Sunday, October 28, 2012

6 days

Will you join us in asking our Heavenly Father to give Lydia 6 days of health, eating, and drinking? Also, if God will give our family 6 days of rest, a time to recharge and gain our strength again?  We feel that if we are able to get some time of rest and steady eating and drinking and most importantly health, it would really help Lydia.

It has been really stressful.  As my husband and I found out today, it is really affecting us.  As we are trying, we just are failing.  I know I am starting to feel like a fish out of water.  Every day it seems as though there is something new to worry about and there is something else we need to watch for.  Every day it seems harder and harder to get her to eat.  It is a constant struggle to get her to drink.  And most of that is because we are so stressed out.

I think the added stress of not having a good plan is more than I can take.  I still cannot shake the comment about institutionalizing my daughter.  It has gotten me really mad.  Satan is having a hay day there and I am allowing it.  It really is a struggle.  And then I get really mad and guilty when I do let that comment get the best of me.  I know I need to just push it off, but it is really hard coming from a doctor who was suppose to be caring for my child and having her best interests in mind.  Ugh!

So, as we were in church today, our Pastor's wife came up and just asked how the church could support us.  I think we are wearing our stress on our face and our poker face is gone!  People can see the fatigue and the dark circles under our eyes.  When Allison prays in church for Lydia to just get is a struggle.  But as we were talking, I just kept saying if we could just get 6 days of good eating, drinking, and health for Lydia, that could put us on the right track.  If nothing else, it could de-stress all of us and give us some rest.

I know that this is not something that will be fixed today or tomorrow.  This is our life.  This is a marathon that we are racing in.  Slow and steady will get us there.  However, sometimes it is good just to admit that you are in over your head.  If we can just get a small window of time to give us some hope and recharge, I think things will look a lot better!

Each day I wake up expecting that miracle of her eating and the scale to say like 18lbs.  While I will still anticipate my miracle, I give thanks to God for all of the others He has showed us.  He allowed her to survive two MAJOR surgeries.  She has overcome the odds in so many things.  I know she can do it, and I know that He is holding her.  I think we just need a little time to recharge.

Thank you for joining us in prayer.  As always, we appreciate your comments, your prayers, your means A LOT to us!  Thank you!

Saturday, October 27, 2012

Accepting what you don't want to accept!!!

Our paths are determined by our Father, to love us and teach us.  He knows the very best stuff for us.  His path often does not match what we want in life.  Often times the path seems windy and long, the path has bumps and mountains.  Often times we wonder why and don't understand why things happened the way they have.

It is hard.  Faith is what is required to get us through.  God wants us to trust Him, to walk blindly, having Him lead us.  He wants us to surrender complete control and allow Him to lead.  He will lead us down the path He has planned for us.  It is a path that will teach us, grow us, stretch us, strengthen our faith, and require all of us.

Life is not easy and God never promised that to us.  He did promise to never leave us or forsake us.  He will be in every valley with us, He will be on every mountain top with us.  He will not let us fall.  He will be there.  But, we must allow His ways and accept His perfect plan for us.

That means the parents who never were able to take their child home, God is still there.  The child who was killed in a car accident, God is still there.  The child who lost their mom to cancer, God is still there.  God has a plan, and He allowed that to happen.  He wants to teach us, He wants all of us.  He wants our faith to grow.  He wants us to lean on Him. 

I have been at this point before.  I remember in the hospital praying, God if it is Your Will and I was only able to have her in my life for 2 months, I am ready.  That is not what I hoped for, but I will trust You.  I will try to accept it and ask what You are trying to teach me rather than why is this happening?  What will I learn from this, rather than I don't understand.

I came to this point once again.  It is not without kicking, screaming, and resisting every way I can.  I want her to eat orally, I want her to gain weight, I don't want her back on the tube, I want her to get better, I don't want her on the oxygen.  I I is not about me.  I know that, but I don't want to accept that.  I am selfish and I want what I want.  I forget, or rather just ignore that.

But God has been working on me.  It is time to accept that I may not get what I want.  Rather I need to move aside and let God show me what His perfect plan is.  Even though I rely on His strength, I take over, because I want to control the situation, I want what I think is best.  I am sure looking on it is easy to see that, however, even though I know what I am doing, I just cannot help taking the reigns and take control.

Yesterday I just prayed to God.  I said I know that Your good and perfect Will will be done.  If that means that she needs to go back on the tube, then that is what needs to happen.  It is SO hard to think that this may happen.  But I need to trust.  I need to allow God to show me His plan.  I am open to what God's plan is and need to accept and trust matter what.

It is hard.  Once again I am losing control.  I have no control.  I have to sit back and allow Him to show me His perfect plan.  It is the hardest thing to do, especially when it is your child.  Especially when you just want to do the very best thing for your child.  I don't really know, so I need to just trust.  He does have our very best interests at heart, He created us, He sent His Son to die for us.  He suffered for us.  He cares about this too.

Friday, October 26, 2012

Morning Coffee

Sitting here in the temporary morning silence, sipping my coffee and listening to Pandora, my mind is busily sorting through thoughts and trying to just release.  My body aches from the stress that I keep putting on it.  My fingers are steadily hitting the keys and I am trying to comprehend what I am writing.  But I remember, it is not me, it is God, this is my time of release.  This is where I sit back and God takes over.  He allows me to be honest and just to release all of the "stuff" that has built up over time.

It has been a busy week.  Lydia is sick again.  We went in on Tuesday and she was put on an antibiotic as a preventative measure.  With her, they would rather be very aggressive at staying ahead of the game instead of find themselves in a position to play catch up.  She has been placed back on oxygen and we switched her inhalers to a nebulizer.  The nebulizer she thought was pretty cool for the first couple of days, but she is pretty annoyed by them now.

She has also had lots of episodes, once again, of loose stools and vomiting.  Very frustrating, especially since she weighed in at 15lbs12oz this week.  WHAT?  That is the total opposite direction than where we need to be at, kiddo!  If things could just settle down and we could get her healthy, we may be able to get a solid week for her to eat and get a better weight.  But she has been a pretty good trooper and we will be patient and continue to work with her right where she is at.

We did hear back from our new nutritionist, and she gave us some good suggestions.  We were told that she is taking in enough calories...finally.  However, she is deficient in calcium.  So we are looking into a supplement.  I pushed the idea of going back on the sodium.  She is low in intake on that.  She was taken off the sodium when she started losing weight.  I just figured that would be an easy harmless trial.  I am still waiting on word for that.  But we also found out she is grossly deficient in fluids.  Something that has never been brought up to us before.

I can't tell you how frustrated and angered I was when I found that out.  That is something that I had asked over and over about and I was told she was getting it from her food.  However, we have found out differently.  Every inch of my body wanted to scream and I just really wanted to choke someone.  I got over that, and just pushed forward asking more questions and trying to figure out what we had to do.  She will be getting some extra water through the tube at night to meet her fluid goals.  We will have to work HARD on getting her to take in the needed fluids.  Of course it would help that she feels better to start trialing some of this stuff.

We had to get our pump back from the medical supply company.  So the first night we went to use it, it would not work.  God has an amazing sense of humor.  Last night was the first night she was on the pump, so we will see what today brings!

This last frustration episode with GI confirmed that we need to switch now.  It hurts so bad.  One, I don't want to start over.  I don't want yet another opinion.  I don't want more speculation and have to retell everything again.  I am fearful that we will run into the same situation as before or something worse.  However, at some point this unnecessary stress needs to be eliminated.  Lydia deserves to work with someone who cares for her and appreciates her.  Someone who looks for her and will give her a chance.  I owe that to my daughter.  So putting aside all of my fears, frustration, anxiety, worries, I pushed through and sent the request.  The medical director now has the information and we will wait.

I am praying that today will be a much better day.  Yesterday was an improvement.  Yesterday Lydia was even able to get herself in the crawling position all by herself.  That girl amazes me.  She does not feel well and she still pushes herself to do stuff.  It was pretty cool.  I had tears in my eyes.  She is even working really hard on her transitions from sitting to laying and laying to sitting.  Also, she is so smart.  The stuff that she figures out in play with her sisters, still blows my mind.  She is capable of so much.  I am SO blessed.

This storm has been pretty intense.  It has been a long week with a very sick baby.  The other girls have done a great job at helping her get better.  Lydia is so blessed to have those girls.  My patience have been tested and tried.  However, as storms keep rolling in I find it easier and easier to just trust.  It is still really hard.  There are many times I feel like walking away, but I feel Him here.  I know He is here.  It is in the small things.  He is here and He will not forsake me.  Even when the winds are raging, the rain is pouring, you are dodging the lightning bolts, He is there.  He is holding you and He is just waiting for His perfect timing.  Not easy, but so worth it. 

