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!

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. 

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!

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!

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.

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?