Monday, January 21, 2013

What if I can't?

I just wanted to preface this journal.  This is raw feeling and emotion, I am doing this to just let some of the stuff out that I have been keeping inside.  I am not seeking anything from this, I don't want anyone to feel sorry for me, I just really am doing it for me; just to let it all out.  These are really my deep personal thoughts today.  After a stressful weekend and a small break down, I just need to release.  I struggle with these posts because I really am not seeking anything or trying to make anyone feel sorry for me or anything like that.  But as much as I have been fighting the urge to sit down and write, I feel God pushing me to continue to share the journey He has set before me.

With that being said, it was a rough weekend.  I just came to a point where I knew the behaviors and patterns I have been doing are not healthy for me or my family.  I have been playing the pretending game.  I pretend everything is going good, but most days you can find me rocking Lydia and I am sobbing.  I attempt some housework or to make a meal or play with Allison, but stress and this overwhelming feeling of I can't do this anymore, I am not cut out for this journey comes over me.

Lydia's eating has gotten the best of me lately.  I am mom, it is my job to feed my child.  I worked so hard for over a year to pump milk for my baby because I believed it was the very best for her.  I wanted to feel as though I was doing something for her so I pumped, I endured painful infection after painful infection.  Even when the stress was high, I still pumped.  I had a HUGE support group cheering me on.  My husband was super supportive too.  A special lactation consultant was one of my biggest fans along with some awesome nurses.  But that was my desire to feed my child to see her grow and thrive through all she has been through.  I was her mom and I was suppose to be providing her food.

As we transitioned to eating solids, I have become the primary feeder for her.  I have listened to our speech therapists, doctors, nurses, read things, I am part of support groups, to know the very best for her.  Day after day we teach her to eat, I try to be as patient as I can, I try to nourish her so she can continue to grow and stay strong.  She did very well.

Then we had a time when she was not growing so well.  We worked with all kinds of different people to get her to eat.  If you ever enter our house at a feeding time, you will agree that I have gone off the deep end.  I make bird noises, sing, dance, play with toys, wear silly hats, play peek a boo, anything to get her to eat.  I use my other girls to help distract her so she will eat.  My husband helps when he is home.  It has become a family affair.

However, it is taking a toll.  The ups and downs of feeding her.  The ups and downs of watching her not want to eat.  The ups and downs about how the day will go.  With Lydia, she is fed more often because of her new anatomy.  It is hard to continue to feed her and watch her struggle.  It is hard to watch her play games, it is hard to watch her not drink.  Knowing that a lot of her lack of drinking is because of medical problems.

Talking with the doctors and specialist, they always seem to have a conflict of opinion.  So it is my job, and my husband's, to sort through everything and figure out what works and what does not.  She is anything but a typical child and she likes to walk her own line, I think as most kids do.  It is frustrating though when the medical books are written not for your child.  It is frustrating.  So we try different things and some will work for awhile but then you are left guessing.

You want the very best thing for your child, but you are unsure.  The last couple of weeks have been a huge struggle.  Before each meal I pray with her.  "God thank you for another time to feed Lydia.  I pray that You use this food to give her nourishment and allow her to grow.  I pray that you allow her to eat well and give mommy the strength to continue on this path.  But most importantly, I pray that Your Will be done.  If it is the Will to be on the feeding tube, I pray You make that clear, if it is to eat orally, again, I pray you make it clear.  Thank you for all of Your blessings. AMEN."  But time after time I am still left confused and frustrated.  I am unsure of what to do.  I am her mom, I am suppose to be able to feed her.

On Saturday we decided to pull back on the amount of food she was eating and see if that would encourage her to drink a little more.  She ended up drinking less than 2 1/2 oz and eating only about 20 bites of baby food.  FRUSTRATING!  So we decided to put her on the tube.  She has lost a little weight because she was sick and we want to stay on top of that.  We are not sure what is best and she has not had the feeding tube for "feeding" purposes for a long time.  We hooked it up and she just kept on throwing up.  NOW WHAT?  Really, we are keeping the feeding tube in as a back up and we go to use it and it makes her sick.

So we are back to the drawing board to see what to do next.  Another theory about what is going on, but no real answers.  It is getting frustrating.  Who do we call?  Who can we talk to, it is a weekend.  On Monday I will spend my day on the phone, trying to just take care of Lydia and pushing Allison aside once again.  I am sick of doing that.  I am sick of treating the other girls as if they don't exist.  I am sick of not being able to clean my house or make a meal for my family.  It is bad enough that I feel locked in my house to keep Lydia away from germs, now I am just taking care of her.  I look around my house and the mess it is and feel completely helpless.  Not only do I feel like I am a failure at taking care of my child, but my house is a mess, my other child is being babysat by the Little House on the Prairie and I am a mess.

