Our Stay In Holland

Eight years ago (May 6th 2000), Bob and I were anxiously awaiting the birth of our first child. We had such high hopes and dreams for our new little man. We dreamed of the days we would first see him walk, then run while playing soccer or football, watching him graduate from high school, turning into a man, going on to college, marriage, kids.....but God had other plans for our son and for us.

Nathan was born with a rare chromosome disorder - one so rare there is no "syndrome" associated with it. Nathan has profound physical and cognitive disabilities. He is also considered medically fragile because of all of his medical conditions. Nathan was also born with an amazing outlook on life and an insurmountable amount of strength and determination. He is always laughing and smiling. He brings so much joy to our lives and to everyone he meets.

There is a paper titled "Welcome to Holland." It was written by a woman named Emily Perl Kingsley who tries to explain the joys and sorrows of raising a child with special needs. For most families of children with special needs it really strikes a chord.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.


We have learned so much in our eight year stay in Holland. We have meet so many wonderful people - families like us, healthcare providers who do all they can to give Nathan the best quality of life, school personnel (teachers, aides, bus drivers) who have made it their lives mission to educate Nathan and who believe he has the right to learn, and volunteers who give their time to help enrich Nathan's life and ours. We are constantly amazed, humbled and thankful for all these people...it is because of them and their support and time that we have learned to love Holland.

Our stay in Holland has taught us to appreciate the little things. We celebrate all of Nathan's goals and accomplishments because we understand what it takes for him to reach them. Life goes at a lot slower pace here in Holland, but because of it we appreciate every experience we have.

If we hadn't traveled to Holland with Nathan, we would have never truly learned that beauty comes from within and that EVERY person has some purpose in our world. It is because of Nathan that we were able to open our hearts to Addison. If we hadn't gone through the things with Nathan, we would have never entertained the idea of having another child with "special needs."

Being in Holland has also given us the chance to experience true unconditional love. Nathan gives his love freely to everyone he meets. His smile is contagious and his laugh is music to your ears. Nathan doesn't ask for anything in return - he just wants to love and be loved.

We don't know how long our stay in Holland will be. When we first brought Nathan home from the hospital, we didn't think it would be much more than 6 months. Eight years later we are still here and so very thankful for everyday we spend here. We also know in our hearts that there will be a day when we will leave Holland but we pray that we won't have to leave for a long time. In the meantime we will continue to celebrate and enjoy all that Holland has to offer.

Nathan is our hero, our joy and the light of our lives. His strength and determination continues to amazes us everyday. We are so incredibly thankful to have him in our lives. Our hopes and dreams have changed for Nathan, now we just wish for him to happy and healthy. We hope he knows how much we love him and that he brings us such incredible joy.

Happy Birthday Nathan!!! Here's hoping for many more!!!

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This week in our quest to see all the sights here in DC, we went to the National Arboretum. For those who have never heard of an Arboretum (me being one of them) it is a living museum where trees, shrubs, and herbaceous plants are cultivated for scientific and educational purposes. Back in 1946-47 there were over 15,000 azalea bushes planted along a hill in the Arboretum. During the spring the whole side of the hill is ablaze with color. I think we saw the tail end of their blooming cycle and it had rained the night before - but it was still beautiful. They also had a bonsai garden where trees had been in "training" since 1795. Here are some pics:














The really exciting news is that last night Addison slept in her own room for the first time since her surgery in Jan!!! She only cried once and was able to go back to sleep on her own - YEAH!!! We are hoping that she will do the same again tonight.

The Wheels on the Bus

Nathan FINALLY went back to school on Thursday. He had missed three weeks of school because he had been sick. Thankfully he is back to his oldself!

True Colors

Here is a quick recap of Addison's transformation. I am still amazed at the wonderful job Dr. Murthy did. Addison's lip continues to heal and her scar is very minimal.

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Here are a couple of new pics of Addison. These were taken about three weeks after her repair. Everything seems to be falling into place.






Nathan is still sick. We took him back to the pulmonologist yesterday. Right now we think he is retaining a lot of fluid - so he got a lot of lasix to help him pee it off. He is a little better today, but still nowhere close to being back to his oldself. We have an appt. with his cardiologist just to make sure things are still good from the heart stand point.

We think Addison is going to end up being a Dr. or a nurse. She is too cute, she watches us and the nurses take care of Nathan - then she tries to help. At the Dr.'s office yesterday, anytime his pulse oximeter beeped, she ran over to see what it was saying. Then she would put her hand on Nathan's head and rub him. She loves playing with his stethascope and is always wanting to "listen" to people. She is very gentle and loving with everyone.

On Monday we learned that we will be staying here in VA for at least another year. There was a possiblity that we would be moving back to San Antonio, but it didn't work out. We are disappointed because it would have been a good move for Bob and we would have been closer to family. We are also okay with staying here....both Addison and Nathan have some good Drs. and really I wasn't sure I was ready to tackle another move.

Another Update

Addison had her follow up appt. with the surgeon on Thursday. He was very pleased with her repair. I told him that we thought he did an amazing job and he said "Not that I am patting myself on the back, but I too am pleased.? Addison's surgeon is a very caring and humble man, we are all so thankful that he is the one who worked on her. He will continue to follow up with her in the next few months and will probably do a little revision when she turns three. The man issue is that there wasn't enough tissue to plump up her lips so he will fix that the next time around and of course anything else that we aren't happy with. We know that there will be some tweaking that needs to be done, but everyone (including us) that sees her can't believe how good the repair looks.

I would update some photos, but we have all been sick. We caught some sort of respiratory bug. It has hit Nathan pretty hard. He is slowly getting better but he still requires O2, nebs, and lots of other meds. Poor guy has been out of school for almost two weeks and I doubt he will be back before next Wed.

So once we are all well, I will try to get some new pics up.

Spring is in the Air

Spring is all about new beginnings and new awakenings. That is exactly what Addison is experiencing with her new lip/nose. Everyday we are more and more amazed at the transformation of her face. It has been a week since the Dr. did his magic and we are so impressed, we can't begin to imagine how it will look in a month, six months or a year. She is thankfully healing very well, both emotionally and physically. She hasn't had the screaming events at night with this surgery. We think it has a little to do with her being more comfortable in our home. The other great news is that she is making more and more sounds. She mimics a lot of what we say, but still isn't able to enunciate. She has come a long way since she has been here.

I am posting a few pics from the DC Cherry Blossom Festival. They were taken on Sunday. Even since then the swelling on Addison's face has gone down and more goop has come off. We were happy to be able to take my mom, who is here helping out, to see the Blossoms. It has been one thing that she has always wanted to do.

Keep checking back for more pics. We see the surgeon on Friday and we are anxious to see what he has to say.