Monday, July 29, 2013

Throwing Out Expectations

Lydia's second birthday has come and gone.  The emotion that filled that day still lingers.  However, I sit back and think about what I learned, what I really learned.  I so badly wanted to type and explain what I have learned, what it has meant to me having someone like her in my life.  However, the page was blank, my mind was full yet empty.  I realized that I never really will know what I have learned or how to communicate that, I realized that as I walk this journey I am learning, growing, changing.  But most of all, I realized that I have come to another one of those transition points.  I am transitioning out of grieving and stepping into total acceptance, or so I believe.

When we were first going through everything, our Fetal Concerns Manager gave us a poem called "Welcome to Holland."  I read it and thought that it was dumb because I thought of course I am somewhere different.  I am pretty sure most people who encounter something like this were given this poem, have stumbled across it, someone has mentioned it to them.  It is a great poem to give the analogy that things won't be as you planned, that things will be different and soon you will come to accept the new place you are in.  You may always dream of being some where else, but Holland is where you are.

I think it is a great poem, however for me, it did not touch on the process that you need to go through to truly appreciate Holland.  I knew we were someone place different.  I have two other children.  I did not have to go through half of the stuff we endured with Lydia with them.  I knew that things would not be as I longed for.  I knew that eventually I would come to a place where I would accept our circumstances.  It does not mean that I love our daughter any less, that I think any less of her, but I understood (or thought that I did) that I was in a different place.  But it did not tell me how to get to that place and it couldn't.  That is something that I would have to grow into, something that I would have to learn on my own.

I don't think that I really understood.  I thought I knew that we were in a different place that things would be different.  I thought that I accepted them and I was OK with it.  I thought, I thought, I thought.  I had expectations.  I had dreams.  I longed for things.  But when I looked at reality, those expectations were different, some where no longer there, some could not be possible.  I questioned why?  I was upset because there were times that I could not enjoy or accept where we were at.  I wanted something different but I wanted nothing more than I was given.  A confused mess.

I loved her and I never wanted anyone to think that I did not.  I would not change her for anything.  I would not make her different because she would not be Lydia.  However, I had these secret dreams, these secret emotions.  While I loved her, I was grieving these expectations that I had, I was longing for that image I had placed in my head.  I was confused as to how to get this out of my head.  I wanted to be in a place of total acceptance, but I had to deal with these secret emotions and I was embarrassed.  How could I explain to someone else, how could someone else understand.  I certainly did not want to give the wrong impression but I was unsure of how to walk that path, how to get to the next point.

Lydia's second birthday brought most of that out for me.  I vividly remember Allison's (my second child) birthday.  I remember what she was like, her milestones (I really have never paid attention to milestones, what they were doing at what age so this was VERY eye opening to me).  I remember before age two she was potty trained.  I remember going camping with her and she was talking, she understood me.  I remember we could have conversations.  I remember she was running around with the big kids, climbing on the playground.  I remember she knew what a birthday was, she could open presents without any help and blow out the candle on her cake.  I remember she was the picture perfect image of a two year old.

Then we celebrated Lydia's second birthday.  She cannot walk, she needed lots of help ripping the paper (she could pretty easily open a present that was in a bag, understand it and enjoy it) she did not understand what was happening.  She did not know that she was two.  She could not blow the candles out on her cake, she still ate her food like a baby and needed a lot of assistance.  We are no where near starting to potty train, she cannot be reasoned with.  She is not talking and she is not running around playing with the other kids.  This would not be my picture perfect image of a two year old.

Or is it?  See in that moment when I realized what she is not, I also realize who she is.  She is no where near what I expected in many ways.  She may not be able to do any of that.  But there is so many things that she can do.  I can choose to focus on what she is able to do, celebrate those and just relish in the moment.  Or I can choose to grieve and feel sorry for what I do not have, that image (and that is all that it image) of what I thought I should have.  Then I will miss out on everything that I do have.

See, I have a miracle.  I have a child who proved to everyone that she can eat (the doctors told us to institutionalize her, that she would never eat orally, she would always have a feeding tube).  She maybe needed help, but she is a LONG ways from being in an institution on a feeding tube.  She could open a bag present like no body's business (it was very fun to watch).  She is starting to walk and we celebrate every step.  I will remember this much more than with the other girls.  I can see the determination and accomplishment with her.  See I have much more with her than I don't, but it is what I choose to focus on rather than what I choose to not focus on.

