This morning I wanted to share a story, written by a far superb writer  than I. I was first introduced to this story, Welcome to Holland, when I was in college, studying Special Education. It touched my heart then, but holds a stronger meaning now.

Often times, people ask what our lives are like, what we go through, and it’s hard to adequately put into words.  I’m grateful that Emily Perl Kingsley already did.


by Emily Perl Kingsley

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 out 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….and 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 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.


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Wait?! We have a blog still?!

Whaaaat?! Obviously it’s been awhile since we’ve written anything for many reasons. Like we’re crazy-busy. We have 2 kids now. Eli’s had some health issues and started preschool. And, you know, life and stuff.

Since we’ve last updated, we had a baby boy, named Isaac Samuel Aquila. He’s just awesome. He’s a chunky tub of fun and is perfectly healthy. We couldn’t be more in love. Isaac is obsessed with Eli, who is warming up to being a big brother.


At the end of January and beginning of February, Eli had some scary health stuff going on. He’d been fighting continual sinus infections since September, requiring 5 rounds of antibiotics. Unfortunately he was unable to fight off the infections, resulting in some fever spikes, which caused seizures. Eli had quite a lot of drop (or atonic) seizures followed by a three minute myoclonic seizure, causing us to call 911. After a few hours in the ER, we were admitted to the Peds floor for testing and observation. Later that week we were discharged with new seizure meds and a new normal, only to return to the hospital via ambulance a few day later, after 22 drop seizures in 15 minutes. His oxygen levels kept going into Destat (dropping without being able to return to normal levels independently), raising more concern. After lots of doctor consults and a complete lack of sleep, it was determined that Eli had obstructed sleep apnea caused by enlarged tonsils and adenoids. While we visited the idea of removing these bad boys in early January, the ENT wanted to wait until Eli was healthy, but as it turns out, the tonsils and adenoids were a big part of Eli’s health issues since they decreased the mucus draining (just gross), causing the sinus infections, which caused the fevers, which brought on the seizures. 😳


Still with me?! Luckily Eli was able to have his tonsils and adenoids removed. He hasn’t had a seizure or fever since. And other than a cold (thanks preschool 😜), he’s been on the mend.

What’s  weird for me (and likely for J) is that in the heat of it all, I can hang. I’m able to put most of my emotions and my junk aside so I can do whatever it takes to do what is best for Eli. I communicate easily with the medical team, advocate to the point of obnoxiousness for E, and be completely present and functional on little to no sleep. Whatever it takes to make him healthy again – to bring back my sweet, happy boy. For me, when everything slows down and we resume whatever our current normal is, I have to actually deal with the stress and emotions of everything, and if I’m honest, I hate that. I’d rather lock the emotional hard stuff away and carry on with regular life. But that doesn’t ever work, does it? Angelman Syndrome can be tough on a daily basis. Don’t get me wrong, I absolutely love my son, but our life isn’t always easy.  It’s difficult to relate to others, or have people identify with our situation. We are exhausted. There are struggles and insane fears that constantly loom. However, there is also a constant presence of God. He shows up in amazing and unexpected ways. We know we aren’t alone in the wilderness. He has not forgotten or abandoned us. And, most reassuring of all, He trusts us to do this specific work.

God is good, friends. All the time.



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Let’s Catch Up

I’ve been planning this post for a while now, but just found the time to sit down and unload a bit. Since the last time we posted, our lives have changed quite a bit. We found out in early April that our son has Angelman’s Syndrome, a neuro-genetic disorder that involves developmental and speech delays, an unusually happy demeanor, and other possible issues.  It’s taken quite some time to wrap my head around this diagnosis and what it means for our sweet boy and our family, along with acknowledging that our dreams and plans for the future will most likely be significantly altered. It’s been overwhelming and difficult at times for us, to say the least. On top this diagnosis, Eli had the flu in early April, causing great dehydration that required hospitalization and ultimately a surgery placing a G-tube, which ensures that Eli gets the nutrition he needs in order to grow. It’s been a busy, chaotic and stressful time.