I wasn't cut out for this.  I never asked for this.  We just wanted a third child.  We prayed over this child and though we said a healthy child I don't think we ever entertained the thought of an unhealthy child.  Why us?  Why can't we get a break?  Why can't it just be normal?  Haven't we suffered enough, can't it just be easy for a little bit?  Why can't you come and allow her to feed?  What am I suppose to be learning from this?  Are you still there?  Do you even care for me?  How can this be for my good, I am making myself crazy.

The one thing I loved about being saved is that the Holy Spirit lives in me.  I have these thoughts and then I think of the many blessings.  It does not always take away from what I am feeling, the anger I am feeling or the frustration, but it helps.  It allows me not to dwell in that place so long.  However, since I have kept this in too long, it is a bit longer process of releasing this time.

I remember a time not too long ago that I would have loved having this trial as I sit by Lydia's bedside not knowing if she would live or not.  I would have loved this trial because she was eating...something I thought that she would never accomplish.  I would have loved this trial because we were in the comfort of our own home and not in a hospital surrounded by machines.  Isn't it funny of the things we wish for.  If we could just absorb the moment and understand that it will not last forever, that God is walking through this trial with us, that He has not left us, and as crazy as it seems, it will be for our good.  Those are hard things to accept when you are in the trial.  For me too, it is hard to just let go because I still want to control things.  In the hospital I think that I did better because there were other people there telling me what to do, most of it was totally out of my hands, and I was focused on the task at hand with little distractions.  I don't have that luxury now (never thought of that time as luxury!).  I also feel like it all rest on my shoulders and it does not.  I do not have to cary that burden by myself.

I know that the Lord is still teaching me and pruning me and working on me.  I am struggling and that is OK.  I am not a perfect mom and I don't have any of the answers for what is going on now.  I need to continue to be in prayer, in His Word, and embracing the moment.  I need to to continue to count my blessings and do the very best that I can.  But it is OK to admit that I am struggling.

I realize that this situaiton is far beyond what most people can understand.  I don't need people to understand, but I need an ear to listen, a word of encouragement, a Bible verse.  I cannot do it alone.  A hug or a friendly smile is sometimes what is needed to change a day.  I need to remember that as I try to be the Hands and Feet of Jesus.  I need to continue to try to look beyond my circumstance (it has been really hard for me as it has totally consumed me) and be the Hands and Feet of Jesus for other people.  It does take a village to raise our children, we should be lending a hand to help one another out.  I pray that I am able to do that more and more.

I know that my tomorrow is held by God.  So I need not worry.  Can someone please tell my heart that?  I care about her so much and I would do anything for her.  I would do it until I can't.  I felt like I was at that place this weekend.  But talking with my wonderful husband and just being open to God, I feel like I can pick up the pieces and attempt again.  He is my strength.  I don't understand what we are going through and quite frankly I do not agree with it at all.  But I know He is walking through it with me, He will not leave me, and no matter what I think, He has my best interest at heart.  His ways will not make sense to the world, but His way is the only way!

Please continue to pray for our family.  Specifically for me.  I am struggling and hurting right now.  But I know He is holding me and because of that I can continue to put one foot in front of the other.  As I wait for the doctors to return my phone calls, I pray we are able to get some answers.  I pray that I can do the very best for my daughter!

Tuesday, January 15, 2013

Sticks and Stones

I find myself in the quietness of the house.  Lydia is snuggled on her mat sleeping, the sun is shining on her face and all is perfect.  Quietness is something that I have taken for granted, because I am not sure what it is.  I thought that I would embrace the moment and write a little as I am sure it will not last!

The past couple of days have been a little tough on me.  We had two different evaluations for Lydia to base where she is developmentally.  While those things really should not matter, no matter how much I tell myself, they sting.  They hurt and make me feel awful.  Neither one of my other children were tested against things that they could not do and then told how dumb they were.  OK, so Lydia was not told how dumb she is, but maybe you get the point?

I don't understand why the thought process is to compare apples to oranges?  Why we need to continue to hit families when it is an already tough situation.  I understand Lydia is delayed, she may be that her whole life.  Who knows?  My other children could be that way too.  But because of her diagnoses, she is classified and then tested and then put under a microscope as to what she can and cannot do.  It is one of the hardest things that I still have to accept and understand.  Can't we celebrate where she is and look forward to the next milestone instead of comparing her with others that don't have her challenges?  My six year old is not quite reading yet, but they do not compare her with the others and make a big deal.  She is close, she will get it. 

Maybe I am making a bigger deal than I ought to, but those words sting.  Your 18 month old is only testing out at 8 months in her physical therapy skills.  Part of me wants to jump and scream and celebrate.  Do you know everything she has been through, this is a huge accomplishment.  Do you understand her diagnosis and her set backs?  The other part of me feels as though I have failed as a mom.  Why is she not doing better, what else can I be doing?  I am failing her.