I think for many of us we take that for granted.  It is their first birthday and they will eat cake, they will blow out the candle, they will open presents.  It is their second birthday and those expectations are there again that they will do it.  But what happens when those expectations can't be reached, when your child may not be able to do it?  I say throw them out...they don't matter anyways.  There is so much other stuff to focus on than someone else's ideals of what should happen.  Or a silly image that you put in your mind of what your child should be.  Look at what your child is and appreciate that.  No matter where you are...Holland, or the United States; it's just an image, nothing that describes your child.  You still have the pieces there, they just fit together differently (and really with each kid isn't that the other daughters are not the same by any means).

We have so many analogies to help describe this, but I think until you can come to terms with it for yourself, in your life, with where you are at....nothing really makes sense.  It needs to click for you.  And, just like everything else, it will happen on your own time line.  For me it was her second birthday.

Maybe it helped that we were in the store and a lady came up to wish my daughter a happy birthday (I had Lydia in a birthday shirt).  She said that it was so exciting that we were celebrating her first birthday.  I said it is her second birthday.  She looked at me and asked me if Lydia was stupid or something, she continued and said that there is no way she can be two because she cannot understand, she is small...and I guess in that woman's eyes that made my daughter stupid.  Does it really matter?  Do I need to prove something to her?  No...but it hurts.  The sting seems to lessen every time I hear that.  But that is what makes us tough and unfortunately that is part of the journey. 

It is the same as a family member who will not stop using the R word around me.  I hate it...there are so many other words you can use to describe what you are describing without using that word.  But does that describe my daughter...maybe (after all that was the medical term that use to describe kids like Lydia).  I realize that it is not PC anymore and the R word has taken on such a different meaning.  But does it matter?  The sting  is still there, but that does not describe her and I know that.  I know that family member is not intending harm and certainly is not using it in a way to destroy my daughter.

I guess, the sting is always going to be there.  It is always going to sting a little to realize that my daughter is behind, that she may not quite be like the other girls.  The sting is always going to be there when I hear someone say something negative about my daughter, when I hear certain things.  But if I throw out those expectations, if I live by Lydia's standards I think it is much easier.  If I put aside my expectations and realize that this is where God has me, I can enjoy it.  I can appreciate it.  If I realize that I still have all of the puzzle pieces, they just fit together differently, I can appreciate what I was given and truly enjoy it.

I always have loved and appreciated Lydia, but things are hard.  It takes time to truly appreciate where you are at, what you have been given....even if you never wanted to give it up in the first place.  I have realized that the expectations for my children that I created in my mind just hold me back.  I want to realize God's expectations for all of my kids, I want to love all of my kids for who they are, I want to give my kids a safe place and teach them about God and the other important things in life (relationships, accepting others for who they are...).  The material things don't matter.  Does it matter that she can't walk at the age of two?  No.  I love her still the same.

I am where God wants me to be.  She is exactly where God has created her to be.  If others can't accept it, I can't do anything about that.  I can continue to educate and advocate for her.  That is what I was designed to do...that is where God wants me to be and that is all that matters.  I can stop searching for other things, I can stop longing for something that never was and I can enjoy this gift, this miracle.

And when I look at it..she is no different than you or me.  She excels in some things and struggles in others.  We all do.  I don't see anyone but Lydia, my daughter. 

Thursday, July 25, 2013

Happy 2nd Birthday Lydibug!

My mind keeps wandering and my fingers want to type.  In my mind I had a tribute to Lydia's second birthday all figured out.  I sat to write, and there was nothing.  I keep on trying to figure out how you put the last two years into words.  How do you describe this journey that we have been on?  How do you tell someone what Lydia means to our family?  How do you tell someone what God has done?  How do you?

I don't really know.  My mind is blank yet full of stuff.  I am elated yet sad.  I am proud yet secretly I am ashamed at my feelings.  I am still trying to work through that grieving process.  It is not the same to have Lydia turn two as it was with the other girls.  There are things missing.  But all of those missing pieces have been replaced with new ones, great ones.  Yet, something still makes me hold on to those missing pieces from the other girls.  She is not them, she is Lydia. She is wonderful.  She is my daughter.

