Archive for the ‘Codey’ Category

  • Shock and Awe

    Date: 2016.02.10 | Category: Codey, Family Life

    Dan and I have often discussed the differences in having a biological child who has a disability or illness and adopting a child that does.

    With Codey and Kyle, I spent most of the first year in shock.  Watching your child take their last breath as you hold them in your arms will do that to you.  And there is nothing like standing there with the ground open and your husband carrying a little white casket to that hole in the ground, to change your life.  It will rip your heart right out of your chest and you will wonder how you will ever make it through another day.

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    As the days in the hospital turned into weeks, and weeks into months which lead to over a year, dreams slowly faded away.  I went through times of sadness and mourning over all Codey wouldn’t do.  Just when I would think I had a handle on my feelings, another milestone would come up and my heart would break again. At one, he couldn’t walk, couldn’t talk, and was still in the hospital.  We celebrated there in his ICU room with a cake and family and a news crew filmed it all.

    When he turned five, I mourned the fact that he wouldn’t go to kindergarten.  I mourned that he wouldn’t make friends and go to birthday parties.  I cried tears over the steps he would never take and the games he would never play.

    As time went by, I settled into a routine.  Life seemed normal and then another milestone would remind me that life was anything but normal.  When he turned fourteen, it was not being able to get a permit.  Sixteen was the driver’s license and dating.  Eighteen was graduation.  Then there was not going to college, not getting married, not having children of his own.

    Codey would always be a little boy in a man’s body.  The pain wasn’t over what his life was.  Codey is, for the most part, a very happy boy.  He has a family that loves him.  He has his room and his toys that he loves.  He enjoys football and basketball games.  He has changed everything about who I am and how I see the world.

    My pain was not over what Codey couldn’t do, I knew before he turned five that he would never do these things.  My pain was mostly because I still had these dreams in my head of what it was supposed to be like.  I was supposed to have two little, blonde haired boys.  They were supposed to be best friends.  They were supposed to play football and baseball and cause messes.   They were supposed to run together in the backyard and bring in critters that would make me scream.  They were supposed to grow up and have families of their own.

    Sometime during that first year or so, I received a poem about Holland written by Emily Perl Kingsley.  I remember the first time I read that poem and I thought, “Well, isn’t that nice.  I’m just supposed to be happy about Holland.  Well, I’ll get right on that.”   (Insert sarcasm here!)  It wasn’t that easy.   I had dreams and hopes and plans and none of them included a trip to Holland, but as time went on I realized they were right.  I had to quit mourning Italy and keep my eyes on the beauty of Holland.  The shock of not being in Italy slowly wore off and the awe over the beauty of Holland slowly emerged.

    So what had changed? Codey didn’t change.  Our circumstances hadn’t changed.  We were still broke and Codey was still not going to do what I had dreamed he would.  So what was it?  It was me.  It was my heart.  I was no longer bitter and angry over what I felt had been taken from me; instead, I decided to be thankful for all that had been given to me.  The glass is the same whether I see it as half empty or half full.  The glass never changed, but I had.

    Which brings us to adopting special needs children.  When you know what the cognitive, physical disability, or illness is and you choose it, you know right away that this is the way it is going to be.  You buy books to educate yourself.  You find a support network.  You don’t have to go through that mourning period where nothing is what you had dreamed.  You actually purchased the ticket to go directly to Holland.  You weren’t expecting a different destination.  You are right where you were chose to be.  You can get off that plane and actually be excited to have your feet land on the ground in Holland.

    I can say that I have learned to love the slower paced life of Holland.  I have learned to appreciate and stand in awe of all that our children do.  All those normal daily things that are so easy to just take for granted.   I found myself actually celebrating the little things like holding a spoon in your hand for the first time, the ability to run and play, the first word spoken even if it is at three years of age.  Being able to put a shirt on by themselves.  Being able to write their name.  Living past their first, second, and third birthday.  .

    These are things to be celebrated.  I learned that just because these are things we take for granted, they are NOT little things. A child’s smile, a child’s hug, a first step, these aren’t things to be overlooked or expected, these are things to be celebrated!  A child’s worth isn’t based on what they can accomplish.

    If we instead measure a life by lives and hearts changed, then our children’s worth is immeasurable.  Dan and my heart have been forever changed.  Our eyes have been opened to what matters.  Time has slowed down.  I don’t rush to and through things.  I try to walk and enjoy the journey.  I’m not worried about trivial things.  I appreciate the little things, the joys we miss while we are busy waiting for that thing that will make us happy – school done, the perfect vacation, getting married, finding the right career, retirement.  I have learned to not wish my life away waiting for something to make me happy.  You learn pretty quickly not to wish days away when you aren’t sure there will be another one.

    The truth is there are many other things that Codey will never do.  He won’t lie.  He won’t cheat.  He won’t judge you for the things you say or do.  He won’t make you feel less than.  How many of us can say that?  How many of us can say our words have never hurt another person?

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    You can say I have on rose colored glasses or a PollyAnna attitude, I won’t take offense because, the truth is, I do.  I choose to be happy.  I choose to enjoy my children’s lives.  I choose to wake up thankful that I get to do it all again – the monotony, the diaper changes, the g-tube feedings, the teaching the same thing over and over again, all of it.  Every day is a choice.  For the longest time, I refused to be happy in this place I found myself and now I thank God daily that this is where my life took me.

    Every day I wake up to the most beautiful, joy-filled faces and I know, beyond any doubt, that I am blessed.  I am in awe of this life I get to live.  I am in awe of these little souls that I have been entrusted with.

    A life of worth isn’t measured in the money made, the titles held, or what you take; a life of worth is measured in the lives you touch, the love you give, and the difference you make.

     

     

     

     

     

     

     

  • The Day That Changed my Life

    Date: 2014.06.07 | Category: Codey

    For those of you who don’t already know this, I use my blog as my journal.  It has worked pretty well so far.  I used to keep a journal for each child, which was easy with three, but not so easy with twelve, soon to be fourteen.  Plus, with our adopted children, much of their life story is missing, which breaks my heart.  This blog and my Facebook posts, which I copy and paste at the end of each month, have become my new way of keeping memories alive for my children.  That being said, this post is for that reason, to retell a story that is quite long and complicated.  This post details the day that changed my life forever.

    I looked back to see if I had ever covered this topic before and as far as I can tell, I haven’t.  It’s a hard topic for me.  People often comment about life being hard now and I can honestly say it is nothing compared to what we went through with our first two children.  Now we have money, family that lives close by, older children who want to help, people to lend a hand, and a church that supports us.

    Last year I wrote about all the lessons Codey and Kyle’s lives have taught me.  You can read about that here.  (Blog post)  But I have yet to put the words down in writing as to what those first days, months and years were like.  They were hard and life altering and it all started on April 29th, 1987.

    It was a beautiful day.  I remember it well.  After work, I had gone shopping with my mom.  I loved those moments with my mom.  She had always been my best friend and I looked forward to our time together shopping.  She took me out to eat before running me to the hospital to meet Dan, who was working, for our second Lamaze class.  I was most definitely pregnant.  You couldn’t miss my big belly.  At this point, I had gone from a 24 inch waist to over 50 inches.  I remember I was wearing this goofy Garfield t-shirt and capris so it must have been a nice night.  I was a little over 28 weeks along, due July 22nd, and just so BIG!  Everyone commented on how big I was and I was constantly asked how close I was to delivering.  My mama would smile and say, “She’s having twins!”  It was a wonderful time, full of anticipation, everyone was overjoyed at the thought of twins. It was the first grandchildren on both sides.  My mom couldn’t wait and  I was feeling very blessed.

