Monday, June 24, 2013

Including No One

This past weekend I attended my sister-in-law's baby shower.  It was such a great shower.  But I had these feelings that I have not been sure what to do with.  I want to be honest with myself about these feelings and in some forms of my life, I fear that I may always run into things that I will grieve, that simple things may strike a "hot-topic" for me and cause these odd feelings to happen again.  I find myself in two places sometimes, loving my life and longing for normalcy.  I find myself head over heals in love with Lydia, but just wanting those normal minutes of her baby-hood like I had with the other girls.  I am overtaken with fear at times about what the future holds for her and what life will be like.

I am so excited to welcome a new nephew, but I have to be honest that every time I see someone pregnant or with a little baby a tiny bit of jealousy comes out.  I relive our past two years and I grieve a little more.  I picture a dream of having a baby and having people come to the hospital to welcome this new life.  I picture a dream of showing my baby off to my friends and family and attending church.  I picture a dream of enjoying the other girl's activities with no stress or worries; just a carefree life enjoying my children.

My reality is a bit different from that.  However, it is not bad, just not where that picture once was.  My reality is a bunch of doctors and nurses, being confined to a small space, often times looking down at my child with a tear (well many tears) running down my face praying that my child will make it.  The medical issues where great, the fear was high, and the picture of my dream was crushed.  However, my journey was a new one; one that I could not imagine because it was so wonderful.  There was pain and hurt (no one likes to include that into a dream, but it is a reality), there were teaching moments and lessons to be learned.  There was joy in many different ways...but it was so far from that picture of a dream I had in my head.

I hate that jealousy feeling, I hate that I feel like that.  Why?  Because I love her for who she is.  If she did not have her extra 21st Chromosome, she would not be Lydia.  I would not be me, my children would not be themselves, my husband would not be who he is.  My life would not be this amazing roller coaster.  But that jealousy seems to creep in a little bit each time I see a baby.  That wonder of what if seeps into my mind and off I go wondering what life would be like, instead of embracing my life for what it is.

While I have embraced this life and I love it, I do think that for sometime that grieving process will still be part of my life.  While I feel blessed and know that God chose me to be on this journey, my selfishness takes over.  I struggle with that.  I would not change anything, but I still have those odd feelings (sorry, such a broad term, but I just don't know what to call these feelings).  It is so hard to admit selfishness and jealousy and grief, but I do think it is natural and part of the process.

As I have prayed on this over and over asking God to rid me of these feelings, one thing comes to me over and over.  Our society.  I love her and accept her for who she is.  However, the fear of society rejecting her over takes me.  When I sat on the floor at the baby shower and her scares were showing and she was much further behind in development, I felt like I had to explain her, like I had to say it was going to be OK.  No one made mention that she was "different" or there was a problem, but because of that fear of what society may do, I felt the need to apologize.  Why?  Ugh...I HATE that. 

When we are in our home, our safe place, life is SO good.  She constantly makes us laugh.  She always looks to her sisters for validation and how she can make them laugh.  She completes are family.  She is no different than any of us.  She is a beautiful daughter just like my others.  But we get out of the safe place and I struggle with it at times.  I become consumed with fear that I did not even know that I had.  I become consumed with protecting my daughter when there is nothing really to protect her from other than this horrible stereotype that may or may not be.

Maybe I am just too sensitive, but these are real odd feelings!  I am addressing them because I am sure someone somewhere I has felt them too.  They are really hard to verbalize.  I want to dismiss them, but I don't want to feel like that every time we are out somewhere.  I am proud of her, I love her, I think she is going to do far more amazing things than I can dream of. 

I will take a tiny step back right now and acknowledge that I understand many of these "issues" that are holding us back now are medical and Down syndrome.  I realize many folks with Down syndrome have some health issues but the reason we have to be protecting her is because of the hospitalizations and surgeries and risks...not because of the extra 21st Chromosome.  Does that make sense?  It is clear in my mind, but I feel like it is about as clear as mud when I write it.

