders.  They were able to ask questions and I educated them about Lydia.  The learned, they asked their questions, and they faced their fears of the what ifs.  Every morning I drop my children at school, every one of those students line up to give Lydia a hug, to pick her up, to get "knucks" or a high five.  Lydia walks those halls like she owns them making sure to say hi to everyone.  That would be the picture perfect place.  Since it is not, we need to continue to spread the awareness!

A recap of the lessons Lydia has taught me.....
*The power of prayer is an amazing thing.  This is our life line to God who makes all things possible.
*When the situation is tough, turn up the music and dance like no one is watching.
*Having faith in God is our true foundation; without that we are just on sinking sand.
*Love is a sacrifice, love is a choice; love is not just a feeling.
*Lydia has unleashed a passion in my for creating awareness for Down syndrome.
*Giving is super important and giving beyond yourself is even better.
*I am to be an active and involved parent.
*SLOW DOWN and RELAX!
*Lydia has taught me how to have courage, even when the mountain seems too high to climb.
*Be comfortable in the skin you have, no matter what it may look like.
*Be informed, ask questions and think more objectively.
*Fears should not dictate our decisions; we need to face them head on.
*Determination....never give up!
*Small moments are a huge thing; learn to appreciate them!
*Remember what you prayed for and savor those moments; no matter how long/short they may be!
*True contentment!
*Judgment is a terrible thing.
*Sacrifice is a joyful thing.
*Joy does not mean happy all the time, rather it is a way of life.
*Think outside the box.
*Big or small, able or differently-able, we all have an important place.
*Value each relationship.
*There is still a lot of awareness that needs to be done, so keep on spreading the word!
*Take the high road, especially in difficult situations.
*There is always room for improvement in yourself, never settle.
*A smile has amazing power!
*The word possible says I'm possible!
*Imperfections are a blessing and they are perfect!
*Encourage one another.

There are many more lessons that she has taught me and that she will continue to teach me along the way.  I am constantly growing and becoming more of the person that God wants me to be.  I am so blessed to be on this journey.  Thank you for taking a moment to read the lessons that Lydia has taught me.  Enjoy the pictures.  A picture says it all...she is worth a million words, a million smiles, a million hugs, a million prayers!  She has a lot of value and she belongs in our family!











































Wednesday, October 30, 2013

Lessons Learned From Lydibug Day 30

I can't believe that it is the end of the month almost!  There are still so many lessons that she has taught me, but I believe she will continue to teach me daily.  She is such a blessing.  Today will be the last lesson that I am sharing.  Tomorrow I thought it would be fun to a do a recap of all of the lessons from this month as well as share a lot of photos of our little Lydibug!  Thank you again for reading and encouraging.  I love to write, even though I am not so good at it (I don't reread so often times there are a lot of grammatical errors and incomplete thoughts...so sorry) but it is fun to see that people actually read what I write!  Thanks!

Lydia has taught me the importance of encouragement.  I know funny because she does not yet talk so how can she encourage?  However, she communicates very well with her body and expressions.  You always know what is going on with her.  Lately she has been trying to communicate by mouth and I wish she would do far less of it because she seems to yell and grunt all of the time.  Mommy's ears could use a little bit of a break!  But she is a great encourager.

Right before someone is leaving in our house, Lydia picks up on it.  She realizes they are grabbing their keys or putting their shoes on or jacket on.  Whatever she is doing she will walk over to the door and give them a hug.  If for some reason it is not a hug she will start waving goodbye.  And they always get a smile to leave the house with. 

When one of her sisters gets hurts she always is there for a hug to them.  She pats them on the back and tells them it will be OK.  Before we go to bed she always has to give everyone a hug.  She is good at giving strangers hugs and waving at them in the store.  It always seems like it is someone who needs it too!  She always seems to know just the person or the time to send a hug or a smile to in order to be a pick-me-up to their day.

In just watching her interact with people you understand the importance of encouragement.  Because of this, I try to encourage those around me as well.  Because I am an adult, and hugs and smiles just are not as cute coming from me, it usually is in the form of a note or something.  It may take a little more time, but is so worth the effort.  I also like when people leave me encouraging thoughts, Bible verses, or comments on here or our caring bridge site and I think that maybe someone would like that.

The other day we received a box of cookies.  I had no idea where they were from or who sent them.  There was one sticker on there that read Sunflour Confections.  The return address was from TX.  Who do I know in TX and why would they be sending cookies?  Upon a little more investigating I discovered that it was part of the Icing Smiles organization.  Icing Smiles is a nonprofit organization that provides cakes to those children battling medical problems.  We had a sugar angel this year for Lydia's 2nd Birthday and she did the most amazing cake.

Well, I wrote them a thank you, both our new sugar angel and Icing Smiles to let them know that I really needed that pick me up.  (I have been a little blue and struggling a bit after last week and those unkind words!)  After sending the thank you note, I realized how important it is to say thank you, encourage others, and share your story.  Someone else also needed to be encouraged by someone sharing their story.  It is amazing the impact you can have on someone else when you take a moment to encourage, say thank you, or share your story.

Once again, lesson learned.  This has been a fun lesson.  In the hospital I wrote a thank you note to every nurse who cared for Lydia.  I wrote a note to every doctor who helped us out.  It was a small way to let them know that I appreciated what they did.  It was very therapeutic for me as well.  This is a lesson that I have learned and tried to apply as much as possible.  It is so important for us to encourage those around us.  It changes a whole day when I know others are praying for me, for our family, for Lydia.  Who will you encourage today?

Tuesday, October 29, 2013

Lessons Learned from Lydibug Day 29

Imperfections are a blessing.
Imperfections are perfect.
Imperfections are wonderful.
Imperfections are teaching moments.
Imperfections are part of us all.

Lydia has taught me about imperfections and mainly mine.  See when I first learned that I was carrying a child with Down syndrome, my mind could only wrap itself around all of the imperfections that I read about.  The possibility of low lying ears, slanted eyes, low muscle tone, cognitive delays and the list goes on.  I read about the increased risk to many more medical issues.  My mind could not get past her imperfections she may have.

As I sit here now writing this I just think about how silly that is.  I think about what if my husband could not look past MY imperfections?  What if he only saw an overweight woman who has thinning hair, a huge scare on her forehead, a huge beauty mark on her face, a birth mark that takes up the entire side of her leg, THUNDER THIGHS, cottage cheese legs, and the list goes on.  So that is probably more than you needed to know; but hopefully you get my point.  What if he could not look past my short comings as a person.  Someone who use to have tendencies to lie, someone who was completely and utterly selfish, someone who let money direct her life, someone who was not very kind because she put herself first all of the time, someone who was critical of everyone else, and the list goes on and on.  What if he could not look past the fact that I detest feet, that I am terrified of heights or that I like to eat sweets.

Take a breath, that was a bit of an honest look at myself and I am horrified by it.  I am not a perfect person; not even close.  I have so many imperfections it is scary.  But my husband chose me to look past those and love me anyways.  I am sure I am not an easy person to love (bless his heart) but together we make a team, together we can overcome any hurdle.  Love is a choice and he chose to look past those imperfections.