    Dan and I dated through high school. We broke up for a bit at the end of our senior year and when we got back together we knew that we wanted to be together forever. Neither of us wanted to wait.  When we married, he was 19 and I had just turned 20.  We waited a couple of years before having children, but we knew we wanted a family.  I had always dreamed of having a large family and he would say, “Let’s see what God has planned for us.”  Dan has always had faith and an understanding of God that was way beyond me.  My relationship with God consisted of going to church on Sunday and trying to be good.  Dan taught me what grace, faith and trust were.

    We were as broke as you could be.  We drove a truck that seated two and we couldn’t even afford the back bumper for it. (Yes, all those years ago back bumpers were optional.)   We lived in a small apartment.  I was paid not much over $5 an hour working as a legal secretary.  Dan worked in the laundry at the hospital and was attending the local junior college.  When we found out we were having twins, we moved in with Dan’s parents to try and save money for a car and the things we would need.  To most people it would have looked like we were barely surviving, but we were happy.  We had family that loved and supported us.  Dan and I were best friends, we had each other, and we were about to start on this grand adventure called parenthood.

    My water broke on the way to the class.  I sat there afraid and unsure of what to do.  I had just met Dan at the hospital.  We were supposed to be attending our second class.  We called our doctor and she had us go to the E.R.  When things like this happen, it doesn’t seem real.  You can’t think.  I couldn’t have imagined what was going to happen even if I knew what could happen.  I was still picturing the happy ending because I didn’t know any better.  And then it began.

    They hooked me up to an i.v., they pumped fluid into me, they called in the O.B.   The contractions wouldn’t stop.  Our doctor called the doctors at the bigger metropolitan hospital and asked them what to do.  There was a big debate between the local O.B., our family doctor, and the big town O.B.  No one could agree.  Local O.B. says let her deliver in the small hospital and move the babies when they come.  Big town O.B. says the babies stand a much better chance of surviving if they are delivered at a hospital with a level 3 NICU.   The big town O.B. starts to talk about how I could lose my life and we could lose both the boys and decisions have to be made.

    We choose to go to the bigger hospital. Life flight, an air ambulance, is called.  They loaded me on board and our local doctor, Dr. S, rides with me.   Dr. S is afraid I will deliver the boys in air.  She takes the place of one of the transport nurses, who now needs to find a ride back to Methodist.  Dr. S tells me over and over again that it will be okay, but I can see in her eyes that it is not.  We are a long way from o.k.

    Not knowing anything about having a baby early, I tell myself they will be small, but it will be okay.   I am in the air, sure that we are going to crash, so afraid that I don’t even know what to pray. “Oh God! Oh God! Oh God!” plays over and over again in my head. I remember lying there in that helicopter with tears streaming down my face wondering why this had to happen to me.

    I arrive at the hospital in record time.  Dan is left driving our “new to us” car – a very old Gremlin.  This car almost fell apart at anything over 55 miles per hour.  My poor husband had to ride 90 minutes with someone he had never met before on the worst day of his life. I was waiting for my mom, Dan, and the rest of the family. My stepfather actually got them lost and it took them forever to get to me.  I had never felt so alone and so afraid in my whole life.

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    I listened to the whispered discussions while they did lab work and ultrasounds.  There was talk of the boys being conjoined.  Everything they said scared me just a little bit more.  Time seemed to stand still. I couldn’t do this without Dan.  I needed him by my side to help make decisions. He finally arrived at the hospital and the decision was made to do a c-section.  Kyle was breach and since they couldn’t stop my labor, they needed to get the boys out.  They ran down the hallway taking me to the operating room. At 12:04 Codey entered the world at a whopping 2 pounds 7 ounces.

    Codey - 2 pounds 7 ounces

    Codey – 2 pounds 7 ounces

    One minute later Kyle followed.  He weighed 3 pound 8 ounces.  In my mind that made him stronger and healthier, but that was not to be the case.  Kyle was born with an omphalocele and had many issues.  We would later learn he had Beckwith Weidemann Syndrome.

    3 pounds 8 ounces - Kyle

    3 pounds 8 ounces – Kyle

    I was frustrated because I was infected and had a temperature so they wouldn’t let me in the NICU.  It was so hard wanting to be with my babies and not being able to see them.   I can’t remember how much time went by before they let me in, but it seemed like forever.   They called us in a couple times and then it was the final time.  They sat me in a rocker and they put my boy in my arms and they pulled this awful white curtain around us. To this day I can not stand white curtains.  It was an open bed unit, which means there was no privacy except for that curtain.  I have no idea what I sounded like sitting in that chair and I could have cared less.  My dreams of two, little blonde haired beautiful boys was coming to an end.  My heart was broken and I let the tears just fall.

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    Kyle’s death was one of the hardest times of our lives.  It was a pretty horrible place to find ourselves – without jobs, or a place to live, and to not be able to afford to bury our son.  We had life insurance but Kyle needed to live seven days to be able to claim it and he only lived five.  We couldn’t even afford to have the funeral home come down to get Kyle’s body so I held him, wrapped in a blanket, and rode home with mom and Linda, as we drove him the 90 minutes back home.

    I remember when the chaplain came up with the idea for us to take Kyle’s body in our car.  I kept saying that I couldn’t do this.  I could not carry his little body in the car with me.  I just couldn’t.  But the chaplain was so kind and so sweet and she told me that with God I could do this.  She said she knew I was strong enough to be there for my son.  She told me it would give me closure and she was right.  It was so hard to hand him off at the funeral home.  I knew he wasn’t there, but still….

    Our family supported us in amazing ways, my mom and stepfather bought him a little white casket.  My grandparents gave us two burial plots, one for him and one for Codey.  We had a service where my husband stood up and talked.  Dan’s main point was to tell others to not let Kyle’s life make them bitter or angry.  Dan told them for them to become bitter would dishonor Kyle’s name.  Kyle’s life had purpose.  Kyle’s life had meaning and he wanted everyone to remember that and move forward.

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    My favorite/saddest memory of that day was my husband lifting the little white casket off the back of the hearse.  Dan didn’t think about pall bearers, all he thought about was taking his little boy to his final resting place. I had brought Kyle into this world and Dan laid him to rest. I will never forget that moment or how much I loved my husband and his sweet, caring heart.

    We were lucky that we didn’t have to go home to move our belongings.  What little we had was still at his parents.  We didn’t even have a nursery to go home to.  We had one lone cradle that sat in our room.  We had never gotten around to building the other cradle and now it seemed as if it was an omen, like some how we knew or had caused what happened.  It’s crazy what your pained mind will believe.

    Did I not pray hard enough?  Was my faith not strong enough? Did it look like I didn’t care?  Where the others right?  Did God think we couldn’t handle two sick children? (Someone actually said this to me at Kyle’s service.)  Were we being punished for some sin?  Why did this happen to us when all we wanted was to have a child to love.  Why? Why? Why?

    We moved into the Ronald McDonald House and lived there long enough to kicked out.  You can stay three months and then they remind you that you might need to make some other plans.  We had to decide what to do with our lives. Codey was not quickly getting better.  Dan decided that he wanted to make a difference in the lives of babies like our boys.  He decided to become a doctor, which is a far cry from the man I married who was thinking of being an art teacher.  Dan applied to Drake University to get his B.A. in biology.  We got into married student housing right away.   I started working temp jobs for attorneys in town so I could pick and choose when I worked.

