Because I have Down syndrome...

The following was from Ernie's Facebook status this morning (including the picture):

My name is Jonah. Today when my daddy got my adoption paperwork it came with no shot records. All the other families had shot records. When he asked why I had none they said because I have Down syndrome I was not worthy of receiving any shots. My daddy cried when he heard this. He then told me that God loves all of His children and that I would be fine.

Notice the redness under Jonah's nose.  That is because he has been denied even the most basic medical care.  He has a chronic bloody nose.  He is stuffy and can't breathe well.  He is almost 4, and although some developmental delays are to be expected due to his having Down syndrome, his delays are more extreme than they should be due to being left in a crib (more like a cage with it's metal bars and hard floor) all day in an impoverished orphanage.  Jonah can't eat much other than rice (even noodles are too difficult unless they are broken into tiny pieces) because he can't chew well enough to break food up. He does walk but not very well.  This summer he turns 4 years old, but he is very much a "baby" and seems more like a 1 yr old.

Jonah has suffered from neglect due to the conditions of the orphanage in which he has lived for nearly 4 years.  But aside from the poor conditions of the orphanage he has suffered because he has Down syndrome.

Because he has Down syndrome Jonah has not received any immunizations.

Because he has Down syndrome Jonah was not given medical care for his illnesses.

Because he has Down syndrome people stare at Jonah rudely.

Because he has Down syndrome people act scared of Jonah.

Because he has Down syndrome people act disgusted by Jonah.

Because he has Down syndrome people ask what is wrong with Jonah.

Because he has Down syndrome Jonah waited almost 2 years to have his file prepared for adoption.

Because he has Down syndrome Jonah waited almost 2 more years to be adopted, even though there are literally thousands upon thousands of people waiting to adopt a child.  All this time he was considered "special focus" and was listed on the "shared list" that is available to all agencies, meaning he could have been adopted by anyone working with any agency.  The restrictions that are placed on some children (e.g. can't be adopted by singles, families must already have a completed and logged-in dossier, etc.) didn't apply to him.  He was made available to anyone that qualified to adopt in an effort to reach more prospective parents, just like so many other precious children who continue to wait because they have Down syndrome.

Because he has Down syndrome Jonah was featured on Reece's Rainbow, an amazing organization dedicated to helping "hard-to-place"children find families, especially kids with Down syndrome.  He was featured on there for many months before we chose to adopt him.  If you would like to be a part of the blessing that comes in showing this precious child the love he so deserves, the medical care he greatly needs you can donate to our family sponsorship page here:
http://reecesrainbow.org/75910/sponsormurray

Jonah, you may have Down syndrome, but it will never define you.  You will be known not because you have Down syndrome, you will be known for the wonderful person you are.  I will make sure of it.  And your Daddy.  And all of your many siblings.  You have a family now.  You are wanted.  You are so adored.  You are treasured.

Jonah, YOU ARE LOVED!!!!!

There is always love in Daddy's hands...

Reflections on Father's Day...

When my husband and I first met one of the things that drew us together was how well we could relate to each other's desire for our fathers to have played a bigger role in our lives.  Growing up I only saw my dad a few times a year.  He left my mom when I was very young, and from that point on he had minimal involvement in my life.  I do believe he loved me, but I always wished he had done more to actually show me his love.  Ernie's story was very similar, except that he had grown up with even less contact from his dad.

Both our dads ended up having more children with new wives.  Those children were given the attention and love from our dads we so greatly missed.  Don't misunderstand, we are very grateful for that!  We love those siblings, even if we rarely see them, and truly want the best for them!  We are glad they never felt the sting of rejection we felt from our dads.  But my husband understands what I mean when I say I feel like "yesterday's leftovers."

Growing up without a dad is hard.  I know if there were anything my husband wishes could have been different in his life it would be to have grown up knowing a father's love.  As he became an adult he was able to establish a relationship with his dad, but as I know from my experience with my own father a distant relationship will never be enough to heal the hurt and damage caused by growing up feeling rejected by your own dad.  When my father died I was full of grief, but while I mourned his loss one of the strongest feelings I had was the sadness that our relationship would never be better, that all hope of being closer to him was gone.

