Monday, November 24, 2014

A Heart of Gratitude

When I walked out the door on July 25, 2011 I knew things would change.  I didn't know if my arms would be holding a baby, I didn't know if I would find myself on bed rest for a week, I didn't know if my baby would make it, I didn't even know the fullness of my baby's struggles as they did not have a diagnosis.  I certainly did not know how I would change.

It is Thanksgiving heading into Christmas and everyone seems to be thankful and giving and caring.  However, one thing that I have learned is a heart of gratitude.  I would argue that it is more than being thankful, especially just around a season.  It is more than just giving to make myself feel good.  I would argue that a heart of gratitude is a lifestyle, is a way of living, a way of thinking.

Having Lydia has changed me, taught me, stretched me and even made me crazy!  But I am not the same person I was when I walked out that door and I never will be that person again.  We all experience things in life that completely change us, that make us stronger, that allow us to rely on God more, that restore our faith in humanity, that stretches us and changes us and molds us into the person God is creating us to be.  Each little hurdle, each celebration, each trial, each time of discipline brings us closer to who He wants us to be; if we only allow Him.

When I reflect back and think about who I was prior to walking out the door on July 25, 2011 I cringe because that person is so far from who I am today.  I was a very critical analyst of everyone who crossed my path, I very seldom thought of other people, I tried to gather everything for me and my family and stock piled it for a later date, I was constantly thinking of me and my family.  It brings tears to my eyes that I could not see the cold bitter life I was leading.

However, God gave me a life changing event in many aspects on July 25, 2011.  I did have a baby, but I was not holding that baby.  I was wondering how she was doing, what she looked like, I couldn't even imagine a future for her.  As they wheeled me to see her I cried because my arms ached.  When they pushed me into her room I was able to peer into her little medical crib and saw wires and tubes attached to this precious life.  Immediately a code was called and I was rushed back to my room, in another hospital.  There was blood everywhere.  It took them several hours for them to get me stable, but I wasn't able to see that little girl, she lay alone in a hospital room with no mom.  How my heart ached.

That was only the beginning.  There were surgeries and procedures.  There was sickness that kept her away from many people.  There were days that we never got sleep because we did not know if God would allow life for our daughter.  There were days where the doctors scratched their heads, consulted, and were unsure of the next steps.  There were many times when we saw life and death in our daughter.  There were many times that prayer and hope was all that we had.

God allowed life for her and we were able to bring her home.  Feeding issues set in.  We were told that she would never eat, that it would be better to place her in an institution.  How can I do that to my daughter?  She is mine and she was made just for our family.  We would be missing something if we put her in an institution.  No, that was not an option.

Long days turned into long weeks, which turned into long months, and eventually into years to get this child to eat and eat enough to get her to gain weight.  Struggle upon struggle we faced with her.  Doctors upon doctors we discussed things with.  Wait and see was usually our answer.  Praying and hoping that God would allow her to continue with life.

When I left that day, I had a bag packed for the hospital.  I had maybe a little more clothes that you usually would, but maybe just a week of maternity clothes and comfy clothes.  When I called my mom to tell her there would be a baby that night, the girls quickly packed whatever they could find and came.  A hotel would be their place to call home until we could find out more information.  A conference in town made them bounce here and there until there was room for us at the Ronald McDonald House. 

A home at last at the Ronald McDonald House.  We had really nothing.  While we had a home, it was not home anymore because my daughter was not there.  I could not enter that house, it was just a placed that was filled with stuff, not meaning anything to me anymore.  The house was under construction so there was really no finding stuff.  Our neighbors and friends were busily trying to finish the project we had started.  It was a place that was cold and so distance.  A small room with two twin beds, a small bathroom, and a tiny closet was our new home.  And it did not matter because that was the only place we could be together as one complete family.

As the weeks turned into months at the Ronald McDonald House the beautiful sunshine quickly started hiding more and more.  The leaves started showering us with a beautiful picture show every day and then there were no leaves on the trees anymore.  The wind howled and blew and the snow flew.  None of us had stuff to wear and I could not bring myself to that place that stored all of my once precious treasures, the place I once called home. 

There were people all over that were praying for us, that were providing gas cards for my husband to make a two hour commute one way to work.  There were people in our new community that supported the Ronald McDonald house and provided all kinds of needs.  There was a school that we were now part of and the most gracious of people who offered their houses for the many holidays we were there, who cooked us meals, who included my children in play dates and parties.  There were acts of kindness that were beyond my imagination that complete strangers would do for someone else.

My heart was being changed in ways that I could not explain.  Gratitude I have come to learn is not just something that you do, it is a lifestyle.  When my eyes are fixed upon God I am not thinking about myself and I am serving other people.  I am looking for ways to be the hands and feet of God.  It is so amazing and a huge lifestyle change.  It has also become a way to be content and happy.  And it is not just an outward appearance but an inward change. 

I have learned that things are just things.  Being in the hospital (and at the Ronald McDonald House) during a Holiday really makes you learn about what's important.  I remember one of the best Thanksgiving's we have had as a family.  The girls put a blanket on the floor of the hospital and played Cootie with their sister, we talked to a cardiologist about Lydia's Open Heart Surgery she would be having in three days, we prepared a feast for the nurses on the floor, and the girls hand delivered flowers they had made for all of the nurses.  We were so thankful for those nurses and that is what it is really all about.