    Codey was on maximum ventilator settings for many months. Time and time again they would say there is no more support we can give him.  He was on 100% oxygen. He would get sick, we would call down our family, and wait.  We waited for him to die.  We waited and waited and waited.  I lost track of how many times we waited for Codey to die.  Over and over again this happened and each time Codey pulled through.  You can only wait for your child to die so many times before you decide that maybe it’s time to live.

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    We had even been asked a few times if we wanted to discontinue support, but how do you discontinue support on a child who is not brain dead?   How do you do that when your child is playing and kicking in his bed?  Both Dan and I believed that if it was Codey’s time, God would call him home.  Kyle was on the same maximum settings and he never survived.  Dan and I just couldn’t make that decision.  We had to leave it in God’s hands.

    He was such a sweet, sweet baby!

    He was such a sweet, sweet baby!

    We spent all our first holidays in that hospital.  We had gone through Mother’s Day, Father’s Day, July 4th, Labor Day, Thanksgiving and now we were celebrating Christmas.  It was a very sad time, although the nurses in the unit tried to make it festive.  We came in one morning to find Codey in a big boy crib.  The nurses had got together and bought him a regular bed.  Dan bought battery powered Christmas lights for above his bed.  I remember other families complaining and the nurses telling them if they wanted to stay 8 months, they could have one too.

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    One of the funniest memories of this crib, was when Codey extubated himself.  He was very good at extubating himself.  Jan had even made him his own fabric arm restraints to try and keep his hands away from his face.  Anyway, Codey extubated himself and no one could figure out how to get the side of the crib down.  One doctor had to hold him and the other had to intubate him.  It became a running joke in the unit as to how many years of schooling it takes to be able to put the side of a crib down.

    In January, he would be transferred to the university hospital, 90 miles away, to have a tracheostomy placed.  The doctors at our local hospital told us they thought they would kill him if they tried to do the surgery and they wanted us to go somewhere where the surgeons had performed more of these surgeries.  I still have the utmost respect for these doctors who decided to do what was in the best interest of Codey.

    On the way out the door, the NICU informed us that Codey had hydrocephalus that they thought was being somewhat controlled by large doses of lasix.  A not so nice surprise but at the time we had no clue what that would mean for our little guy.  Codey was transferred and the primary nurse, Jan, who had cared for our son for the past 8 months, rode along in the ambulance with him.

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    It was very hard being in the hospital that long.  Not many people visited or seem to care about Codey.  It felt like no one really knew what to do, but Jan loved Codey.  She protected Codey and she still remembers Codey.  During a horrible, horrible time it was nice to know that someone truly cared about our boy.  As a nurse or doctor, don’t ever forget the impact your lives have on those you care for.   Jan still remembers Codey’s birthdays.  She has even come to our older children’s graduation parties.  She is loved and will always have a special place in our hearts.

    Somewhere in the midst of all this waiting, I found out I was pregnant.  Talk about the perfect timing.  We hadn’t even made it out of the hospital with our first child and I was pregnant again.  At the time, this would seem like the worst possible thing that could happen to us, but time would show us what a blessing Zachary was and how perfect God’s plan is.

    Playing with Zach!

    Playing with Zach!

    After a short stay at the University Hospital, we went back to the local hospital but to the PICU this time. The PICU would be the place where everything would change for Codey.  He had his first birthday party there and the local news covered this amazing story of the little boy who had yet to spend a day at home.  At that time, Codey was on oxygen and had a tracheostomy but he was doing well.  He was sitting and talking.  He had a horrible case of bronchopulmonary dysplasia and his lungs just needed time to heal.

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    At 14 months of age we would go home for a day.  It was a wonderful time to finally get him home.  We surprised Dan’s mom by not telling her that Codey was coming home.  It was a day of happiness, but it didn’t last long.  We were right back in the PICU.

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    Eventually Codey required a shunt for hydrocephalus.  He had many shunt malufunctions and infections.  During an infection Codey would have the bleed that would change our lives.   When your shunt becomes infected, you need to pull that shunt and treat the patient with i.v. antibiotics before you can place a new shunt.  After the shunt removal surgery, Codey just wouldn’t wake up.  We kept telling the nurses, residents, anyone who would listen that he wasn’t acting right.  They would tell us he was just sleepy from surgery. We tried all day long to get someone to listen to us.  They finally had to pay attention when Codey started seizing. By the time they took him to the O.R. there was a small amount of brain squished up against the inside of his head.  The whole middle was blood.  Somehow a vessel had been torn when they pulled the shunt out.  They gave us the choice to treat him or let him go.  I know what they wanted us to do, but I couldn’t watch it.  Dan and I decided if he was going to die, we wanted it to be in surgery where he would be unaware of the pain.  We just couldn’t watch it anymore.  He was seizing so bad that only his head and his feet were on the bed.  It was horrible to watch your child writhe in so much pain.

    The neurologist helped us call our family.  Everyone said it would only be a matter of time, but it wasn’t Codey’s time.  He came out of surgery and slowly got better.  We were given the prognosis that they thought he would be blind, deaf, and in a vegetative state.  Those are pretty grim things for a parent to hear.  What had we done?  Should we have just let him go?  It is hard when you are in the middle of it.  How can anyone make those decisions?  When someone confronts you with this after you have fought so hard, how can you possibly give up now?

    On August 5, 1988, Codey was readmitted to the hospital.  I remember all the nurses asking us when the last time Dan and I had gone on a date together.  Dan and I laughed.  They told us Codey was stable and tried to convince us to go.  One of the nurses who helped at home was even on that night.  They talked us in to going out.  I was 35 weeks pregnant and very tired, having a date with my husband sounded like a wonderful plan.  They even joked that this would be a good time to have the baby since we now had a sitter for Codey.  We left the unit, chuckling to ourselves.  We ate and went to see a movie and my water broke.  Zachary was born later that night.  As always, God’s timing is perfect.

    Life was hard with Codey at home.  Dan had decided to go to medical school.  We were 3 hours away from family.  Codey was g-tube fed, on oxygen, had a tracheostomy, and was on a ventilator.  Zach was a few months old when we moved.  We had issues with nursing and finally just gave up and did it ourselves.  Life was difficult then.  We didn’t have any extra cash.  We had just moved and knew no one in the town. There were many times we felt very, very alone.

    Codey has spent an unbelievable amount of time in the hospital.  He has had a 14 month stay; two six month stays; two, three and four months stays over and over again.  He has had close to 100 surgeries and procedures.  We have been through so much with him.  He has had about every complication you can have from the medications he was on – gall stones, kidney stones, ruined teeth, etc. and if there could be a complication from a surgery, it would happen to Codey.  I have watched him endure more procedures than any child should have to go through.  I have seen him beg to be put on a gurney so they could take him to surgery and relieve the pain in his head.  His poor little head has been shaved over and over again for surgery.  At one time he had three shunts in to try and release the pressures.  Eventually he had so much scar tissue in his ventricles that it became impossible to put in enough shunts to drain it.  At that point they did a complicated procedure with a scope to take down the numerous bands of scar tissue that had built up in his ventricles over the years.  He has so much scar tissue in his abdomen from all the infections and shunts that they eventually had to put the shunt tubing into a blood vessel in his neck.  He has had tubes put in his ears, a g-tube placed, cholecystectomy, heel cord release, and a tracheotomy.