So Father's Day has always come with mixed feelings for both Ernie and me.  However, this Father's Day Ernie got the greatest blessing ever.  A child - an orphan... abandoned, unwanted, and unloved - walked into his arms, and both their lives were forever changed for the better.  Someone recently questioned Ernie's role in our adoptions, even suggesting he "be a man and say NO MORE" and that I am "not allowing him to have a decent, peaceful life."  Oh, if only those who don't understand could see the joy in his heart!!!

Ernie has talked to my mom several times while he is in China, and she has seen his posts on Facebook.  As she said to me this morning, "Ernie doesn't need to fly on a plane to be on cloud nine - he's already there with his precious little boy!"  She noted how incredibly happy he is, how much he is enjoying his new son, and how fiercely he is willing to defend him against those who see him as worthless due to his having Down syndrome.

I am so proud of my husband for the man he is, for the father he has become despite having grown up without one.  I thank God everyday for sending him into my life.  I am grateful for his love and for our great friendship (we truly are best friends!).  I am amazed at the blessings God has poured into our lives.  I pray those who don't understand will open their hearts and minds to accept the joy we have in our family, even if the way we have chosen to build our family is vastly different from their own.  I pray broken relationships are mended and distant relationships grow stronger.  I pray those we love will realize how precious our children are and burn with a desire to show them the love they deserve.  I pray this precious little child grows to understand how greatly loved his is, how much he is wanted, how wonderful and incredibly special he is!

Happy Father's Day!!!

Travel time!

Just a brief note to say that travel approval we were waiting for, well it came weeks ago.  Yep, that's right.  This Father's Day my husband will have the best gift ever!  I'll be posting pictures soon!

So how is Jonah doing?

In a recent post I focused on the conditions in Jonah's orphanage.  This post is all about Jonah himself.

When another family traveled recently to Jonah's orphanage to adopt their own child they blessed us with new pictures of him.  We were so excited to finally have current pictures of Jonah, and naturally my first thought was to see if he looked healthy.  I wasn't pleased with what I saw.  His nose looked cruddy with both junk and blood.  One of his ears looked red with infection.  His cheeks looked flushed with fever.  His lips looked chapped, and there was a sore near his mouth.

Kids with Down syndrome tend to get sick more frequently and more severely than other kids.  Even in a clean home environment with parents to care for them and great medical care they suffer more with illness.  Jonah's orphanage would be a bad place for even a healthy child, but for a child with Down syndrome it's downright dangerous.  We desperately need to get Jonah out of that orphanage.  We are at the very end of the process and will be getting our travel approval anytime now.  However, we can't make any travel arrangements until we have the money to pay for them.  Please consider making a tax-deductible donation to Reece's Rainbow to help us rescue this precious little boy!

Here is the link to the donation site.  Jonah is known as Breck on Reece's Rainbow because that is the name they used to advocate for him long before we chose to adopt him.
http://reecesrainbow.org/75910/sponsormurray

Moving down...

We are moving to a new home.  Everyone keeps asking if we are "moving up."  No, we're actually moving to a smaller, older home.  This current adoption is our 7th adoption in just 9 years.  The adoption expenses themselves have been enough to break us financially, but add to that all the medical bills (multiple special needs children means a lot more medical bills) along with the normal costs of raising children like food, shoes, etc. and it becomes obvious that we have to cut expenses somehow.  Moving to a cheaper home seemed the best option to both help with our current financial situation and also to be in a better position financially to adopt more children, help other adoptive families, donate money towards better orphan care, and donate more to the church.