I am so excited for my sister in law and in no way, shape, or form am I jealous at her or anything like that.  I think it is a grieving process that I did not get to experience childbirth and Lydia's first months like I did with my other children.  That I had to watch my child endure such painful procedures, that I had to wonder if I would get to bring my child home.  It is like something that brings me the greatest joy also brings me the most sadness.

And yet, I think of the promises that God gives to us.  He is faithful and just.  He will provide what I need when I need it.  I never thought I needed Lydia either; and she has saved me in so many ways.  She has brought joy to my life that I could never describe.  She has changed me in a way that I never thought was possible.  She has taught our family so many life lessons, I am pretty sure that most people will never be taught that many lessons in their entire life.  God is good and He knows what He is doing.

I then get angry at society and why we cannot accept everyone for who they are.  We were ALL born differently.  Some are short, some are tall, some have white skin, some have black, some have blue or green or brown or hazel eyes, and some have eyes that have all kinds of colors.  We say we embrace everyone and their differences when in reality I think we don't embrace anything different than me.  I try so hard to get more money so I can be like that person or have what that person has, when really I am blessed more than I deserve to be.  I have the greatest riches of the world and forget about it on a minute by minute basis. 

I do believe that on many different levels this is a fight that we have been fighting for a long time and is one that probably will never be solved in my lifetime.  It is one that will be around for a long time, there will be many debates and arguments and it will never get solved.  But I can educate and I can push forward.  I can be proud of my children for who they are.  I can teach my children the values that God wants us to have.  To embrace truth (the Bible) and to love their neighbor.  Maybe if more parents would do this, we would not have this issue?!

God created Lydia perfectly in His sight.  He knew exactly what He was doing.  Without her, I would not know love as I know it today and I believe I am much better because of her.  I would not know how to fully live.  She has a purpose, just like you and I.  She deserves no less than you and I.  She has a beating heart, a fighting spirit, feelings and a desire to make other people happy.  She wants to learn and explore, she wants to be loved and she LOVES hugs.  See, when you boil it down to the things that matter, extra Chromosome or not, she is no different.

This afternoon as she sat on my lap, I realized that she did not have the choice in being born, she was created just the way she was.  She can't help that God chose her to have an extra Chromosome.  She can't help that God wanted her to be special and teach others what love is.  You see, it is cruel and mean to treat someone in that manner, to classify them based on something that they had no choice in the matter.  She does not deserve that, no one does.  Sometimes it is just a mean and cruel world.

These odd feelings feel like they have more of a place, like something that I grieve for her because I am a mom and I want to protect her.  I don't want to have people make fun of her, I want people to understand her.  But, that is not what life is about.  It is about learning to live in the skin we have.  She does that every day and she does a beautiful job of that.  I am glad that I am able to address these feelings and share with others. 

It is a tough road sometimes.  There are many days that I fight with God and question if I am really able to handle this.  I ask if He really knows what He is doing.  But God is good and He does.  I need to continue to trust.  Just as He has seen us out of some dark days, just as He allowed me to bring my baby home, just as He has allowed Lydia to beat all odds, He will continue this good work He started.

Acknowledging the odd feelings and dealing with them so they don't get the best of you, is very important.  While I still have to get use to the "unsafe" places with Lydia, I have never been so proud of someone before as I am of her.  Down syndrome or not, she is perfect.  I will fight and I will educate and I will try to be the very best parent, with God's help to bring honor and glory to Him.  He gave me this precious gift, this miracle and I will do everything to love and share her testimony.

Monday, June 10, 2013

What Does It All Mean?

It is almost two years since our prenatal diagnosis with Lydia.  At 20 weeks my markers came back higher indicating there was a "risk" of having a child with Down syndrome.  I remember getting off that phone call and just sobbing.  My husband had just come home and he sent the other kids out to play.  He held me and we just we just cried together.  Looking back on it, I am not even sure why we cried.  We did not cry for a long time, but we cried.  It didn't take long to embrace the fact that our child may have Down syndrome, we were actually really excited about it.  However, I have to say that we had the wrong picture of Down syndrome.  We had the typical one; you know the one where they are always just so happy and fun to be around.  We never took into account the medical issues, the appointments, the stress, the finances, the extra things, the dynamics of the family (and let me point out here, they are not all bad...but nothing else was considered other than the typical stereotype).