I look at Lydia's imperfections and those are the things I am completely in love with.  I love how flexible she is.  She can get herself into the most unusual positions and it is cute.  I love the look of her eyes; especially when she rolls them (remind me of this when she is 15).  I love how her belly tells a BEAUTIFUL story of her life.  I love the sweetness of her personality and how she looks through life.  I love her, all of her imperfections.

See, the extra weight that I carry is still from growing and birthing three children.  The last put a little more stress on my body and then in my life and I still have not had the opportunity to work on getting that off.  The thunder thighs is something that I was blessed with along with the cottage cheese.  That is who I am, how I was made.  I do not let that stand in my way.  I try to be healthy and stay active, but that will not hinder me by any means!  Just like Lydia's slanted eyes or one crease on her hand or her low muscle tone.  None of that will slow her down or get in her way...that is just how she was created.

She may be a little slower at learning things than the other kids, but there are certainly other things that she is not slow at catching onto!  She has figured out how to be sassy and silly just like her sisters.  She has figured out that whining may or may not get her things.  She has figured out how to walk and get into EVERYTHING.  These experiences and things make her who she is, they complete her character.  She is a blessing.

As I reflect on the list of who I am, my imperfections it is long and really quite embarrassing.  However, a lot of things that I use to be have been changed because of Lydia.  A lot of things that I have not been proud that it was part of me, my daughter Lydia has taught me lessons and the importance of being a better person. 

Imperfect some may say, a better place without her, a simpler life for her family if she had not been born.  To me, when I put it in black and white, I would be very sad if I was the same person I was before Lydia, I bet the world is happy too that she came along to make her mom a better person.  Sometimes we need other people's imperfections in our lives to make us realize our own imperfections. 

Celebrate your imperfections, be proud of the person you are.  The words that were spoken at the Down syndrome Awareness Walk this year are still etched in my mind.  The ambassador that spoke was so proud of who he was, he was happy with the person God created him to be.  He knew there were things that he struggled with, but he was OK with that, he was going to try even harder to make sure that he too could accomplish that.  He knew his strengths, where he excelled and he knew his weaknesses too.  It balanced him and completed him as a person.  Simply beautiful to me.

All of Lydia's so called imperfections make her who she is.  All of her imperfections make me a better mom and a stronger person.  She has changed me in some very profound ways.  I am going to try really hard for my imperfections to be something I am not embarrassed of, but proud of because they make me, me. 

We all are imperfect in some way, shape or form.  She is no different there.  What she has, however, is an amazing outlook on her imperfections.  How she carries herself and what she does with those imperfections is what sets her apart.  She is a blessing in disguise and I am honored to be her mom. 

What will you chose to do with your imperfections?  I am glad that my husband looked beyond those imperfections and chose me and decided to love me anyways.  Because of that love we have been blessed with Lydia.  Because of that we have been taught many valuable lessons.

Monday, October 28, 2013

Lessons Learned from Lydibug Day 28

Lydia has taught me that in the word impossible it really spells I'm possible.  Despite what others may say aloud (even if you can't believe that they would really say that), what others will think, how they will judge, or what the silent stares may say....Lydia has done far more than what I will ever accomplish and more than what most others will do in a lifetime.  Lydia has defied life itself with fighting constantly to be where she is today, she has overcome stereotype after stereotype just by being who she was created to be and she continues to teach me and those around her about themselves and life.  She is simply amazing and she is possible.

With each task for her it may seem like she can't.  However, she will work and she will fight until she can accomplish it.  For someone else it may not even seem like a big deal, it may not even seem like a task; for Lydia it may be a mountain, it may seem impossible, but she too will climb it when she is ready, she will accomplish it on her own time.  She may fall a couple hundred times, she may lose her footings more than a time or two, she may get caught in the elements, but she will never give up.  She constantly picks herself up and keeps going.  She is on no time schedule, she is not comparing herself to anyone or anything else, she is not meeting a deadline, and often times she really does not matter what it takes to do it.  She does not care how she looks she does not even care what others thinks.  She focus in on her task and does what it takes until it is complete.  She is possible and she teaches others how to think they are possible too.

When I think that I can't climb this next mountain that is staring me in the face, when I think that I am completely exhausted, I think of Lydia.  With each task she has accomplished, with each new milestone, it did not matter how many people said that she could not do it, how long it took, how many times she failed; she never gave up.  She kept at it until she could do it.  That is what I call inspiration.  That is what I call complete victory.  That is what I call worth.

She sees life through an entirely different lens.  Some may say it is distorted, it has no value, it is worthless, it is R****ted; I call it beautiful.  I wish I had that same lens.  She may never accomplish some of the things that her sisters accomplish, however, they will never accomplish what Lydia accomplishes either.  See we can look with a judging lens over her and try to discourage her, but that still will not keep her down.  We can look at her with an open lens and try to encourage her and see how much she amazes us.  If any child is look at with "I'm Possible" every child can flourish...she is no different.

Lydia is content with her lens, with who she is, her accomplishments, her talents, her abilities, with how God created her.  She does not want to change that, she wants to share with you who she is, what she is able to do, and laugh with you.  She wants to know you and create a friendship with you.  I am trying to learn from this, I am trying to be more like that, however, I would LOVE to see the world through her lens, so pure and untainted. 

I am so blessed to have Lydia in my life and continually teach me how to be better, how to live life being content just the way you are.  I am so blessed that she is patient and kind and willing to share her gifts she was given so freely.  I am so blessed, even on those days that it is hard.  The impossible always will be I'm possible no matter what.  The impossible will always be possible when I am working hard.  Thanks Lydia for another very valuable lesson.  It looks like mom has a lot of work ahead of her implementing all of these valuable lessons.

Lessons Learned from Lydibug Day 27

I was completely exhausted from vacation last night to write, so I am catching up this morning.  One lesson that I need to remember over and over is that simple is better.  I always find myself over complicating things and then they never turn out how I want them to anyways.  I get frustrated when I plan a big old fun day to find that the girls only wanted to play in the dirt.  I ruin the memories because my ego has been bruised.

Lydia keeps teaching me this every single day.  It is not about the toys, but the boxes they come in that are so much fun.  It is not about the big vacation that we can go on, but about the number of outdoor play sets we can find to play on.  I am still caught up in the dream life that we have to have bigger and more for it to be better. 

Just getting back from vacation and I am learning this over again!  I am drowning my sorrows of not being able to do this or that because a certain child does not travel well.  I am grieving the fact that we may never get to do this or that.  But what I am forgetting is the memories that we made.  The fun that we had and the time that we were able to share...no matter what we were or were not able to do.

See Lydia nor the other girls really care what we do or where we go.  We were able to stay in a motel.  That means that they were able to watch TV (we don't have that at home) and make forts and it was a new place to explore.  They were able to eat donuts for breakfast and snack all day long.  It meant that we were able to go to places that we had not been to before and visit a good friend's shop.  It meant that we were able to play on new playground equipment and go hiking through the woods.  When asked what the best part of the trip was "It was just spending time with my family."