The home we are moving to is VERY different from our last home.  It's smaller with a lot less closet space and also less garage/storage space.  It has fewer bedrooms, but we are converting the dining room to a bedroom to help with that.  It's older, built in 1970 and never really updated (e.g. the tubs are harvest gold colored, typical 70's color).  The floors need to be replaced, especially in the bedrooms.  The heating/air conditioning situation is a problem that will have to be replaced once we can afford it (we'll be very hot this summer!).  The windows need replaced, and there's other work to be done as well.  However, the house is in pretty good condition overall given its age and the lack of updating.  We preferred to get a home that needed some work since it would be cheaper knowing we would do the work little by little as we could afford it.

One of the biggest differences is the location.  Our last home was way out in the country where you heard more cows than cars.  There were a lot of empty fields around, and there were no worries about the kids playing in the road.  There were gorgeous views of fields, farmland, hills, and mountains in all directions.  Every morning you could see the sunrise over the Smoky Mountains, and in the evening it set over the ridge to the immediate north of our home.  Our new home is right in the middle of town.  We have a tiny front yard, and the street we are on sees plenty of traffic.  (This is a huge adjustment for the kids and a constant source of concern for me since it would take only the briefest moment for one of the toddlers to get into the road.)  We are close enough to the main road to hear nonstop traffic, and there is also a steady stream of sirens since we live close to the fire and police station.

However, despite how different our new home is and the fact it is both older and smaller, we love it.  It may be right in the middle of town without all the gorgeous views we had in the country, but we can walk to the kids' schools, several different parks, the library, and anywhere else we could want to go.  We are only a block away from the greenway that goes for miles, and there are sidewalks all over town as well.  We have great neighbors, and our kids love having a friend right next door to play with.  This is where God has led us, and we are excited about the future here in our new home!

Who cares what color the bathtub is when you've got such cute little babies to play in it?

All the girls are sharing what is supposed to be the master bedroom.  We figured it best to give them the biggest room since there were more of them sharing a room than in any other room, and it doesn't have a bathroom anyways.  Eventually we'll get mattresses to go under their beds so there will be more bed space (right now the babies sleep near mommy).

I was so proud of Caleb for not being upset about the pink carpet in his room.  Most boys his age would have complained.  Not that he likes it, but he said he knew we would replace it whenever we can afford it.  He has been a real trooper about moving.

A typical evening at our old home, our kids playing with our neighbors in the street.  We'll miss the peacefulness of that street (there were only a handful of homes on it), the beautiful ridge line to the north (visible in the picture), the view of the Smoky Mountains to the south, and the farmland and fields all around.  We'll especially miss the neighbors whose kids are in this picture.  We'll always be grateful for the time we had there!

Let's get him home!

When we first committed to adopting Jonah we joined a group on Facebook for people adopting from his orphanage.  As soon as I was on the group I started reading through all the old posts to find out as much as I could about his orphanage.  Unfortunately it soon became clear his orphanage was not one of the better ones (not too surprising since it is in one of the poorest provinces, and it is several hours away from the capital city of that province).  In fact, the conditions there sounded downright grim.

As I looked through pictures taken by other families who had traveled there I knew the descriptions were not an exaggeration.  I noticed not only did the building itself look grim (almost no toys, "cribs" looked more like cages, paint was fading and chipping off the walls) the children themselves looked truly pathetic.  In pictures at other orphanages kids are often seen playing on the floor with other children and caretakers.  In the pictures of Jonah's orphanage kids are just sitting in their metal cribs.  There are pictures taken by a number of different families who all traveled at different times, but in all the different pictures kids are just sitting in their cribs.  Most of the children appear to have vacant expressions, just staring mindlessly into space as the day passes by.  Many also appear physically unwell - they have sores on their face, redness around their eyes, runny noses, etc.

There are a number of smaller "group home" care centers where children receive medical care, therapies, lots of stimulation, and even love and affection by the caretakers.  In some orphanages younger children even attend preschool classes.  There are plenty of toys and clothes and enough food for all the children.  Unfortunately Jonah's orphanage is most definitely NOT one of these places.  No orphanage, no matter how good, can replace the love and care of a family, but the worse the environment the more damage that is done to the children.