We’ve had many friends inquire about what’s next for us or what they can do to help.  Here’s a list (I like lists!) of our current status.

  • We’re following God and believe in His plan for our lives. We completely believe that God’s hand is on us, and we’ve been praying and will continue to pray and trust God, after all He trusted us with Eli. As scary as things have been lately, I’ve found myself praying more and more. I remind myself that worrying is the opposite of faith. Worrying means that I’m failing to believe that God is bigger than the problems I face, when I believe the exact opposite.
  • Eli is our son and we love him unconditionally. His diagnosis changes nothing.
  • We’re leaning on our family and friends. We have amazing people in our lives who have been a part of this journey. We need to continue with life as normally as possible and our family and friends allow us to do that.  We will not be hiding from our lives and the things God has planned.
  • We are not Eli’s diagnosis. Eli is not his diagnosis. We will not limit our son or believe he is incapable of great things. We ask you to do the same. We plan to challenge Eli as any other parents would with their children.
  • We are blessed.  While we’ve had some struggles so far this year, we find great joy in our son.  He is amazing and will continue to be amazing.

What can you do to help?

  • Pray. Pray for Eli’s health. Pray for Eli to be seizure-free (seizures are a common characteristic for Angelman’s). Pray for strength for J and me. Pray for the doctors, caretakers and for our families. Pray for peace in our hearts.
  • If we’re friends already, continue to include us in your lives and the lives of your children.  If we’re not friends, try not be creepy…just saying🙂
  • Ask us how we’re doing, but understand we might not feel like talking about it.  We’d appreciate time to just be ourselves.
  • Try not to research things for us.  We have amazing doctors on Eli’s team.  We’re trusting them.  If you can’t help yourself, please only read information from  http://www.angelman.org/ and http://www.mayoclinic.org .  These two sites have the most correct and up-to-date information (as communicated by our doctors).  Understand that Angelman’s Syndrome presents differently in each child and involves a spectrum of abilities and issues, as well.

As usual, God is good.

All of the time.

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Our Story: A Year Later

imageThis time last year, we began our adventure in adoption. After quite a few months of grieving and struggling through our fertility issues, we decided to meet with a great friend, Helen, to just learn a bit from her adoption, but also to gain more knowledge of the adoption process as a whole. I was incredibly intimidated by the whole thing; however, after 3 1/2 hour breakfast followed by 1/2 hour coffee, I felt like I was being nudged along a new path, a very different path than I planned and dreamed of. J and I started praying through the idea that adoption was God’s plan for our lives. The more we prayed and sought advice from family and friends, the more we felt that this was His plan for us. The ironic thing about our journey is that we tried to have a family for 3 1/2 years, constantly praying to become pregnant, but once we changed our prayer for God’s will to happen, things started happening quickly and easily…like really fast!

imageWhich brings us to today… This has quite possibly been the best and quickest year of my life.  Sure, there have been moments of struggle but they are abundantly outweighed by extreme joy. Eli is a super-happy baby and he simply makes our lives better. J and I are constantly reflecting on how amazing it is to experience things with Eli for the first time.  Watching Eli witness the beauty of his first snowfall or watching him delight in the wind makes me marvel at things I’ve taken for granted for quite some time.  It also makes me realize how life flies by. I’m really trying to slow down and revel in each moment I’m blessed with.

imageMy heart is full, friends. God is good. All the time.

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Elihu James Aquila


Our Boy

So…obviously it’s been awhile since we last posted, since which our lives have drastically changed!  We brought home our son in early March and have filled all of our time to bonding with him.  He is thriving and gaining weight like a champ, much to the relief of his slightly anxious parents.  His pediatrician is happy with his weight gain and developmental progress since he’s come home.  Currently, we fill our days with his feeding schedule, playtime, and of course, sleeping!  He’s adjusted nicely to his schedule, mostly due to the wonderful NICU staff at North Oaks Hospital, where he spend his first 7 weeks of life.  Eli’s been through a lot and is an amazingly strong fighter with a great spirit.  We’ve been so blessed by family and friends, who’ve provided meals, gifts and endless prayers and support.  We are completely in love.  God is so good.