I get so caught up in the big and the better part of life and I miss out on the small moments.  Bigger is not better.  I don't know if the same goes for your family, but after what our family has been through, bigger is not better.  Those nights of putting our Pj's on early and snuggling together on the couch to watch a movie, it is then that I see the biggest smiles on their faces.

Lydia reminds us over and over that she loves her home and she does much better at home than she does anywhere else.  Our house is not big and it is not fancy, but it is safe and comfortable.  It is what she knows as home.  It does not have to be big or fancy but it does have to have her sisters there and her parents.  It does have to be safe and comfortable, simple just as she knows it.

I am battling this lesson on so many levels, but when I learn, I will find joy and peace like all my girls have.  They make the best out of any situation, they are content in the small things, and bigger is NOT better for them.  See, to have the simple things around; love, family, friends, a feeling of security.  I would have thought that I would have learned this after everything we have been through, but I battle this one.  Simple is the best.  Family means I am rich.  Happiness is having that sense of security. 

Once again I need to be reminded of this simple but profound lesson that less is more, simple is better and big is not always the best.  Being together as a family, having each other's love and presence is the most important thing for them and us.  Thank you Lydia for reminding me and I am sorry, but you are going to have to teach this one to me over and over again!  One day, I hope, I will understand this critical lesson just as well as you do!

Saturday, October 26, 2013

Lessons Learned from Lydibug Day 26

As the days go by I am struggling to continue to explain why Lydia makes me better.  There is lesson after lesson that I have learned from her and as I am happy to share them, sometimes I feel like a lot of the lessons are very similar, yet very different.  Sometimes I feel like I am repeating myself.  But I cannot help but try to encourage someone who just found out that their baby may have a little something extra, to try to help others see that Lydia is more alike that different.  However, it is not up to me to change people's minds, they have to do it for themselves.  And the only way to really do that is to surround yourself with people who are different than you.

I remember that it was scary learning that our child was different.  And the only reason that she had the label of different is because society is trying to lump all of these beautifully created people into one category when they really can't.  There are trends and risks for people who are extra special, but my other children have that too....there just is not a HUGE spot light that creates attention.

I guess what I am trying to say is that because I was vulnerable, I opened myself up to a new experience, a new challenge, I have been blessed.  Because I said yes I will love you unconditionally for who you were created to be I have been blessed beyond my comprehension.  However, you must first get to the point that you are willing to expose yourself in such a way.

If I look at it like that, I cannot expect others to fully understand the goodness of Lydia until they want to open themselves up and experience the blessings.  PreLydia days I probably was not so open to people who looked different, acted in a different way, looked a little different.  I probably saw a child acting out and thought that they were not properly disciplined instead of now I am more open to the possibility of something else.  I think if we are all honest with ourselves we would have to admit that.

I am blessed because I said yes.  She has taught me stuff beyond what I thought was possible.  However, I am in a teachable place because I did say yes!  That is a great spot to be in and I pray that I am able to stay here.  God is using me and growing me because I am open to that.  Lydia has taught me that just because she was born.  I hope that makes sense.  But we were given that choice (there was no choice for us because I do not believe in abortion and that would never be an issue for our family no matter what) when we found out that there may be something different with our baby.  At that very moment I was teachable and I have been learning lessons about myself and life ever since then. 

Thank you Lydia for showing me a whole new path in life, for allowing me to look at a circumstance through much different eyes.  Thank you for allowing me to be a better person and constantly growing.

Friday, October 25, 2013

Lessons Learned from Lydibug Day 25

The power of a smile.  I never realized the power of a smile until I had Lydia.  While I LOVED when my other children smiled, it never had quite the impact of Lydia's smile.  I think there are several reasons for this.

One, when Lydia smiles, she uses her entire face.  Her smile can be seen in the darkness from anywhere.  It is amazing how much her smile lights up.  She smiles with her eyes, her nose, her cheek bones, her forehead, her eyebrows, her ears...her entire face lights up. 

She feeds off of other people.  As soon as she sees someone she just lights up.  And it is not half heartily, but she does it with all of her being.  She makes sure the person is look and flashes that cheese ball smile that you can't help but fall in love with.

To me her smile means that she has survived.  I have watched her endure so much.  She has battled through surgery after surgery, she has been dead and alive in the same moments, she constantly had people poking and prodding and her, she was always made to do something that she did not want to do.  She has overcome that and not just survived, but she has a BEAUTIFUL smile on her face too.  She is proud of that and she can smile about it.  It is not a smile that holds grudges because she feels sorry that she had to endure everything, not a smile that is holding back because she thinks that she is of less worth; but a smile that radiates confidence and self pride.  A smile that was created to light up the lives of those around her.

I am told often that people could just look at her smile and it can turn their day around.  People have asked me if I will just bring her by their office so she can put them in a good mood.  To be able to have that much of an impact on people's lives is simply amazing.

I am blessed to have that smile around me every second of the day.  I usually don't take it for granted either.  I usually can't help but smile back at her and hug her.  Something about that smile that takes my breath way.  Something about that smile that is simply amazing.  Something about that smile that is nothing more than a miracle!

Thursday, October 24, 2013

Lessons Learned from Lydibug Day 24

The more and more I thought about what happened yesterday, I couldn't help but see that it was a blessing in disguise.  While the words hurt and sting, I know my daughter is worth more and I know that I don't have to prove that to anyone.  It is almost like a hurdle that I had to climb over to get to a better spot.  I know that I will never be able to change every one's mind, but I would ask that everyone at least give people with DS (or any disability for that matter) a chance before judging.

However, I think when something bad has been done to you the feeling is horrible.  But if you take a look back and reflect things are not always as they appear.  I have been asking how many times in my life have I done something like that?  How many times have I said something before knowing the whole situation?  How do I treat other people?  What else is happening in my life that is not God honoring?

I believe that when you can get to a place in your life like this, when someone has done something mean to you and you can ask yourself what can I learn from this; I believe that you are growing and the Holy Spirit is working in and through you.  I know that there are so many nasty things in my life that I must take care of before I start looking at other people.  I have an awareness of how my feelings and actions affect others and it hurts me when I hurt others.

God is always using obstacles in our lives to teach us and grow us.  We miss out on these opportunities because we are consumed with ourselves, feeling sorry for us, or trying to place blame on someone else because it is easier than looking inside ourselves.  We are our own worst stumbling block in this manner.  We miss out on blessing after blessing because we feel we know better.

Yesterday as I was sitting on the couch, Lydia was playing with my hair.  She was stroking her fingers through each strand of hair.  At one point, she decided that she would not be gentle anymore.  I said ouch and told her to be gentle and nice.  Her bottom lip immediately came out and she felt bad.  She hugged me and said sorry.  It hurts her to see others hurt. 

