thank-F-U-L-Lness

My fingers are itching to write and my brain says I cannot keep up.  My brain needs a rest from everything.  So I thought that I would jump on the bandwagon like all of my friends from face book and write about what I am thankful for.  After all, Saturday when I was in Target, I was looking at the little girl dresses and just started to sob.  I actually and able to get a Christmas dress for all of my girls, that they can all wear together, and they can all attend church.  This year we can all be under one roof for this great holiday!  Wow!!!  So thankful!

I guess on today, election day, it is a great day to be thankful for many things.  I am thankful that we live in a free society.  I am thankful that I am not getting persecuted for my faith (well, at least I can be very open about it, live it, and not hide it).  I am thankful that I know, even under these circumstances, that God is God.  He is sovereign and He is King.  It does not matter what happens in this election, because He is still God.  His plan will continue no matter what.  I am accountable to only Him.

I also give thanks for trials.  This last year has been an emotional roller coaster.  It has seemed like an uphill battle most of the time.  However, God has provided abundantly through all of it.  Most of my requests have not been answered the way that I have asked, however, God's Will has been done and it has been amazing.  I am so blessed to be part of this journey.  While I would never want to relive everything, I would not take one thing away.  For it is every large and small detail that has made me me today.  My faith has been strengthened, I appreciate my daughters, my love for my husband is strong and awesome.  I feel like I am a renewed person.  I have learned so much about faith, trust, hope, love, and most importantly about who I am as God's child.  Without this trial, I would not be me, Lydia would not be Lydia, Ellen would not be Ellen, Allison would not be Allison, and Eric would not be Eric.  We have been changed, but more importantly we have been shaped and modeled by our Heavenly Father.  We have been loved and provided for beyond what we deserve.  My words cannot quite describe how I feel about it, but I am so thankful for this trail.  I just praise God.

I also love that God sent His Son to save me.  Without that, I would not have my saving grace.  I would be nothing without God and Jesus and the Holy Spirit.  I am so thankful.  I am blessed.

The list can go on and on, however, my eyes have been opened to other things.  As we enter this holiday season I am going to try to not focus on gifts, on the things this world tell us is important.  However, I am focused on what God has been teaching me, what God has taught me last year.  People who gave their Thanksgiving to come and serve those who were hurting.  Those people who could not be with their families, or those who were there because their families were divided because of sickness.  Being at the Ronald McDonald House has opened my eyes to a whole new way of thinking.  People put others before themselves.  They were serving because they wanted to.  They were helping others.  It was amazing.  There was a chef that came in on Thanksgiving and prepared for hours to provide a meal to many families.  There was a church that came in and helped out.  It was so awesome.

And not only at the Ronald McDonald's House but at the hospital too.  There were nurses, doctors, care partners, greeters, the hospital was in full function.  It was amazing to see.  A cardiologist actually came in to talk to us on Thanksgiving about our daughters surgery.  A physician assistant came in to get signed consent for Lydia's heart surgery.  They did not take a break.  They were still serving others on a Holiday.  Yes, I realize they still get paid, but they are sacrificing a lot to be able to take care of sick little children.  It was amazing as well.

I guess it just opened my eyes to yet more stuff that goes on in this world.  I am thankful for my family, for our health, for being together, for our church family, for all of the material blessings.  But mostly, I am thankful for the things that I have learned through these trials.  I could not be me without these trials.  I could not realize the full blessings I have without these trials.  To think, we have the opportunity to look at a trial and feel sorry for ourselves (I know that I have done this), we have the opportunity to look at a trial and just give up (I have been there too) and we have the opportunity to look at a trial and just fall to our knees in blessings.  I have been doing this a lot lately.  I realize there are probably stages that we all go through, but to be able to say thank you in the trial, is the important thing.  God gives us these trials to shape and mold us.  To make us be better, to increase our faith and knowledge in Him, to give us more trust and strength.

While I am thankful for all of the little things to, I am so thankful for the moments that God has given me that have pushed me to my limits, that have shaped me to be the person that I am today.  I am thankful. 

We have already started to listen to Christmas music in our house, my Christmas cards are actually all done.  However, all of those things mean very little.  It is about being together, about being healthy, about having our Savior born and how important that is in our life.  Thanksgiving is something we as believers should be doing every day.  Thanking God for allowing us one more day to be alive and spread the Good News. 

I did not mean to get so "holiday season" in this, but in my mind, I am already there.  I am excited because I know what it means for me personally to celebrate the birth of the Savior, because that is one of the things I am most thankful for.