I remember at the end of May 2011, I was on my hands and knees in our yard picking up shingles and nails.  I remember my belly hitting the ground before my hands did.  It was hard.  I really did not want to complain, but I was unsure how I would continue like this for about 3 more months.  My husband and I had always discussed pregnancy and the blessing it was.  We never wanted to "stress out" about the due date, so we often times tacked an extra two weeks on there.  Even though I was uncomfortable, we understood that God had His timing and we would trust that.  So, I really did not want to complain.

Towards the end of June we traveled North with my in-laws.  We stopped at a flower shop to look at these GIANT planters.  We wanted to take pictures to send to Eric's grandma.  However, in one of the pictures, I am turned sideways next to the planter.  I was much larger than this planter that would take two people to hug.  What a wonderful thought that it would take more than two people hugging me.  This was my third pregnancy so I knew that it was not completely normal to be this large.  Surely I had two little ones in there. 

I went into preterm labor on July 4.  They were able to stop it.  The doctor on call kept asking my why I was so big.  I told her that I did not know.  We had an ultrasound scheduled for the next day.  She kept asking, grilling me.  Then she mentioned Down syndrome.  My reaction was "so what"...but it bothered me.  She kept on.  I said that she was more than welcome to page my doctor and ask him the questions, I was explaining things as I was told.  That night, my husband and in laws and girls got to go see fireworks, I sat at home resting.  This would be the first of many separations for our family.

The next day was my husband's Birthday.  We had our ultrasound first thing.  We knew something was not right.  All they told us is that I had a TON of amniotic fluid and they would have to refer us to the Fetal Concerns Program in Milwaukee.  The ultrasound tech kept telling me that our baby's heart was just fine.  Ugh. 

Now we would have to wait.  However, I just could not.  I called right away to Milwaukee to get the appointment set.  Most of Eric's birthday was spent on the phone getting this appointment set up.  However, we were able to get one for the very next day.  I would not have to worry for too long.

We went in and had the ultra sound done.  They had to call in the doctor a couple of times to look at things.  It was long and I was uncomfortable and it was hard to lay on that table.  But we were able to see our baby, and a lot clearer on this ultra sound, and that was just fine by me!

The doctor came in and introduced herself and said that there is really no good way to say this.  Our baby has a heart defect and they do not detect a stomach.  They also said that I had probably just about the most amniotic fluid they had seen before.  They wanted to do a reduction and then I would have to be admitted to the hospital and most likely would go into labor.  But I was only 34 weeks along...I was not ready for this.  I sobbed and sobbed.

I asked if she could leave the room so I could pray with my husband.  I did not know what to do?  We prayed and prayed.  I remember calling my mom and asking her what to do.  How could I make such a decision without the advice of my mom?  But how could she provide advice when she was just as shocked and she had never been in that situation before.  But hearing her voice just provided comfort.  We also called our Pastor and his wife and asked advice.

That night I would be in labor for several hours.  I did not believe it.  I could not accept it.  When the NICU doctors came in to meet me, I said that I had an appointment in the morning and I would see them then.  However they said that I will most likely deliver baby tonight.

The next morning we learned that we were having a girl.  I had never found out with the other girls, but I was pretty much sure that I could not handle any more shocks.  I was shocked, I was pretty convinced we were having a boy.  I was so excited.  We also received the confirmation that our baby girl has Down syndrome, that her 21st Chromosome had one more than the usual two.

They also rushed me in to have an Echo done.  That was uncomfortable, and scary.  We were not sure what we were looking at on the screen.  No one was talking to us.  We had a whole lot of information to take in.  But in the end we found out that our little girl would have an AV Canal.  It was common and they were positive that they could fix it.

We met with the general surgeon and he said they would not be able to tell us what her diagnosis was until she was born.  They went through a huge list of possibilities.  One of the rarest ones that he went over with us, actually he told us that we did not have to worry about that because more than likely he was positive it was not....esophageal atresia.  We would not get the diagnosis until day two of life when she would have her first surgery.