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    Codey is not blind.  Codey is not deaf.  It’s true he isn’t able to walk.  He prefers to scoot around on the floor.  He watches t.v.   He plays with his toys.   He is loved by his family.  He has changed my life. Many people think Codey doesn’t live a life that has worth, but I would disagree.  I believe that Codey is fulfilling his plan.  I believe he is probably doing it better than most of us.  Codey doesn’t say hurtful words to other people.  Codey doesn’t lie, steal or cheat.  Codey isn’t arrogant or mean.  Codey is fulfilling the plan God set out for him to do. Codey is humble and content.  He is not striving for worldly things and for that reason, one day my son will have great rewards in heaven. Life on earth is but a speck of time. Heaven is forever.  I hold fast to that truth.

    Matthew 18:3-4  And said, Verily I say unto you, except ye be converted, and become as little children, ye shall not enter into the kingdom of heaven.  Whosoever therefore shall humble himself as this little child, the same is greatest in the kingdom of heaven.

    I do not believe God set out for Codey to be hurt.  I believe through free will and random chance things happen to people.  I believe God can stop things from happening and God often does that, but that God sometimes allow things to happen for the good of all involved. His ways are not our ways. We can not possibly comprehend the why.  It may not be what we would want or choose, but it can still be for good.  There is no way 27 years ago that I could have seen all that would come to be because of Codey and Kyle’s lives.

    Elsberry _70 Crop

    I no longer question why it had to happen to me.  Why not me?  Who am I to think I am better than anyone else?  I am a sinner just like everyone else.  If Codey had to go through all of this, then I am glad I got to be his mother.  I am happy that I got to be the one to comfort Codey.  I am a better person for having had Codey.  I wish Codey hadn’t had to suffer, but I can’t change what happened without it changing how it changed us so if you asked me “Do I wish this hadn’t happened?” – of course I wish this hadn’t happened but I have been blessed to see the blessings that have come out of the suffering.   I truly believe God has used the bad for good according to His will.  The changes in Dan’s and my heart because of the boys are huge and I am not arrogant enough to believe I would have understood anything without those lessons.  It would change my love for hurting children.  It would change our knowing that we could handle anything that happened on our journey.  It would change us knowing what is truly important.  It would change my walk and my journey with God which was strengthened through these lessons.

    I have often wondered why these things happened to my son.  Why did Codey have to suffer?  Was it some sin that I had done that Codey was now paying for?  The verse that brought me the most comfort with regard to that question is the story of the child who was born blind told in John 9.  John 9:3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.

    So the works of God might be displayed in him, that is a pretty good way to live your life and my son has done it well.

  • Providing care does not mean you care

    Date: 2014.04.21 | Category: Codey, Hope, Thoughts to ponder

    What Kind of Doctor Do You Want To Be?

    September 16, 2011

    In all our experiences over the years, we have seen two types of doctors, doctors who provide care and doctors who truly care.  You might think they are one and the same, but you’d be mistaken.  As a doctor, you might become very knowledgeable about your particular specialty.  You may be able to look at a laundry list of conditions and tell exactly what my son has.  You might be able to quote figures and percentages and tell me what the odds are that my son will ever walk or talk.  I will tell you though that my son is not hydrocephalus.  My son is not cerebral palsy.  My son is not the numerous other labels that have been placed on him.  If when you look at him, that is all you can see, you might be able to provide care but you won’t care.

    Codey - 2 pounds 7 ounces

    Codey – 2 pounds 7 ounces

    Edward Albert once said the simple act of caring is heroic.  You might not think that it is heroic to care, but I tell you it is.  Picture this:

    A mother, standing at the bedside, wearing scrubs because she hasn’t had time to take a shower let alone drive home to get clothes.  Her son is hospitalized, again, she’s tired, worried, worn out and afraid.  The neurosurgeon walks into the room and looks at her son.

    “How is he upstairs?” He asks.

    The mother, who is rightly confused asks, “What?”

    “You know,” he says, “how is he mentally?”

    “What difference does that make?” she asks.

    “Well, it just does.”

    Nurses, who have been watching the whole thing unfold, are horrified by what they hear.  The nurses take the shaking, visibly upset mother out of the room.  Since this doctor is the neurosurgeon on call, she has to entrust her sons care him.  She doesn’t have a choice.  Her son needs surgery and he needs it now.  She cries and worries that maybe the doctor won’t care.  Maybe he won’t try as hard.  Maybe he’ll just let her son go after she has fought so hard to keep him alive.

    When her son comes out of surgery, this neurosurgeon comes into the empty waiting room.  At the same time he sees the parents, he hears the t.v., which is blaring the Olympics.  He turns away from the parents and watches what is happening on the t.v.  When they ask how their son is doing, he holds up his hand to shush them until he sees the race finish.  He treats them as if they don’t matter.

    He was such a sweet, sweet baby!

    He was such a sweet, sweet baby!

    Compare this to the neurologist who knows how much she cares for her son because he’s spent time at her bedside.  He’s taken the time to come visit with them when her son wasn’t in pain.   He’s visited when her son wasn’t so sick he couldn’t even stay awake.  He has seen him watch Price is Right. He has seen him laugh out loud.  He has seen the love they share.  This is the neurologist who holds her hand while she makes the calls, once again to her family.   This is the doctor who offers to make the calls himself.  This is the man she will remember fondly for the rest of her life because he took the time to care about her son.

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    To her this doctor is a hero, as are the other physicians and nurses who took the time to care about her child.  I could sit and list all the things that were done wrong.  The list, which is unfortunately long, would include the care that caused my son’s severe brain damage. I could talk about the care that wasn’t given in a timely manner.  I could talk about all the times I cried because the doctor wouldn’t listen. But today I’m going to talk about the positives, the people that showed how much they care.

    There was a doctor who made the resident cross out all the times this resident listed mental retardation in my son’s chart because Codey wasn’t old enough for that diagnosis and our doctor didn’t want Codey labeled with something we weren’t sure about yet.  Did it matter in the long run? No.  Did he show he cared?  Yes.

    I can talk about the pediatrician that took the time to sit on the floor during my son’s first routine visit and just play with him.  She tried to overcome Codey’s severe anxiety over anyone in a white coat who came near him.  She spent precious time just playing with him on the floor.  Would you say she cared?

    Snuggling with Cassie!

    Snuggling with Cassie!

    I can talk about the nurse who rode with my son to Iowa City to get his trach because they wouldn’t allow family in the ambulance.  This same nurse sends birthday cards 24 years later.  This nurse has attended my other children’s graduation parties.  I realize this level of care isn’t always possible but it has been a blessing to our family.

    I can talk about the nurses who bought my son a regular crib with their own money and decorated it with Christmas lights because he had been in the NICU for 8 months.   The same nurses treated us like family.

    I can talk about the doctor who was honest enough to admit that if he tried to trach Codey, he might kill him.  This doctor recommended we go to Iowa City where they had more experience.  You might think that is wrong to admit that you can’t or don’t know something.  I tell you, it is honorable.  It is the right thing to do.  It will earn you that parent’s trust because you proved you care more about the patient’s life than your ego.

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    The reality is you may be very, very bright and be a wonderful technician, but if you don’t look like you care, the parent’s won’t trust you.  All it takes is a hand held, a moment to show that you care.  It can be something as simple as remembering the patient’s name and taking the time to directly speak to them.

    Our daughter, Hope, has a complicated heart defect called, hypoplastic left heart syndrome.  Hope had a cardiologist that we have known for years.  Every time we came into the appointment, we felt like we were catching him up.  It was frustrating because we never felt like he put any thought into her care.  We always felt like he was seeing just one frame in the whole movie.  He provided competent care, but did he truly care?

