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.

Friday, October 11, 2013

Lessons Learned from Lydibug Day 11

There is always two sides to every story.  There are always multiple ways of doing things to arrive at the right answer.  Lydia has constantly shown me this.  And, as Lydia likes to continue to show, there usually are exceptions to the law!  Lydia has proven over and over and over again that she will usually open your eyes to something that you may have not thought about before!

I can think of many examples.  Lydia was born with many medical complications.  I learned fast that there really is not much of a science to the medical part of things.  There are really good theories that work sometimes, but not all.  If you think about it, we are all different, we all carry a different make-up; so there is not going to be one exact cure for everyone.

There may be drugs that are better for children that have a condition like Lydia, but it is not going to work all of the time, no matter what the doctors say.  I think that it is important to do your research and to know what you are talking about.  But it is also important to spend time with your child and realize that there may be something else going on.

I talk about this from a medical point of view because I was surprised often times at how little science was playing into what was really happening.  We have the best of the best in terms of technology, but it is only as good as the machine.  Often times machines would alarm and the numbers would indicate that Lydia should not be breathing, when in fact she was.  (The best advice we got was to look at the patient first and then at the machines.  Your eyes on the patient are far more accurate than any machine.)  There would be times that after trying everything they could come up with, the least likely thing would work.

This is a great example for our lives.  There may be things that should work but don't.  There may be things that are long shots and may prove to be the very best.  I think that everything is worth a try (as long as you weigh your risks and really asses the situation).

I remember when Lydia was really really sick.  We had given her a silly supplement that I actually had pushed the nutritionist as to why Lydia really needed it.  After dragging my feet for weeks, I finally gave it to her.  Instantly she was sick.  While I did not put the connection together right away, I knew that this was the only thing that was changed with her diet.  After being made out to feel really silly in front of the doctors, I shut my mouth.  I still had that feeling.  They said it would be really rare if she had a reaction from the supplement.

Two weeks almost to the hour the supplement was given to her and 911 had to be called.  There was no way they were telling me any different this time.  I knew my child and I knew; rare or not, this was something that we would not continue with.

Lydia has taught me to look at situations more objectively, to figure out the facts, to ask questions, and to try things out.  She has taught me not to discount things when they seem silly because you never really know.  God is in control and He is the only one that knows.  No mom knows everything, no doctor has the right answers.  Be in prayer and meditation and be open to the impossible.  After all, God is using all sinners to complete His master plan and He can use us in powerful ways if we allow ourselves to be open.

Thursday, October 10, 2013

Lessons Learned from Lydibug Day 10

Down Syndrome is a genetic disorder.  It occurs when at the time of conception when the cells divide.  The cells divide in an abnormal way causing there to be 3 copies of the 21st Chromosome.  When this happened years ago and the baby was born, that baby was not allowed in society.  We as a society shunned that person because of who they were created to be.  We as a society said that they could not do anything and they were not worth anything.

It has taken years and years and many brave souls to fight for the rights of people with Down Syndrome.  It has taken many people to break through these stereotypes and prove that people with Down Syndrome are actually a lot more like you and me than they are different.  We are finally starting to see people with Down Syndrome mainstreamed and accepted in society.  However, there are still many negative stereotypes that exist.

I say this only to remind us why we create awareness about Down Syndrome.  We create awareness to get our society to accept people like Lydia.  We create awareness to get people like Lydia included in mainstream activities or learning (should that be the best environment for her).  We create awareness to learn from someone like Lydia.

Today my lesson that I have learned from Lydia is to be comfortable in the skin we were given.  See Lydia was born just the way she is, she knows no different.  She is very comfortable being her.  She does not know that she is delayed, she does not know that she looks different, she does not know that she has major medical complications, she does not know that it is not normal to have beautiful scars all over your body.  See, I forget that she knows nothing different.

What she knows, she is beautiful, she is loved, she is important, she is worth something.  What she knows is who she is and what God wants her to be.  What she knows is more than I give her credit for most times.  She because it does not matter what she looks like, that she could not walk until she was two, that she spend the first five months of her life in the hospital, that she has no stomach and esophagus, that she had open heart surgery.  None of that affects what she was created to do on this earth.

Just as I struggle with weight and have spent most of my life missing out on things because I have allowed myself to play into silly stereotypes.  I have felt uncomfortable with the way I look because I have told myself I am nothing when I am bigger.  However, bigger or smaller, I am still the same person.  It is a shame that I have allowed myself to think that I am not worth much because of how I look.  I may feel better health wise when I am smaller, I may be a little more confident, but I really am not changing who I am.  I still have the same beliefs and the same husband, the same family, the same children.  The only thing that I do to myself is miss out on opportunities because I am scared.

Lydia...she doesn't have that and I pray she never loses that.  She is who she is because she knows no different and I love that.  She has taught me how important it is to love myself for who I was created to be.  She has showed me the importance of who I am because no matter what that may look like I am worth more than I think.  No matter the physical appearance, the cognitive delay, the size I may be, the color of eyes I have; I am worth more than I think and I need to be proud of that.  I need to understand my strengths and be proud of them continually working on my weakness. 