She did the same thing with her sister.  Her sister fell and hurt her knee and was crying.  Lydia stopped what she was doing and walked across the room to hug her and pat her on the back.  It did not matter what she was doing, she heard someone was in distress and she wanted to be there to comfort.  She wanted to be there to help out.  What an amazing thing to witness! 

I realize this way of thinking is not very popular.  Yelling, punching, screaming, saying hurtful things usually are our first reactions.  However, if we give into these things we are no better than the person who did it to us first.  The hard thing is to take the high road and walk away and pray for that person.  We are to love our enemies too!

While I am far from being perfect, God is working on me.  He is constantly giving me these situations to learn.  When I walked into that store last night (Lydia was not with me), I held my husbands hand and held my head high.  I am stronger because of these words.  I am stronger because of the hurt.  While the sting is there and sometimes catches me off guard, I know that I am strong; I know that my God is bigger than any situation.

Lydia is constantly teaching me how to be a better person.  I need to remember that I too am not always a kind, caring person; nor have I always been nice.  This is my life now and I cannot expect everyone to understand Lydia (or disabilities) the way I do.  I too had an adjustment period, while I always loved her, there is that unsettling feeling and fear of the unknown and differences.  I can ask for a chance from people, but some people are unwilling to give that too.  So I will go confident in the journey that God has given me and continue to question in the difficult situations what I am suppose to learn!

Wednesday, October 23, 2013

Lessons Learned from Lydibug Day 23

Today my post is going to be a little different.  I feel very compelled to write about an experience that happened this morning.  After all, writing has become an escape for me.  I really don't care if people read what I have to say, like what I have to say, or comment about what I am writing about; it is a great way for me to escape from my life for a moment to just breathe!  I enjoy it and it does make me happy that some people read what I write!!!  So I felt like I needed to address this situation and the more I thought about it and prayed on it, this situation allowed me to put into practice some of the things that Lydia has taught me.

This morning I went to the store.  I really had not much to do today, other than pack, and I was not looking forward to that.  I thought that Lydia and I could enjoy a little shopping.  I have NEVER been embarrassed to take her out and there has never been a fear of taking her out.  As I entered the store, I put her in the cart.  I heard "A baby like that does not even deserve to be born."  I turned to find a lady walking towards me and I said "Excuse me!"  I wanted to make sure that she in fact was talking to me.  Lydia was sitting in the cart, chatting, smiling, and waving.  She brushed past me and said "You would be better if she was never born."

I sat there, jaw on the ground and tears streaming from my eyes.  I could not speak, I was completely stunned.  No moment to come and talk, no time to say anything, just brushing past and judging my child and my family.  I was frozen in that moment unsure what to do.  I was trying to process how someone could be so mean.  I picked Lydia up out of the cart and hugged her, sobbing and made my way to our car.

I held on to her and just sobbed.  She hugged back so tightly as she knew something terrible had happened.  She pulled away for a second and smiled at me.  Then she pulled me closer.  We danced the whole way home as I sobbed.

I came inside and texted my husband who immediately called me.  He asked who this was.  It was no other than a passerby who clearly was not tolerant of someone with Down Syndrome.  I said that I realized it was just words, but they stung and still sting.  I know that her opinion does not matter, and there will always be someone who is willing to put in their two cents, but wow that was hurtful.  I said that I was sad because I did not even have a chance to educate this lady about who Lydia is.  My heart actually aches for her.

I don't know this lady and I don't know her situation.  But I pray for her.  Maybe she experienced a huge loss, maybe she aborted a baby with Down Syndrome, maybe someone close to her was institutionalized because of DS, maybe she lost someone she cared for dearly who had DS, maybe it is just complete ignorance.  I am not sure what the case is and I never will.  But I pray for her.  I pray that she would understand what a blessing a child/adult like Lydia is.  Differences yes, but likenesses oh yeah!  She is more alike than different.

As I have thought more and more about this situation, about these lessons I have been writing about, about Down Syndrome awareness month what a great situation.  See, when I got home I shared a picture on my Facebook page of Lydia smiling away in her car seat.  I wrote a small description about why awareness is so important.  That picture has gotten shared a couple of times, but maybe it will be viewed by someone who it will affect.  Someone who was unaware of DS prior to that picture.  So maybe some good will come out of this.

Discrimination is a horrible thing and it will be something that Lydia will most likely encounter for the rest of her life.  Believe me, I am trying my hardest to do what I can so she does not have to feel the wrath, but discrimination is present in all shapes and forms.  However, it is important that I handle it in a manner that I am able to teach her to do the best thing.  I need to always be a teacher to her.

Yes, thousands of my things went through my head of what I wanted to do, what I wish that I would have done, and what I hope would be done to her.  However, I am so thankful that God quieted my tongue, He made my feet as heavy as cement, and gave me tears that I could just turn and walk away. Even at the age of 27 months my child is learning from me.  I taught her that words can really hurt, but it is better to walk away and pray for that person than scream back.

The could of, would of, should of set in about educating this lady.  However, I truly don't think that whatever I would have said would have made a difference.  She did, however, look me right in the eye and she saw that hurt she caused.  She also saw my daughter; her contagious smile and her wave that could melt even the coldest person's heart.  Maybe this image will be enough to cause her to reevaluate herself and maybe change.  But I am only accountable for my actions and not hers.  Hard hard hard thing to understand in a circumstance like this.  I do think that education with someone like her is not always the best thing.  But just standing strong sends a much stronger message.

As tough as words are, as hurtful as it may be, we must behave in a way that is appropriate.  If I called names back and I said hurtful things to her, I am no better than she is.  Being uneducated about Down Syndrome is a horrible thing in my mind, but not being taught how to keep your mouth shut, or respect others is just a tragedy.

I am thankful my other girls were not there to hear that.  They have been around to hear some pretty nasty things before.  But each time we try to teach them how to be proud of their sister, no matter what.  Just like they are suppose to be proud of themselves no matter what others say about them.  Each time is a teaching moment.

In this moment, I was thankful for all of the lessons that Lydia has taught me.  I know that she would have not acted much different than what I did.  She does not like hurtful words and she would have cried too.  I know that she would not have spouted anything back that was nasty or unkind.  Lydia has taught me how to stand up and be strong, how to be courageous and compassionate.  Lydia has taught me that it is better to take the higher road even when the other person is clearly wrong.  I am learning some of these lessons and I am applying them...sometimes.

So, I hope you continue to create awareness about Down Syndrome.  We have a long ways to go yet, but we are gaining a lot of ground.  We have gone in the store many, many times and have never had this happen.  Usually she gets all of the attention and I hear how cute she is.  Usually everyone loves her to death and it is hard to make your way through the store.  I am thankful for that.  But I do think that we need to continue to educate.  And not just about Down Syndrome, but anyone who happens to be different because God created them in a special way.  She is not a mistake, she is not deformed, she is not less of a being, and she certainly deserves everything anyone else gets; after all she was created from the same loving God that created you and me.  She is joy, she is laughter, she is the light of my world, she is life, she is love, and she is my delight!