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    Compare that to Hope’s new cardiologist.  Before we even had our first appointment, he took her chart to present at a cardiology conference.  Hope had a pulmonary stent that had cracked and he was unsure what the best course of action would be.  He presented her case and got advice from 100’s of doctors before she was even truly his patient.

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    Both cardiologists were bright.  Both knew what they were talking about.  Who do you think we trusted more?  Who showed that they cared?

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    If you want to make a difference you need to care and not just provide care.  You need to take the time to get to know your patients.  That textbook won’t tell you who that patient is or who their family is.  You will never know that patient better than their parents do.  Don’t talk down to the parent that spends 24 hours a day with this child.  The patient is not their condition.  My son is not the shunt case in bed 3.  He has a name and many, many people who love him.

    I know that your days are packed with people to care for.  I know that sometimes the cases are sad and overwhelming.  I know that sometimes it just doesn’t seem worth it to go that extra mile.   I know that the hours are long and the overnight care get tedious, but with all that being said, you really need to consider if you want to be the person families remember with fondness or the person they wish they could forget?

    Be a hero. This isn’t something you can fake.  You either care or you don’t.  If you don’t care, maybe you shouldn’t be in medicine.   On the other hand, if you take the time to know the patient and support the parents and truly give of yourself – your time, your support, your caring – well, then you might just be someone’s hero.

     

  • Best Buddies

    Date: 2014.04.04 | Category: Codey, Lainey Rae, Photos

    Sometimes things happen in life that you could never, ever imagine happening.

    Lainey & Codey

    To most people, this picture will just look like two siblings snuggled up together, but I’m telling you it is so much more.

    Lainey is a little girl mostly non-verbal, with severe limitations, who most the time doesn’t really pay attention to what is going on around her.   She is in her own little world a lot of the day.

    Codey likes to stay pretty much to himself too.  He doesn’t like to share his room with the littles, although they love his noise-making toys, so they are always trying to sneak into his room.  Codey has a couple phrases that he can say but he is pretty non-verbal too.

    Yet, for whatever reason Lainey loves Codey.  Codey scoots around on the floor and she loves to run up behind him and lay her head on his back.  She likes to help him along and has even been known to sit on his lap while he is trying to scoot.  They are just so cute together.

    She runs into his room, throwing the door open announcing herself, and climbs on his bed.  He just pretty much lets her be.  She snuggles up on his bed with a bottle and he watches t.v. from his comfy chair.

    I can guarantee you when I imagined us adopting again, I never pictured this.  I worried about how much it would stress Codey out.  I wondered about how he would react to them.  I wondered how they would respond to a 26 year old boy who scoots around on the floor and growls when he is upset.  It’s not the normal for sure.

    But this…..this is….so much more than I could have ever hoped for.   This is the biggest blessing.

    So much so, that when I saw this picture, I cried.

    Feeling very blessed indeed!

     

  • Thankful for…

    Date: 2013.11.28 | Category: Adoption, Benjamin, Cassie, Codey, Elijah, Evangeline Faith, Faith, Family Life, Grace, Hope, Jasmine (Shuang Shuang), Lainey Rae, Maisey, Photos, Zachary

    A little boy that did better than anyone expected. (Today he has walked down the halls, had his chest tubes and i.v.’s taken out, and even smiled.  UNBELIEVABLE!)

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    A little girl that we were told was deaf but can hear enough to dance to the music.

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    A little girl who now understands love and has learned how to give kisses.

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    A little boy that has blossomed and grown.

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    Exciting proposals and new additions to the family.

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    Family that becomes best friends.

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    People coming together to help others.

    Shaved little heads that now hold enough hair for big sister to do a silly hairdo.

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    Siblings that get opportunities to make great memories together. (Hope loves special effects make-up.  Cassie took her to be a zombie extra in a local movie.)

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    Big siblings that love their siblings enough to take care of them when mommy and daddy have to be gone with someone who is sick.

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    Husbands who support you, dream with you, love you, and make you laugh for more than 29 years.

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    Friends, family and others who encourage, support and pray for you.

    Meeting people who have majorly changed your lives. (Maria’s Big House of Hope, New Hope Foundation and the Chapman’s daughters words that made me rethink being too old to adopt.)

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    Thankful, blessed, grateful, overwhelmed, and humbled – all these and more.

    HAPPY THANKSGIVING everyone!

     

     

  • Updates

    Date: 2013.07.20 | Category: Adoption, Benjamin, Cassie, Codey, Elijah, Evangeline Faith, Grace, Hope, Jasmine (Shuang Shuang), Lainey Rae, Maisey, Zachary

    So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10 NIV

    I’ve been hanging on tight to the “do not fear” portion of this verse for the last couple of weeks.

    I will apologize ahead of time that this post is long.  I’ve chosen to post updates on everyone in one blog.  The good news is each paragraph is a story in itself so you can stop and come back and it won’t even matter.  Plus, if you leave and come back it adds another visit to my blog and I am really close to going over the 20,000 visit mark for the year.  Isn’t that unbelievable?  I sometimes forget that there are those, that I don’t even know personally, following our story.  I update for my family and friends who I know are praying for our family and for each of my children and pray that maybe, just maybe, I will reach someone I don’t know and they will be encouraged to do more.  They will be encouraged to follow where God leads them, even if they are afraid.  It just seems amazing to me that our story touches others.  To me, it is just our life.  It’s just my normal.  It can be really, really loud, and really, really busy, but at the end of the day we are just a family.

    If you are one of my readers, which I guess you’d be if you are reading this, thank you.  Truly thank you.  Thank you for caring about my children.  Thank you for covering our family in prayer.  As Christians we are commanded to encourage each other and lift up each other.  You do that for me with your comments.  You do that every time I hear about someone praying for my children.  What a blessing.  It goes without saying that the title of my blog says it all….I am SERIOUSLY blessed!  Thank you!

    Benjamin

    Poor Benjamin had been feeling so bad.  He was admitted to the hospital to receive IVIG because his platelets dropped to 12,000.   He had a severe reaction to the IVIG, his temp jumped to 105.1 and his heart rate was well over 190.  When your heart is as overworked as Benjamin’s is already, a very high heart rate for an extended period of time is not a good thing. During his hospital stay, I asked him, “Benjamin, do you know that God loves you?”  and he responded, “Yes!” and then I said, “Benjamin, do you trust me?” and he said, “Yes mama!”  as he snuggled in closer he said, “I’ll be brave.”   He really is the bravest kid.   I wish I had the words to properly convey how humbling and overwhelming it is to watch your child truly trust God.  When said child is only 4, it is just mind blowing.  Benjamin is sweet and gentle and so loving.  Benjamin can not hear sirens without requesting that everyone pray, well commanding it is more like it.  When you pray, you have to pray for the person who is hurting, for their family, for the people driving, and for their safety.  You can’t leave anyone out.

    We had been home for a couple days and Ben was still whiny and not eating.  His dentist decided it was time to take out two molars before he has surgery.  One of them was infected and yet Ben wouldn’t really complain.  Benjamin’s surgery is scheduled for August 13th at Mayo.  We have to check in early the morning of the 11th to check his platelets and see what needs to be done to get him ready for surgery.  I am nervous about this surgery, but we know it is his only hope of being pinker and extending his life.  We are trusting in God’s plan and His timing.  We are putting Benjamin in His hands and praying for the best.   Plus, Benjamin has decided that he is SuperBen Ben and he can handle anything!