Ellen also said that she prayed and asked Jesus in her heart.  Oh how happy I was.  She is such an amazing kid.  She is so on fire for God, learning His Word, doing as He asks.  We have been having a lot of faith conversations lately.  We talk about how important it is to constantly rely on God, knowing we cannot do anything without Him.  What great teaching moments God has given to me, but to my children as well.  What a beautiful blessing that I never expected.

Sometimes when you get to the other side of the storm you question why you were even stressed to begin with.  But during the storm the emotions and feelings, the doubt, the frustration, the aloness are real feelings.  While you know you should not feel them, it is real.  Faith is not something that comes easy and I think when we feel like we have it mastered, God gives us something else.  It is in those storms that we grow, our faith strengthens, we learn, and we become better people because of them.  Or that is how I want to look at it.  Through every storm I have become stronger and I know that I am a much better person that I use to be.  Praise God.

We are not through this storm, but we are getting there.  God is teaching and using us.  God has some great things in store.  While I was writing this, I had to step away to get Lydia to find that her pump did not work last night either.  Maybe God is saying give it time, Lydia can get to the fluid that she needs.  Or maybe it is just a laughable moment.  Either way, we will try again tonight, that is if she does not surprise us and drink her goal!

Some verses that were given to me in this storm by some friends:
In Psalms 121 it says that "He will not let your foot slip"
2 Cor. 4:16 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.
17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison,
18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

IPeter 5:7 "Cast all your cares on Him, for He cares for you." 

Some great encouraging verses.  Thank you and thank you God for your faithfulness and your promises.  Thank you for being patient and being there for us.

Our prayer requests are: that she can drink her 16oz a day, she can gain weight, that she begins to heal, her lungs get better and her coughs gets better.  Patience as we wait for a new doctor and patience to continue to weather the storms.  I also pray for all of you, that you know our Father, and He meets all of your needs right where you are at.

As I feel the walls of our house closing in on me with medical equipment, I look at this sweet little girl.  This girl who is content and happy.  A girl who has taught me so much.  I hold her close and pray with her.  I give thanks for her and just hold her as close as I can.  The walls often seem too close, but I think about a life differently and I would not want it.  I would not be the same, she would not be the same.

Often times we cannot think of a life like hers or his.  We cannot think that we can handle it. However, when we are placed in that situation, we cannot think of life differently.  I would lose so much if I was not in this position.  I would not be the person that I am. 

I think about what I would be missing out if abortion would have been an option (it was NEVER an option, but just a thought).  It is a fear, something unknown.  Just because she had some issues, does not make her any different.  My life changed drastically with the other girls who were healthy.  There were many unknown factors, but joy and excitement nonetheless.  None of that was really different with Lydia, but a label, wrong facts, and other peoples opinions clouding a huge blessing, a beautiful baby.

We don't know what we are capable until we are there.  We don't know our full potential until we run the race.  We don't know what we really need until we are given it.  So to look at something that may or may not be, to look at something that seems so big and to give up on that before even trying, we are robbing ourselves of the greatest blessing.  The road is not going to be easy no matter what.  We live in a fallen world, we are why do we think that we are better and make an uninformed decision.  Just because one person says it is not worth it, why give up before you start the race?

Fear can get the best of us, but it is that fear that gives us the greatest blessings too.  Walk with Him in faith, trust His plan He has set before you, and trust that He knows better than you.  You will not be disappointed, He will be there, He will hold you.  Even when you do not understand.  Constantly look at who you are and how you changed because of that fear, because of that storm.  I know that I never thought I could do what I am doing, never thought I would be a stay at home mom, much less taking care of a specially abled child.  The love and the joy, the laughter and even the storms, have made me who I am today and I would not change one thing.  The same goes for all my children.  They are fearfully and wonderfully made and I think they are perfect, extra chromosone and all!

Monday, October 22, 2012

Joy in the Hopelessness

It has been a VERY trying couple of weeks for me.  I am worn out and exhausted.  I feel like I have lost all hope.  It has been very hard.  However, through it all, I am reminded that God chose me, He gave me this journey, surely I am able to handle it with His help.  But the days have been long and it seems like no one is there.  I am reminded of that quote that the teacher is quiet during a test.  I am just wondering what kind of test it is.  I feel as though I have given everything over to Him...I am just struggling.

Every since our appointment I begin to question what I am doing.  Why am I working so hard when her doctors seem to think she can't do it?  Why am I pushing when everything seems so stacked against her?  Why can't I just accept it and give up?  Am I do the very best thing for her?  I have asked how I can keep going on?  I have even questioned where God is?

The road has been so long with so many bumps and it just seems like one thing on top of another.  Don't get me wrong, we have had many great days and many praises and even witnessed many miracles.  However, right now, today, things seem more than I can handle.  Things seem way over the top.

This morning it was another day to try to get her to eat.  It was another struggle getting the food down just to see it come up again.  It was watching her struggle to breath and my heart was just aching.  It is more conversations with my husband about what to do next.  Who do we call?  Do you think it is her teeth, her lungs, issues protecting her airway?  Who should we call?  The endless questions and the continued uncertainty pains me heart, continues to wear me down.

I just want her to have a couple of days where she is not struggling.  We have had those days and they are so wonderful.  I just want to be able to enjoy her and not have all of this "extra" stuff in the way.  I don't want to continue to take away from my other children.  I don't want to have to tell them no anymore.  I want to enjoy things with them too.  I want us to be a family just enjoying activities together.  Yes, there have been days, I have not forgotten about them, but they seem too few.  It is a struggle every day, we never know what is going to happen.

I am not trying to sound negative, but I am trying to be very honest with myself.  I do understand that not everything is horrible, but in this spot today (and actually for a couple of weeks), I just am exhausted and totally worn out.  I feel like my patience have been tested to the limits, I feel like all of our resources are used up, I just feel like we are continuing to hit a road block, we are financially exhausted, and I am stressed to the max.  It is a tough situation, but there is hope.  God is working on that with me.  Today I am provided for, and that is all that I need.  Today, God woke me and her, He has given us another day.  What more is better than that?  Through this He will make us strong. 

I was reminded in a Bible study this morning that our children are a reward...each and everyone of them.  And I have a purpose as a mom, a very important one.  God created a mother for a very specific purpose.  I was reminded that she was created fearfully and wonderfully created.  She is exactly who she is suppose to be.  I have been chosen to be at this specific spot. 

So, I am trying to chose (it is extremely difficult) to be joyful even when the circumstance I am in seems hopeless.  The battling of eating and worrying about the doctors and the ups and the downs just seem endless.  The other night Eric just hung his head and was just sick of it.  When will this stop?  Will it stop?  When will there be a time that we don't have to worry and she can just live?

But even in the questions I see this smile that lights up the world.  I see these eyes that are full of life.  I see a little girl that is determined to do so many things.  I see a girl that has made a positive impact.  I see a fighter and a child God is holding so close.  I see a miracle.  I see how she has brought a family together.  I see how her sisters adore her and she adores her sisters.  I see someone who is full of life.  A hug from her melts my heart.  She laughs and giggles and plays.  She smiles and laughs and talks.  She is now frowning and it is so cute.  She loves to play peek-a-boo.  A child like any other child.  She hides her pain so well and caries herself like no one else can. 

Even when the circumstances seem so hopeless, she is so joyful.  She is doing what she knows how...being herself.  I can't help but weep.  Sometimes I feel like she is so much stronger than me.  How did I get so blessed to have her? 

I guess each circumstance has two sides to it.  You can wallow in despair and frustration or you can see the bright side of things.  You can feel defeated and ready to give up, or you can renew your strength in the Lord.  I am trying to look on the bright side and hand over EVERYTHING to God.  I struggle, but He is patient with me.  He is waiting for me to learn.

Our specific prayer requests are: For Lydia to drink (our goal is about 16 oz a day and we are currently at 4 oz), for Lydia to continue to eat well (she has been doing pretty good), for the food to stay down (Lydia has had a really bad cough and it has caused her to throw up more), for her to get some comfort with her teeth, for her lungs to heal (her 02 levels have been lower and she has been laboring to breath more), I also ask for strength as we continue on this journey, I ask that you help me hand over everything to Him and I am able to praise Him through the storm, I also pray for our family that we are able to continue to get through these road bumps and know that God is holding each one of us.

Wednesday, October 17, 2012

Tell me again that I can't do this!

I think there became a running joke with our surgeon about Lydia getting out of the hospital.  I told him originally that we had to be out of the hospital by a day in December.  The reason was we were going to be on the radio for the Ronald McDonald's House and I wanted Lydia there.  He said that would not be a problem, she should be home before Thanksgiving. 

When that time had come and passed, he came in and said I bet you can't be home before the new year.  And boy did she prove him, we were sent home December 30.  We thanked our surgeon for giving her that challenge.  She proved him wrong...she said she could do it.

