BUSY AT SCHOOL and OTHER NEWS: GRAVE'S DISEASE

The boys have been busy at school in their new special education room.  Here are some photos from their Create Group Time.  They are making leaf wreaths.

OTHER NEWS:

As part of Jonah's 7 year check up, his pediatrician did a thyroid screening because thyroid issues are very common with Down syndrome.  

Down Syndrome and Thyroid Issues

Most people with Down syndrome who have a thyroid issue deal with hypOthyroid or low thyroid.  It is much more rare to deal with hypErthyroidism or high thyroid.  This is true for the general population as well as people with DS.

Jonah's thyroid screening came back high.  We were sent for additional bloodwork at the Children's Hospital, and the diagnosis at this point is Jonah is presenting with a combination of Grave's Disease and Hashimoto's Disease- both are autoimmune conditions that cause hypErthyroidism. 

We were hoping it was just an infection that was causing a temporary jump in Jonah's thyroid.  Unfortunately this is not the case.

HypErthyroidism is a treatable condition although it can be rather tricky to find the right medicine.  The medicines available can be hard on a person with possible side effects being rash, low white blood count, headaches, muscle aches, and nausea.  Of course, these side effects are not highly likely to happen, but as a mom I am worried about giving my little guy such a powerful medicine.  

However, to not treat Jonah's hypErthyroidism would put him at risk for heart issues, growth and bone development issues, and overall feeling in poor health.  

So we will be starting the methimazole tomorrow and getting monthly blood checks to see how the med is working on his thyroid (goal is to shut the thyroid down).

Grave's and Hashimoto's can sometimes go into remission after a period of treatment.  Sometimes that remission is permanent and sometimes the conditions come back again after a period of no treatment.  

So everything with this is a wait and see.  Never a dull moment with Jonah....

Hyperthyroidism Info from Mayo's

SOMEONE GREW UP WHEN I WASN'T LOOKING

You spend every day with her.

In the beginning, it was almost every moment.  

And yet, somehow you miss it.  

The little girl grows up and becomes a young lady.  

How did it I not see it happening?  

How did it go so fast?

Our Lydia is a freshman!  She went to her first Homecoming Dance this weekend.  

We are so proud of the beautiful young woman she is becoming.  We are so excited for what her future holds for her!

We love you Lydia Grace!

This August Lydia started volunteering at the horse therapy ranch in our town.  We are so happy she has found this place to use her talent and love for horses combined with her knowledge and experience with kiddos with special needs.  It's a great fit, and Lydia is doing an amazing job learning how to help during the lessons.  

Here is the link to the ranch in our town that Lydia volunteers at:
heavensgaitranch.org

Here is the link to an article discussing the benefits of horse therapy for people with special needs.  
equestrian therapy special-needs

THE DANCE BETWEEN BEN AND I

Remember your first dance?  It was exciting and fun, but probably a bit awkward.  Awkward because you were just getting to know the person.  There wasn't that familiarity and comfort level with them yet.  And there certainly wasn't a level of trust yet that comes from knowing there is unconditional love between the two of you.  

Those things take time to develop and grow in a relationship.  Even in a parent child relationship...

At first that might sound strange- don't parents and children love each right from the birth?  

Probably as a parent I would say I loved my kids from the minute I knew I was pregnant.  I loved them each during the 9 months they were growing inside of me.  I loved them even more fiercely the moment they were placed in my arms.  But I probably didn't feel comfortable and familiar with that love until after a few weeks or even months of caring for them 24/7.  Time builds relationships.

But now think of this from a baby's point of view- a baby learns to trust his mother because she responds to his every need right from the beginning.  The baby learns to be comfortable and familiar and SAFE with her because he trusts that she will meet his needs.  

This is was obviously our experience with our 3 biological children, but it also was our experience with Jonah since we adopted him at 1 month old.  In addition, Jonah had a wonderful foster mom who loved and cared for him deeply which made the transition to our family so much easier.  Jonah realized from the very beginning that primarily one person in his life would respond to his every need and keep him safe.  Jonah felt loved!

Now think about Ben's experience.  He spent his first 3 weeks of life at the hospital with heart issues.  Who were his caregivers?  Nurses who may in fact have been very good nurses, but they worked shifts so everyday Ben had a different caregiver.  Different sound of voice, different smell, different way of doing things.  And there was no constant presence of a mom and dad to be there with him when the nurses weren't.  If a nurse wasn't caring for Ben, he was alone in his crib.  