    Super Ben

    Plus, Gracie has informed me that “it’s a pretty good day for a miracle”.  So we are going to go with that.  It does seem like a pretty good day for a miracle!  🙂

    Cassandra

    She has been such a huge help this summer.  She was invaluable in China and continues to be so.  She allows her mama some sleep, some much needed sleep.  I am always amazed at how much she has learned from our life.  She is so far ahead in her walk with Christ than I was at her age.  Here is her latest post that shows exactly what I’m talking about.   Things I Have Learned

    Codey

    The boy turned 25.  How is that even possible?  I’m barely over 25.  Although, I suppose that makes the fact that I just had my 30th high school reunion a little improbable too.  🙂   Codey has adjusted well to all his siblings.  He doesn’t seem to mind the increased decibels in the house.  It has gone remarkably well.  Better than I could have even hoped for.  He has been healthy and he is a pretty happy guy.

    Elijah

    We now know why it said that he was “charming and handsome” throughout his papers from the orphanage.  This boy will charm the socks off you.  He is sweet and the faces he makes just crack me up.  Last night we hit a wonderful milestone and he melted my heart a little more.  There are many habits that children come with, who are raised in an institution, one of them is not wanting to be held or rocked.  Some, not all, children have this.  They are so used to being alone.  Comforting themselves.  Not crying out when they are in pain because no one responds.  It’s just very, very sad.  Last night Eli had a nightmare and he let me rock him.  He let me hold him and comfort him and he said, “Mama, wuv you.”  Those moments are to be treasured.   Those moments of complete trust and the understanding that you are there for them.  Little tiny steps but every time they happen they just warm your heart.

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    Evangeline

    This little girl just continues to improve every single day.  She has gained about a pound a week and weighs in at 20 pounds now.  She is sitting, crawling all over, pulling herself up to standing.  She is singing and saying new words every day.  Little Evie’s heart catherization is scheduled for August 6th at the U of I Hospitals.   I am soooooo not ready for this, but she is getting bluer and bluer.  It needs to be done.  I love, love, LOVE this little girl so much!  She has a personality that is just so big!  She steals people’s hearts in a matter of minutes when they meet her.   They are hoping to place a stent in her PDA and increase the blood flow to her very small pulmonary arteries.  Their hope is with increased blood flow, maybe her arteries will grow.  I’ve had others write to me, to encourage us, with stories telling how this has worked for their children.  Praying that there is hope for our little Evie Faith.  Her middle name says it all – we have proceeded in faith and continue to press on in faith.

    Faith makes things possible NOT easy.  Have you heard that saying before?  That’s where I am right now.  It’s easy to love her.  It’s easy to have your heart completely stolen by her.  It’s easy to thank God for the gift of being her mama.  It’s hard to know that I may not ever get to have a birthday cake with her.  How silly is that?  But not being able to celebrate a milestone with her makes me cry.  It really is the little things in life that matter.  It’s hard to think about taking this chance, even though the percentage is low that she won’t make it through the cath, the truth is she might not.  Am I strong enough to take this chance?  How strong is my faith?  Can I truly just turn it over?  Fear Not!  Fear NOT!  FEAR NOT!  Eyes directly on the Lord and counting each and every blessed day I get to spend with her.

    evie stethescope

    Gracie

    She just got a great report from the hospital at her check-up.  She got to drop another medication.  She grew taller, which is a big deal for a child who isn’t growing from being on steroids.  She’s been doing really, really well.  She has also informed me that when she grows up she is adopting 20 kids.  That is just my Gracie’s heart.  She loves more and wants to do more.  She just loves her siblings.   In the picture below she made an early morning picnic for them.  She’s always the one making the forts, playing games, giving baths (with help), having dance parties, etc.

    picnic

    If you are wondering why Benjamin is in a penguin costume, well, the night before the girls had a fancy dance party complete with big, frilly dresses.  Benjamin thought he should wear a tuxedo and this was as close as he could find.  He then wanted to sleep in it, which I allowed.  There’s just something about not knowing how many days you have that make the little things seem like not such a big deal.  Who cares if he sleeps in a penguin costume?

    Hope

    Hope is Epic!  Her words not mine.  I was asking her what she wanted me to tell others about her and she jokingly said, “Say I’m epic!” and then rolled on the floor laughing.  So, of course, I have to include those words.  That is just the kind of mom I am. Supportive!  Actually, Hopey is truly epic and is doing really well.  Health wise you’d never have any clue she is missing half her heart.  She recently just had a nasty bout of strep, but other than that she has been remarkably well.

    Jasmine

    Oh my goodness, this girl has been busy.  She went to another VBS at a friend’s church.  It was wonderful because they used the same VBS theme that our church did so she already knew all the songs and could sing along.  She is learning more about God every day.  We tell her the basics.  God made everything.  God loves you.  God loves me.  We love God.  God brought us to her.  Today a friend of the family who speaks fluent Mandarin asked her about God and told her a few more things.

    The reward for attending every night of VBS was a ticket to the local amusement part, Adventureland.  Tonight she went with Grace, Hope, Cassie, Zach and Stephanie.  She loved it.  She had a corn dog and a sno-cone.  She tried the teacups, the ferris wheel, and a pretty tame roller coaster.  She played tons and tons of games with Zach and won two small stuffed toys.  She had an old time picture taken in the photo shop.

    She has come so far.  We are still waiting for her neuro appointment and her 2 1/2 hour MRI, which is scheduled for next week.  She had an eye exam this week and it broke my heart.   So many things that orphans feel and are fearful of that we can’t even imagine.  Take for instance the eye exam.  They started showing her letters and all was going well until the letter “H” came up on the screen.  She didn’t know “H” so they handed her a board with four letters on it and asked her to point to the one she saw.  It was then that the tears started. Not just a tear but full-out-sobbing tears.  It broke my heart.  She heard the word “test”, couldn’t say the letters, and just lost it.  When I asked her about it on Google Translate all she would say was that she was “afraid”.  She wouldn’t/couldn’t tell me why.  It just made me sad.  Something as simple as not knowing a letter should not fill you with such fear.

    Adventureland girls

    Today I asked her if she was happy here and her little face just lit up and she said, “Oh yes, Mama!”  Those three little words just made my day.

    Lainey

    She is still not sleeping which makes for some really, really, really long nights.  We have started taking shifts.  Every once in a while, Hopey takes the 10 p.m. to 12 p.m. shift for me, because she likes to play video games and she isn’t able to have alone time during the day.  It’s a win-win situation.  Zach hasn’t been able to take many because of the final push on his video game, but sometimes takes the 1 to 3 shift.   Cassie has been taking the 1 a.m. to 7 a.m.  shift with Dan taking over at 4 a.m. when he is able to.  Cassie is sleeping on and off during those hours, getting bottles left and right, holding a child who doesn’t want to be consoled, and all in all, being a life saver.  I get up around 6:30 a.m. and take over with the crew, since no one, but the older kids, like to sleep past 7.  Cassie then goes back to bed until noon.   We have to find a solution before the end of August because Cassie will be going back to school.  We have recently been approved to try melatonin.  There was some debate on whether you could use it with a child with PKU, but we’ve been given the okay.  Hopefully, this will help our child, who doesn’t want to sleep. sleep.