I think often times on this journey when someone has said that she will not do it, she has done just the opposite.  She is a determined little girl and she will walk the way she wants.  I also think that it is God using her to prove His glory and grace.  God is saying, just trust and I will show you, just have faith and follow and you will be blessed.

After Thursday's appointment I have to say that I have been filled with discouragement and frustration.  It stems from many things, but mostly because I feel like I have little to no support from that specialty.  It is hard to walk this journey alone (or feel like you are).  While I know I am not alone, just the feeling from having little support from one of her caretakers is very frustrating.

So after yesterday's post, I was feeling encouraged.  I have been praying before and after every one of Lydia's meal.  Just thanking God for allowing us to eat, asking Him to use the food to her benefit, thanking Him for the bites she took and the drinks she had.  I am reminding myself that I cannot do it alone.  I am reminding myself that I am never alone.

We have decided on weekly weights for the time being.  We want to make sure that we are doing everything to manage her weight the very best that we can.  Today I was not looking forward to the weigh in because she has been sick and has not been eating very well.  I thought for sure we would have a loss.  I was prepared, but was dreading it.

However, to my surprise, she gained weight.  Not much, just a quarter of an ounce, but she maintained and gained even though she was sick, even though she was not eating.  She is once again out to prove the doctors wrong.  She is making waves.  I have to say that it is something awesome to be part of.  God is working in mighty ways in and through her.  He is testing and growing me.  Without the valleys and the highs, I would not learn, I would not be who I am today.  I also would not appreciate what He has given me as much. 

I continue to pray that she stays on this trend and in the next week she gains even more weight.  I pray that she continues to drink well.  I do believe that this is the key to her weight gain.  She is making better pea and just doing much better.  I pray that she continues to stay healthy and develop as she has.  I also pray that I continue to trust God and just be in His presence.  And may she continue to prove everyone wrong.  I know this is something so small, but it give me great hope!

Tuesday, October 16, 2012

One Foot In Front Of The Other...

Sitting in quiet alone with my thoughts.  Not sure that this has happened for a long time.  It scares me a little!  Lydia is peacefully sleeping and I LOVE watching her sleep.  Taking a couple of minutes to write some more of my jumbled thoughts before I dive into some reading.

I think God is really working on me this time.  So hard that I might actually get it this time around.  I know that I have been here before, I am pretty sure what I should do next, however, it seems so hard.  Relying on Him for everything.  Trusting in His plan and following His ways.  Sometimes I feel like a broken record because I must say that every time I write.  However, that is so important.  I cannot do it on my own.  I cannot manage without Him.

One book that I am reading is about giving grace to your children.  One of the concepts that the authors talk about is giving grace to your children.  But it is in the manor that it is done.  Teaching them that disobeying does not displease God, but not relying on Him (these are my short notes filter through my brain so I hope I am interrupting them correctly!).  Remember that in EVERYTHING we need to rely on Him.  We cannot love our brother on our own, we need God.  He loves us so much that He gave is one and ONLY Son to die on a cross, to take away our sins (while we were still sinners...that's my favorite part).  What we do on a daily basis, we need Him.  Every step of the way.  Teaching our children the Gospel is so important and how it applies to their life.  We are incapable without Him. 

Eye opening and transforming to me.  I really haven't done anything with it yet, but tell myself I should.  My children need to know the Gospel, but they need to be reminded of it over and over.  And maybe not them so much as myself.  Do I really remember that I cannot do it without God?  I cannot do it without His grace and love and forgiveness?  He has won the victory, it is mine to relish in.  Yes, it requires me to live a life according to Him, but I do not have to fight the battle.

I think back to how the past couple of weeks would have looked if I would have remembered that.  Oh boy...I am almost embarrassed by what I have done.  Thinking I could do it on my own.  Yes, I prayed and studied and thought I was handing it over, but I was just fooling myself.  I was holding on to it.  Look at all the extra stress I caused myself.  Look at all of the time I stole from my children and husband and God.  And those handful of gray hairs are not going away either. 

The good news is He forgives me and He is patient with me, even when I continually mess up the same thing over and over again.  He is awesome, His love is unconditional.  He loves me no matter what.  It is incredible.  I look at my children and how much I love them, God loves me more than that.  I don't deserve it, but I surly will take it.

Our culture says give me everything now.  As much as I try to separate myself from the is world, I still have that mentality.  I want Lydia to eat, I want Lydia to be healthy, I want my husband to retire and be at home, I want, I want, I want.  God has gently, OK not so gently, reminded me, one foot in front of the other, lean on me and I will make your path straight.  Those who wait their strength will be renewed.  There are all kinds of great promises the Bible gives us....yet I chose to ignore.  I chose to kick God out of the driver seat and drive myself, even though I thought I was letting Him drive.

It has been a long hard journey, and to me, the end is no where in sight.  But I don't know that because only God holds my tomorrow and knows what will happen.  However, in the moment today, I will do what He wants me to do.  I will give Him thanks and acknowledge the blessings He has bestowed upon me.  I will live my life in a way that would be honoring and pleasing to Him.  I will try to remember the is nothing I have done, but what has been done for me on the Cross.  I am able to do nothing apart from Him.

Yesterday was a hard day.  Lydia did not seem to want to drink anything.  Ugh.  This is not good because she needs to gain weight and then maybe the tube can come out.  Apart from the tube, there is an issue at hand, a real pressing issue...she is not gaining weight.  What can I do?  What do I need to do?  I will do anything I can to help her gain weight (I would sacrifice my own fat to give to her...a mom has to do what a mom has to do!).  It is tearing me apart. 

However, I reminded, I cannot do anything without Him.  Did I pray?  Have I thanked Him for the bites that she has taken?  Have I just relished in His blessings that He has given me today?  See, I don't need to look beyond today, I need to live in this footstep, the next one will come tomorrow.  It may be hard, I may not agree with it, but that is how it has to be. 

Today I was able to get up and pray.  Oh how I have missed my praying bike!  It changes everything.  But I just thanked God for what He has given me.  I boldly asked for Him to give me peace, give Lydia peace.  Then I was reminded that I can do nothing apart from Him.  Yep, I failed once again and He is there to pick me up. 

I just asked that she may accept the food today and it not be a fight.  I asked that she might drink more than she did yesterday.  One step at a time we will get there.  Focusing on the very immediate task at hand.  And, answered prayer.  She started off by drinking this morning.  She accepted her food this morning (even with her medicine in) and she was happy...there was no fight.  Thank you Jesus!  Then she drank some more later and she ate some more later.  She even drank more before she laid her sweet head down for a nap.  She probably has drank more today then she did all of yesterday.  Praise God.  See, one foot in front of the next.  I cannot get too presumptuous and run ahead, He is there waiting for me, but wants me to enjoy this moment.

Sometimes I just want to hit my head and be like duh!  That is one of the greatest lessons I have learned from Lydia, just to embrace every moment.  However, time and time again I forget that.  I want the prize before I put in the time.  I want the reward with none of the work.  I need to enjoy where we are at, where God has matter if I like it or not.  I need to trust God that this too shall pass.  When you put it that way, it seems so foolish to worry because I will get through that as well.  The answer seems so clear, but the application often is so hard.

I need to do a better job at just living and not worrying.  It is SO hard for me to do.  This is my daughter.  I want the very best for her.  But God has placed some amazing people around us to help us raise her, to advocate for her, and we are so blessed.  We have the VERY best therapists possible.  It was such a blessing to switch therapist.  They listen and they go to the very ends to help us.  Even when I want to give up, they are there encouraging me.  I just thank God for the very best support people.  We have had that all along this journey.  We have been blessed with many amazing people.  We have been given great family to support us and help us.  Without them it may have been impossible.  They helped us cary the burden.  I just praise Him (there is ALWAYS something to be thankful, I just need to get out of that self-pity mode and see).

So, today I will push for the dietitian.  We still have not received a phone call with a new one yet.  But, I would love to get a plan and move forward.  I will relax because my sweet baby is still recovering from being sick.  It takes time.  I will be thankful for the bites and the calories that she does take.  I will be thankful that mostly everything is staying down these days.  I will pursue a method that I can get her the very most calories and help her drink as much as possible.  And I will acknowledge that I cannot do it on my own, that God needs to be there every step of the way and I need to let Him lead and allow Him to do so!  And I need to accept that it will be His plan and not mine.  If the peace does not come for awhile, I need to accept that and look at what He is trying to teach me.

My specific prayer requests are that I can put God first all of the time.  That Lydia continues to get her appetite back and eats well.  That Lydia will continue drinking more and more.  And that Lydia will gain weight.  The tube is not an issue like it was before since she is tolerating on her stomach now that she has the smaller tube.  She needs to gain weight for her health and well being.  I also pray that she can continue to develop and gain strength that she may get to the next milestone.  It seems like we have had many obstacles in the way that has not allowed us to focus on this area either.  And in everything may God be praised.  I pray that you will live out the Gospel in your life every day and rely on God for everything, that you know you cannot do it alone either.

