A Testimony About Down Syndrome

"God is great.  God is good.  Let us thank Him."  This was the theme that the University President had set for what was going to be my freshman year of college.  Growing up in a Christian home, going to a Christian school, and now on to a Christian college, this was something I knew.  Something that I probably even took for granted.

But did I really believe it?  Am I really putting it into practice?  And it was not until December, 2010, that I had to find out if this was more than just a trite Christian mantra.  As December, 2010, approached, we were anxiously awaiting a new arrival to our family.  After 3 boys, we were finally having a girl.  Needless to say, I was quite nervous.  I grew up with 2 brothers.  I had 3 sons.  I didn't know what I was going to do with a little girl in the house.  And Pam was looking forward to no longer being the only female in the house (or as she referred to it, "a locker room, with a refrigerator").

Then, in the early, early morning hours of December 1, the days were accomplished that Pam should be delivered, and Hannah was born.  As we was in the hospital that morning, admiring this beautiful girl that God had entrusted to us, a doctor and nurse entered our room.  They were rather blunt.  Bedside manner was not necessarily their strong point.  They told us, that due to some of the physical characteristics that they saw in our daughter, they believed that she Down Syndrome.

Needless to say, this news hit like a ton of bricks.  Here we are, with a newborn daughter that was not even 6 hours old, being told that she has an incurable genetic abnormality.  While this should have been a time of rejoicing, it became a time of fear and uncertainty.  I asked myself "Why us?"  What did we do to deserve this?  This is something that only happens to other people.  It can't really be happening to us, can it?

They drew some blood to send it out for testing.  We waited for what seemed like months to get the results.  Eventually, after a week, the test results came back and confirmed what the doctor had expected - Hannah did have Down Syndrome.

We struggled to accept this news.  It was difficult.  We did not know what we were in for.  We hadn't prepared for this.  How is this going to affect our lives?  What are we going to do?

After a few weeks, we finally let people know the news.  The reception that we received after this announcement was overwhelming.  We met people in the church who we had never spoken to before, who wanted to let us know that they had relatives with special needs, or that they worked with children with special needs, and that they would be more than willing to give advice, encouragement, and other kinds of help because of their experiences.  We received encouragement in the form of cards and e-mails.  Many let us know that they were praying for us.

I can't begin to tell you how much that meant to us.  It was encouraging.  It was a blessing.  It meant more than any of you could ever know.  Over the years, we have continued to see your kindness towards us, and towards Hannah, and I can't tell you how appreciative we are of that.

I want to thank those of you who have been Hannah's teachers.  I want to thank those of you who have given us advice.  I want to thank those of you who have given us encouragement.  And I want to thank those of you who greet Hannah personally and make her feel welcome.

Because of these circumstances, Pam has a job that she most likely would not have had if it weren't for Hannah.  She is able to help others who have children with special needs.  We both belong to several Down Syndrome  support groups, where we have a chance to offer advice, get advice, and encourage others who are in the same situation.  And without Hannah, I would not know what it is like to jump into 35 degree water on a 20 degree day in the middle of January to help raise money for Special Olympics.

I would also like to thank God.  We serve a God who wants us to have a relationship with Him, even though we fall short of His glory on a daily basis.  I'm thankful for a God who forgives us when we ask for it.  In America, when a Down Syndrome diagnosis is made while a child is still in the womb, the abortion rate is 80-90% (depending on the study you are looking at).  In Iceland, the abortion rate under these circumstances is effectively 100%.  Why?  Because the child does not live up to someone's expectations.

I'm so thankful that I serve a God that does not do the same thing to us when we fall short of His expectations for us.  As we have seen from our Pastor's messages from the book of Judges, even though we fall short, God will forgive us when we ask for it.

On December 1, Hannah will be 7 years old.  The time has flown by.  We couldn't be more proud of the person that she has already become.  We can't wait to see how she continues to grow and develop.  We look forward to what her future will be.

After these past several years, with all of the ups and downs that we have gone through, I can come before you and honestly say that "God is great.  God is good.  Let us thank Him."

Happy 2nd Birthday, Hannah!

It seems so hard to believe that Saturday, December 1, will mark Hannah's 2nd birthday.  Where did that time go?  It seems like only yesterday that we were bringing her home from the hospital.