    On top of that we found out that Lainey is extremely farsighted.  We have been noticing that she grabs at things funny, like she just can’t see it clearly. She takes both hands and kind of starts big and brings them in closer.  She seems to have an issue with depth perception and she is clumsy.  It’s nice that at least there is a reason for this.  We ordered her a pair of glasses.  They are like goggles, completely unbreakable.  This child might make that statement untrue.

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    Here she is rocking her compression shirt.  It has really helped her.  When you put the shirt on, she instantly becomes calm.  It is the strangest thing.

    But all in all, if you saw the Lainey we saw on day 1 and compared her to the Lainey you see before you now, things are so much better.  Truly better.  She is happy.  She hugs.  She plays with the kids.  She laughs out loud.  It does a mama’s heart good to know that she knows she is loved.

    Maisey

    Well, little Maisey Mei got herself some glasses.  Fitting glasses on a little Asian nose and not really having ears is a challenge.  These are what we found.  Cute, little, pink wire-rimmed glasses.  We use her hearing aid headband to hold them up and it seems to be working pretty well.  Her speech has just taken off.  She is getting clearer and clearer in the way she says her words.  She is a great big sister to the littles.

    mei glasses

    Mom

    Mom is back in her own home and feeling better.  She  just had her check-up today.  She is still really weak but is steadily getting better.  Her ejection fraction went from 20% to 35% – so that was wonderful!  We were also told that she would need her carotid surgery done first to allow for proper blood flow to her brain when she is put on bypass.  They said surgery is likely three months after pulmonary emboli are discovered.  That would mean surgery could possibly be in 2 months with her quadruple bypass following 4-6 weeks later.

    I am posting pictures of all the kids so I thought I’d include the picture my sister-in-law recently took of my mom.  She is rocking those Minnie Mouse shades!  Mom won’t care.  Really she won’t.  Have I mentioned that my mom doesn’t own a computer or know how to get on the web to even read my blog?

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    (No worries.  I did tell her and she gave me permission.)

    Zachary

    He is busy with his new game that is set to be released at the end of the month.  I say “his” but the truth is, he is the lead programmer for an international company trying to put their first game out.  It’s pretty exciting watching how God has let him use his degree from home, which pretty much everyone said wasn’t possible.  Oh and have I mentioned that he has a girlfriend?   She is very sweet and all of Zachary’s siblings really, really like her.  I won’t out them and put up a picture….yet.  For now, do you hear that Stephanie?  🙂

    Everyone

    Everyone gets along so much better than I could have even hoped for.  Maisey helps Lainey in so many ways.  Maisey seems to have an affinity for helping those who aren’t able to communicate.  She just gets right in their face and directs them.  She makes Lainey hug and hold hands and play.  It is a blessing to watch them play.

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    Right now the littles are riding their cozy coupes in circles around the couch.

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    Life is hectic, busier than I could even ever imagined but it is full of love and laughter.  I couldn’t imagine my life without even one of my blessings.

    Praying life is treating you well friends.  Enjoy your family, your friends, your faith and follow God’s lead without fear!

     

     

     

  • Happy Birthday Codey & Kyle

    Date: 2013.04.30 | Category: Codey, Kyle, Photos

    My life was forever changed the day Codey and Kyle were born.  You can’t go back to who you were after something like that happens.  Trivial things were soon forgotten.  Material things were soon forgotten.   When you have to bury a son and your son who lives is forever changed, you don’t have a choice but to grow up.

    I don’t have a perfect life.  Truth be told, to most my life would seem extremely boring.  I wake up every day and go to Farrell’s (for my “me” time) but before that I change my son and I give him a g-tube feeding.  Codey is unable to do most things for himself.  I feed him by g-tube six times a day.  I feed him by mouth three times a day.  I change him.  I bathe him.  I brush his teeth.   Add to that trying to do laundry, dishes, cook all the meals, run everyone everywhere,  homeschool my other kids and just be their mom and well, that seems like a pretty boring life.

    I have always wondered if there was something really wrong with me? I’ve heard others describe me as a PollyAnna or they tell me that I see things through rose colored glasses.  But I’m just as confused when I hear others talk about their lives and they seem disappointed.  They talk about their lives like they were supposed to have some great adventure and they are upset it never happened.  I hear mothers say that they go to work to get away from their children.  I hear people talk about not being able to wait for summer vacation to be over so the kids go back to school.  I realize lots of times people don’t have a choice or they are just trying to be funny, but it makes me wonder just the same.  I love my life.  I love being a mother.  I love being married to my best friend.  That doesn’t mean I’m thrilled with six loads of laundry a day.  It doesn’t mean that I’m thrilled at having to pick toys up off the floor for the upteenth time.  But it does mean I make a conscious choice to be happy about it.  I can make it fun or a I can make it a chore.  I have chosen to look at my life with a different perspective because of all the things that have happened to me because of Codey and Kyle.  I know how quickly your life can change.  I know how much I would have given to spend more time with Kyle.  I am happy being at home because I know how blessed I am every day to get to love my children for one more day.  I have many, very sick children and that privilege won’t always be there.  I don’t take a moment that I get to spend with them for granted.

    It’s been 26 years since my dreams of two blonde-haired, sweet little boys ceased to be.  I thought my life was over.  I thought I’d never be happy again.  I questioned why it had to happen to me.  I questioned why God would allow something so devastating to happen to two parents who wanted nothing more than to love their children.  I had no clue what Kyle’s death and Codey’s life would change when we started out.

    But 26 years later, I have a small glimpse of the threads that will one day be the tapestry of Kyle and Codey’s life….

    Dan became a doctor with the promise to make life better for other children.

    Dan understands what it means to be the parent of a very, very sick child.  He knows how to talk to parents.  He knows how important it is to tell the truth in the nicest way possible.  He understands that sometimes no matter how hard you try a child will die.  He understands who his gifts come from and who is truly in control.  He learned that the things a parents need the most is to be heard, to know their child has worth, and to believe that their doctor has their child’s best interest at heart.

    I learned to not live my life in fear because you never know what the next day will bring.  You can worry about surgeries and when your child is going to die, but the reality is only God knows the number of anyone’s days.  So you might as well go on with your life and make the best of it, enjoying every wonderful moment you are allowed to have.

    I learned that sometimes doctors make mistakes and the consequences are devastating but blaming them and being bitter won’t change anything.

    I learned that not everyone will appreciate how hard you fought for your child to live.

    I have learned that most people will never understand the worth of a child who isn’t what the world considers “normal”.

    I have learned that you can do more and handle more than you ever thought possible, as long as you keep your eyes on the Lord.

    I have learned that by opening your heart to love, even with the possibility of loss, you gain beautiful blessings that are beyond measure.

    I have learned that the only thing you can take to heaven with you are your children.

    I have learned that sometimes people fulfill God’s plan and never measure up to man’s ideal.

    I have learned that sometimes scary things lead to wonderful things – Kyle lead to Hope which lead to Ben which lead to Evie which lead to Eli.

    I have learned that the death of a child really isn’t the worst thing that can happen to you – especially when you have the promise of forever.

    I have learned that doctor’s don’t always know what they are talking about.  We called our family down numerous times that first year because Codey wasn’t going to make it through the night.  We were also told he wouldn’t live past a year.  Sometimes, you just need to take it a day at a time.

    I have learned that the unconditional love of child truly is an amazing thing.

    I have learned that you should always forgive because you never know when your last day will be.

    I have learned that every day you have the choice to be happy or not.

    I have seen first hand the unshakeable spirit of a child who has been through more than any person should have to go through (close to 100 surgeries and 5 years in the hospital) and yet enjoys each and every day.