Given the substandard conditions at Jonah's orphanage it is all that much more important we get to him without delay.  We are now awaiting our travel approval, which could come at any time, and once it comes the only thing holding up travel is a lack of funding.  Please consider praying for our Jonah and for us to have the funds for travel as soon as we get our TA, share our tax-deductible fundraising site on Reece's Rainbow, and if you are able please consider donating to help get our precious child out of a miserable orphanage and into the arms of his family.

Here is the link to our tax-deductible fundraising site on Reece's Rainbow, an amazing organization which advocated for Jonah long before we ever committed to adopt him.  (He is known as Breck on RR.)
http://reecesrainbow.org/75910/sponsormurray

This is how Jonah spends his days.  He is in the center of the picture wearing a yellow shirt and red pants.

Another picture from a different day.  So so bored... 

Jonah isn't in this picture, but it shows another day in his room.

...and yet another day of kids just sitting bored in their cribs.

No child should have to grow up like this.

Jonah, in desperate need of a bath and decent skin care.  Some boy clothing would be nice as well!

A Birthday Challenge

This Sunday (April 20) marks Caleb's 10th birthday.  In 10 years we have never once had a party to celebrate his birthday.  He has been to parties for friends (we minimize those to just the closest friends due to costs of birthday presents) and seen lots of pictures on Facebook of kids having parties with fancy cakes, cool decorations, treat bags for all the kids, and of course tons of presents for the birthday child.  Yet despite seeing the fun celebrations of other kids Caleb has never once complained about not having a party for himself.  He knows we don't throw parties because of the cost and our need to save money for all the adoptions we have done.

This year to celebrate Caleb's birthday I want to throw him a "virtual party."  Everyone is invited!  For a gift all you have to do is give a tax-deductible donation to Reece's Rainbow to help bring home Caleb's newest brother.  Here is the link:  http://reecesrainbow.org/75910/sponsormurray

People often asked what Caleb (our bio son, the first child in our family) thinks about us adopting "so many" kids, especially special needs kids.  Some people even suggest that by spending so much money to adopt these children and then both time and money to raise them once they are home we are taking too much away from Caleb.

The fact is Caleb LOVES what we are doing!  In fact, he has already asked if we could "go ahead and choose another child to adopt after we get Jonah home."  As to what he thinks about the fact Jonah has Down syndrome he asked us after the Buddy Walk last year when we would finally adopt a child with Down syndrome so he is really excited about having a little brother with Down syndrome.

Caleb is a very tender-hearted and loving child.  He has tons of energy just like any other little boy, but he also has an amazing heart with lots of compassion for those in need.  He cried when we visited Micaelyn's orphanage in China and he saw all the children left behind.  Likewise he has cried when seeing homeless people on the streets, even going so far as to give his own money to them and begging me to give them more.  He also has a great desire to help children with special needs.  At his last school he was specially chosen to be a buddy to a child with special needs (I'm almost certain the child has Down syndrome), and even when the other kids made fun of the child with special needs and also of Caleb for being a friend to the child he stood firm in his friendship of this special child.  When Caleb changed schools he was very concerned about his friend not having him there to help him, and he started asking right away if he would have an opportunity at the next school to help kids with special needs.

So this birthday I wanted to honor Caleb by having people donate to our account on Reece's Rainbow to help get Caleb's little brother home.  We are very close to having our travel approval, but we can't travel until we have the money for the $6,000 orphanage donation and the money for the travel expenses.  If just 100 people give $10 each we would be $1,000 closer to bringing Jonah home.  Just $10 for his 10th birthday to help get his little brother home - how great a gift is that?  And of course the more people that give the closer we get to travel!

Once again, here is the link to donate:  http://reecesrainbow.org/75910/sponsormurray
Don't be thrown off by the fact Jonah is known as "Breck" on Reece's Rainbow.  He was listed for quite some time on Reece's Rainbow before we committed to him, and "Breck" is the name he was given for his photolisting.  Remember, your donation is tax-deductible!