Of course, at that time, we had no idea what our lives would be like.  The preliminary diagnosis at that time was that she had Down Syndrome.  Further test results that we received a couple of weeks later confirmed the initial diagnosis.  Our lives were overflowing with fear and trepidation.  We did not know what to expect.

Needless to say, we went through a myriad of emotions.  The first couple of months were overwhelming.  We had so much to learn.  We had so many specialists that we needed to see.

It seemed so surreal.  It seemed as though we were living in some king of dream world.  Our reality had been turned completely upside-down.  We knew our lives were going to change by finally having a little girl in the house.  We just had no idea that our lives would change this much.

As time went on, we didn't need to see as many specialists.  We had more knowledge of Down Syndrome.  We had developed a network of people who either had people with Down Syndrome in their family or had worked with people with special needs.  I'm thankful for our Pastor's wife who went out and purchased books about Down Syndrome, and read them, and encouraged us with what she was learning.  What a blessing it was for these people who had offered us advice and words of encouragement.

Looking back, we have been blessed.  Hannah has not had any serious health problems.  Yes, she wears glasses, and for the most part, she does leave the glasses on her face.  She had to have tubes put in her ears, which definitely made a difference in her hearing, as well as her overall balance.  And she has braces that she wears to help strengthen her ankles.  Other than this, she has had no other health problems.  It definitely could have been much worse, and we are truly thankful that her health has been good.

While her development has been slower because of Down Syndrome, we could not be happier with the progress she has made this far.  She is finally starting to let go of the furniture and starting to walk.  While she does not make it across the room, she is getting better and going farther day by day.  And hopefully, in the next couple of weeks, she'll be walking all over the house.  Just think of how much fun she'll have tearing the decorations off of the Christmas tree.

Pam has been teaching her sign language.  We have a couple of sign language videos for kids that she watches, and Pam reinforces those signs with her.  Hannah has even been able to teach me a couple of signs.  I now know how to say "please" and "thank you" in sign language.  Granted. that's not very much, but it's a start.

She continues to see a couple of developmental therapists, and when the new year rolls around, she will be seeing a speech therapist.  I am not able to be involved in this part of her life, as these therapy sessions usually happen in the morning while I am at work.  But I do read the therapist's reports, and from what I can tell, they are pleased with her development so far.  Of course, they continue to push Hannah to do more, so that she can continue to develop.

Needless to say, I am so very proud of Hannah and the progress that she has made so far in her short-lived life.  Just because she has Down Syndrome does not mean that we have to sit back and resign ourselves to a hopeless future.  I have every intention of helping Hannah reach her full potential as she continues to grow and mature.

She has been such a blessing to us.  She is such a happy child (most of the time, except for when she is tired).  At times, she is about the only one that is happy to see me come home from work.  She is very playful, and she likes to play with all of her brothers.  And they like to play with her.  It's been a tremendous blessing to see how the boys get along with her.

Words can't truly express how proud I am of her and how much I love her.  I find it so refreshing just to be able to pick her up and give her a hug.  She is the only one of my kids that will allow me to do that any more (and yes, I still can pick up and hug all of my kids, should I choose to do so).  I love to see her laugh.  I love to see her try so hard to do new things.  I love to see her show love to her brothers and to her mother.  I love her to death.

So, Happy Birthday, Hannah!  We love you so much!!!!!

Happy 1st Birthday, Hannah!

It's hard to believe that Hannah will be 1 yr. old tomorrow.  It seems as though it was just last week that we brought her home from the hospital.  Although we did not really know what to expect a year ago, I must say that we have been blessed in so many ways over the last year to have Hannah in our family.  In fact, there are many days after work, when I just want to go home and get away from everyone, that I walk in the door and Hannah sees me and gets a big grin on her face because she is happy to see me.  What more could I ask for?

As many people already know, Hannah was diagnosed with Down Syndrome.  We were told within hours of her birth that she had several symptoms of Down Syndrome, but they would have to do further tests to confirm the initial diagnosis.  After a couple of weeks, the diagnosis was confirmed.  We started the new year not knowing what to expect, not knowing how Hannah would grow and progress, not knowing what we were going to go through, not knowing how to react to this situation, not knowing how her brothers would react to her.