Sunday, October 14, 2012

Momma Says There Will Be Days Like This

My mind is an emotional roller coaster.  I am trying to piece together the thoughts and feelings, but nothing seems to make sense.  The littlest doubts have become these huge mountains.  Satan is working on me and I hate it.  Every little thing I have let him get to me.  I have been struggling in my faith.  It is so easy to say, give it to God, but it is so hard to apply.  In plain terms, often times I suck at faith...but it is not from failure of trying.

The past couple of weeks it has been this focus to get the tube out and for Lydia to gain weight.  However, the past couple of days have been just trying to make sense of everything and put all of the pieces together.  It is amazing how one little thing can shift everything.  One phone call, one sentence, one little word at times can change everything.

The appointment overall went well.  It was very long.  We were in the doctor's office for about three hours.  The doctor did listen to a point.  When we discussed getting the tube out, he was not in favor for it.  Basically because of her weight gain.  We agree with him, however, most of the information he gave us was different than what we had researched.  Not sure where the differences come from, but I am glad we did the research and could have a conversation about those differences.  It is so important to be informed and really stick to that "gut" feeling. 

So the most pressing issue was weight.  I am totally confident that with me stopping breastfeeding and her taking the fortified milk, she will do just fine.  I can also add in more calories.  I stopped because our dietitian just told me we had to get to a certain number of calories, obviously that was not enough.  He did add in one more thing.  I think this just blew me away.  He told me that he thought maybe waiting until she was 9 to get the tube out was a good thing.  WAIT, what did you just say?

Needless to say, Eric and I both thought that was unreasonable.  The reason is because there is a chance that she may develop a condition that she will not be able to protect her airway when she becomes older.  Also, he said that the J tube surgery is complicated.  So we would have to check with our surgeon to see what he said.  When I had talked to him earlier, it did not seem like a big deal.  However, he did not know about the weight gain.  But if she is gaining weigh well, I would not see a reason not to take it out.

Other than being totally blind sided by this information, I cannot find any information about this "condition" the GI doctor was talking about.  I have several e-mails out to different people and some of the groups that I belong to.  I am searching to find information out on this.  I will contact his office on Monday to have him send me information on this.  It is really frustrating to just be finding out about this.  We have done so much research and to think that we missed something this big is very upsetting.  Also, for no one to mention it until now, is very upsetting.  So, before I let myself get too out of control, I will have him send me some information on it and wait for the returned e-mails.

I also asked him to change out her tube.  Her tube seemed to be sitting in there very odd.  He switched her back to the small tube and it is awesome.  Today, for the first time, she just went on her stomach.  How awesome that was to see her.  She is getting herself into the four point position ready to crawl.  It is such a HUGE step for her.  She just blows me away.  I am very glad that I stood up for what I thought was right for her.  I may not always be right, but I do have her very best interest in mind.  No matter how hard it gets, I will stand up for her. 

We also switched dietitians.  I found it unacceptable that our other dietitian did not return calls and she was not on top of some of these things that are issues now.  So we are still waiting a phone call from her.  Because the appointment ran so long we were not able to meet her.  I have been praying that this will be a better fit and this will be a great resource for us and not a huge stressor.

Overall, everything went pretty well.  We did not get the news that we want, but we were able to get answers.  God gave us what we needed.  We thought one thing, and God knew another.  I think that we accepted it very well.  We decided at this point that we would not be switching GI doctors as ours knows her and did a good job of listening.  But, if we have another communication breakdown or issues, he knows that we will be getting a new doctor.

I have to say that I have struggled with that appointment for other reasons.  Satan has really been working on me.  The doctor always gives a grim picture.  He says that she probably will not be able to take in the calories that she needs so she will have to go back on the tube.  Kids like these usually develop other problems.  Instead of focusing on what she can do, her potential, they always have to focus on the negative things.  It sometimes is more than I can handle.

I have to honestly say that there have been several times that I have thought in the past days to just put her back on the tube and accept defeat.  I have thought several times that this is more than I can handle.  And to be honest, I have even thought is this worth it.  I just cannot get over the fact of how the doctors treat these patients and families.  There is often time little hope.  Instead of getting my hope from God, I have been placing it in things.  Hoping in this or that.  I know better than that, however, it has been hard to apply it.  I wish that you could go into an appointment and the providers to be as happy as you are about her accomplishments.  To believe in her the way I do.  To see all of the ability there.  To recognize her as a person, as Lydia.  I guess that is why she was given to me and not to someone else.  God knew that I would go to the ends of the earth for her, that I would love her unconditionally, that I would believe in her even when no one else would (her father does too...he is pretty wonderful).

Some times it hurts so bad to have to mention these thoughts and feelings.  But I need to recognize them and confess them as sin and move on.  But I want others to know that these are real, raw feelings.  That it is tough.  There are days that are so difficult and you just are not sure what to do.  The lows are so low and the highs are so high.

I don't think that it helped that she was very sick either.  She has constantly been throwing up and having loose stools.  She has been eating a lot less calories.  We had to stop fortifying everything just in case she was not tolerating it.  So not only do we have to be focused on her gaining weight but now she is not eating calories, she is losing everything.  Stressful.  However, I tried to remind myself that she is a baby that is sick.  She will get over this and things will be good.  Bathing in poop and vomit is never fun.  The other girls were sick too.  But not knowing exactly what it is, was frustrating.  Was she not tolerating the fortification or was she just sick?

Today she finally started to turn it around.  She actually wanted food and anticipated it.  She only threw up once and I think that was because she ate too much at once.  Her stools are back to normal.  Tomorrow we may start at half fortification and she how she does.  Or we may just go one more day to get her back on track.

I forget that she has these bumps and then seems to just fly right over them.  Not only does she seem to have her appetite back, but she is now loving tummy time.  She just amazes me.  I know God has a plan, but it is really hard to continue to trust when there is one thing after the next.  I just pray for a break sometimes.  But, I look back to all the many blessings and just try to be content in that.  God is teaching us, God is growing us, God is using us, and I just have to be patient with His plan.  Harder to apply, but so worth it.

We were on the radio again for the Ronald McDonald's House.  It was another good opportunity to be able to promote such a wonderful organization.  I also was taped for the new Epic training for the Children's Hospital.  After Lydia was given breast milk on two different occasions, it was very important to us to have them change their process.  After talking to some people and sharing our vision, it is becoming reality.  It is because of Lydia.  She is making an impact to all kinds of people.  When people say she is not worth anything, I just laugh.  She has brought more good in this world that I ever have.  Yet many people value my life more than me.  We have it backwards.  I am learning from her, and I think many are.  Yet we want to label and brush "her kind" off.  HUGE mistake.  Huge mistake.  She is no different than you or me, she just sees the world in a different lens and reacts that way.  And we can just sit back and learn.

My mind is still just a jumbled mess.  God is working on me.  I can feel it.  It's funny because we have been in this place before.  Focused and consumed on one thing, but forgetting what He calls us to do.  In this journey there will be more times that we will be here, I am praying that next time I will learn.  His greatness is so great.  His love is so amazing.  His mercy and grace is such a gift.  Yet there are times that I just forget about it.  There are times when I just want to push Him out of the way and drive myself. 

I would ask you to pray for Lydia that she continues to feel better, that she can tolerate her fortification, and that she gains weight.  I would ask you to pray for me that I can continue to learn and be in God's grace all of the time.  That I can just appreciate each and every one of His blessings He has already given to me.  That I can be His child, doing what He has asked me to do.

Wednesday, October 10, 2012

The Happy Dance!

I don't think I ever imagined myself doing a happy dance in a doctors office because my child gained two and a quarter ounces.  However, this morning I did.  I wanted to scream.  I scooped Lydia up and just hugged her.  I was SO proud of her.  These are the moments that I took for granted before.  These are the moments that I let pass by me and never even knew how important they would become. 

Taking time to slow down and enjoy every little step has been one of the biggest lessons that I have learned so far.  Watching and learning what goes into raising your hand.  Understanding how important the basics are.  I really probably could have cared less with my other children.  If I was to have another, I think it would be a different story, I could embrace every little thing.  I think I do that with my friends children who are younger...just sitting in awe about them doing a simple task such as sucking and how much Lydia had to put in to doing that.  I am thankful for that blessing, I am thankful that God has showed me how important this is.

When I hear the phrase just slowing down, I know that it means so many different things to everyone.  I thought about what it meant for me.  Today it was a weight gain.  And it is funny to me...when she lost that much weight before, I would say oh just a wet diaper.  But today I am screaming from the mountain tops.  It means that we are doing something right to get her weight to go in the right direction.  She has been sick since at least Friday and has been throwing up with loose stools.  She has only eaten about half of her calories she normally would.  And to be gaining weight during!  I am blown away.  To celebrate each and every step, that's what it means to me to slow down.