It is a tough battle.  I was not prepared for it either.  I had two healthy children, the system does not operate for them in that way.  I still can't understand why it operates this way for Lydia.  I am lost.  However, I keep pulling up my big girl pants and pushing forward.  Fighting back the tears and the emotions, pushing towards what is best for my girl.

I know that it is not going to get better.  I know I have to toughen up now and get use to it.  There will be plans in school, there will be folks who don't feel she is as worth the time as I feel she is.  There will be more obstacles, I understand.  But for the moment I just want to let you know how unfair it is, how horrible of a feeling it feels.  I know that I am not alone, I know many others go through it.  It is tough.  It is a constant battle in several directions, but I look in her eyes and my heart melts.  I know she is worth it and more.  I would do anything for any of my girls, no matter how much the words sting.

I am trying to choose not to focus on how bad those words sting.  I think I would rather be hit over the head by a two by four than hear, constantly, how far behind my child is.  How unnormal my child is.  How much more work she needs to put into her development to get to "normal" standards.  Now, let me stop for a moment, most of our care providers are super in telling us this information, however, we have had a couple that have not been sensitive at all.  It is a constant thing that we do also.  It does not go away and that is hard to hear over and over!

So, I will stop complaining.  I want to tell you some of the things my daughter does.  She makes me smile at almost every moment of the day.  Her smile lights up a room (the other day we were in the store and Lydia smiled at someone.  I asked them what drew her to Lydia.  She said her smile.  I asked if she could tell Lydia had Down Syndrome, and she said no.  I just have always wondered and this simple question opened up a great conversation.  Some people are so amazing.  God blessed with with that wonderful conversation.)  She laughs and plays constantly.  She is stubborn.  She does not like to eat, but she will play with you, she will cover her mouth and she will laugh and play, but you have to be super sneaky for her to take a bite.  She loves to hid blocks in her outfits.  Often times I will change her and find several blocks hiding in her back, just one more thing that makes me smile.  She can do the splits better than anyone I know.  I thought I was pretty flexible when I was younger, but man she is amazing.  She fights harder than anyone I know.  She is more determined than any person I have ever met.  She will work at getting that toy in the hole until she is successful.  Amazing.  She loves more than anyone I have ever met.  She makes sure to give everyone a hug and kiss and smile.  She interacts with people and makes them smile, it is what makes her happy.  She is so many things.  Down syndrome is one of them, but that is truly what makes her her.  Lydia does not know anything else than who she is and I never want her to know anything different.

So I will fight for you Lydia.  I will do the very best that I can.  I will try to guard you from hearing those words that sting so bad.  However, I know that they are only words and do not do justice for who you are.  You are one amazing child.  You have brought our family together, you have taught us so many things.  When we could be divided about eating, you have showed us if we all work together you will eat very well.  We are all so blessed to have you in our lives.  I am sure that you are by far a greater blessing than we ever will be.  But I am honored to be your mother.  I will endure the words and I will know that they don't define you.  You define yourself.  No diagnosis or test can really judge you.  You have potential given to you by God and I am so excited to watch it grow.

I am sure if you do not have a child with special needs, it may be really hard to know what it is like to have your child judged constantly.  However, I think we all can learn something, not one of us can be judged or defined based off anything other than who we are.  Not our looks, not our weight, not our diagnosis, not our physical features, the amount of money we have or the car we drive.  My faith defines me because I was created perfectly in His image.  He is the author of my life.  But nothing in this world can define me.  Praise be to God for that.  May I always remember this lesson, may I always remember what is the most important stuff. 

Even though these days are tough to hear about how far behind my daughter is, I will rest peacefully knowing that she is right where God wants her to be!

Wednesday, January 2, 2013

Love Thy Neighbor

I think this is a pretty familiar commandment, Love Thy Neighbor.  I hear about it all the time about being nice to others and helping others out, we are suppose to love thy neighbor.  God has been teaching me more and more about this.  It is more than just being nice to them, it is more than just extending a helpful hand to them.  You are suppose to love them.

Love is not a feeling but a choice that we make.  I have to go out of my way to choose to love my neighbor.  And what if it is a neighbor that I don't like?  What if it is someone who has done something to me?  I am suppose to love them anyways.  The Bible says we are suppose to keep our enemies closer.  This does not fit with the way of the world.  This is opposite thinking of what the world says.  It is backwards thinking even to what I think I should do.