Today Lydia has not been eating very well.  I have been praying and waiting on God.  Those that wait will renew their strength.  She did very well in therapy today, however.  It is just a matter of weeks probably before she will be taking off and I will have to run after her!  We are very excited.  It has been so fun to watch the process.  To really see how much work it takes to crawl.  The steps in getting there and watching her accomplish each one.  What a blessing that is!

Who will you believe?

It has been a nice and relaxing weekend.  One that was needed in this house.  We did much of nothing except hang out as a family.  We created many memories and laughed and smiled.  I think it was a little bit of reteaching one another what a family is suppose to do.  We left the things we just can't seem to get away from go for moments and really just enjoyed the simple moments.  It is hard to do this in life, but something that we just need to do.  What a great weekend!

One thing that I have been thinking about a lot is the irony of some things.  I think there is a lot of odd stuff in this world that just does not make sense.  So, let me tell you about the one that really has been bothering me.  There is a movement to do more and more genetic testing to see if an unborn child has a "defect."  If this "defect" is detected than it would just be nonsense to allow that unborn child to live in such a matter (no one really asks that child if it is OK or even the parents).  There are scare tactics and lots of statistics thrown at people to make them think that killing that child would be the best thing.  I realize this is not the case all of the time, but if you are up on your reading, about 90% (or better) of the unborn children who have tested positive for Down syndrome alone are killed.  That is not to mention all of the other "defects" where the child is killed.  Or there are such things as non compatible with life diagnosis that doctors label children with. 

So, the doctors seem to think they have this figured out, except when a child who tested positive for Down syndrome is born and is perfectly healthy.  Or a perfectly healthy child is born and has Down syndrome.  Well, something must have been wrong with the test, something went wrong.  Or could it be that we just don't know?  Maybe we are not able to look into a crystal ball and know everything.  Maybe science will only take us so far and we just have to trust in God for the rest?  I am not sure.

So, let's say you get through the pregnancy and have the child, now, this same profession wants you to trust them to care for your child?  Remember, this is the same one that thought that they did not have a chance, the same ones that said your child would be better off dead.  And you want me to trust you to care for my child and give me advice.

Really, in a lot of cases, you have no choice.  If a child, like Lydia is born, there are so many medical complications you must trust.  So you do.  Mistakes are made, your child does the very same things that they said she would never do.  Your child does not match the label that they are given.  Your child does not fit the description in the books.  You child certainly does not do as they are suppose to do.  Now what do you do?  Just let them poke your child one more time?  Just let them run one more test?

And what happens when you trust that person and they tell you something so absurd?  Something like your fairly healthy, developing child would be better institutionalized.  You can just wash your hands of your child and move on.  GULP, let me swallow this.  No, I think not.  And then you are to continue to trust them?  You are to continue to have them give you advice about your child?  I think not.

OK...so I am being a little sarcastic here.  Sorry.  Well, not really.  I just can't help but think how ironic it is.  How insane this sounds.  These doctors, sometimes, think they know more than God.  They think that they can play with the parents emotions and feelings.  They can predict the future.  Now, we have had some INCREDIBLE doctors.  I am not saying all of them are this way.  We were very blessed that we were not pressured, by a doctor, to have an abortion.  Most of our care takers and nurses and doctors and surgeons were great.  However, sometimes it is just that one bad apple that spoils it all.

I have been praying and trying to release this and ask God over and over what I should be learning.  I just cannot give it up.  I just seem to not be able to let it go.  I have been here before.  I have asked these same things.  However, this time it I just could not put my finger on it.  I was actually sitting in church and I was slapped across the face.  Duh....I keep asking the doctors and I forget to ask God.  Yes, I ask Him what I think, but not what does He think.  I ask for His Will to be done, but not really.  I want her to grow and I want her to be healthy, I want all of this.  I am asking doctor after doctor, but I never really asked the Great Physician.

So maybe this is as clear as mud to you, but this is as clear as bathwater to me.  It just made sense.  When I was born again, I remember that I am different than this world.  I live to a different standard.  I am accountable to God, not to this world.  I am not of this world, I am just in this world.  This is my temporary place until I meet my Father.  That is so wonderful! 

I guess my slap in the face was this is just one more thing of why we cannot trust this world.  These doctors are human just as I am.  They are sinners just as I am.  They cannot predict Lydia's future.  Yes, they have more information of the anatomy of her body than I do.  They know the inner workings better than I do.  They can give me insight and they can give me perspective.  However, they cannot predict what she can or cannot do.  It is unfair for them to do that also!

The only thing we can trust in life is God, His promises.  He has been the only thing that has been constant, unwavering, unchanging, in this total mess of a life.  He is always listening, even when He is silent, He is there.  That light turning green on your way to work when you are late, that extra $20 that you found in your pocket when you thought you were broke, that smile from a stranger when you were tearing up in the store.  Those are not coincidences, no the God who created this world, He planned each and every detail of your life.  He cares and He loves you, it was not by chance, it was by design.  Praise God!