I remember Christmas.  Lydia had just had Open Heart Surgery and was intubated and recovering.  I remember shopping that year and it was so different.  I would have paid any amount of money to buy health.  But that is not possible.  Instead I learned a lot about faith and was thankful for the breath of life our family had that day.  While we had gotten a few gifts, it was about the memories, the relationships, and the time we spent together.  I remember we got Gyro bowls for the girls.  Our nurse Kathy gave them ice cream in them.  When the medical director came in our room to talk with us, she asked if the bowls actually worked.  Just like clock work, the girls tipped them upside down while holding the sides of the bowls and the ice cream dropped on the floor.  We had a great laugh.  It is in moments like that that mean the world.

Gratitude is more than a day of giving thanks, it is a lifestyle that changes you in ways you cannot imagine.  Because of Lydia, because of this journey, I have been blessed enough to learn about it.  I have experienced a change in life that takes the focus off of me and puts it on others.  That is the only way that I can take care of my children and especially Lydia.  What a blessing it has been.

Each day we have been given is a gift, it is a precious gift.  I am so glad that I have been chosen to learn these lessons.  Lydia drives me to the point of going crazy, but she has taught me some of the most precious life lessons ever.  And I find it so amazing that such a young girl can teach such big things. 

Life is precious and when we learn to live in the moment, celebrate every milestone, and take nothing for granted, it is such a beautiful thing. When we learn that relationships are the most important thing and are worth investing everything we have in, we are rich.  God wants our time, He wants a relationship.  I have learned this and I have been so blessed because of it.  My time that I give to my girls and husband are never wasted.

May you have a most enjoyable Thanksgiving.  May you be thankful right where you are at, no matter what your circumstance is.  God bless you.

Friday, November 7, 2014

A Stronger Choice

As a parent of a child with special needs I hear often about how strong I am.  I hear about how God chooses the perfect family.  I hear about how blessed I am.  I see those greeting cards about how I can do anything because I am a mom who has a child with special needs.  If this is the case, why do I feel so lost and confused?  Why do I feel like I am the weakest person I know?

I don't have any answers.  I will not pretend that I am something I am not.  I know that right now I feel very lost.  I feel in a place of complete confusion.  The first couple of months with Lydia I was thrown into a world that was completely foreign to me.  My daughter was sick, very sick.  I researched and learned so many things that never interested me before.  The only reason that I was doing this was because I needed to make a decision for my daughter.  I loved her and I wanted to make the best decision possible.  The only way that I could do that was to familiarize myself with things that were so unfamiliar.  I had to step outside of my comfort zone and make a strong choice.

And now as we continue to deal with medical challenges, and challenges that are not so easy.  There are many complexities to Lydia, her anatomy, and how we treat when she gets sick.  There are many things that we have to balance.  Things many people do not understand because they have not walked this journey.  But added to this mix, we are now entering school and I don't know what the best is for her.  Sometimes I wonder if the experts know the best for her.  Sometimes I feel so confused and overwhelmed by it all.  I want to do the very best for her and I am often left wondering what that is.  But I push through and I make the strong choice to love her and continue to step further outside of my comfort zone.

I continue to live in a state that is completely foreign.  I research, I read, I talk to people and I keep pushing towards that gut mommy feeling.  It's a feeling that is hard to stand up against people who have MD at the end of their name or a Master's Degree, but I have found that has made all of the difference.  "I am mom and I know her best and I think this is what should be done."  That is a hard sentence for me.  I have learned, however, that this is a very important piece of making decisions for her.

I live with this child every day.  I take care of her every need.  I sacrifice things for me, my husband, and my other girls for her.  I choose to love her and this is how I know to do it, sacrificing for her.  I don't wear a cape of any sort, I am not special and most days I am not strong.  I was chosen for this journey but it is still my choice to live it out.  It is the stronger choice I make every day to wake up and face the challenges that have been written for my life.

The stronger choice, in my opinion, is to keep fighting, to keep speaking up, to keep pushing for answers, to keep looking for the very best for my daughter.  It is a choice, just like love is, that we make every day.  There are no special needs super hero powers that are given to special needs families, or at least mine.  I don't want someone to think that either. 

However, because I make the choice to honor God through what He gave me, I am blessed.  I am blessed in many ways.  I have learned many lessons that have changed me, that affect who I am and how I handle myself.  I am blessed because I get to see life through a different lens and it is a fun ride.  I am blessed because I have learned the importance of celebrating every small milestone and embracing each moment.  I am blessed because I have made the stronger choice.  I am blessed because I have taken the road less traveled.  It is true, that if it is worth it, it will be hard!

I am blessed too because my daughter gives me strength and she inspires me.  She handles her life with grace and dignity.  She loves without boundaries.  She smiles through blood draws and she gives her sisters' hugs when they are down.  She is more concerned with other people and their feelings, even when she is sick.  She sees the souls of people and she has a twinkle in her eye that is contagious.  She never complains about the many doctor visits and procedures, she makes the best of very situation.  She inspires me for so many reasons and she makes it easy to keep choosing to make the stronger choice.

If I have learned one thing along our journey, it is that medicine is trial and error.  When making decisions, you are your child's best advocate.  They need your voice.  You have an important element in every decision because you know them best.  We have found this out with school placement, therapy, her health, and just how to treat her in general.  She needs that voice and when I make the stronger choice, she wins.

I am not strong, I am actually very weak.  Most days I don't want to get out of bed.  Most days I whine and complain about the lot given to me.  Most days I don't handle the stress of everything very well.  However, most days I am completely inspired by her, most days I am blessed, and most days I just look at her and I feel energized.  Making the stronger choice is the best thing I have done.  No one said life was going to be easy, perfect, or awesome.  But the little extra that Lydia gives to me makes me think I am in heaven.