Our GI doctor also called Eric today.  We finally found out that our appointment for tomorrow was made because Lydia is doing far better than they expected.  Our GI doctor is the one who said she would never come off the tube.  He never expected her to be on full feeds at this point.  So he wants to check her out to make sure that she is where they would expect her since she is on full oral feeds.  Sigh....would have been nice to have that information about four or five weeks ago. 

Eric said that he also started getting into the tube removal.  He said that he did not want to because what if this and what if that.  However, Eric told him that we would discuss that tomorrow.  I think that he needs to see her, he needs to start looking at her as Lydia and not just a case.  He needs to close his text books up and really look at her skills and what she is doing.  Obviously she is doing well, they never expected her to be where she is today.  I have to add a side note, as a mom I just want to say I TOLD YOU SO.  I want to just shake my fist and tell him that if he only gave her a chance he would realize too how capable she is.  I know that she may not excel at everything, but she needs to be given a chance before a label is slapped on her or some kind of prejudgement is made.  I can't help but secretly just be so proud.  It is probably so wrong....but YEAH LYDIA.  Mommy knew you could and I am sure you will continue to do that for the rest of your life.  End side note!  So I think before we have that discussion, we want to hear him out and have him look at her. 

I have been praying a lot for what will occur tomorrow.  I feel like we have a good "case" made for taking the tube out.  I also feel very strongly that I have been given this mommy feeling of making sure to stand my ground and get that thing out for a reason.  If he wants to keep it in because of what ifs....I have a bunch back for her.  Since he never thought she would be here, I think it is important to not underestimate her.  But I cannot live my life on what ifs.  I need to follow what I feel is logical information.  We could leave the tube in for the rest of her life because of what ifs.  From my understanding, there is no set way to get a tube out, it is all based on a feeling, calculated risks from a text book and basically your doctor.  I have heard all different kind of ranges.  I guess this bothers me.  But, I am praying that God has it covered, God gave us some great information some wonderful people to talk to, and God has it covered.  I am very confident in that.  God has given me great peace over this.  I just love that. 

If you would not mind praying for us around 2 until like 330, that would be wonderful.  That is about how long we are anticipating the appointment to take.  I just pray for open conversation, for open ears on both parties, for some kind of understanding and logic about what is happening.  I also pray that we are able to get some expectations set for future appointments or we are able to get a new doctor.  We have had many issues to this point, and I need the very best on Lydia's team.  I need to make sure that they have what is best for HER (not a diagnosis, not a case, not a text book, but for LYDIA), and most days I am not confident in this team.  I would also pray for me, I have that lack of trust, so if he does come back and say the tube needs to be kept, I just pray that I can hear what he is saying.  I don't believe that he has had Lydia's best interest in mind with many decisions he has made, I feel he takes the road that is best for him, that will cover him in case anything happens.  That is a hard balance for me to understand.

The big deal with getting the tube out or not is because it is causing significant developmental delays in Lydia.  She already has a lot to overcome, so if we are not using the tube, I would rather take a risk of another surgery than see her struggle.  She is not able to easily meet her next goals because of the tube.  In the past week or so we have seen her significantly struggle with her stomach as well.  It is clumsy and gets in the way and I am sure that it is not comfortable.  Also, the tube site has been irritated.  We have not had problems with that for a long time.  It seems like no matter what I do to get rid of it, it won't stay away.  This would be potential for possible infection and it is a hole in her body that infection can enter.  Because we are still working on her building up her immune system, an infection can be really serious to her.  I just want folks to understand the largeness of this decision.  It is not just about getting rid of her tubes.  There is so much that goes into this.  I also believe that if a foreign object is taken out of her body, she will be much better off.  But if there are feeding issues down the road, the risk of another surgery is there.  And because it goes into the small intestines, it is a bit riskier.  There would be scare tissue and stuff and getting it placed correctly.  However, something that would be manageable.  It is a large decision and deciding what is best for her is really hard to know.  I pray that God just continues to guide us and gives us the wisdom.  Obviously just relying on a GI opinion is hard too, because their main focus is growth and nutrition, not all of the other stuff like developmental. 

For now, however, I am just going to lavish in her HUGE success today.  I will just give glory to God for answered prayers and continued faithfulness to us.  God is so good.  Lydia is our miracle...and she just keeps proving everyone wrong!

On to making cookies for the Ronald McDonald's House.  I can't wait to make our house smell like pumpkin spice!!!

Tuesday, October 9, 2012

Unexpected Blessings

Yesterday was a rough day.  And I am just talking about the first hour of the day.  Stress and other factors had gotten to me.  Emotions and feelings clogged my thinking and what I could see.  I was upset.  I was not being a very good mother.  I yelled at the girls, I said things that should never leave the lips of a mom.  I failed.  I struggled.  I thought that Lydia was more than I can handle.  I just did not understand how it could be so hard.  God must have mixed up and given the wrong child to me, I don't know how I can go on another second.  Brutal tough thoughts for any mom to deal with.  I love Lydia, and it is not her at all.  The extra junk was getting to me.  I was giving in to this emotional feeling and forgetting about the blessing all of my children are, forgetting about the very special calling God has given me.

I found myself laying on my bed just crying.  Screaming out to God...WHY?!  I don't understand, I can't possibly put another foot in front of the next.  Really?  Where are you?  Why do I feel so alone?  I am angry and upset.  I just don't feel like I can go on.  And not only do I feel terrible about my situation but I made it worse about how I treated my children and what I said.

Grace...God gives us grace.  I failed as a mom.  I was stressed and strung out.  I grabbed Ellen and we prayed.  I told her that I messed up greatly.  I told her I was not living in God's Word and I allowed sin to clog my mind and my mouth and the decisions I was making.  We prayed and we talked.  It was in that moment that there was a blessing beyond what I could have asked for.  God gave me grace.  God told me that it was OK.  I am not expected to be perfect, He loves me the way I am, broken and battered.  My daughters are going to see that.  This is a tough long journey.  I do, however, have to work towards controlling myself and stopping it.  But He gives me grace, He says He will hold me and love me no matter what.  That is exactly what I wanted to do with my children.  No matter what, I will love them.  I will chose to love them.  I will put my selfishness aside and love on them continuously.  I will love them unconditionally just as my Savior has done for me, I don't deserve that, but He has given me that.

I was sobbing as we got into the car.  How was I to lead a Bible study now?  I am a broken mess.  I can't do this.  But it was to late to cancel.  I prayed and I prayed.  I just asked that God's Will be done.  I asked Him that I would live in His presence today, that I would change this horrible attitude and start treating my children with respect and love and showing Christ.  I just did not understand how I could lead this, not today.  I was (am) still consumed with Lydia's eating.  And yeah, she was not eating yesterday.  I could not even force it down her throat.

I got to my friend's house and we started talking, encouraging and just holding one another.  As the rest of the girls piled in, the blessings were just flowing.  God has given me some amazing woman to talk with and walk with on this journey we call faith. It is hard, and it is OK.  I need to not continue on this path of being out of control and beating myself up for not being perfect; but I need to embrace where God has me.  I need to let go and let God.  It was such an amazing moment.  I was so sure that this was the wrong thing, and God held my hand, made me go and showed me that I truly do not know what I need, He knows me every need.  He knows what I need the most.  Praise God.  Thank you to the wonderful ladies who I am able to walk on this journey of faith and grow in His love, grace, mercy, and knowledge.

I still struggled trying to feed Lydia.  Trying to push down her throat, doing anything I thought to make her eat....get calories, put on weight.  However, I soon realized that just like the rest of the family, she is sick.  She threw up a couple of times and the sparkle in her eye is temporarily gone.  She can't eat, her body needs to rest and fight off this.  I need to back off.  I need to let her be sick.  This is normal, babies do get sick and she is no exception.  I forget that often times.  In the midst of all of her medical problems, she is just a baby (OK...a toddler) and they do get sick and they do change.  This is normal...she is no different.

So what is eating at me?  Why am I so obsessed?  What is happening to me?  When Eric came home last night we sat and talked for a long time.  I am OK if the tube needs to stay in IF they give me VERY good reasons.  My mom instinct is SO strong to take it out.  I feel like we have prepared what we need to to overcome this.  But what else is there?  As we began to talk more and more and dissect our feelings, I think we are both feeling very anxious about the reason why they want Lydia to come in.  Our dietitian just e-mailed me and said we needed to see explanation.  When I asked why, she did not return my e-mails or my phone calls.  When I called the nurse, six different times, they just said they think it would be best.  Why?  There were no tests taken by the GI doctor, just a height and a weight.  What are we missing?  Is our daughter OK?  This is clearly what is eating me up.  You can't just tell me my daughter needs to be seen and not tell me why.  You can't just ignore a patient and expect them to be OK with it.  This is unacceptable.  I am going crazy.  My husband and I have both become angry about this.  This is not right.  What is the reason for the appointment?  If it is to take the tube out, tell us.  If it is to tell us the tube needs to stay in, tell us that.  If it is just a check up, tell us that.  If there is something else there, we need to know.