This is just so exciting to me.  So I am not trying to put down the medical world by any means.  We are so thankful to have all of the nurses and doctors and surgeons on Lydia's team.  We are so thankful for all that they have done.  But I needed this reminder.  I have been so focused on what they have been telling me and trying to get it all right, that I somehow slipped into this world.  I somehow put it first before my Father.  It is so easy to do.  But He is so loving and gentle that He just reminded me, He taught me.  I am so thankful for that.

But the irony in somethings is just funny to me.  When you stop and think about it, it really does not make sense.  Yet, in our world, we try to make sense of it.  A lot of times we put all of our stock in that.  We make ourselves crazy (yep, I am guilty of that) trying to make it make sense.  God is waiting there, He wants to help us.  He may not answer the way that we want Him to, it will still be His plan, but He will be there.  It often times is a long hard road, but He will never let go.

Crazy thoughts tonight, I am just so gitty about what God has taught me.  Now to apply that to life.  To not only remember it this time, but the next and the next!!!  Thanks for sticking with me to the end of it.  I need to mention again, we have had wonderful wonderful doctors and nurses, I am not trying to put them down.  I do believe that God hand-picked each one of them for a very specific reason and purpose (and yes even the ones whose bed side manors are less than desirable), we have been blessed.  So, please hear me when I am talking about the irony of the crazy world we live in and I really am praising our medical team because it was all God's doing.  Glory to Him.

I have to add, on day six, Lydia threw up.  He has a wonderful sense of humor!  However, I don't believe that she was sick, we are thinking that it is a gag reflex from her teething.  But she is slowly starting to increase fluids.  So continue to pray that this would be God's Will.  She seems to be doing well.

The Echo is scheduled for November 14.  Please pray for this.  Pray that Lydia takes the sedation well and that we get a clean Echo.  Also pray that she is able to stay healthy for the Echo this time!

Thanks again for your prayers and support.  We really appreciate them. 

Defending Life

The music is playing and I am holding Lydia.  We sing (well I sing and she sings in her own way), I turn her gently and she lets out a howl, showing me she loves to dance with mommy.  We sway back and forth and turn a couple more times and she is smiling with delight.  These are the moments that people need to see, she is just like anyone else.  She is a child, she has a beating heart, she loves to experience things, she laughs and enjoys life.  She is a child of God, she is special and she is just like my other children.

I cherish these moments with her.  It was not too long ago that I could not because she was too sick.  And too soon she will be too big to do this with, so I will savor these moments.  I have danced with all of my children and it is has been something that I will remember as they do.  It is quiet moments of pure joy to share with your children, to just embrace that moment.

It has been weeks since I have been able to pick her up and dance.  I have allowed words to get the best of me.  I remember that saying when I was younger "stick and stones may break my bones, but your words will never hurt me."  I can't help but think how wrong that saying is.  Words can crush a person.  Yes, you have to let them, but they are hard to shake sometimes.

I just cannot shake the fact that a doctor told me to wash my hands of my child.  Breaks my heart.  If they are really in practice for children, why do you feel that way?  Every life, no matter what, has purpose and is special.  No matter what the circumstances were that that was said under, I think it is inappropriate.  When I was pregnant and shortly after Lydia was born, I did have several people tell me that I should have had an abortion/aborted her.  However, most of these were strangers or distant friends.  People that I could disassociate myself with easily.  However, when it is someone that you are suppose to trust and rely on for advice and knowledge of how to raise you child, it is really difficult.

I am not sure why so many people have to defend why they had their child.  Why is she any different than anyone else?  I praise God that our family has been pretty shielded and we have not run into that too many times.  However, some people have to constantly defend the life of their child.  Down syndrome does not make her any different.  It does not define her.  There may be some limitations, but we all have those.  What she can offer is different than what I offer, but that is what makes life beautiful.

I can't quite explain how upset this subject makes me.  Mostly because I don't understand why I need to justify her life, when there are other people out there that don't.  A friend of mine just found out that her daughter has cancer.  Does that make her child less of a person?  Her life may have limitations, she has medical issues, and she is struggling.  Does she have to defend why she had her?  No.  It just bothers me how judging and inconsiderate we are as a society.  We want to be accepting of everyone, yet we go to great lengths to make sure our child is not that one.  Oh I don't want Down syndrome, oh I am so sorry for you, oh it has to be so hard.

