Thursday, April 17, 2014

I Got Something I Didn't Want!

Easter, to many it means baskets and candy and grass and the Easter bunny.  Often times you will hear children say, "I didn't want this."  There may be looks of disappointment on child's face when the Easter bunny left something that they did not want.  There may be many disappointed children who got something that they never asked for.

I have been thinking about what the Cross means to me and what Jesus did for me up there.  While Jesus prayed in Gethsemane, right before He was crucified, He said "My Father, if it is possible, may this cup be taken from me.  Yet not as I will, but as you will." Matthew 26:39.  And a little later Jesus once again prayed, "My Father, if it is not possible for this cup to be taken away unless I drink it, may your will be done." Matthew 26: 42.  And He went away one more time and prayed the same thing. 

My heart aches because He knew what He was going to do.  He was going to die a horrific death.  I am sure that is something that He did not want and it was certainly was something that He did not deserve.  And the most amazing part of this incredible love story is that He did it for me (and you), and we are nothing more than dust.  He loves us that much.  His Father sacrificed His ONLY SON for me and you.  It brings me to my knees, it is the ultimate picture of love.  These verses in Matthew display the emotion of this moment.  It is so intimate and personal and just speaks to me in such a profound way.

And yet I still complain about getting something that I did not want.  Often times I hear myself saying over and over that I don't want to travel this medical journey anymore.  It is too hard.  However, emotionally it is very exhausting, yes, but it is nothing in comparison to what Jesus had to endure.  AND, the best part is, I have the Holy Spirit, I have Him by my side all of the time giving me the strength and what I need.

I think back to hearing about Lydia and all of the things associated with her.  I prayed for a healthy child, I prayed for a child like my other children (just being completely honest), I never prayed for this.  I never expected that I would have a child with Down syndrome, yet alone all of the medical issues.  I never wanted this, my life did not have room for it.  However, I never knew that I needed what I did not want.  I am finding that the best blessings come in the most unusual form. 

I would not associate that the best picture of love would be hanging on the cross, and yet it is.  That is what saved me.  That is what has given me purpose and meaning in my life.  The picture of the cross is the most amazing love story I know of, it has the most meaning and purpose for my life.  Yet, it is not a warm fuzzy that most people associate with love (Remember love is a choice, love is not a feeling.  Love is a sacrifice and love puts someone else first before myself.)  I would not associate the cross with a love story, yet it is the ultimate one.  It brings me to my knees to think about what Jesus did for amazing and awesome that is.

And there was a time in life when I thought that Down syndrome was not something for me.  Little did I know how much I needed Down syndrome in my life.  See, it has opened me to a whole new person.  In many ways Lydia saved me.  She saved me from a life that was going in the wrong direction.  Material things were quickly making their appearance at the top of my most meaningful list in life.  Worldly things were interrupting my time with God and the purpose He had for my life.  Lydia allowed my life to slow down and re-examine what was really important.  Lydia was able to show me life through a whole new lens and that is exactly what I needed.

I could say the same thing for the medical journey.  I did not want to spend months in a hospital watching my daughter fight for her life.  I did not want to spend every last resource that our family had to pay for my daughter's health.  I did not want my other girls to have to sacrifice their life for their sister.  I did not want to spend precious time away from my girls, missing things of theirs that I never thought I would have to.  I did not want to spend my life taking care of someone, rushing to doctor appointments, juggling therapy schedules, and stressing myself out over eating and food.  I did not want any of it.

However, I never knew that what I didn't want was exactly what I needed.  I guess I didn't know that because I don't know my life quite like my Father does.  He knows exactly what I need when I need it.  I still have trouble with that and I still fight Him on that.  However, He is patient with me and He quietly waits while I learn this (even if He has to show me time and time again!).  He loves me so much and He wants me, all of me. 

And yesterday morning was a perfect example of getting something that I didn't want.  I have journaled and blogged and written about our feeding journey.  It has been one that I never wanted.  But yesterday, God showed me something.  We have been battling all kinds of things lately.  I have been praying and pleading to just let her eat.  It is hard, I have NO CONTROL over it and I desperately seek to have control over it.  I want it to go the way I want it to go (remember, I got something that I did not want). 

Yesterday, we did the same old routine.  I fought the inevitable.  I did not want to feed her but I had to.  What was I going to feed her this morning?  I made a plate up of cheese, Cheetos, and leftovers from the night before that she seemed to enjoy.  All of the girls sat down for breakfast.  I prayed just as I do every single morning.  Allison bit into her bagel.  She set it on the table.  Lydia decided to grab it and take a bite.  When Allison asked for it back she would not give her control of it.  I told Allison that if Lydia continued to eat it I would make her a new one.  Yep, that's right, Lydia ate an entire bagel.  I ended up making a new one for Allison.  I wept and I sobbed and so did Ellen and Allison.  In that moment, we all understood that God gave us what we prayed for even though it did not look quite like what we expected.  We just witnessed one of God's many miracles!