The next couple of weeks were a blur.  I had to have my parents come and babysit me.  Preparing to have a baby when I was over an hour away from home seemed like an impossible task.  Little did I know that on the morning of July 25 when I would walk out of the house, I would not return for almost 6 more months.

We had her, Lydia Ann (we let her sisters pick the name so they could be more involved and had more ownership of their sister).  The room was filled with people.  Almost so many that my husband did not have a place to stand.  I begged for them to let me hold her before she was taken from me.  They allowed me one minute with her.  That minute the world stood still.  She was crying when they handed her to me and as soon as she was in my arms she was quiet.  We had a bond already and she was perfect.  Her tiny fingers and toes, her button nose, her beautiful eyes (we are still unsure of the color...but they are to die for!), her cute mouth and soft cry.

Just like that she was gone.  They did not even tell me how much she weighed or how long she was.  I had nothing to baby, no nurse, no husband...nothing.  I was alone in a cold hospital room.  My in-laws came in just minutes after.  There was no word on how my precious angel was doing.  All I could think of was getting to her, holding her, savoring these sweet moments with her.

They finally let me go down.  Moments after I peered over the bed, nurses were rushing.  I couldn't understand, she looked so perfect.  I was bleeding, I was hemorrhaging.  They immediately ran me back upstairs and had to fix me.  My mom was by my side and my husband came shortly after, with my in laws staying next to my sweet baby.  They finally got me stable after a couple of hours and 18 hours later Lydia was in my arms.  One of the sweetest moments.

In the next couple of months I would learn what true love is.  I would learn how to love in the hardest of circumstances.  I would learn how to have faith that could move mountains.  Trying to battle kids in different places, a marriage with my husband while he had to work (money had to be made to keep paying the bills).  Decisions had to be made with our baby.

With the help of both of our mothers, they stayed at the Ronald McDonald House to watch Ellen and Allison while I spent most of the days and nights at the hospital.  I had to learn about my baby, I had to know what was going on and I had to protect her.  She needed to have a bond, hear her mom's voice and have some kind of constant care.  While we had the most excepectional nurses, it is not the same as mom.  The hospital can be a scary place sometimes.

In the next couple of months we would endure some of the hardest days of our life.  Handing our baby over to our surgeons for MAJOR surgery.  We would now know the outcomes, but God was already here; He knew.  We had to have faith and trust in God that He would carry us through.  Watching as you daughter lay there, completely lifeless, not breathing, monitors straight lining and completely helpless.  Trusting that God brought the right doctors and nurses to work that day who could care for your child.

The next couple of months would lend hand to some of the best experiences.  We had pictures taken, we were able to take our baby for her first walk, and she would even meet her cousins for the first time.  We would be featured on a radioathon.  The girls would be able to attend many things that we could not afford to do because of the generosity of other people.  We would make relationships that were life long, meet some of the most amazing people.  Our marriage would grow in ways that we could not explain.  Our children would learn some of life's hardest lessons along with some of the greatest joys they would ever know.  Our life would not be the same, but we were changed.  We understood the meaning of love, sacrifice, actions, words, and how to enjoy every second of every day.

Coming home would be one of the best days of our lives.  Learning how to handle Lydia at home would be very challenging, but what we learned in the hospital, how our faith had developed, would get us through.  Many, many days of loneliness and isolation would set in.  Watching as some of your best friends would walk away, but in their place new ones would bloom.  Lasting ones, ones who are there because they love you and accept your family for who they are...all of them.  Worry and fear became part of my every day.  However, there was a peace that helped me that came from God...He had took us through the days of the hospital so I was able to get through some of these hard hard days at home.  There were no nurses to interfere with taking care of your baby, no doctors to page to ask questions, and no other support people who were available to talk to or encourage you.  Life was different, but God helped guide us and gave us strength to tackle this mountain too!

Weight issues, feeding issues, health issues, keeping Lydia protected from germs, making sure she did not throw up and aspirate, feeding tube and the decision of when to take it out, family dynamics, marriage strengthening, leaving Lydia with a qualified sitter, having her be able to be away from mom without crying herself into a panic, traveling...these are just some of the bumps that we had to plow through.  While there will always be a hurdle to get over; there seemed to never be a break for quite a long stretch.