After 3 weeks at the hospital, Ben was transferred to the orphanage and placed in the groupa for sick babies.  

Here is where is "special mama" caregiver took over.  She had a special love for Ben and looked out for him all six years, even after he transferred to different groupas as he got older.  However, she didn't work 7 days, 24 hours a day, so even though Ben was blessed with some consistency because of her, he still experienced a changing caregiver from 1 month until he was 6 years old.

For the next six years of Ben's life, he would experience people who cared for him-some good, some not so good- but always changing.  Either shift changes, or caregivers would quit and be replaced. 
Ben never learned to really trust one person in his life except some trust with his special mama- but again, she wasn't a 24/7 presence in his life.

So then a little over a year ago, we bring Ben home to our family.  

His relationship with Andrew is something he has never experienced before because he had no primary male in his life at the orphanage.  Older brother and sisters are new relationships for him also.  But the newness of these relationships actually, I think, have made those relationships easier for Ben because he has nothing to compare them to.  

The only relationships for Ben that have familiarity are his relationship with me and Jonah.  

For Jonah, Ben had playmates in his groupas.  The difference is those playmates came and went in his Ben's life.  Some were transferred to other groupas, some were adopted, and some were transferred to mental institutions.  Ben didn't know the reasons why, but some days he would wake up and one of his friends were just gone, never to be seen or mentioned again.  

Now Ben has this little brother who is always there and not going anywhere.  So yes Ben is use to having a playmate, but he is not use to that playmate staying.  So that is why the relationship with Ben and Jonah is a process.  Ben is learning what it means to have a friend that never leaves you.  

But I think the biggest struggle is Ben's relationship with me.  

In someways, I am just like the many orphanage caregivers he has had over the years.  I feed him, I bath him, I dress him, I watch over is behavior and discipline him when needed.  

But in many ways, I am very different from his caregivers because first of all, I am always here.  I don't go away.  Ben has me 24/7.  

And the biggest difference is I also interact with him out of love.  I cuddle him (or try to), I want to have fun with him, I want one-on-one interaction with him.  I ask him questions, I want eye contact with him.  He is more than a job to me- he is my son.  I am responsible for his happiness, well-being, and teaching him to be a responsible and productive grown up some day.  I am responsible for his spiritual well being and am trying to teach him about God's love for him.  I am trying to model God's love for him.  I am way more invested than any caregiver he has had for the past 6 years.  

Our relationship is trying to grow on all levels at the same time.  When you start with a little baby, the baby first learns to trust his mother because she responds to his every need.  Then love between mom and baby grows because there is the foundation of trust.  A mother really doesn't start disciplining her child until after that 1st year of life- the first year is mainly about loving on your baby.  Discipline enters the picture after trust and love have been firmly established.  

Ben and I are working on trust, love, and discipline all at the same time which makes it harder.  Ben is learning to trust me, trying to figure out what my love for him means, and trying to understand and accept my discipline in his life.  We don't have the privilege of gradually getting to know each other- we have been thrown into this and are doing our best to learn on the run.  

Ben didn't have that crucial 1st year of life with me where mom and baby CONNECT.  I didn't get to comfort him and change his diaper and feed him a bottle where he could look up at me and make eye contact.  We missed all those little things that happen between mom and baby that really aren't very little- they are HUGE in the bonding process.  Ben and I didn't have the opportunity to learn how to dance together as mother and BABY.  

We are learning that dance, but it's hard and complicated.  Ben doesn't know what to do with me lots of times.  I am a caregiver who is always in his business.  I am a caregiver who loves him.  He hasn't had much experience with caregivers like that.  

Some days are beautiful between Ben and I.  His love for me seems evident and very genuine.  My love for him feels very natural and flows easy from me.  

Other days are difficult.  Ben's love either seems manipulative or isn't there at all.  Difficult days for me are when my love for him doesn't seem like second nature and feels like more of a choice than a feeling.  

This is our dance.  It is a very different dance that I had with our other 4 children.  In the long run,  the differences in our dance will probably be what makes it be so beautiful and precious in my heart.  