Tuesday, October 22, 2013

Lessons Learned from Lydibug Day 22

Today's lesson that I want to share with you is about relationships.  Lydia has taught me a lot about relationships.  I thought that I was pretty good with relationships and then she came along.  I had to learn how to step outside of my comfort zone and really listen.  Something that I am not good at; listening.  She taught me how valuable relationships are and how important they are to our existence.  She taught me about weathering relationships in hard times and in good, in stressful situations and in easy situations, and with people you like and people you don't.  It is all important.

Being in the hospital is no fun at all.  However, it is much more difficult when a doctor who is caring for your precious little one has a bad bedside manner, or you and the doctor just don't get along or see eye to eye.  However, even in these tough situations when emotions are running high, you still have to get along.  Somewhere, and often times it falls to the parents shoulders, must compromise or "pretend to agree" for the sake of your sick child.  Sometimes you don't agree with how they treat your child, how they interact with the siblings, how they treat you, how they talk down to you; however, you still need to have a working relationship with them, there needs to be proper communication so the goal at hand can be accomplished.  Tough, but it can be done.  And it will be done with that is your child laying there.

You soon realize that screaming and yelling is not the way to handle it.  You soon realize that sometimes being silent is better than talking over them.  You soon realize that you can get what you want (or what you child needs) when you are in a good relationship with the doctor or the nurse or the therapist or the school.  Teaching yourself how to be effective in relationships is really an art.  Thanks to Lydia I have realized that and I have started working on that.

A marriage in a stressful time is really hard.  Days when you are upset with what is going on at the hospital or you just want to be out of the situation, it is so easy to take it out on your spouse.  However, by talking through your emotions, and listening, and just crying at times are much more productive ways to release that extra emotion.  Somehow God just carried my husband and I through these tough times in the hospital.  Our marriage has been greatly strengthened.  I can't really explain it but by allowing God to work in and through us, we are much stronger by enduring months in the hospital than we were before.  And very few times did we not honor one another.  Just another great miracle that we were able to experience from God.  But we have learned how to respect one another in good times and in bad. 

Last night we had one of our CICU nurses come to our house for dinner.  After almost two years we have a friendship with her.  She drove the 45 minutes to our house and hung out with our family.  She is just a wonderful wonderful nurse.  But again, Lydia taught us the importance of having relationships.  She taught us the bond of lasting friendship.  This nurse has gone above and beyond the call of duty many times and Lydia was extremely blessed to have her care for her.  We are beyond blessed to be able to call her friend.  Because of Lydia we understand better how important relationships are.

Relationships are the key to most everything in life.  Because of what Lydia has taught me, I have a better relationship with my husband, my children, my mom, my mother-in-law, my dad, my father-in-law, my sisters, my nieces and nephews.  I understand how fragile life is and that my silly little battles just are not worth it.  It is better, often times. to forget my small gripes for the sake of the relationship.  I am so blessed that God loved me enough that He gave Lydia to our family.



Monday, October 21, 2013

Lessons Learned from Lydibug Day 21

I realize that Lydia is still young enough that the world has not reared its ugly head at her yet.  Society has yet to influence her too much (I realize it is all over).  However, there are differences that I notice about her than her sisters at this age.  She has a presence about her that is much different.  She is completely confident, proud, and comfortable with who she is.  There is not a shyness to this about her at all.  She is just completely satisfied with being Lydia.

I think it is wonderful.  I know that I had talked about the confidence that she has, and about being comfortable in her own skin, but I am talking about being proud of who she is.  She understands what she is good at and is confident in that.  She does them well.  She will try the things that she typically does not succeed in, however, you can tell that she knows what she does well and she is very proud of that.

It reminds me about the Bible when it talks about the members of the body.  We are all important no matter what we are.  Not all of us can be the heart or the brain, some of us are required to be a nail or a strand of hair, a nose or an ear.  No matter what the part is, we are needed and we are important.

If you don't think that a strand of hair is important, think back to a picture and you noticed that your daughter's hair had one strand out of place.  I bet it bothered you.  I have been there too!  Even the smallest part of our body, when not working properly, can hurt us in a big way.  This is how God designed it, big or small we all matter.

It is like Lydia completely understands what she is to do and she is doing it well.  So if her service was to set up the chairs for Sunday service, she does that to give God glory, does it with a smile on her face, and she does it in a way that you would think it is the most important job on earth.  She does it so well that you want that job because you are now thinking setting chairs is that important.  Whatever it is that you do well, you are do it awesome, not complain and give glory to God.

How amazing is that?  I have a long ways to go on this one.  I am still completely lost at my gifts and what I am good at.  Most days I long to do something cooler than what my gifts and talents are.  However, if I recognized what I was good at by being proud of the person God made me, and I did what it was that God designed me to do, and did it well; I would probably feel like I had more of a place.

It is amazing to me that she has this all figured out in a place that says she has no place.  What a backward place we live in.  Our society, well not as much as before, says she is a burden, she does not have a place, she will bog our family down.  However, if you look at her, get to know her, she knows exactly who she is, what she can (and can't) do and she is proud of that.  A lesson that we all need to learn.  We need more Lydia's around to make ourselves better!

Sunday, October 20, 2013

Lessons Learned from Lydibug Day 20

There have been so many lessons that Lydia has taught me and pretty much each day I think of more and more.  However, at times, when I sit down to write, I struggle with what lesson I want to write about or the lessons have escaped my mind.  So I asked my husband this morning what lessons he has learned from her.  He replied saying that he has learned a lot but have not applied many of them.  I had to laugh because I try to apply them, but I also fall short of many of these lessons.  I did find, however, that it has been very good to write them down and see all of these things that she has been teaching me and our family over the past twenty seven months.

I am sure that if you write down the lessons that you learn with any situation, it would be very eye-opening to you as well.  I would encourage you to.  That is why we make mistakes.  God wants us to learn from our mistakes.  He is so very patient with us and often times teaches us the same lesson over and over until we do learn.  Some are easier to pick up on and others take us a long time; maybe we will never get it in this lifetime.  I am thankful that God loves me enough to put me in situations to learn and grow.  He does it for our good.  I have a hard time with that most of the time (just swing by on any given morning when I am attempting to feed Lydia) but when I have the opportunity to reflect it is very eye opening!

Today the lesson that I want to share with you is about thinking outside the box.  I have to say somewhere in my life this was like a coined phrase.  It was the newest bandwagon to jump on.  I think, if I recall correctly, Taco Bell had that motto of thinking outside the bun.  But this is no bandwagon to jump on, there is no catchy slogan, this is just life.  And we all need to think outside the box to get things accomplished sometimes.

This has been shown to me over and over.  Just because something has worked for one person, does not mean that it will work for Lydia.  Just because this formula has been proven over and over does not mean this will work for the next person.  Because you had good results with many kids, does not mean that your 100th child will experience the same great result.  We are all different.