Honestly, we started the year out with fear of the unknown.  We did not personally know anyone with Down Syndrome.  We did not know much about Down Syndrome.  No one was able to tell us how mild or serious Hannah's condition would be.  We just did not know where this road was going to lead us.

We did know her heart was fine.  Heart problems are somewhat common amongst people with Down Syndrome, but the tests that they ran on her in the hospital showed that her heart was in good condition.

Hannah did not pass her hearing test in the hospital, and she also did not do well in some follow up hearing tests.  However, as time passed by, and her hearing was tested again, the tests indicated that her hearing was getting better.  I guess the inner workings of the ear just needed time to develop better.  She will be getting tubes in her ears next week to help drain the fluid that is currently puddling in her ears.  This should also help to improve some of the balance issues that she has.

Hannah had her eyes checked, and she needed to get glasses.  I am still not quite sure how they figured this out, but once she got her glasses, we noticed that they really did help her out.  She was better able to grab toys (and other things she should not have been able to get her hands on).  In addition, she looks so cute in her glasses.

We have had the opportunity to have 2 different therapists come into our home and work with Hannah on various developmental aspects.  She has received good reviews from them on her development this far.  She is able to crawl all over the house, and she is doing her best to pull herself up to a standing position.  Hopefully, in the next few weeks, she will be able to do this without our help.

Also, starting this Sunday, she will 'graduate' from the baby nursery to the crawler nursery at church.  This is a big step for her, as she will now be in a nursery with mobile children who are not necessarily that gentle with things (and people) that they come into contact with.  Pam, as well as some of the other ladies in the church, will be in there with her to help her out as she grows accustomed to this new environment.

Through all of this, I must say that I have been impressed with how her brothers have treated her and how they interact with her.  I was fearful that they would treat her like another toy (or worse yet, like they treat each other), but they have been very good with her and to her.  They all play with her.  While they may not completely understand Down Syndrome, they do understand that she is their sister and that they need to take good care of her.  And they do.

As far as Pam and I are concerned, we have our good days and bad days.  At first, the  bad days definitely outnumbered the good days.  But that seems to have changed, and our good days outnumber the bad ones now.  We still have a lot to learn, but one thing we do know is that she is our daughter and we love her very much.

I must admit that I still find myself asking why this happened to us.  Why was such a beautiful, innocent child born with Down Syndrome?  I am not sure I will ever get the answer to that question.  But one thing I do know is that Hannah has taught me so much over the last year.  I have found that I need to be more patient, not just with her, but with the boys (something I am not always good at).  I have learned that I need to watch what I say, because I now see how some of the idiotic things I have said before about people's mental capacity can hurt those around me.

In my freshman year of college, the theme for that year was "God is great.  God is good.  Let us thank Him."  Indeed, God is good to us.  While we may not see it at the time, as we look back to see what He has done for us, we can see His goodness and His providence in our lives.  As I look back on the last year and reflect on what we have been through as a family, I can be thankful for the words written by Ron Hamilton to a song that he wrote after having one of his eyes removed:    "Now I can see testing comes from above.  God strengthens His children and purges in love.  My Father knows best, and I trust in His care.  Through purging, more fruit I will bear.  O rejoice in the Lord, He makes no mistakes."

When Down Syndrome Comes Home

"I will praise Thee; for I am fearfully and wonderfully made..." - Psalm 139:14

"I think your daughter has Down Syndrome."  This is what the Nurse Practitioner told us mere hours after Hannah was born.  He told us that she had physical features that were consistent with Down Syndrome.  However, this was not a sure sign that she did indeed have Down Syndrome.  They would have to take some blood and send it out to be tested.

Needless to say, this is not what you want to here in the hours following the birth of your child.  We didn't know what to think.  We didn't know how to act.  We had problems coming to grips with the fact that our child might have Down Syndrome.  Obviously, if she were to have Down Syndrome, this would be a lifelong endeavor.  It's not like it would just go away after a period of time.