    I am blessed to be Codey’s mother. It’s not remarkable by most people’s standards, but it has been miraculous.  I have had a ring-side seat to some of the most amazing things.  You may look at Codey and see all that he isn’t able to do, but I look at Codey and see all that he can do.  He has done remarkable for a child that we were told, if he lived he would spend his life in a vegetative state, blind and deaf.   He gets around the house.  He loves Football, Wheel of Fortune, and the Price is Right.  He is truly a happy boy. Someday he will walk, someday he will talk, someday he will do all the things I dreamed he’d do.  Codey and Kyle have taught me more in my life than any other person.   My life has been harder with all we’ve gone through but I am a much better person for having them in my life.  It’s hard to not feel blessed by that.

    Happy birthday Codey & Kyle!   Mama loves you!

     

  • Things you never imagine happening….

    Date: 2012.07.21 | Category: Benjamin, Codey, Family Life, Maisey

    For those of you who don’t know my son Codey, he is 25, severely physically and mentally challenged. One of his favorite things to do is open his window and listen to the cars go by and the birds sing. He has his big, fake leather, comfy chair parked right there under the window.  He would sit there for hours if I would let him. We actually partially unscrew the screw in the lock to keep him from being able to unlock it and open the window even when it’s 100 out.

    I admit that I worried about Codey and how our new kids would do with him. He doesn’t like to share toys. He doesn’t like change. He doesn’t like his wheelchair so he gets around our house by scooting on his bottom.  He growls when he’s upset and can yell very, very loud.  How do you explain that behavior to a child who is mostly deaf but can hear really loud noises or a child who 4 months ago only spoke Mandarin?  It’s one thing to adopt a baby and have them grow up around it.  It is a completely different set of issues to take a 2 and 3 year old and introduce them to him.

    I’m sure you’ve heard me mention before that you should never worry because the things you worry about often don’t come to be and you couldn’t even possibly imagine what might come to be.  (Worry does not empty tomorrow of its sorrow, it empties today of its strength. – Corrie ten Boom.)  I’m not a worrier by nature, but thoughts do cross your mind – no matter who you are and how strong your faith is.  You think “How am I gonna handle this if….”.  It’s just human nature.   I wondered about whether they would get along.  What if they didn’t like each other.  What if Benjamin and Maisey were afraid of him.    Codey is a very tenderhearted, sweet, affectionate, loving little boy.  He may be 25 but he is a small child mentally.  What if their behavior made Codey sad?

    It seems I had nothing to worry about.  The other day, I found Codey trying to help Maisey on to his chair. There was no growling involved.  No yelling whatsoever.  Just secret laughs and quiet whisperings of who knows what.  Codey was politely helping Maisey up on the arm of his chair and what does she have in her hand? A SCREWDRIVER! How does a 2 year old deaf girl communicate with a 25 year old non-verbal boy? I’m pretty sure I never even considered this happening. Needless to say, I worried for nothing.   AGAIN!  They are the best of friends and I am one blessed mama.  Codey shares his toys with them.  Codey shares his food with them.  I don’t know how Codey knows that they were hurting souls, but he did.  God is good!

     

  • Surrounded by miracles

    Date: 2012.06.25 | Category: Benjamin, Codey, Grace, Hope, Maisey

    Many people look at my life and think it’s crazy.  They tell me they could never do it.  They see only the health issues.  I don’t see those things when I look at my children.  I see beautiful, happy children full of life and compassion.  I see miracles all around me.  Here are just a few of them.

    Recently we learned more about Maisey’s story.  We knew her time in the orphanage was rough. We had heard stories of babies who weren’t able to feed right. We knew that the House of Hope had found her, took her to their foster home and nursed her back to health. What we didn’t know is that when they found her she weighed 3 kilos (6.6 pounds) at 6 1/2 months old.  My poor baby was starving.  I hate to think of her lying there crying and not having any comfort. She is so sweet and so funny.  She has brought so much joy to my life.  The miracle that is her life is so amazing to me.

    Becoming an Iowa girl!

     

     

     

     

     

     

     

    We had also learned that our sweet Benjamin probably shouldn’t have been put on a list.  They’ve opened up the special needs category a little, but we have been told that China doesn’t put children who have poor prognosis on their adoption lists, but somehow Benjamin found his way onto one. Don’t know how it happened but I’m so blessed that he did.

    He sang "Happy Birthday to me!" all the way through Target.

    We were told numerous times that Codey wouldn’t make it past the week, then a month, then a year.  I don’t know how many times we called family down because they said he wouldn’t make it through the night.  We were told he would be blind (he isn’t), deaf (he isn’t), and in a vegetative state….well, see for yourself.

    He's a happy boy!

    Then there is Hope, whose biological parents lived in the south, came to Iowa to deliver for pre-adoptive parents who lived on the east coast.  I don’t understand it, but I’m so happy that it happened.   On top of that is the miracle that Dan was in the unit and heard her story.  Not to mention the miracle that she  made it through all her open heart surgeries. I am so blessed to have her in my life.

    She is such a pretty girl!

    Or the fact that I just happened to have a routine ultrasound where they picked up my blood vessel rupture with Grace.  I was having no pain and no contractions.  Everything felt fine.  They said just a few more hours and she probably wouldn’t have made it.  Our doctor and Dan’s friend said after he pulled her out, and now that he knew she was all right, he could say that was the most blood he had seen and had a baby come out okay.  Add to that, the fact that I was 40, had my tubes reversed after 12 years and got pregnant the very first month.  The doctor asked if I wanted them tied again to which I replied a resounding YES!  He said good because I don’t know how you got pregnant any way.  One tube is way too scarred and the other doesn’t even look like it’s hooked up.  The GRACE of God is alive and well in my life.

    Grace has the most compassionate heart!

    My life is full of happy, wonderful miracles!  I am so very, very blessed every day to get to be their mama.

  • Happy birthday Codey & Kyle!

    Date: 2012.04.30 | Category: Codey

    25 years ago at 12:04 a.m. my life changed forever.  My dreams for those 2 blonde-haired, blue-eyed boys would never come to be.  I arrived in Holland.

    http://www.our-kids.org/Archives/Holland.html

    25 years ago, this week was one of the hardest I would ever go through. I gave birth to twins at 29 weeks, Codey & Kyle (2lbs 7oz & 3lbs 8oz). Codey has had one of the hardest lives I have ever seen. He’s spent close to 5 years in the hospital. He has had close to 100 surgeries. He is a fighter. He is the sweetest, funniest, most loving child around. His life made me grow up quickly but his life changed everything about mine.

    Kyle may have lived only 5 days, but his life changed me too. He made me appreciate every moment I have, to never take things for granted, to not fear death.

    Yes, I know Codey won’t see this, but I am proud of my boy who was told on numerous occasions that he wouldn’t make it. We lost count of the times doctors told us to call family down because he wouldn’t make it through the night. We were told that he would be blind, deaf, and in a vegetative state. Many would see his life as sad, but I see it as a miracle. I am happy every day that he is here with me.

    Plus, I never get to celebrate Kyle. Many times I don’t even get to say I have 8 children because it just takes to long to explain it. I love it when someone at a store asks me because I can proudly say I have 8 children and know that they won’t ask me more. Thank you for letting me celebrate this day! I can’t believe it has been 25 years already. I remember when I could barely stand the thought of how long it would be before I got to see Kyle again and now I’m 25 years closer.

    Happy birthday boys!  Mama loves you!

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