My eyes were first opened to this when we were in the hospital.  I thought medicine was a science.  I thought there was a medicine for this particular ailment, a formula to get the correct amount, and you give it and poof your condition is better.  I also thought things had good fixes for them and they could make just about anything better.  After all, you are always hearing about the new advances.  I quickly learned that this is so far from the truth.  And it makes sense if you think about it.  We are all different.  Each body is going to react to it differently.  The results are for the majority of the group.  So what happens when you don't fit in to that majority?  Well, you experiment until something works.  You think outside of the box and look at all the unlikely possibilities.  As frustrating as this was, it taught me a lot!  I am sure you can imagine.

We experienced this over and over with Lydia.  One night after her connection surgery she was very sick.  Her heart rate was over 200 and she would not settle down.  She had a blood transfusion, medicine upon medicine and nothing was working.  They had the talk with us that they were unsure if there was anything further they could do.  They had called in the surgeon to attempt intubating her.  However, because of the surgery that she just had this was an extremely risky procedure.  I had to call my husband home from work because we did not know if she would make it through the night.  I remember sitting there with the doctor and just running through every possibility.  She looked at me and said let's try everything we can so we don't have to try to reintubate.  At a last ditch effort we laid her flat.  She is not ever suppose to be flat because of her new anatomy.  Instantly her heart rate came down and she was sleeping, soundly.  It was a miracle.  But thinking out of the box, trying something that did not make sense worked.  We did not give up, we kept going!  I am glad the doctor was there because they would have never believed me otherwise.

This past week we experienced the same thing.  When getting her braces fitted we were told that she would take off walking and in a day or two things would be good.  Not our experience at all.  She started locking her legs and turning her toes inward.  After asking questions and going with our gut, we found that she was fighting the braces.  We then discovered because we had to go up two sizes in shoes, it was too much weight for her small little legs.  We got a new kind of shoes and she is doing awesome.  Thinking outside of the box and realizing there is no magic formula, there is no cookie cutter.  We must experiment and try everything to find something to work for her.

I can think of example upon example of this.  But it has given me a new way of thinking.  It has shown me to not judge, to keep on going, to never give up.  She has shown me a new way of looking at things.  When someone says that it can't be done, there is a way that it can, you just have not looked hard enough.  What a great life lesson to learn.  None of my kids are cut from the same mold, even though they have the same parents.  Everything works a little differently for each person.  Never give up, think outside of the box until you find a solution.  Thanks Lydia for once again teaching you mommy a very important life lesson. 

Saturday, October 19, 2013

Lessons Learned from Lydibug Day 19

Often times you hear that people with DS are always happy.  That is a false stereotype because I know for a fact that Lydia has every emotion possible.  She often, however, has a smile on her face.  A lot in part because she feeds off the attention from others.  Especially strangers.  There are many times that she will be crabby with me and see someone else and will be happy as pie.  That is who she is.  However, she does get mad and sad and angry and frightened and excited and happy and fearful and shy and very outgoing. 

But one thing that she is almost all of the time is joyful.  Please don't mistake joyful for happy.  Joy means that you have a presence about you that is different than others often times.  Joy means that you usually make the best out of every situation.  Joy means that you often times can look on the positive side of things.  Joy is having a happy heart; not being happy all of the time.

She has a disposition about herself that I long for most of the time.  She often times is distracted by a situation that is making her upset.  Usually she longs to make other people happy, even in an unpleasant situation that she is in, because she is that confident in who she is.  She has a joy that radiates from her body to others and it can't help but make you smile.

I think back to the times in the hospital that she was getting ready to get a procedure done.  As they are trying to set a line she is pulling off the turn-a-kit and smiling and laughing.  She laughs even harder when the tech says something to her.  She is happy because there is a better environment.  She often times senses that the techs don't like drawing her blood and she will hug them as if she is saying that it is alright.

When she sings in church she does so with her entire being.  She is fully living in that moment and nothing, NOTHING is distracting her.  She has a joy that cannot be duplicated.  She rubs that joy off onto everyone around her.  She gets lost in the moment and no one around her seems to matter, no one around her impacts her on how she should act.  She is completely drawn into that moment and often times she is making everyone else around her laugh and enjoy that moment with her.

She is attracted to the spirit of other people.  She wants to be around them and she wants to see them smile.  I can only think this is because she is so happy and confident with who she is, everyone should be like that.

So you can only imagine what it is like to live with someone like that.  She does make it hard sometimes to have a hard day, to feel sorry for yourself, or to not have joy that radiates from your heart; no matter what the situation is.  Her souls sings and it is starting to catch on with me.  I am so grateful for this gift.  I am blessed that God has sent her as my daughter.  She teaches me lessons each and every day.  We are all so much better because she is in our lives.  There are very few people I know of that have learned the lessons she has and are able to teach them.  She does all of this just by seeing the world through a different lens, by being who she was created to be.  I am joyful because she is my daughter!

Friday, October 18, 2013

Lessons Learned from Lydibug Day 18

The joy of sacrifice.  I know, seems as though they do not go hand in hand.  However, I have learned that there is a true joy in sacrificing.  As I have said before, I am a pretty selfish person.  I am working on not being so selfish, but it is hard.  Sacrifice is a hard thing when you are selfish.  But how about sacrificing when it is your child, your husband, your sister, your parents, a friend, a stranger?  Sometimes it is easier than others!

I have been taught on this journey to keep the image of Jesus on the Cross near and dear to me.  He suffered for me, I did not deserve it.  And yet while I was still a sinner Jesus suffered and died for me.  A sinner.  When you keep that in perspective it makes it a tad bit easier, but it is still a difficult task.

As I sit here, two plus years into our journey and focus on where we have been and what we have been through, where we are now, and what is yet to come; I do get very overwhelmed at times.  We have been through a lot.  We have learned a lot, we have given up a lot, we have changed a lot.  But I have to say that our entire family is much better because of the sacrifice of the journey.

I would sacrifice everything to feel this moment, to watch my children grow and learn.  I would sacrifice all the money in the world for moments of accomplishments with my children.  It is humbling when you use to have that nest egg built up, thinking you were on top of the world.  To only have a child and God tell you that money you thought would put that much needed addition on to your house, start your children in college; is now going to pay for hospital bills.  It is amazing what you will sacrifice to make ends meet so your child can have the very best.  And most times there is no question about what will be sacrificed to pay for her medicine, her clothes, shoes, braces, supplements; it is just done. 

So far every cold and flu season we have sacrificed going places and doing things to keep our Lydia safe from germs.  We have had to cancel things, rearrange things, we have had to sit at home because it is the very best thing for her to do.  I am often times surprised at how easy it is for my other children to just give up their plans.  They do it with such grace.  I on the other hand am willing to do it, but often times I complain.  I could learn something from my children once again!  But we do these things because we understand that this is the very best thing for her.

We picked our lives up and moved to the hospital because it was the very best thing for Lydia.  We were a family and we could all be together.  We were making memories and forming bonds that would carry us through some very tough stuff.  We make those sacrifices with a joyful heart now because that is what family do.  We understand how to be there for one another and how to give up something for the sake of the group.  These are life lessons that are hard to be taught, but have become rather easy to follow.