I really am all over the board with emotions.  At any minute I think back to what was happening at this time.  At this time two years ago, they were placing my epidural because the likely hood of me going by C section was great, but I wanted to try not to.  In a couple short moments they would come to break my water...that was a process that I would never want to repeat.  Painful and scary, funny and just really gross that there was that much fluid (sorry for the details).  But through it all, the surgeries, the scary days, the tears, the heartaches, the longing for normal; there she sits.  My beautiful baby that has changed me, that has taught me so much.  She does her own thing, just as Ellen and Allison.  She dances to her beat, not anyone else's.  She loves life to the fullest, she loves her sisters and her parents, she loves her cousins and her aunts and uncles, she even loves the stranger at the store and often times reaches out to hug them.  She proves to everyone over and over that she is one else.  I the mom that God chose for her.  I am the mom that God primed for her.  I am the one that carried her, she knows me inside and out.  I am the one that God blessed.  I am so blessed because of that.  While the world may cry out and say that she is out of place, that she looks weird, that she is different...I would argue you to my grave.  Look at her...she is perfect and she makes our family whole.  She has taught all of us, we are stronger, we are better, we love harder, forgive easier, and enjoy every minute because of her.  She is my perfect daughter, as is Ellen and Allison, and I am blessed.

So maybe that made my fingers happy today.  I just can't quite put into words everything that she means to me, our journey and the joy despite the pain.  The learning experiences and how she changed me despite what a prenatal diagnosis said, despite what the world says.  They don't know...they are scared of being changed, scared of the unknown...but I think it looks pretty good.  I have been very blessed by the joy of motherhood.

I put together some videos of our journey over the past two years.  It was fun but extremely hard.  To see where she has come...I am just so proud.  She has so many battle scars that tell her story, that make her who she is, the pain is gone, the wound is healed and she is a survivor.  Happy Birthday my sweet little girl.

Wednesday, July 10, 2013

Percolating Love

I find myself wandering back to two years ago and reflecting on a life that I had no clue about.  On a life that had a new label, but I couldn't begin to understand what that label meant.  A life that I was so excited about but yet so scared.  I loved this child more than anything, but what would it mean to have a child who has Down syndrome?  What new things would we encounter, could I handle it, what would her life be like, how would my other girls adapt, would my husband and I be able to make it through?  A picture I just could not understand, one that I was scared and yet excited.

Two years later, the questions have changed.  My outlook so different now.  That prenatal test of Down syndrome really means nothing.  There is no way to put a label on your child and describe them before you see their potential; before your child can even realize their potential.  All a prenatal diagnosis means is there may be some health risks and you are in for the ride of your life.
I say ride of your life, because Lydia has taught me things that I am so blessed to have learned.  Lydia has taught me about life and love.  Today I was holding her and I just shouted and danced with her.  I wanted to squeeze her so hard because I love her so much.  I have been struggling lately and all I need to do is see her smile and instantly I am a new person.  My heart melts every time she interacts with her sisters.  To see the love they have for one another is simply amazing.