Looking back I see how God's Hand has been guiding us and directing us.  He has given us very specific challenges and obstacles.  We have failed miserably through them, but we have learned and we have come out stronger on the other end.  It has been amazing to watch His Hand at work in our lives.  He is one amazing Creator and He certainly knows what He is doing and what I need better than what I know I need!

There are days when I want to point my finger and shout at people to explain to them who Lydia is.  There are days when I am just filled with joy because God has blessed me with this amazing daughter.  There are days when I am so overcome with these emotions from this ride we have been on that it is hard to pick myself up.  There are days when I can't stop staring at my girl and think wow, I was chosen to be her mom.  There are days when I feel like I need to educate everyone on who Lydia is...she is not Down syndrome, she is the most amazing little girl who will capture your heart and teach you more than you thought was possible.  Most of all, I just need to find a balance in her, but I am so overcome with who she is as a person that it is hard to not want everyone to experience her.  But it is my journey and I was blessed enough to experience it.  So I write to try to explain it, trying to keep in mind that no one every will quite understand, but that is OK.

In conclusion, we found out today that she reached a new milestone....she is now at 19 pounds.  It is a HUGE day for us as she continues to gain and eat well.  It is huge because we have been able to finally see a little light at the end, to experience a routine and Spoor normalcy in our house.  What an amazing feeling that is.  We understand that the next valley is most likely around the corner, we don't take this mountain top experience for granted by any means.  All of this is what it means that she met this milestone of 19 pounds.

Psalm 28
To you I call, O Lord my Rock; do not turn a deaf ear to me.  For if you remain silent, I will be like those who have gone down to the pit.  Hear my cry for mercy as I call to you for help, as I lift up my hands toward your Most Holy Place.  Do not drag me away with the wicked, with those who do evil, who speak cordially with their neighbors but harbor malice in their hearts.  Repay them for their deeds and for their evil work; repay them for what their hands have done and bring back upon them what they deserve.  Since they show no regard for the works of the Lord and what his hands have done, he will tear them down and never build them up again.  Praise be to the Lord, for he has heard my cry for mercy.  The Lord is my strength and my shield; my heart trusts in him, and I am helped.  My heart leaps for joy and I will give thanks to him in song.  The Lord is the strength of his people, a fortress of salvation for his anointed one.  Save your people and bless your inheritance; be their shepherd and carry them forever.

Tuesday, June 4, 2013

Accept What?!?!?

Through this journey I have leaned a lot about acceptance.  It is hard and most of it that I don't understand.  As God has gently reminded me a lot lately, it is not about understanding but TRUST.  TRUST in ME and I will guide you; I will not allow you to stumble.  However, that does not mean that the path will be EASY or without many hardships and heartaches.  It means, my FATHER will ALWAYS be there.  He has my VERY BEST at heart and knows what I need, exactly when I need it.

I think that is so hard for me, I like to have control.  I have gotten much better in this journey because there really has not been one element of this that I have been able to control.  While I would have never imagined my life to be on this journey, I could not imagine my life without it, I would not know who I am.  I have been stretched and challenged, changed and I have stumbled over myself many times.  I have failed and I have succeeded.  I have learned and I have just wanted to crawl under a hole until the hurt and pain went away.  However, if it were not for each and every one of those moments, I would not be who I am today, I would not have an understanding of how trust and faith work.

A friend reminded me the other day that God disciplines those He loves; those who are His.  That is how we grow, how we learn, how we become the person He designed us to be.  I do that with my children.  I feel that I am called to raise them according to the Word.  However, our natural bent is sin.  So, as a mom, I need to correct behavior, punish, and teach.  That is my job.  I have known that He disciplines those He loves, but never thought of it quite like that.  I don't have to like it (trials and challenges that just hurt and are hard) but from every situation I have walked away better, I have learned.  And sometimes I don't learn; maybe I was not ready, maybe I was a stumbling block in my own learning, or I was disobedient because I did not like the lesson.  Whatever it is, we should feel blessed that He is disciplining me, that He is allowing me to learn and grow.  (*I try to tell my kids that; they don't feel the same, but hopefully I can teach them that so they will not be so devastated when the storms come; and I know they will!)