Eric is calling the nurse today to see if he can get some more information.  We need to prepare ourselves for whatever it is that we are missing, if anything.  Not necessarily about the tube, but what else is it that we are missing?  A doctor just does not call for an appointment without a reason?  Surely there is something there that we are missing.  This is the root of my anxiety.  This is why I am stressing out, why I am consumed, this is why I am not who I am...I am nervous, scared, anxious, fearful, name it.  Why did I not recognize that beforehand?  Why did I have to get to a point of crazy before I could see that?  It is not because of her diagnosis that I cannot handle things.  It is not the Down syndrome or the medical issues, it is the part of dealing with the doctors.

I do have to say that we have been so blessed that this really is the only specialist that we deal with that does not look at our daughter for her.  He looks at her as a diagnosis and a science experiment.  He looks at what is easiest for him to treat and not what is best for her.  It is really hard to trust his suggestions and recommendations when there is a lack of trust to begin with.  I know God has it under control and I know I need to just trust in God, but it is hard sometimes.  Sometimes it seems much harder too when it is something that I am so close to.  I am really the only one who feeds her....I feel like it rests on my shoulders.  I am her voice, I am her advocate.  But really it is God....not me.  No matter what it is, God is good and His Will will be done.  No matter what, worrying and being anxious will not change what will happen.  So there is no reason to waste this precious time forcing food or making myself go crazy.

I am continually getting taught things will not work out the way that I want them to, they will work out according to God's plan.  However, whatever the road is that I need to travel will be well worth it.  Sometimes I need to have my blessings in the form of suffering, tears, fears, or joy.  But whatever it is, God has it worked out for HIS perfect plan.  It is according to Him and not me.  It is so tough, but so rewarding.  And because of the journey God has given to me, I feel joy in a pure sense.  I understand the simplest of things that can be pure joy.  When Lydia switches a toy from one hand to the other, how hard that is for her and what an accomplishment that is.  A smile and how precious that she had to fight to be in a spot to have a smile on her face.  But I also understand the suffering and probably to a greater degree.  I understand what it is like to continuously hold a child down for a blood draw, to watch her turn blue and wonder what the next seconds will hold, to have her sick and wonder who can handle the depths of her medical issues.  I will have to watch her continuously over come stereotypes and challenges because of her diagnosis.  But what blessing that is.  To understand those pure highs and those hard lows.  God chose me to experience them and chose me specifically for this journey.  It has been very comforting to know and understand that in the past couple of days.

Seeing a friend unexpectedly rounded out yesterday.  Just to see her smile, her love for the Lord and the joy she has, it was such an encouragement to me.  When I went to pick up Ellen last night, it was so awesome to see a friend, a sister that I was not expecting.  What a joy that was.  It was awesome to see the girls play with friends that they miss.  What a great blessing.  Thank you God for these unexpected blessings that You give to us when we least expect them, but really need them.

Some times I feel like I cannot go on, I cannot handle where God has me.  Then I am reminded that I cannot, but God can.  I need to be patient and wait on Him.  That is really hard for me because I am still a very impatient person.  But God has blessed me with wonderful children and gave me exactly what I needed.  This too shall pass.  Thursday will come and go and whatever the decision is, we will live with it and make the best of it.  I cannot ignore this instinct that I have, so I must stand firm in what I feel is the very best to Lydia.  However, I need to remember to have open ears and an open heart.  I need to be willing to allow another opinion without backing down on what I feel is the best for Lydia. 

The unexpected blessings in life are some of the most joyful moments.  I thank God for giving me these!

Sunday, October 7, 2012

Totally Consumed?!

Ugh...sometimes it is so good to be totally consumed.  I would love to be totally consumed in the Word of God every day.  I would love to be totally consumed in fellowship with brothers and sisters in Christ.  I would love to be totally consumed in worship.  However, my life seems like it does not allow for that.  It seems like other things get in the way!

My totally consumed that I am talking about right now is Lydia.  Some days it seems like it is more than I can handle.  That is not a complaint, but just being honest.  The road is not always easy.  The road is not always one that is fun.  And usually the road is not one that many understand. 

I LOVE Ellen and Allison.  I am consumed in their lives.  I love them, I would do anything for them.  However, even though they are younger, they are self-sufficient in some aspects.  They can pick out their clothes, they can feed themselves, they can get themselves ready in the morning, they can tell you what they want, what hurts, how they feel.

Lydia is a bit different.  I know she really is no different than another baby, because many babies could do these things.  However, her needs are heightened more on the fact that I have to be able to account to a doctor many times.  Often I have to tell someone what I think is going to happen based on a mommy instinct.  I have to sort out from her several different complications which one is being affected or if it is normal baby stuff.  There is making sure you fit in physical therapy each and every day so so can gain the strength that most normal children have.  You have to work a little extra to help her to the next step.

Now don't get me wrong, I love her more than anything and she brings so much joy to me, however, I have been totally consumed.  Her eating lately is what I have been consumed by.  I feed her, she eats almost all of the time.  I bring her to the doctor and she loses weight.  Ugh.  We go through that again and she loses.  She has lost two pounds since June.  This Thursday is the day we asked for the feeding tube to come out.  Why such a big deal?  If I felt that it was in her best interest to keep it in and keep feeding her from it, I would.  However, I don't think that it is.  I am probably thinking worst case scenario with her GI doctor, but we have a history like this.  Who just calls you and says that you need to have an appointment without giving you a reason why?  Who just ignores your phone calls and e-mails?  I find it very unacceptable.  However, we decided to go because we are asking for the tube to get removed.  He is a doctor who has never looked at Lydia for Lydia.  He has looked at her as a diagnosis and tries to treat her based on that.  Does not work.  She has not followed the book since day one and she is not going to now.  I have a very hard time dealing with someone who will not look at the child for the child, disability or not. 

I have been consumed.  It has affected me in every aspect of my life.  But I keep pressing on.  I get frustrated and angry.  I get upset and mad.  I look at her and know that I need to keep fighting.  I pray and ask for more and more and more strength.  I pray and ask for guidance.  As much as I want to say to keep the tube, there is this overwhelming feeling that the tube needs to be gone.  I keep pushing forward on a feeling.  Knowing that going into this doctor on a feeling is going to be a fight, a huge challenge. 

She is eating, but sickness has struck our house.  I am sure the little bit of throwing up will not help her gain weight.  But still I try as hard as I can without pushing it on her and forcing it down her throat.  But I know that this is the best for her.  I also know that if we adjust calories and catch up with her needs, she will gain weight.  I am confident in that.  It is exhausting.  Just being honest.  These are the days when I am so thankful for her smile and her sense of who she is.  It keeps me going.  I am so happy that God keeps giving me the strength and the push.  It is not on my own strength that I can do this, only with God by my side.  I guess because of that overwhelming urge of getting rid of the tube, I know that must be the direction God is pushing me in.

I would ask that you pray with us.  Pray that she is able to gain some weight.  I would also ask that you would pray that I would not be consumed with this.  Pray that I can get a break and focus on the joy she is and not what I have to prove and advocate for.  It is a delicate balance and some days it is easier than others.

So it will be a long week, I am sure, waiting for Thursday to roll around.  But I know God is good and He has an amazing plan.  I will trust in that and lean on Him.  Especially when I am exhausted, feel like giving up, and just consumed with the wrong things.  May Thursday bring that light at the end of the tunnel.

Switching gears...the walk was amazing.  There were people everywhere.  I heard over 1800 participants.  It was so cool and very overwhelming.  Amazing.  We had about 35 people on our team and raised a little over $600.00 dollars.  What a great first walk.  Thank you to everyone who helped us, supported us....tears were in my eyes most of the day. 

We also were able to run into an old friend.  When we were in the hospital, we relied on Child Life to help us with the girls as we would transition.  We met Erin prenatally and she offered a lot of great advice.  Ellen and Allison immediately latched on to her.  She came to our room in December to say goodbye.  Her family was moving to the Fox Cities.  It was sad, she had been such a huge part of our girls life in the hospital.  However, she is now working up in the Fox Cities providing support to families.  We may get to work with her once again.  She was instrumental in supporting the girls and helping them transition so well.  It was a great surprise. 

We also saw Paul and Ginny, their son was the ambassador last year.  He passed one day before Lydia was able to go home for the first time.  We met them as we were walking Lydia on the unit.  There was an instant strong bond and we just connected.  Right after their son had passed, they came to our room to talk and hold Lydia.  It was a very neat experience.  It was great to catch up with them and remember their son is such a positive way.  We never met him, but he did leave big imprints on our lives just from his father's smile.