I have been learning a lot about this commandment lately.  I have struggled with what our tenant is doing to us.  We have opened our hearts to her, we have helped her out, we have bent over backwards for her.  For what?  To just get used and abused?  She has not paid rent in several months and now will not get out of the apartment.  She keeps telling us that we have to have a judge ordered motion to get her out (we are in the process of doing this).  But in the meantime you are living in someone else's place, not paying, and you are OK with it?

I guess I don't understand because I could never think of doing something like that.  I am pretty much law abiding and get nervous about even the small things I do that I believe that I can get away with.  I don't understand how someone can use someone and continue to do it.  I don't understand how you can lay your head down at night and be OK with that decision.

SIN.  That is why.  We are not good people, we are full of sin.  The good things you see, that is God.  It is not because I am good.  I will be really honest, I am not.  The thoughts that have filled my head lately are totally sinful and dishonest.  The things that I would love to say or do to our tenant are not what God wants me to do, in any way shape or form.  God wants me to love her and forgive her.

I am struggling with that.  I have had Eric deal with most everything because I am so angered by the things that she has done.  She has done more to me than just not pay, she has taken things away from my children because she is selfish and dishonest, she has stole from my family, and she has "checked up" on my personal things, using those things for her benefit.  Shame on her.  That is so low and dishonest.  I want to scream and shout and just be inappropriate.

Instead, God is trying to quiet my tongue and is teaching me.  What she is doing is no different than my sin.  I need to learn the repercussions of my sin, not just on my life but on others.  I need to learn how to openly forgive and to give my love away as God has given His away.  It is so hard.  We open ourselves up to give and to show love only to get hurt.  But we must not let our emotions get in the way, we must continue on. 

My heart will be guarded for the next tenant and there were lots of lessons to be learned, things that we will do differently.  However, I must find it in my hear to forgive and move on.  I have been able to pray for her.  I have been able to start to ask for forgiveness.  We may never see another dime from her, even if we take her to court.  We will try to exhaust our resources that we have available to hold her accountable for her actions.  However, I must forgive her, I must continue to love her.  I am failing at that.

I thought I was doing good, until she e-mailed me again this morning.  She just does not care.  It does not concern her that she is stealing from my family.  It does not matter to her that she is illegally living in someone else's house.  It does not matter that she has not paid.  She is only looking out for herself and her benefit.  She is tied only to her.  Her actions hurt others, her actions are unkind.  That is sin.  I must forgive it because Jesus paid the price for me so I could.  He suffered so I could forgive and spread His love and Word.  I need to be obedient to Him.

I have to say that it is difficult too because it is money.  Money really is the root of all evil.  She is digging into something that I probably pride more than I should.  While money is tight, God has always provided for us.  Our bills have always been paid and we have been able to honor our word in saying we would pay this money back.  I have to not concentrate on the money, what we would have had, or what we are losing, but on all of my other blessings.  God is so good.  Our family is healthy, we have all 5 of us together, God has allowed us to be at home for the Holidays, when so many people are sick with the flu and respiratory infections, He has guarded our home for the time being and allowed us to be healthy.  He has provided my husband a good job, health insurance, I am able to stay at home with my children.  Ellen goes to a great school as does Allison.  We have some of the most amazing support people we could ever think of.  Our church family is supportive and encouraging and Ellen's school family is prayerful and helpful as well. 

After looking at that list, I am more rich than anyone in the world.  I have it all.  God has provided.  He is faithful in His promises and I need not worry.  I need to allow Him to continue to teach me and trust Him that everything will work out for His glory and for my good.  It will be His idea of my good and not mine.  I need to put my selfishness aside and understand my sin and how it affects others as well.  I need to focus on the blessings that He has provided and be content in where He has me today.

Please pray for me as I continue to forgive our tenant and continue to show her God's love.  I pray that she may find Him on her path somewhere.  I know these are valuable lessons.  I am sure somewhere in this journey there will be others that will say something or do something, and I will have to forgive, to love, and to show them grace because God has called me to do that.  Even as hard as it may be, that is still what I am suppose to do.

I know this is my learning moment, but it is really hard to do.  I never saw this commandment in this way before.  Yes, I have always tried to extend a hand to others, I have always tried to love, and show compassion.  However, to love someone through a tough time when it is them who has done you wrong, is really hard.  I am sure I will grow greatly in my faith and who I am when I can work through this.

My prayer for you as we enter 2013 is not to reflect and see the negatives, but to look on the past and see how you have grown, to see those blessings in disguise, to be thankful for every experience God has blessed you with.  It is much easier to look back and say 2012 has been so horrible, I hope 2013 will be much kinder.  However, if we never learn from our mistakes how can we expect to grow forward?  Nothing is as horrible as it seems.  With God's love, promises, grace, and forgiveness, we are able to get through anything.  And He will be there with us.  He will never leave us nor forsake us.  What comfort we can find in that.  Look beyond your circumstances, turn your head up and you will be blessed.