What I can say, however, is the blessing that these folks are robbing themselves of.  Lydia, as all of my children, has been such a blessing.  She has taught me more about myself and what in life is really important.  And let me tell you, most of that is not because of her Down syndrome.  It is because she has had some defects and yet has over come them with a smile on her face.  She is determined.  She looks at the glass as half full all of the time.  She tries and tries until she get it, she does not give up.  She looks at the good in things.  She laughs....a lot.  She smiles all of the time.  She chooses to look at the good and not the bad. 

So, I picking myself back up and trying to put all the pieces together.  I have grieved over these words long enough and they have robbed me of some weeks.  However, I know that I am stronger now because of it.  I am more proud of my daughter (all of them because they also heard the comment) more than ever.  What we are learning now is something that no one can teach you other than God.  God loves our family enough to give us this miracle.

The road has been tough lately.  There has been a lot of things going on.  However, the blessings that we continue to get are amazing.  Each day is something new.  The road has been lonely and weary.  The circumstance has gotten the best of me.  However, now that the mud is getting clearer, I am stronger, and am more faithful, I am a better person.  God is teaching me.  God is showing me what is really important.  God holds my tomorrow, and now more than ever, I am SO thankful for that.  The world is a scary place, and I find GREAT rest knowing God has it, I need not worry!

I made a verbal complaint to the GI clinic about our doctor and that the nutritionist never returned a phone call or an e-mail for 5 weeks.  I am getting past that and see just how resilient Lydia is....she is overcoming great obstacles.  It is all because God is working in our lives.  He is a miracle worker, big and small, He has everything covered.  On a side note, if you are ever someone making a complaint about an inappropriate comment, don't defend the person and try to "cover up" why they may have said that.  That may have gotten me a little more fired up.

So, yesterday Lydia had her 15 month appointment.  Last week she was down weight a lot.  She was only 15lbs 12oz.  Yesterday, she was 16lbs 3 3/4oz.  WOW!!!!  Ellen yells, mom now that is something to celebrate.  Yes, honey, yes that is.  The prayers are working!  Our doctor thinks that she looks great.  We hope that we have changed a couple of things around with her nutrition and this will help her out greatly.

We still need the prayers as we are not out of the woods at all.   We still need her to stay healthy, that is really going to be the key for us over the winter.  She still needs to continue to drink.  We are not at our goal, but we are getting closer!  We have decided to stay away from the tube for the time being and see what she can do on her own.  She also needs to continue to eat (just a side note for any of you mayo lovers...Helmans really is a lot better for you than store brands.  We are using mayo instead of oil, but Helmans is like 60 calories and the store brand is 110...so we are using the store brand naturally!)  Thank you for your prayers, we ask that you continue to pray for her.  We ask that she continues to stay on this track. Well, maybe not 8oz a week, but at least 2oz a week!

We are not on as big of a push to get the tube out.  Our concerns were that she was not spending anytime on her stomach because of the tube.  She was also getting a lot of infections from it and it seemed to be causing her discomfort.  Since switching back to the smaller tube, we seemed to have resolved many of those issues.  So, as we discussed with our pediatrician, we will try to leave the tube in for the winter just in case she should happen to get really sick.  The tube will allow for some different options then.  We are satisfied with that.

She will see her new GI doctor the end of December.  Please pray for that as well.  It has been a long battle with GI and we just could use a break!

We are still waiting to hear back from cardiology as to when her Echo will be rescheduled.  We would like to just get a clean Echo so we can put the heart stuff behind us for a bit!  That would be awesome!

I will defend Lydia's life until I die.  She deserves it.  I guess it teaches me that we all classify life somehow.  However, we should not.  We have no business doing that.  I am sure that I do it to and don't even realize it.  Everyone has a purpose and is special.  God does not make junk.  I am just blessed to be able to realize that each and every day.

Education has been a big thing for me.  Yesterday I ran across an amazing video.  If you have about 14 minutes, I highly recommend you watching it.  And don't just watch it, but pass it along.  Continue educating one another on the blessings of life.  May we all be able to embrace the life God has given us (sometimes I catch myself here because I am not asking you to embrace lifestyles, choices we make, but the differences in how God created us physically.  I hope that makes sense, but I do believe the Bible and know that some lifestyles were not created by God and therefore I am not saying embrace those.)
http://www.youtube.com/watch?feature=player_embedded&v=5M--xOyGUX4&noredirect=1

I hope this link works!  It is great!

As we start off November, it is the month to be thankful.  I believe that I can't even begin to start to thank everyone in our journey, however, I give thanks to God for sending His Son to die for me.  Without that, I am nothing.  Thanks for saving me, Father!

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 better....it 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 encouragement...it means A LOT to us!  Thank you!

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 I....it 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 that....no 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.

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 sin...so 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!

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.