We were told that we would have the results of the tests in a few days.  We were hoping to know by the time we left the hospital what the prognosis would be.  Well, that didn't happen.  We waited, and waited, and waited.  We had a Doctor appointment set for 2 weeks after her birth, hoping to find out the results - but that did not happen.  As the time went on and we were not able to get results, I tried my best to be positive about this.  Perhaps the physical similarities were just a coincidence - after all, she was born 2 weeks early.  She definitely did not have all of the physical characteristics that would distinguish a Down Syndrome child.  These were reasons for hope on my part.

However, we received a call from the doctor a couple of days after this appointment confirming what we knew in the back of our heads but did not want to really admit - Hannah has Down Syndrome.  All optimism went right out the door.  We had a couple of weeks to come to grips with this diagnosis, but I know that I still was not prepared to hear it.  Where do we go from here?  What will we need to do differently?  Are they able to tell us how serious her diagnosis is?

In addition to the Down Syndrome diagnosis, we were also faced with the fact that Hannah had a hearing problem.  The hearing test in the hospital revealed that Hannah cannot hear that well.  In a subsequent hearing test, we found out that her ear canals are rather small and they were having difficulty finding out just how bad her hearing is at this time.  Perhaps the small ear canals could be the cause of her diminished hearing.  Perhaps once her ears and ear canals grow a little bit, her hearing will improve.  We have another hearing test scheduled in mid-February to see to what extent her hearing is diminished and to hopefully find out if her growth will help to cause the hearing issues to go away.

In all of this, there was some good news.  Many children with Down Syndrome have heart problems.  While Hannah was still in the hospital, they did an EKG on her, and found that her heart is functioning properly, and that there are no abnormalities.  While that does not diminish the overall diagnosis, we definitely needed some good news and this was cause for hope for us.

Hannah is getting bigger and gaining weight.  She is eating well.  Her digestive system is healthy.  We found out yesterday that her physical development is almost on par with normal child development.  Again, some much needed good news.

Through all of this, I had to learn to ask the right questions.  Initially, all I wanted to ask was "Why?"  Why did this happen to Hannah?  Why is this happening to Pam and me?  Why can't this happen to someone else?  Why can't Hannah be normal?  Instead of asking "Why?", I should have been asking "How?"  How can I use this to be a better Christian?  How can I use this to reach out to those who are not Christian?  How can I use this to bring glory to God?  While these seem like odd questions in the midst of this huge trial, I needed to realize that God allowed this to happen.

Please note that I said that God allowed this to happen.  He did not cause it to happen.  God can do what He pleases, and in His omniscience, He chose to allow us to go through this trial.  We don't know why.  We may never know why.  But one thing that I do know - we can handle this with His help.  In order to get through, we will need to rely on God, not on ourselves.  He will give us the grace and the strength that we need to get through.

Several years ago, Ron Hamilton wrote a song after he had one of his eyes removed.  It is a source of strength and encouragement for me.  Here is a part of that song this really special to me: "God never moves without purpose or plan, when trying His servant or molding a man.  Give thanks to the Lord though your testing seems long.  In darkness, He giveth a song.  O rejoice in the Lord, He makes no mistakes.  He knoweth the end of each path that I take.  For when I am tried and purified, I shall come forth as gold."  It is very encouraging to know, and to be reminded, that God does not make mistakes and that He is in control.

I am so thankful for Hannah.  She is the most beautiful girl to me.  While she is special in that she has Down Syndrome, she is a gift from God to us.  And because of that, we will do our very best to be the best parents that we can be to her.  We have every intention of helping Hannah every way we can, so that she can grow up to be as 'normal' as possible.  We have the help of family, friends, and a great church family to help us and to encourage us.  We have received helpful information from many people we know, and several that we do not know.  This has been a tremendous encouragement to us.

Through all of this, we still have some prayer requests.

For Hannah...please pray that her growth will continue to be as close to 'normal' as possible...pray for her upcoming hearing test...pray that her diagnosis would be on the mild side and not to the severe side

For Pam and me...please pray for grace, strength, and patience...please pray that we would have understanding, that we would continue to learn about Down Syndrome and how best to deal with it

For the boys...pray that they would understand that Hannah needs more attention because of the Down Syndrome, and that this means that we do not love them any less...pray that they would continue to be good to her and help her

Thank you for your prayers and your encouragement.  They do not go unnoticed.