I struggle with this every day, but every day I see Lydia and I am so proud to understand this.  She makes me proud and I am so blessed that again I get to see an important life lesson every day that I can work on.  She is who she was created to be, she is proud of that, and that is an amazing gift.  I will work very hard that no tries to change that but embraces who she is.

Wednesday, October 9, 2013

Lessons Learned from Lydibug Day 9

There is no mountain too high or no joy too great.  I believe that this is Lydia's motto that she has lived with.  She has accomplished things that no one thought were possible and she has done it with pure joy.  Everyone who meets her is affected in some way.  Everyone who hears her story is affected in some way.  She has a light, a twinkle, a sparkle that will wrap you around her finger so quickly you will not see it coming.

I look back to her trials in the hospital and usually they seemed impossible.  She was in there for over five months.  Most days just felt hopeless.  But if you walked into her room, often times she had a smile, a hug, a giggle to just melt the fears and worries away.  Even when she was sicker than sick, where they did not know what the next minute would hold; there was a twinkle in her eye where you just knew she was fighting with all of her might.

Often times when she heard the doctors or nurses, or a therapist or mom tell her she couldn't; moments later she was accomplishing whatever it was.  Around Thanksgiving we were set to go home and then we found out she was in complete heart failure and was really sick.  Her surgeon came in to just hug us and give us support.  He understood how long and hard this road was.  He said very loudly I bet she will not be home until after the new year!  She came home just days after Christmas.  She was out to prove him wrong, she could move mountains and she could do so with joy!  She sailed through her open heart surgery and eleven short days later was ready to come home for the very first time.

When stereotypes about what she can and can't do cloud my mind, I must remember that just like the other girls, she will show me what is important.  Just like the other girls she will determine what she can and cannot do.  The mountains my not be moved on my time, but on hers.  And each mountain that is moved; there are thousands of lessons to be learned.

So when I look at a situation and think that it is impossible to accomplish, the mountain is too high to climb, I remember one step at a time.  And not just one step at a time, but one smile and step at a time.  I am to bring glory to God as I am fighting this battle.  It is a perspective that I have never seen until meeting Lydia.  Even in the hard stuff there is glory and joy abounding from her face.  Even in the hardest of the hard situations there is a presence of peace and calmness.  This is what it is all about.  Accomplishing tasks and setting out to do something, no matter what.  To impact lives and to show people that it can be done.

Often times we look at that mountain and say it is impossible and walk away.  We miss blessing after blessing by doing so.  Usually we are brought back to that mountain to climb too and it is much more difficult than if we would have faced it to begin with.  We can do all thing through Christ who gives us strength.  We cannot do it on our own, but with Christ anything is possible.

Thanks Lydia for the great reminder and giving me courage to fight the battles that life throws my way, no matter what.  And thanks for teaching me about joy and giving glory to God in the face of hardships.

Tuesday, October 8, 2013

Lessons Learned from Lydibug Day 8

As with any child, they change us, they make us better (or at least they should!).  Any child tugs at your heart strings and changes your perspective on life.  There are many things that start to change in your life, things that use to matter seem not so important anymore.  At some point sitting home on a Friday night eating a "cardboard" pizza watching an animated movie seems like the best Friday night ever.  Oh and not to mention that you are in bed by 9PM!

Lydia is no different in that she has changed me.  I think, because of her journey, it has changed me in a lot of ways.  Because she needs to work at almost everything she does, things seem so much more important.  Because you understand how intricate walking is, and every single detail that goes into it, it's a BIG deal.

I never understood that with my other children, because I did not have to understand.  I did not understand how important it was to crawl and why each step is needed in the progression of a child's development.  I did not have to because my other girl's progression came naturally.  It comes with Lydia, she just needs to work on it more.

Lydia has taught me how to SLOW DOWN and RELAX.  Life is not a race, it is a marathon.  You need to take care of all the details so you can persevere until the end.  You need to condition yourself, practice and push yourself.  And you need to take in all of the things around you so you can prepare yourself!

Our life has become more simple since Lydia has been here.  We have taken every moment to embrace everything.  We celebrate every moment.  Often times we celebrate every single second.  Lydia often looks to us for encouragement by praising her.  The girl's face lights up every time we give them praise.

We have learned to take every opportunity to tell them that we love them, to celebrate whatever it is that they are doing, and to just SLOW DOWN.  Our lives are too busy and we miss things that our children are doing.  I feel so blessed that God has given us this journey so we can learn this.

When we hear of a school shooting or some kind of tragedy, we often hear that we need to hold our children tighter.  The problem is that we should be doing that all of the time regardless of the situation or circumstance.  I know that I have taken the time with our children and I have embraced the moments.  I know that they know I love them and we are a close family.  I am proud to say that we have that relationship.  We still eat almost every meal together, we pray in the car, we do devotions.  I take every moment to tell my kids I love them and I am proud of them.  I help them with their schoolwork and I am involved in their education, in their spiritual education. 

I am still a long way off from being "perfect" in this area.  Often times I find myself sucked in my the computer, blogging, a book, a movie (we don't have TV for this very reason), or tied up in some kind of cause.  Not that they are bad, but I need to remember to RELAX and SLOW DOWN.  I need to remember what Lydia has taught me.  Work hard on everything, celebrate often, and be proud of who you are today!