I am so blessed to have learned this lesson once again.  While I fall completely short of what I am suppose to be doing, I am learning.  I am heading in the right direction.  It is a joy to sacrifice for someone else, to give beyond comprehension without the expectation of anything in return.  The simple joy of this sacrifice is all that I need.  I am so blessed that Lydia has once again shown me how to live a much better life.  I am so blessed that I have her.  She has taught me so much and I am honored to be her mother.  Thank you Lydia for showing me joy in the sacrifices that are becoming so easy to me!  Your joy is all that I need!

Thursday, October 17, 2013

Lessons Learned from Lydibug Day 17


Lydia has taught me how to look past outward appearances and focus on the inward one.  She has taught me how to disregard what society has said and focus on what is important, our inside beauty.  This is really hard for me because I am a very judgmental person.  I think just being able to reveal that to myself is a step in the right direction.

 

I ask everyone not to pass judgment on my daughter; however, I am doing the same thing many times to others.   I look at how they are dressed, how they act, what they are saying, their actions, and I judge.  I think if we are all honest with ourselves, we all do that to some degree.  But I am doing exactly what I am asking others not to do with my daughter.

 

It is tough.  There always seems to be something that does not fit my idea or the way I think it should be.  However, I do not have to judge.  I can accept that our ideas are different and I can look past that into their heart and love them for that.  I can give them the benefit of the doubt more often.

 

I find myself now trying very hard to look for the good rather than the bad.  I see Lydia and it does not matter what the appearance is, she finds good in everyone.  She has a smile for everyone; even the least likely of suspects.  She has a way of just showing pure love and joy.

 

I pray that God would continue to work on my heart in this area.  I pray that God would continue to allow me to open my heart and allow me to be less judgmental and more loving.  The world would be a better place if that were so. 

 

I don’t mean to say that I have to leave what I believe to be true, to deny my beliefs; but I don’t have to pass judgment in a bad way.  I don’t have to point out other people’s faults because most likely I am an offender in that judgment too.

 

Judgment is a hard thing and is terrible.  Just as I don’t want my daughter to feel the wrath of others looking at her and passing a judgment before they get to know her, I don’t want to do the same thing.  She has a love, openness for everyone.  I need to be more like her.  Oh Lord keep working on me, I am a complete work in process and have such a long way to go.  Thank you for sending me this gift of Lydia to learn some very important life lessons.

Wednesday, October 16, 2013

Lessons Learned from Lydibug Day 16


Contentment is a hard thing.  Achieving contentment can give you satisfaction, peace, and harmony in your life.  One thing that I found is you must focus your eyes on our Heavenly Savior and not take them off.  Things of this world are going to get in your way and rob you of this contentment.

 

Lydia has such a great disposition of being happy right where she is.  I understand that she is young and has not had the pleasure of this world to influence her.  However, what I can learn from her is to see her happy right where she is.  She has full contentment of being herself.

 

If I am not content where I am at today, I rob myself of the blessings that God has in store for me today.  I have robbed myself of the beauty that today has to offer.  If I am not content where I am at, I can never fully appreciate what has been given to me.

 

If I spend my time longing for what I had in the past, for making things to go back to how they once were, I rob myself of my future.  I cannot fully see what God has intended for me.  I cannot fully take in every opportunity, every blessing, every hardship, and every lesson that God wants me to learn.  I am missing where God has me placed right now. 

 

If I spend my time looking for the future, trying to change where God has me, dreaming of a life that does not match my current life in any way shape or form, HUGE contentment sets in on me.  I can no longer look at my life and say it is OK.  I can no longer be content because I am longing for more.  Again I rob myself of where God has me right now.

 

If I look at Lydia, she is completely happy with where she is all of the time.  She is happy and content with the life that God gave her.  I have a whole lot to learn from her yet, but I am so thrilled that God has opened my eyes to this.

 

It is not wrong to dream, but I need to remember that I have to bring glory to God.  I need to remember that it is His Will and not mine.  If I completely submit myself to Him and allow Him, I will be content in this place.  In many ways I feel like learning this lesson has made me the richest person around.  He is all that I need and when my eyes are focused upward I can find peace and rest; contentment in this place we call life.

 

Lessons Learned from Lydibug Day 15


I always hear people say that they long for those baby years; that our children grow up way too fast.  I totally agree.  However, I get the advantage of savoring these years with Lydia.  It is like God has allowed me to preserve some of the years with her and just soak up each sweet moment.

 

One may say that she is delayed and I like to think that she is being kind to me.  I like to think that she is allowing me to take in each sweet moment of baby that I can possibly hold.  She will most likely be the last baby in our house and she is allowing me to savor every moment.  I don’t want her to grow up.

 

I still enjoy rocking her to sleep, cuddling with her, changing her diapers (I know crazy, but for this too I prayed!), having her need me, comforting her, hearing her sweet soft cries, grabbing her out of her crib (well, the only thing she knows as a crib), smelling her sweet soft skin.  I enjoy all of the things about baby.  I am in no hurry to have her grow up.  She is allowing me to savor these moments and appreciate what I do have.

 

Often times our child turns two and we wonder where time has gone.  We long for those days of baby back.  We wish that we had taken more time and that we would remember those long nights where baby just needed mom, what they smelled like, the soft coos, the hours of snuggling and watching them meet every milestone.  They grow up and then we wonder where that time has gone.

 

Lydia has allowed me extra days, weeks, and months of these precious moments.  While our society says she is delayed, she has not achieved the milestones at an appropriate time, she is behind for her age; I see it as a blessing, I see it in a totally different way.  I get to enjoy her longer.  I get to understand what each milestone is because she needs to work so hard to achieve them.  I get to have my baby a while longer!

 
It has taken me a long time to get to this point and yes, there are still lots of times when it is really hard it stings.  However, she has given me gift after gift and it is a blessing.  I have had the chance to fail, make mistakes and learn from them.  I have the opportunity to savor these moments, embrace them and etch them in my mind.  Because before too long, she too, will be a big girl and I will crave these moments.  How blessed am I?

Monday, October 14, 2013

Lessons Learned from Lydibug Day 14

Each morning we are awakened with a beautiful sunrise from our Heavenly Father.  Each fall we get to see the most vibrant colors on the trees, a picture that cannot be duplicated in beauty.  Each night we can look up and see a sky full of stars and just stand in awe of the majesty of it.  Every where we turn God is giving us beauty beyond our comprehension; and yet often times we are too busy to see it.  Often times we don't take the time to see it.

Lydia has taught me how to slow down and appreciate every moment.  Often times she does this in the form of a hug.  She will reach out to one of her sisters who are crying and in pain.  She will walk over there, often times falling on them, and wrap her arms around them and squeeze.  She will pull away with a HUGE smile on her face.  Pure joy.  Those moments are simply priceless.