It was just a wonderful day.  God blessed us with cool sunshine and beautiful fall colors.  Thank you again.

This journey God has us on is such a neat one.  It has its ups and downs.  I struggle really hard some days.  Some days to the point where I wonder if it is worth it all.  I look at her smile and I just melt.  This is the choice we must make all of the time.  We have to constantly die to self and live for God.  We have to remember what He did for us on the cross.  He showed us that ultimate price of love, He sent His one and Only Son to die on a cross for our sins.  While we were still sinners He died.  I am reminded over and over of that and how awesome that is.  It is easy to make the choice to love when you think about that.  I want to consume myself in love.  Love for my Savior, love for my family, love for my church, love for my brothers and sisters in Christ, love for the community I am in.  I want to make that choice every day to not live for myself, to not please myself, but to live for God, to live for others.  It is hard to chose someone else's happiness over my own selfish desires, but I am so blessed when I do, there is such joy.  I am not good at it, but it is at moments when I am totally consumed with something else that God just nudges me a little and reminds me how selfish I am.  Love is a choice, it is not a feeling, it is hard but oh so rewarding.

Please pray for Lydibug and her growth, her eating, and her appointment.  Pray for Eric and I and wisdom and God's guidance.  Pray that God's Will will be done.  Pray that we may trust in God whole heartedly and trust Him, no matter what the outcome may be.  May it bring God glory and may Lydia benefit from the decisions made.  Praise be to God.

Thursday, October 4, 2012

Define Normal?

Someone asked me what it was like to have a baby with Down syndrome.  I had to answer honestly and say I don't know.  I have been pondering this question for awhile now.  I have some feelings I wanted to get to paper before I forgot.  I like to keep these things written down, as I am sure one day this same question will surface again.

Eric and I have always prayed for a healthy baby.  We never found out the sex of the baby.  We just said as long as they were healthy.  As long as they were healthy what?  What if the baby was not healthy?  What if there was an issue?  We did not think past the statement, as long as the baby is healthy.  I am sure not many people do.

So when we found out Lydia was not going to be healthy, now what do we do.  We were very blessed to not have the medical opinion of termination.  We knew our doctor would not terminate and there was no way we would either, NO MATTER WHAT.  Praise God for that.  We just understood that God created this baby perfect in His sight.  Even if we did not deem the baby healthy, normal, accepting in society...God still created a perfect baby and chose Eric and I to be the parents.  End of story.  We did not have to think any farther than that.

However, the reality of having an unhealthy child is still something that needs to be comprehended and thought through.  At 20 weeks my marker came back that I had a higher risk for a baby with Down syndrome.  After the initial shock wore off, we were very excited.  We were happy that we would be able to get to walk down that fork in the road, the path less traveled.  However, I don't think that we prepared ourselves for the medical complications that sometimes come with Down syndrome.  It really was not something that crossed our minds.

So yes, our Lydia was born with many complications, however, ones that were able to be fixed.  The esophageal atresia is rare and there are not a lot of good cures yet, however, this is a very fixable surgery that can be done and we would just have to live with the complications of it.  But it could be fixed.  The heart defect, while major, is something very common and most times very fixable.  Again, she can deal with it.  We counted our blessings because we understood that there were other possibilities that may not give us the odds that we had...she could be fixed.

Our first fourteen months has been a lot of medical issues and fixing them, surgeries, and medicines.  Many people have said that they would not be able to deal with all of that.  About sixteen months ago I would have said the same thing.  However, I can't deal with it, but through God's strength and amazing promises, I am able to manage.  And not just manage but excel.  You really learn how to take one day at a time and make the best of it.  God will not let you break, you may fall, you will have hard times, you will struggle, but He will be there the entire time.  And I do know that as hard as it is, the struggles are well worth the blessings. 

I think we are always scared of the unknown.  What will it really be like to have a child that is different?  Can I handle it?  What if?  What about?  I don't want a child who is not normal.  This can't happen to me.  I feel blessed because I had just a brief period of these emotions.  We had much bigger fish to fry, we had to worry about her medical issues.  By the time those were over, it really didn't matter much, we were totally deeply in love with this girl.  This girl had taught us so much already in just a few short months.  Every time I looked at her, I couldn't help but think how blessed I was and how amazing she was.

I guess it all comes down to that choice to love.  Will we love through anything?  Think about marriage, there are no guarantees about what will happen.  I guess that is why divorce is so easy now days.  However, it is not for me, I will not get a divorce, I chose him and together we will find that "in love" feeling.  It is not always happy and roses.  There is work.  There are days that you just feel overwhelmed, there are those why days, there are those days of how stupid was I, there are the good, the incredible days, there are days of suffering, there are days of anger....well I think you understand.

A child is no different.  Just because we have a child does not guarantee they will be normal, healthy, happy, easy going.  There are so many possibilities that are thrown in there.  But we need to make the choice to love.  With Lydia, there was a diagnosis up front, there was a label on her before we even knew her.  Because of physical features, she will experience that her entire life.  Something that is not fair.  However, she could be more "normal" than one of her other sisters.  Ellen is 5 and still cannot eat without making a mess.  You would think that she was still a baby.  We work with her, we try, but still she is a messy eater.  We all have our things, none of us are normal.  We are sinners, we are not perfect.  And that is what frustrates me, Lydia has so much more to overcome because of her label, but she is really no different than you or me.

She is one of the best babies I know of.  She has slept through the night pretty much since birth, she has a great disposition about her, she is happy almost all of the time, she even wakes with a smile on her face.  She laughs and watches everything.  She loves attention and she is determined.  She will do whatever it takes to get something done.  She pulls my hair, pinches my nose, loves to be tickled.  She gives the best hugs and kisses.  She is no different than Ellen or Allison.  She is normal to us.  Your normal may be different, but she is normal.

Her sisters view her as their sister.  From day one, Ellen never saw a tube in her or anything, she just walked in and wanted to see her sister.  She picked her up like nothing was wrong and hugged and kissed her.  She was always like that, even after surgery.  Allison was a little more intimidated at first, but Lydia has always been her sister.  It is so fun to watch.  There are no labels and the kids are certainly not suffering from her in the least.  They love her, they include her in everything and they understand that she is who she is.  They are around babies that are younger than Lydia and can do more, but that does not bother them.  This is their normal.

You see, normal is all about what you make of it.  Think back to when you got married.  How many of your normals seemed so odd to your spouse.  Really you don't eat chili with noodles?  You just eat beans and meat?  And he was thinking chili with noodles is soup, not chili.  Yeah we have  new normal now.  So, when someone says that we don't have a normal child, I just don't understand.  There is no set of normal out there.  We all have those things in the closet and things that define us.  But most of us were not given a label at birth and physical features to define us our entire life. 

I guess living with a child who has Down syndrome is no different than the next child.  Yes, there are risks and there are delays, but most of it that can be handled.  I was thinking about that today, a friend of ours, their son was in an accident.  He did not heal so was taken in for more tests.  They discovered cancer.  In the course of the year, cancer would define him and change him.  He looked different, acted different.  And in a year's time he would lose his fight to this disease.  There was no prenatal test that could tell you that.  Would that change your course of love?  I am thinking it would not.  His mom stood beside him the entire time and loved him more than anything.  Is she a changed woman because God placed him in her life for 13 years?  I would bet she is.  Any child can change our life.  We are not promised tomorrow and each one of our children are gifts.  No matter what package they come in.

I could go on and on about this.  But having a child with Down syndrome has its ups and downs, just like any child.  The ups are probably more high and the lows are probably more low, but amazing none the less.  There is no definition of normal.  So when the doctor comes back and says that your child is not going to be normal, praise the Lord.  I would not want a normal child...I wouldn't know what that is!

Wednesday, October 3, 2012

One Year Ago Today

One year ago today, my husband and I were preparing to send our daughter to surgery.  This would be her second at only two months old.  Her first was not a major surgery.  However, this one would.  This surgery would change her entire anatomy.  We were scared, but knew that God was holding us.  We were unsure of how everything would go, we did not know how to prepare, but we prayed and trusted in God's promises.

As she was wheeled away, I remember her surgeon looking back and saying, don't worry, I will take good care of her.  I knew that he would.  They said the updates would come every hour to hour and a half.  When the first update was overdue by a half an hour, I was getting anxious.  Just as I was about to go up to the desk, my phone rang.  They were still setting lines.  She was a hard poke and they were having troubles getting the lines they needed.  The nurse told me that she had been poked a lot of times.  I asked how many, and she just said a lot.  I still remember that was the most heart wrenching thing for me to look at, a half dollar sized area full of pokes.  They told me she did not feel it, but oh my heart ached.