 

 

Let's get this little angel home!!!

Introducing Jonah!

We are so excited to announce the newest member of our family, our precious little Jonah!  Jonah is 3 1/2 years old, lives in China, and has Down syndrome.  He had been listed on the shared list since 2012, but he is no longer waiting to be chosen!  We can't wait to bring him home.  Because Jonah was featured on Reece's Rainbow we have a family sponsorship page there where you can make a tax deductible donation to help get little Breck home if you so wish.  Please head over there and take a peek at our little sweetie!
http://reecesrainbow.org/75910/sponsormurray

Welcome home, Hannah!

Since my computer was fried by a lightening strike to our house I wasn't able to blog for many months, and now that I am back to it I wanted to finish out the series on BWS before moving on to current news.  Now that I've finished the series I can happily announce our little Hannah is now HOME where she belongs!

The process to get Hannah seemed to take forever.  It's incredibly frustrating waiting on other people to do their jobs so that your daughter can come home, and we seemed to continuously find ourselves waiting much longer than expected.  There was 17 very long months from the time we were matched with Hannah to the time we got her home.  Needless to say her arrival was long anticipated and full of great happiness and excitement!

We chose to have only one parent travel to save money, and since we felt the kids at home would do best with mommy being with them (especially with one of them being a 1 year old extremely attached to mom) Ernie got to be the one to travel.  It's a good thing he has "been there done that" before because Hannah was NOT happy with the transition.  She screamed for a long time but soon settled in and attached to her new daddy, and as an added benefit Ernie gained new found respect for my role as a mom.  :)

After 2 weeks it was FINALLY time for Daddy and Hannah to come HOME!!!!  We have an incredibly wonderful church family, and we were so excited many of our friends from church showed up to welcome them home.

My kids were happy to have their best friends show up at the airport to help pass the time while waiting for Daddy to arrive! 

Joshua doesn't like to have his picture taken.  Apparently his friend doesn't either, so this picture is more amazing than it looks!

Looking for Daddy

The plane has landed.  Daddy and our little Hannah are HERE!!!!!

 

Watching for Daddy and Hannah to walk off the plane.  They were the last ones off.  :)

Waiting for them to appear.

THERE THEY ARE!!!  THEY'RE HERE!!!  THEY'RE HERE!!!

 One of the happiest moments of my entire life!!!!!!!!!!!!

I love this picture - the way my husband is looking into my eyes!  We are so focused on each other, I'm holding little Hannah for the first time ever, and Ernie is holding Elianna for the first time in over 2 weeks.  Such a special moment! Naturally little Hannah was ready to go back to her Daddy since she had gotten so used to him over the last 2 weeks, but I couldn't wait any longer to hold her and Elianna was ready to let Daddy hold her. (Once we were home Hannah took right to me.)

I was feeding Hannah little fruit snacks to help her get accustomed to me, but Elianna wanted to feed her new sister herself.  It was the sweetest thing ever to watch the first moments of bonding between the two girls who will grow up together as "virtual twins."

Micaelyn's first moments with her new little sister.

Even at her young age Elianna understood that Hannah was scared and upset and wanted to make her feel better.  Such love!

Our first family photo with Hannah (but missing Christina).

BWS - Other considerations

There are a number of other conditions that can occur as a result of BWS.  I'm not going to attempt to list them all, just some of the ones we have to be most concerned about.

Hypotonia/ developmental delays - Hypotonia (reduced muscle tone) is a symptom of many different genetic syndromes, including BWS.  Many kids have developmental delays as a result of the hypotonia.  We have no idea if Micaelyn had any early developmental delays since we didn't get her until she was 3 1/2.  It's quite possible she had some early delays but had mostly caught up by the time we got her.  Elianna did have some delays but not severe.  She was later to roll over than expected, later to sit up, later to walk, etc., but her delays were not so severe as to cause any great concern.  I knew to expect some delays, so we just gave her a lot of extra help.  All her older siblings have been great at encouraging her, and they provide a lot of motivation for her to keep trying new things because she is so eager to keep up with them.