It was in that moment that I still cannot quite describe.  All of the silly games and stress and tears, all of the begging and pleading flashed before my eyes.  I understood something that I still can't quite understand.  I know makes no sense, but there was a peace.  I felt God telling me, see, in My timing I would make it all worth it.  And yes, in His timing she ate, I did not have to play silly games and stress (for that meal anyways!).  The eating is still up and down and very hard, but even though I got something that I did not want, I have been blessed beyond measure.  Even though I got something that I did not want, I understand so much better that my Father knows exactly what I need, when I need it.  I am changed, I have grown, my faith is strengthened all because I was given something I did not want.  See, that is the best gift, that is something that is so amazing.

Just like the child who receives something that he does not want, give it time and eventually he will play with it, he will like it, and it might even become his favorite toy.  Isn't it funny how we fight and kick and scream when we get something we don't want, but in time, it usually becomes something that we can't live without.  I may be stretching my analogies a little bit in this post, but I hope you get my point.  I would have never chose to have my Father sacrifice His Son for me, but I am so glad that He did.  I could have come up with so many other "better solutions" but in the end, I am so glad that He did the way He did.  It is a picture that will never leave my mind, it is a picture of love, the ultimate sacrifice that has change me.  I don't think that I would have ever chose a child who had Down syndrome for me, but now I wish I was in a place that I could care for a whole army of children with Down syndrome.  I would never give her up and I would never look at it as something that I did not want.  I need her, she makes me a better person.  I also know that I would have never chosen a child with many medical issues, but now I know I am capable of a love that would never say no.

Thursday, April 10, 2014

I had hope despite the despair

I will never forget the day when they brought Lydia out of her first surgery.  I was a hormonal mess because I had just given birth to her two days prior to that, I was unable to hold her much, there was always a social worker or a genetics or someone wanting to talk with us.  There was no time to just be a new family of five.  But I will never forget seeing the picture of her anatomy and processing what that gap meant.  They briefly discussed this with us but said that it was so rare they did not think she would have this.  But, right there staring me right in the eyes seemed to be my worse nightmare.  They did not have to say anything to me, I knew.  But I was filled with hope that her esophagus would grow, that it would lengthen and she could obtain a primary repair.  I had hope despite all of the despair.

We would spend the next two months researching procedures, talking with specialists, praying, talking with nurses, talking with family, talking with friends.  We would reach out to people across the country and learn as much as we could about Esophageal Atresia, what that meant for Lydia, and what would be the best "cure" for her.  As our surgeon talked with us, he said unfortunately your daughter was born with a defect where there is no good cure.  Everything you do will come with it's own set of complications and risks.  We can attempt to give her the best shot at life, but know that you will always have some kind of issue.  I was ready to take on this battle and I was ready to fight.  I had hope despite all of the despair.

We would get opinion after opinion.  We were invited into medical conferences discussing Esophageal Atresia.  We would hear the professionals discuss the different repairs, the risks and the benefits.  We would pray and beg for the growth that we needed so we did not have to make this daunting decision.  We felt like we were becoming the experts in such an unknown and unwanted field.  This was all so foreign to us but was not becoming our new reality.  We knew that our hope was not in the repair, in the surgeon, in the growth, but God would help us no matter what we chose.  We had hope despite all of the despair.

Our surgeons were recommending the Gastric Transposition.  We went to research it and there was nothing good about it.  It was so scary.  I would have nightmares about what this would mean for our daughter.  I would cry out and beg for anything but this.  The information on this particular surgery was frightening to say the least.  She would be malnourished, she would not have a good quality of life, she would have such sever reflux, she would never grow properly.  The list went on and on.  The fear rose, but God continued to calm our heart.  We pushed through the information and we tried to process it.  There just were not many options.  It was beginning to seem so hopeless, how could I make this kind of decision for my daughter?  The hope was beginning to look so small, but we continued to have hope despite all of the despair.

We talked to surgeons who were known for "fixing" bad repairs, for a method that could only be done over there.  We had so many questions and so much fear.  We sent over our daughter's file, prayed and hoped they would say they had a cure.  Instead we heard horrible things about kids with the Gastric Transposition repair.  We asked if his method would be right for our daughter, what kind of hope could he offer.  We heard death and we knew we could not risk her life.  Because of all of the other things Lydia had going on, this surgery was too risky and they feared that she would not make it through it.  So, we crossed off that and our fear grew by leaps and bounds.  We were terrified at the decisions that needed to be made.  Couldn't anyone, someone, just offer some hope?  The hope of finding some kind of cure grew smaller and scary by the moment.  We were trying to have hope despite the despair.