So for right now, Ben and I are learning to dance together and sometimes stepping on each other's feet.  Eventually, we will sail across the dance floor with a beauty and ease that has been worth all the hard work and effort.

Here is our dance from our Sunday hike: FUN!

WHAT'S BEEN GOING ON LATELY

The school year has started out fast and furious!

For the past 3 weeks, I have had the opportunity to sub as an aide in the special ed department at the boys' school.  It has been a great learning experience, but it has also been a bit overwhelming working everyday and still being a mom and housewife.  Also I have always had great admiration for the teachers and aides at school, but now I have even more admiration after watching all the work that goes into teaching our kids.  Our school is blessed with an incredible staff who really cares about their students!  

One weekend in September, I did an intense 2 day toilet training with Jonah.  I let him go naked which is why the floor is covered in a tarp.  He had some great successes with telling me he had to go, but also he had some accidents where he didn't even notice he was going.  But I think everything we try with Jonah is helping in a small way to get him completely trained.  We are at a point now where he goes almost all the time on demand with some wetting in between.  At least we are moving in the right direction.

We got to visit Abigail this weekend up in MN because Stephen had a cross country meet up there.  The boys were so excited to see their "Bubba"- their name for Abigail.  This was a photo we texted to Abigail to let her know we were on our way there.  

The boys are very good little travelers.  They like watching movies.  They also did amazing at the cross country meet considering it was 90 degrees and humid!  

Here is a really sweet video and Ben and Abigail. 

CROSS COUNTRY SEASON FOR STEPHEN

Since this blog is also serving as our family's scrapbook, here are some photos of Stephen's senior year in cross country.

Stephen with Grandma and Grandpa

One of my favorite photos: Jonah is in the middle of the cross country team, acting like he is one of the runners.  So cute to watch him and "E" interact!  Ben was too shy and stayed in the stroller.  Just not ready to be part of the team yet.

JONAH TURNS 7!

Jonah turned 7 on 9-14-10.

Jonah's birthday brought about a lot of emotions for me.  

1st, tremendous joy and happiness because of the privilege we have had of having this wonderful little boy in our lives for 7 years now!  We are so proud of all his accomplishments over these past 7 years.  He has come so far and continues to amaze us with his determination to work hard and learn new things every day  He is super cute and super funny!  Jonah is just one amazing little boy.

The other emotion I felt on his birthday is deep appreciation to his birth mother for choosing us to be Jonah's forever family.   Words really can't describe the gratitude and respect I feel for this woman.  

Of course along with that appreciation and gratitude came sadness on Jonah's birthday.  Because I know how much his birth mom loves him, and I know that on this special day for Jonah, memories and emotions must overwhelm her as she thinks of that day 7 years ago when Jonah was born.  I have said it before but with adoption there is great joy at the expense of great pain.  

So it was a big day for me- fun but filled with lots of emotion.  For Jonah, it was just plain fun!  We had Culvers for his birthday supper, ice cream for his school treat (ice cream is the only sweet Jonah eats), and Grandma and Grandpa came over for the celebration.  He got to open presents and have "Happy Birthday" sung to him.   

Happy 7th Birthday Jonah!

By the way, Ben was very good about the spotlight being on Jonah for the day.  I was proud of him not being jealous.  

1ST DAY OF SCHOOL

Ok, this is probably one of the worst "1st Day of School" photos out there, but I am just happy I remembered to take the photo.  

Usually I am day or week late.      

So this was the best we could do this morning.  

Once again, Ben looks the most happy of the bunch to be going back to school.  

Not sure why our dog is in the picture...

Stephen, senior

Lydia, freshman

Ben and Jonah, 1st grade

Abigail up at college starting her 2nd year

Here's the report on each kiddo's 1st day:

Stephen: fine

Lydia: fine

teenagers don't talk much when asked a question:)

Ben and Jonah: all reports from teachers and aides were that the boys did a good job today. 

I appreciate that Ben's teacher realizes her first priority is to show Ben she is in charge, not him.  

I hope after Ben understands these boundaries, he will relax and enjoy school.   

Jonah marched into school like quite the little pro which he is because he has been going to school since he was 3!  He knows the drill.  Now if he can just keep his impulsiveness in check.  

That is the million dollar question!

Saying a prayer for Day#2.