Hyperactivity/ stubbornness/ aggressiveness/ other difficult behaviors - It's hard to know how much of a young child's difficult behavior is normal immaturity combined with personality versus how much of it is a result of an abnormal disorder.  Nonetheless difficult behaviors are another concern with BWS.  Truthfully neither of our girls with BWS could be considered an "easy" child.  Micaelyn is very sweet and loving but still requires a lot of discipline to keep her in control.  Likewise, Elianna can be rather difficult at times.  She and Hannah are both 2 years old but she is FAR more difficult.  At the last appointment with the geneticist she was asking about Elianna's behaviors, and while Hannah was acting like a normal 2 year old Elianna was proving just how "wild" she could be.  I am sometimes shocked by the aggressiveness both Elianna and Micaelyn show at times.  Elianna can be particularly rough with Hannah, and Micaelyn can be downright awful towards Malachi at times for no reason.  Both girls are extra active, stubborn, very strong-willed, and constantly pushing the limits with their behaviors.

Seizures - Seizures are another risk associated with BWS.  Neither Elianna nor Micaelyn have had a seizure that we know of (we can't know for sure about Micaelyn since she was older at adoption).  However, because I know they are at risk for them I am always extra careful at keeping temperatures under control when they are sick (Elianna has had many episodes of high fever).  One seizure is concerning enough, but I also think about the possibility of a febrile seizure leading to a recurring seizure problem.

Kidney problems - People with BWS are at higher risk for a number of different kidney problems.  Our girls get regular ultrasounds and kidney function tests to screen for kidney problems.  We have had extra concern about Micaelyn since the formula she drank in China was tainted with melamine, but so far she hasn't had any problems.

Cardiac abnormalities - Cardiac abnormalities are another concern with BWS.  So far we haven't had any concerns with Micaelyn.  It was recommended to us by the geneticist she be evaluated at some point by a cardiologist, but since she has no signs or symptoms we have decided to wait until she is old enough to participate in sports and have the cardiologist evaluate her at that time.  Elianna was born with a murmur, probably caused by a "hole in the heart" type defect.  She was referred to a cardiologist before we adopted her, but she never got seen.  By the time we got her the doctor here didn't feel there was a reason for concern, and her murmur is no longer audible so most likely she was born with a heart defect that corrected itself.  Once she is older and participating in sports we will have her evaluated by a cardiologist just to make sure there are no more cardiac abnormalities.  There is always the risk the girls could be fine and then develop abnormalities later such as cardiomegaly (an enlarged heart), so by holding off the cardiac testing until they are older we can catch any issues that arise while they are growing (the risk for heart problems isn't high enough for repeated testing each year).  Obviously if they were to start having any signs or symptoms of cardiac problems we would get them tested immediately.

Teeth problems - Although there are several problems with the teeth related to an enlarged tongue (e.g. underbite, teeth splaying), I've read there can also be a problem with the enamel on the teeth.  At her most recent dental exam the dentist said Micaelyn was starting to develop places on many of her teeth where the enamel was wearing away.  He referred us to another dentist who will help us determine the best course of treatment.

Frequent Illnesses - Kids with genetic disorders typically have weaker immune systems and deal with more illnesses than other kids.  It seems likely this is the case with both Elianna and Micaelyn.  They both get sick more often than the rest of their siblings and take longer to recover from illness.  It seems like Elianna especially deals with an excessive amount of sickness, and although she and Hannah are constantly together and always sharing drinks, pacifiers, spoons, etc. Hannah doesn't deal with near the sickness Elianna does.  Likewise, Micaelyn deals with far more sickness than Malachi and Caleb with whom she goes to the same school, and also despite the fact she frequently shares drinks and food with Malachi.

Here is an image I got from a BWS group that lists some of the features of BWS.  There are certainly many features not listed, and I have no idea what the source of the image is but thought it was quite interesting.