My heart loves in ways that I never imagined I could love.  My love for others, the way I look at things now has changed.  And it is so awesome.  She loves me with her whole heart.  She feels things just as I am feeling them.  She cares for me and it shows.  She gets upset with the other girls are yelling and fighting.  She makes sure everyone gets hugs.  Even at age two, there is just something different.  She knows when someone is hurting or happy and her goal is to make everyone happy.  It is a breath of fresh air from living in today's society!
One of my prayers for Lydia is that she would know God, that she would have a personal relationship with God.  I chuckle every time I say that because I just feel that there is something different about her.  She has taught me about faith and love and God more than anything.  She has the joy of what I have to say the Lord in her already.  I know she has to believe that she is a sinner and understand that she needs God, that the Holy Spirit needs to help her, but it is just funny to me sometimes because she seems like she has that all figured out.  I have lived 33 years and I am only understanding that now.
I feel at times I am percolating with love.  Love is just spilling out of me and sometimes I am not sure what to do with it.  I hug her and I dance with her.  All of us girls embrace and often times sing.  I know, sounds like something out of the Sound of Music, but it is true.  There are more happy times than there are times of tension or anger now in our house. 
Don't get me wrong, we have had our share of times when life was not perfect.  But even at those times, she taught us about faith.  She showed us how strong she was and what a fighter God created her to be.  She has stretched us and made us grow.  She has done things in our lives that no prenatal test could label.  Just like our other kids, she will grow into her potential and surprise us.  God has great things in store for her and no label will stop her.
The love she has taught me about is more than just a feeling.  It is a sacrifice.  It is a constant choice to make.  The past couple of weeks I have been exhausted and tired.  I have been questioning if I can continue doing this.  But that is what true love is, not thinking about yourself and doing for others.  We had the best example of that when Jesus died on the cross for our sins.  He did nothing wrong, yet He endured the worst pain possible, just to save us, people who don't deserve that.  While my love is nothing comparable to that, I have gotten a taste of that.  I still am very selfish, but I battle it now, knowing that I am starting to understand true love.
So this love that is so amazing to me, this passion I have for my daughter is sometimes shadowed with how our society works.  Even though I know that earthly things don't matter, that prenatal diagnosis puts Lydia in a category that I wish she would not have to be in.  She is developmentally slow.  She may not reach the potential of my other kids.  She is labeled and often times to just get things that the other kids were handed; there is a fight.
This is the part of the diagnosis that I was unprepared for.  This is what has hit me and has shaken me and I have a very hard time of accepting.  We label kids like Lydia, we put them in a classification and we study them.  Even though we are all smart enough to know that every child will learn at their own pace, we still label.
Going to a meeting hearing about how behind your child is, is probably one of the most heart wrenching days I have to endure.  I don't need specialists to tell me that.  The neighbor girls is really good at pointing out to me that the one year old baby is already walking and talking and Lydia, who is two, cannot do those things.  I am in the store and someone comes up to me and tells me how small my child is, or asks her age and says how far behind she is...just by looking at her.  I hear it all over, I don't need to pay someone to tell me that.
I do realize that there needs to be a base, I do realize that some of her "inventive" ways of doing things are not the very best for her joints and so forth.  I do understand this, but sometimes there just seems like a better way.  Sometimes there just seems to be a way to support a parent better than beating down the one thing this parent loves more than anything.  I don't want anyone to say bad things about Lydia or any of my children.
And I know that the intentions are very good, but sometimes I just want to break free.  I want to run to a place where there is no judging of my child, I don't hear how far behind she is, I don't have to be scared of her medical issues.  I want to find that place where our love can percolate for one another with no worries, no boundaries, no strings attached.  Most often we can in our home, but I hope you are getting the point that I am making.
Lydia has two appointments next week and that HUGE knot is already forming in my stomach.  I have been worried at least for a year about her going to school.  She does not have to do that until she is three.  But our school district wants to put her in their daycare.  That is not going to work for our family.  These are the kinds of things you need to worry about and educate yourself about when you get that prenatal diagnosis of Down syndrome. 
I realize that if I put my trust in God, things will work out just as they always have...for the best!  However, I can't get rid of this knot, this feeling that society does to us.  The way society has it all laid out.  Sometimes I feel like they want to conform her to what they think instead of helping realize her potential.  Sometimes I feel like they are more worried about what she can't do than what she can.
She may not be able to string those beads, stack those blocks, but she can make you laugh.  She can entertain you for hours.  And don't for one second think that she is not capable, because she has more determination than an Olympic athlete.  She will work for hours, days to accomplish a task.  She will out smart you in a second and then laugh at you!  So what is important?  Is it important that she accomplish all of these things, or is it important that she realizes her potential and how to unlock it?  How is that accomplished? 
I don't have the answers for any of those questions, and I am sure that I will battle against them most of the time raising her.  But, I will choose to win this battle.  I will choose to let my love percolate over and be the determining factor against all of these things.  I will protect her from hearing that she has not accomplished this or that.  I will show her and allow her to discover just what God has planned for her.  God entrusted me with her and that is my duty to her and all of my children.
So as the knot forms in my stomach, making me grouchy and irritable, I will pray harder and trust God will allow me to win this battle.  I will have to get some thick skin to accept that this is what God has planned for me.  I will accept that this is how society deal with it, but it will not win in our house.  We will continue to push her and encourage her and watch God's amazing plan unfold.
****I just have to say that it is not all bad, but it does bother me.  This is what is on my heart as we are on the eve of some of these appointments.  Having to stand firm in the amount of services she gets, hearing that she has not accomplished this goal or that, or trying to set goals for her is really hard for me.  Watching her not perform the tasks that she can do because she is too busy socializing is very hard for me.  They do grade her based on what she accomplishes in the three hours they see her...not a fair or accurate judgment.  I do realize what they are doing...I am just stating my point from being a is hard.  I know there are years ahead of me that it won't get easier either!