More opinions and more outlooks that were not looking so good.  As our surgery team came in and spent hours upon hours talking with us, proving themselves as they took such great care of Lydia; the choice became clear.  It was not what we wanted, it was not the kind of decision that you make for your child.  How could I make a decision to give her a life full of horrible things.  No one offered any kind of hope, no one said it would be OK.  The negative took over and the fear paralyzed me.  My hope had almost completely left, but I knew God was still holding me; He was asking me to trust, it would be OK.

October 2, 2011 was the big day.  She would be in surgery all day.  They expected 12 to 15 hours of surgery.  How can this be?  My tiny baby, I would miss her, I would not be able to hold her, what would the future hold?  As she was taken back to surgery by her surgeon, he held her so close, he looked at me in the eye and said, "I am holding her, I have her and I will take good care of her."  Word that I found hope in during the long hours of surgery.  There was hope, there was a promise that things would be OK.  I had hope despite the despair.

Her recovery was anything but easy.  She had a leak, she had a lot of nasty stuff in her lungs, she was having trouble breathing, and it was just that up and down cycle of a roller coaster.  As hard as it was, we saw our girl fight, we saw her do things doctors did not think were possible and we saw hope.  Every day was difficult and hard, but every day brought a new hope, brought another smile and we knew that God was holding her close.  It is not something that I would ever want to go through again, but it has changed our lives and hers too and it is not bad.

Fast forward two years ahead and things are wonderful.  OK, not every day is great, but it is nothing like what we read about.  It is nothing like what we were told, not even close.  There are battles and there are struggles, ones that I wish that we would not have to face, but every day is a miracle, every day she proves to us just how strong she is.  I have hope now that just pours out for God has showed me just how faithful He is.  Yes, it was a decision that I did not want to make, but we did our research, we asked our questions and it is a decision we never have to look back on.  For us, for our situation and our baby, the Gastric Transposition was our lifesaver.  We had the most amazing surgery team and she is thriving because they shared their gift they were given and God had His Hand in all of it.

I wanted to write this to give hope to those of you who are battling making a decision about your child.  I wanted to give hope to those who have to make this decision.  I understand that there is no good "fix" for this defect, but there is hope.  There are "fixes" that will give your child a great quality of life.

So here are the details of our day to day struggles with Lydia.  She does experience some reflux, but I would say very little compared to what we were preparing for.  She will go months without refluxing.  She does have problems handling her secretions and we find that she will reflux more during these times.  She is a very healthy little girl.  She does seem to get "sicker" when she does get sick, but she always bounces back very well.  We do have to take precautions, watch what she eats, she sleeps in a Comfy Lift Bed to keep her in a safe position.  She runs and plays with her sisters and has more energy than both of them combined.  She is small for her age, but my other girls were too.  She also has Down syndrome and she has Congenital Heart Disease.  But she is not malnourished by any means, she is very healthy.  She does have issues eating, but a lot of that is from her journey that she had to take because of all of her diagnosis.  She is getting it though.  She likes to drink, she loves toast, and she is really up to try anything...usually just a bite though.  She likes chicken and French fries and cookies and ice cream.  Feeding is difficult and has required a lot of time, but I can't say that is just because she had a Gastric Transposition.

Lydia has had no dilation and no strictures.  She has gone in a couple of times for Esophograms to make sure that "mechanically" everything is working well and it has.  She has no motility issues.  She has little reflux (she is on Lanzoperzole twice a day).  Lydia has had no issues on choking on food or getting food caught.  She does not aspirate either.  While she can't handle her secretions very well and we can't throw her up in the air or shake her too much; she does wonderfully.  She is just as active as her older sisters (if not more) and she is a bundle of joy.

I write this because I would have found it very comforting to have someone tell me something good about this surgery.  I would have appreciated someone giving me hope.  We all have to make our decisions based on our child, the diagnosis, and our situation.  There is not really a good "fix" as I said before, so it is what is best for you and your family.  For us, there was no other option, we don't regret the GT and we are very blessed with the life Lydia has.  I think that it is important as we become experts in our children, their diagnosis, and medicines and therapies that we remember, there is not one formula that works for all children.  Make sure to offer advice but not say this is the absolute wrong or right thing (sorry my little soapbox.  It bothers me that there is SO much negative stuff surrounding this surgery and they are not all like that.)  There are many stories of hope and survival, excellent quality of life and those are what need to be shared.

I had hope that no matter what happened God would watch over His child.  He has done just that.  There are things that I wish Lydia did not have to endure, but that is her life and we make the best of it.  She will always be tied to a hospital and that is not just because of her GT, but her heart too.  I praise God that He brought her as far as He has and I hope that this has provided hope to you.  I hope that I was able to open eyes too that this surgery, while huge and very intimidating, is not always like what the "information" out there says that it is.  There is hope, even in the despair.