Eli’s first week home


Eli today, loving his time swing!

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What My Prayers Sound Like …

image“He’s My Son” : by Mark Schultz

I’m down on my knees again tonight
I’m hoping this prayer will turn out right
See there is a boy that needs Your help
I’ve done all that I can do myself
His mother is tired
I’m sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he’s not just anyone
He’s my son

Sometimes late at night I watch him sleep
I dream of the boy he’d like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He’s so tired and he’s scared
Let him know that You’re there

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he’s not just anyone
He’s my son

Can you hear me? Can You see him?
Please don’t leave him
He’s my son

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Back Home, but without Eli … For Now.

imageFrom J …

So after a few days of being in Louisiana, we have decided to head home, and unfortunately without our son. “How can this be?” … You might be asking us. Well, the bad news is that Eli, although healthy and doing well, is simply not ready to be home with us. Although Eli is gaining weight, and looks rather handsome, his doctors think that he needs to progress more in his ability to self-sooth, develop a more consistent sleep pattern, and feeding abilities.

The crazy part about Eli’s short history on this planet is that he was doing great when he was first born. He was sleeping well, eating well, and quite calm. But some things have changed over the last couple weeks. Unfortunately for Angie and I, it took us going down to Louisiana to receive a more clear picture of Eli’s progress within the NICU. Because we are not his birth parents, we were only given limited information, regarding his stay in the hospital, from the paralegal we are working with. Now, let me be clear, she gave us all the information she had available, and never withheld the good or the bad. We just did not get a full picture until we were introduced to his caregivers, because we were not entitled to his complete care information.

Basically, we visited Louisiana without knowing a true end date on Eli’s release. We left yesterday, obviously upset Eli was not heading home with us. But about half way home, both Angie and I were more at peace with our decision, knowing he was in the best place he needed to be, at this moment. Eli has some more progress to make, and is safely held in God’s loving hands, and in the capable care of his loving nurses. Moving forward, we basically have all access to his care, and are being treated by the staff as his parents … Because that’s exactly what we are, and we could not be more excited to eventually have him home, in our arms.

From Angie …

Anticipation is a funny and interesting concept to me. Often times, my anticipation of events or situations results in increased anxiety and sometimes in disappointments. The anticipation of meeting our son, Elihu James (pronounced Eli-hue), included a lot of angst about my ability to connect or bond with him. I believed that God provided this child for us, and that this was all apart of His plan for our lives, but generally, I am not the most maternal person. I have always felt rather awkward holding babies and engaging in baby talk has never really been natural for me. I was nervous that the nurse would hand me my baby and I would be a mess instead of a mommy, but God intended for Eli to be mine all along and squashed these nervous feelings and wonderings immediately.

As J mentioned, we are now at home in Indiana, and Eli is still in Louisiana. While this was extremely difficult for the both of us to acknowledge, Eli requires further time in the NICU before coming home. We are hoping and praying that, through the amazing nurses’ and doctors’ interventions and treatments that he will be ready to be discharged in the coming weeks.

We are beyond grateful for the nurses who are lovingly treating for our son. One nurse, Rachelle, has loved on Eli from the moment he was born. She is kind and concise in communicating with J and I. She told me that it was easier to let her baby boy go, knowing that he was going home with a good family. Rachel shared that when Eli fusses, she always sings to him. Dawn, Debbie and Janelle all bring in their personal CDs to play for Eli while he sleeps. These nurses told us that Eli prefers a wide selection of music to sooth him to sleep, and will become fussy when the music becomes redundant. Debbie taught me how to properly burp my baby, and giggled when she said, “You’re not gonna break him!” in her sweet southern drawl. Maricia gently explained the ins and outs of the NICU and the life and cultures of New Orleans, her hometown. The social worker, Linda and nurse Janelle, held me as I said goodbye to my son and promised to take good care of him so that I could bring him home soon. I will be forever indebted to these amazing, skillful women and am blessed that they are loving treating my sweet son.

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