I remember back in the hospital room when I could not do anything for her.  Days when she had so many tubes and lines and medicine going in there it seemed as though she was getting strangled in the bed just laying there.  I was reminded by many of the amazing nurses who cared for her the importance of touch, singing a song, reading a book.  No matter what the environment of the room was, I would sing.  I have never been proud of my voice, but I would sing.  Most times you would walk in her room and hear music playing.  We were not ashamed to play our Jesus glorifying music either.  I would be reading a book or telling her something about her sisters as nurses where changing dressing.  I would hold her hand and pray with her.  These are moments that allowed me to bond with her, even when I thought that I was doing nothing.  These are moments now that I treasure as sweet memories.

It is in the small stuff, that most times I miss, that are so important.  When I see that she has taken more than 20 steps and I kneel to be on her level and give her praise; she has a smile that melts my heart.  Takes me right out of a bad day.  When she is getting in trouble and I just want to yell and scream and spank her; there is that smile that comes out of the corner of her mouth and that look like "Ya right mom, you can't be mad at me!" (I am in trouble, by the way, with that look; I usually completely melt.)  Those moments that we miss but are so important to us.  I believe that God gives us these moments to make sure that we are bringing honor and glory to Him.  And most times I find myself in moments that I NEED a new attitude.  She is always doing that for me!  What a HUGE blessing it is.

These small moments that have become BIG and life changing for me.  I am so blessed to have been taught this because it has transformed who I am.  I no longer look for that HUGE vacation.  My girls are happy with going to the lake, climbing a rock, and just hanging as a family.  Just taking in every moment, ceasing the time and completely enjoying it.  Too often I let it pass me by and I miss out on a blessing, the chills of the evening sky, the hug of a sunrise, or the importance to my kids of noticing the small stuff.  I dare to say, that so far, Lydia has not let one of those moments pass her by.  She is contagious and rubbing off on her entire family.  We enjoy less stress and are having more fun.  What an amazing blessing.  I am completely blessed beyond measure because God allowed me to have a child like Lydia.  What a blessing!

Sunday, October 13, 2013

Lessons Learnd from Lydibug Day 13

Today I want to talk about determination.  I have never seen someone fight so hard to accomplish something that comes so easy to the rest of the world.  Every set back seems to make Lydia more and more determined.  That determination has allowed her to overcome some huge obstacles.  Her determination has also caught fire in our house and that is why we are able to continue doing what we do.

Lydia has struggled to gain weight well.  It has been a family ordeal to get her to eat.  From issues with her feeding tube to sickness to just getting her to take a bite, it has been a long road.  I fear that we are just getting going on this road.  But her determination has caught fire with both of our other girls.  Every Tuesday morning they ask if she has gained weight.  They are excited when she gains and they are sad when she loses.  They take pride because they are in this journey right along with her! 

Even on the days that I am exhausted (and don't get me wrong that is just about every single day), I remind myself of how much determination Lydia has to keep her moving forward.  That is enough to keep me going too!  It is super contagious.

As we switch gears to get her transitioned into school, she reminds me how far that determination needs to go.  It is hard and it always seems to be a battle.  But no one tells her that she can't do it, that she is not capable because she is so determined.  I must remind myself of that too.  She can do and so can I.

This lesson is one that I could have never taught my other children.  They understand determination and the concept of never giving up, no matter what.  My other girls have been there when people have told us that Lydia is not worth anything, when I was told that she should have been aborted, when the doctor said that there is more to life than Lydia; she should be in an institution.  However, they understand Lydia's determination and how that has gotten her so far.  They understand that you don't walk out on the ones you love, you keep going, no matter what.

I feel so blessed that God loves me enough to teach me this lesson.  Determination at its best is Lydia.  Determination in action on a daily basis is Lydia.  Determination is Lydia.  I have never seen determination quite like Lydia.  It makes me so proud of her.  I am so blessed because I get to learn this lesson each and every day and I get to see it in action every single day.  Thank you Lydia for showing me what it is like to have determination and let nothing, nothing sand in the way!!!

Saturday, October 12, 2013

Lessons Learned from Lydibug Day 12

Let's be honest, really no one gets pregnant and says "Let's have a child with Down Syndrome who has lots of complications."  The fear and the unknown is completely overwhelming.  And if I am being really honest even at 20 weeks when we got the news that there may be a possibility of having a child with Down Syndrome I was pretty freaked out.  It was a completely unknown territory to me.  I had no clue what to expect.

My mind was fogged with Down Syndrome and I could not see through it to understand that each child is scary and there is a huge unknown.  Just because our baby may or may not have Down Syndrome really did not change that each child is scary and no one knows what to expect; even if it is your fifth child.  No child comes with instructions or a how to guide.  There is not one child that is guaranteed anything (none of us are!).  There is not one child that we will ever know the future with.

However, I feel in a lot of cases that society kind of told me what to expect with Lydia before she even entered this world.  If I read on the Internet I was told she would never do this and would not be able to do that.  I was told that she would be a drain to our entire family.  In support groups I was told I was lucky because she would always be happy.  In support groups I was told she was a blessing, but if I was out in society I was told to get an abortion. 

Why was it so different with Lydia than the other girls?  Is the diagnosis of Down Syndrome that horrible?  Is there a life sentence that comes with it?  What is the deal that so many people who have never taken the time to get to know some one with Down Syndrome are so quick to judge; while the community that lives, eats and breathes Down Syndrome is so happy and feels blessed?

Conflict.  And if I am being perfectly honest with myself, most days I believed society.  I convinced myself in my mind that I did not want what Down Syndrome had attached to it.  I convinced myself of so many of the negative things.  Although I knew that I would not change this child in anyway, the hype and negatives that come with this diagnosis was scaring me.  But God is good and surrounded us with a lot of great people who encouraged us.  I just had a very hard time getting society's horrible view out of my mind.  At times the fog was filled with negative views and I did not know what way to run.

Facing our fears and going boldly entering into the unknown is hard.  But don't we do that with each child?  We are not promised a healthy child, a boy, a girl, a smart child, an athletic child.  We also don't know what the future holds.  So why does society seem to think they know what the future holds for a child with Down Syndrome?  Yes, there are some things that are more likely, there are greater health risks, there may be some delays.  But have you heard there are folks who carry an extra Chromosome who are running their own restaurant, who are public speakers, who live independently, who are married, who are a mayor, who are making impacts on communities?  They are more alike than different.

So what is the lesson I have learned?  To face our fears.  To not let what other people think overtake us and miss out on a blessing.  She is a human life, she has been created by God (the same God who created me) for a specific purpose.  Her life has meaning, her life has value.  And no one can predict her future, no one can tell me who she is and what my life will be like.  She is no different than her other sisters.  We will just have to live life and let that unfold.  No one can tell me the "level" of Down Syndrome she has, that she will be happy all of the time, that she will be a drain on our family.  No one can tell me that Ellen is going to be a famous writer one day or Allison will be on the US Olympic team for gymnastics.  She is no different.

I will not let fears dictate what we do.  I will try not to let society's view get the best of me.  Lydia has taught me how to face my fears head on and reap in blessing after blessing of doing so.  Some of those blessings may take awhile to get, but victory in facing the fear is life changing.