Since the diagnosis of Down syndrome it has been a battle of acceptance.  It has been a case, mainly, of myself not wanting to accept something that I did not know, I did not understand.  I am listening to the world of what Down syndrome is (or is not) and not realizing that God is giving me exactly what I need.  And, after time and adjustment, I have to say that Lydia has saved me in many aspects.  She has taught me and stretched me.  But mainly she has taught me what is important in life and what love is all about.  Things I could not have learned unless she was in my life.  I did not know that I needed to learn that; I thought I already had!  Thanks God for the BIGGEST blessing of my life, learning the things you have to teach me through Lydia. 

The hospital stay.  No one wants to have their newborn baby in the hospital for anymore time than they have to.  However, God said you need to be in here for over 5 months.  In that time He taught me so much.  I think I fought it just about every day.  Thoughts of if I just could take her home and bring her back later.  The told loss of control and being dependent on someone else to provide for your child was hard for me to swallow.  I look back now, after her recent surgery, and think what a blessing it was to get it done during that time.  She was easier to have in the hospital, we never had to get home and settled in and then adjust.  It was also a HUGE growing time for me.  I found out more about who I am and who God wants me to be.  I had to accept the fact that this is God's plan and I need to trust and follow, obey and give glory to HIM no matter what!

Handing her off to surgery.  Accepting the fact that you will not see your daughter as you know her to be for a long time.  Accepting that your daughter may not make it out of surgery alive.  Accepting that this is what you have to have done for her...there are no other options.  As nervous and as hard as it is, I had to accept what God had for me.  I could question, kick and scream, say that it does not make sense, that I don't understand; but none of that was going to change the course.  I prayed and I asked for what I thought was best, but I knew God would answer it the way He had planned. is hard.

Accepting that Lydia may always have challenges to eat is very difficult for me.  I want to push through, I want to get to the next hurdle and put this one in the past.  However, I have been fighting it for a long time.  We have advocated (I think well and pleasing to God)to get her where she is at.  We are at this point and I have to trust that God will continue to carry us.  I have not gotten a clear picture as to what He would like us to do; so I try to feed her my very best at each meal, praying before that He would watch over and bless this meal to her benefit.  I remind myself that we are not running the 50 yard dash, but we are in a lifetime journey.  I was warned early on by our great surgeons that this may be the case.  I have read other families stories (some struggle harder and some don't struggle).  But she has accomplished many things that I thought she might not and I have to rejoice in those.  I have to be thankful where we are at and continue to seek God's guidance on where we need to go.  But in the meantime, I need to accept where we are at; I need to rejoice and give thanks.

Acceptance is a hard thing, but it is needed to carry forward.  I don't have to understand my situation, I don't have to agree with it, but I need to accept it and make the very best of what I have been given.  I need to trust that God will continue to carry me and show me what He has planned.  As I look back on our journey, Lydia was exactly what I needed, but I had no clue.  She saved me in so many ways and I could not have wrote that journey, even if I tried.  But I am a better person because of it. 

I may understand acceptance better than others because it is part of my life, it is part of the journey that I need to know in order to keep going.  While not every one may understand acceptance as I do, but it is my job then to share my story and show acceptance towards others.  If I want others to show acceptance towards Lydia, I must model it.  I know that I had no clue as to what acceptance was before I had her, before I was on this journey.  I understood it to the point that my experiences allowed me to.  Now that it is part of my journey I understand it to a different degree.  So, I believe, that we are to share our experiences and teach others.  Not everyone will understand the way I do, as not everyone has had the same experiences, but I can help other do a better job in acceptance!

I would encourage you on your journey to accept where you are at.  Do your very best to accept your circumstances rather than try to understand them and allow God to carry you.  I struggle with that...but I certainly try.  I know the times that I have accepted where I am at, it has been much easier.  It has not changed the situation but it has allowed me to deal with it better.