It was a long day.  The surgery went better than expected, but still a very long day.  We were able to see her on her way to her new room in the PICU.  She looked awesome!  Lots of tubes and lines, but she was my little girl.  We were sent to a waiting room to wait for about 45 minutes while they got her settled.  Two hours later, the nurse finally came out to get us.  I think I wore a hole right in that floor.  That was very nerve wrecking.

She had a very tough recovery from this surgery.  The first night went really well.  They kept telling us that she was going to get sicker, but we never knew how sick sick was.  Those four walls became our life.  Learning the medical terms, standing firm in what we thought best, talking with lots of people, trying to get goals and being the very best advocate possible.  It was tough.  I was out of my element, but had to learn really fast how to get into a new element because that was my daughter that lay there lifeless.

I remember days when she would be screaming, but you could hear no scream.  She was trying to tell me that she wanted me to hold her, but was unable to (it was seven days until I could hold her and even then she was still intubated), it was hard.  Staying up most of the nights to read and sing to her to calm her.  Trying to get sleep anywhere it fit in.  Trying to adjust to a new set of nurses and learn new machines and what I could or could not do (up until this point, I had been doing everything for my little girl).

Then there was day two out of surgery.  She turned blue and did not have a heart rate.  The nurse did a great job at getting her back, and then she did it again.  It took a little longer to get her back.  Eric walked in on the commotion and thought that they were rounding in the room.  Boy, he was surprised when he found out what was actually going on.  It was so hard.  She coded three times that morning.  That was probably one of the hardest things, but I remained calm because God was holding her.  I actually could see Him holding her there.  I knew that whatever God wanted, that is what would be done.  I trusted Him with everything, I think I had to because there was little else to do.  The situation was completely out of my hands.  God is so good and faithful, even when things don't work out as we think they should.  His plan is far better than ours...even if we don't want to accept that.

The road has been bumpy, there is no denying that.  However, it has been one of learning, growing, stretching, reaching, trusting, faith....and isn't that what life is all about?  I do believe that I am a better person because of this.  I do believe that Lydia has made me a much better person.  She has taught me many valuable life lessons.  Ones that I hope I can apply to my life each and every day.

As I reflect on this day, I just am filled with joy.  I was not sure how I would feel, as yesterday my eyes kept welling with tears.  But there is just such a joy.  And to think, one year ago we did not know if she would eat, we had no clue what the road would hold.  However, late last night I sent an e-mail and a report to our GI doctor.  We have requested that her tube be removed next Thursday.  We will see what happens, but we did write a "report" stating reasons why to remove it, why it would benefit her, and what our research had shown.  I don't know if I ever spent that much time on a project in high school or college, but I am glad that I had those skills.  Would you join me in praying over the words that were written, both by us and our therapists, and our doctor.  That God would reveal His plan.  I do feel like we prayed and had much discernment, that this is the road God is leading us down.  But prayers would be greatly appreciated.

There is one other thing that sticks out in my mind.  When I was pregnant, I had two people, one a stranger and one a friend, who said I should have aborted Lydia.  They told me that she will be nothing but trouble and who would want a child like that.  After Lydia was born, I had two more people tell me that she should have been aborted as her life is nothing.  I am here to say that her life has meaning and a lot of it.  I am not sure how many people her story has touched, but that does not matter....she has touched our family deeply.  She has made all of us better because of her.  Yes, the road has been bumpy, but we have not been broken.  We are stronger and better because of this trial and her.  I have to say that the comments don't anger me anymore, but I think those comments root my strong desire to create awareness about Down syndrome and being a strong advocate for your child.

And to those people who apologized for us having a child and who apologized for our tragic misfortune....she is healthy, vibrant, and full of life.  There are no promises of what the future will hold.  At any moment Ellen or Allison could get ill and change how we know them as today.  At any moment Ellen or Allison could be involved in an accident and again change their abilities or their appearance, but that does not mean that I don't continue to love them and I would never stop loving them.  Just because Lydia was born with these complications does not mean that you have to apologize or can it a tragic misfortune.  Don't get me wrong, I wish she NEVER had to suffer.  However, without this trial, she would not be who she is.  Without the extra 21st Chromosome, she would not be Lydia.  And we would not have learned the lessons we did, we would not be as strong as we are today, and we would not be the same people.  I am proud of my daughter, I am proud of her extra Chromosome.  I am proud that I was chosen to be her parent.

I am passionate about creating awareness.  Mostly because I did not let those comments get to me and influence my decision about my daughter, but I did let them get to me to get out and break down those myths.  She is no different that me and you.  Aside from her medical issues, there has been little difference with Lydia and her other sisters, besides maybe a little delay, LOTS more smiles, and just an incredible disposition.  I feel bad for the folks who let appearance and false information get in the way of loving.  You really are missing out.

Tuesday, October 2, 2012

Just a Mom

When was the last time that you took the day to just snuggle your little one?  When was the last time you took time out to just cherish the blessing God gave you in your children?  Even though I am a stay at home mom, my to-do list often gets in my way.  They ask me to color and I say one second while I just tidy up this pile of papers.  That one second turns into several minutes which soon the day passes and you realize you never did make it over to color a picture. 

Satan has a funny way of stealing our time.  Distracting us from the things that are important.  This has been on my mind a lot lately.  In the hospital we were totally focused on one thing.  The things that distracted us, often times, were issues that were related to Lydia's health.  However, there were very few times I thought about how I looked (lots of time I was woken from a sleep to talk to a doctor), if I was pumping and someone came into the room, I just talked to them while I pumped. Everything we did was centered around Lydia, making her better, and how to help and support her.  Our focus was directed and not many things took our mind off of that.

I have been trying really hard to take what we learned and actually apply it to my life.  Often times we learn, but we don't really put it into practice.  I think that is one of the hardest things to do.  I want to be totally focused on my children.  God has allowed me to be a stay at home mom.  While the job, most days, is anything but glamorous, it is what He has chosen for me.  I must bring Him glory, no matter what.

Today was one of the first days I was able to have a day totally devoted to Lydia.  She was really off her game and she was getting to me.  I found myself thinking things like, you are cramping my style, do you know I have things I need to get done today?  She doesn't understand.  So, with piles of laundry backing up, a full dishwasher that needed to be emptied, a house that needed to be picked up, clothes that needed to be washed, I sat and held my child.  I was being a mom.  She needed me and I needed her.  It has been a long time since I have just embraced that part of being a mom.  After all, I am spoiled.  My fourteen month old still likes to snuggle.  She is not mobile yet and she still wants/needs her mommy.  I guess there are blessings even when we don't think there are!!!!

I also noticed when I went to pick up Ellen, we just sat and talked.  She told me what she did all day at school.  She went on a field trip today and she told me about it the entire way back to our house.  What a special moment.  I concentrated just on her and the joy of being a mom.  I found myself watching my rear view mirror a little too much.  I just found such joy in that moment.

When Allison was getting off the bus, I saw her run to me.  I saw the joy in her eyes.  I heard the excitement of her day as she started telling me all about her day.  I wondered how many times I had probably missed that.  I held her hand as we walked up the driveway and listened to her.  She came and unpacked her backpack and read me her book.  Mom can we do more learning stuff together...and we did.  It was just one of those moments that taught me and reminded me how precious life is, how we need to embrace every moment.

So while I don't live in a big fancy house, my house is not neat all of the time (it usually is clean though), you can come in at any moment and find laundry, or toys spread out on the floor, I usually am a mess (some kind of baby food on me, hair not quite right), but I would not trade that for anything.  This is the glory that I need to give to God.  I need to remember that He placed me here for a reason.  He chose me to be a stay at home mom, to raise these children according to His way.  He trusted me.  I need to embrace that more and remember that.

I am just a mom and I am happy about that.  I will never win any awards, I will never be famous, I will never live in that mansion, I will never have a magazine-fit body, but I can color, I can sing Jesus Loves Me, I can play a pretty mean game of Candy Land, and I still get stains on my clothes just as I did when I was a kid.  I will relish in that, knowing I am giving everything I have to my kids.  This is where God has me, this is the season of my life that I can just pour everything into my kids.  I am going to try to take more time to embrace that.  I am going to let the clothes sit, the dishes air dry more often!  I will laugh and have fun with my kids and make memories.  Thank you God for this special blessing....thank you for allowing me to once again realize this important job you have given me.  While I realize that maybe not every day I can be thankful as I am today, I would like to strive for that!

On another note, one year ago today we were preparing ourselves as Lydia was getting ready to have her connection surgery.  I added a picture to my facebook page and wrote whatever came to mind.  This is what I said (sometimes I can surprise myself with my own thoughts!) "While we could have never prepared ourselves for the month after this surgery, we could not have prepared ourselves for who she is today.  We are so blessed."  To me that goes with embracing the moment.  We are not promised tomorrow and we don't know what God holds for us, so embrace what He has given you now.