Day 1: Isaac's Love Day and prayers for Baby Simon

Last May was a very difficult month and I relied on the love of my family and friends for strength and hope. When I had hit a low, my mom and mother in law, helped me up. My mother in law thought of the idea on May 25th to declare it as "Isaac's Love Day." We all asked for prayers, love and thoughts of healing to be sent to Isaac. It was powerful for me to read and hear everyone's outpouring of love for my Isaac. There was so much love surrounding him and I can tell that love continues.

Today is our first day of prayers. Today I pray for Isaac and another special little boy named Simon.

I pray that Isaac always feel love around him. I pray he has strength and courage to fight challenges in his everyday life and during surgeries. I pray he is always happy. I pray for miracles of healing upon his body, especially his spinal cord, ventricles, bladder and bowels. I pray for miracles that with God's Will, He will make it possible that one day, Isaac's legs will move and walk.

Yesterday, one of my closest friends emailed me about an adorable new little baby boy named Simon. He is the son of her sorority sister. Baby Simon was born with Esophageal Atresia. This means his esophagus did not form properly. He is currently in the NICU and will be having surgery today. I pray for healing for Simon and for a successful surgery. I pray he will soon be able to go home from the hospital. I pray for his parents, Molly and Clint.

Check out this sweet little boy at
http://babysimon2012.blogspot.com/

30 days of prayer

Every night I nurse Isaac to sleep in his quiet room. The sound of his lullaby music is so relaxing. I love that time in my day. It is sacred. It is my time to relax, pray and catch upon reading favorite blogs.

I have never been much of a blog reader, but since Isaac was born, I have become more interested in keeping up with blogs. I read about all of Isaac's little friends. It is nice to know that one day, Isaac might meet some of those little friends. He will know that there are others that truly know what he is going through. He has already met one of those little friends, Trennor. I was so happy for him to meet Trennor, but more so, I was happy that I got to meet Trennor's mom, Megan. Talking with her helped me to know that I had someone that truly could relate to the challenges, joys, fears and hopes that I have as a mother in this journey.

Before Isaac was born, I heard about rare conditions and diseases, but I never realized the impact they may have on a family, both good and bad. We are impacted by his OEIS. It has it's challenges and worries for sure, but it also has it's blessings. We have gotten to know many great people, doctors, therapists. Since Isaac's birth, I have become more aware of other situations where people are in need of prayer, support and love for the challenges their children or loved ones face. I don't want to say before I had Isaac that I overlooked or didn't pray for someone that needed it. I truly felt for families but I couldn't fathom what they were going through and I didn't want to fathom that. It made me hurt to think about what they were going through. My busy life would continue and I forgot about the needs of others. Today, when I hear or read about someone asking for prayers for their children they love, I get it. Or at least I get it a little better. I understand their desperation and hope. I had never asked for prayers for myself before I found out about Isaac's diagnosis, but once I heard, I begged everyone I knew to pray for him. It was the only way I could hold onto hope. Now, when I hear about someone, particularly children that are going through a difficult diagnosis it catches my attention. I want to read about them. I want to learn more. I want to help them. I want to pray for them. Now, I remember those children and I remember to check back and read their blogs or ask their parents to see how they are doing. I check back because I want to know that their journeys are going well. I want to witness miracles.

Prayer is powerful.

Positive thoughts make positive impacts.

So, starting May 25th, for 30 days, I will be having 30 days of prayer here on Isaac's Inspiration. Each day I will share with you a child or family that could use a few extra prayers. It doesn't have to be long or time consuming, but that one little thought or prayer you send may just may a huge impact for someone that needs it. I have not met most of these children, but I have come across their story and all of their stories touch my heart.

If you know a child or family in need of prayer, please send me an email @ hinkel.jill@gmail.com. I am compiling my list now!

Happy Son's Day

Today we celebrated Mother's Day at my parents house. It was nice to be home with my mom, my grandma, my dad, Dan and my two little boys. Today when I woke up, Gabe (Isaac's big brother) greeted me by telling me, "Dear Mommy. You are my mommy." It was better than any Mother's Day wish he could have given me. I thought about those words today. Yep, I am Gabe's mommy. And I am Isaac's mommy. I have two beautiful son's and I am so lucky. Last Mother's Day was pretty awful. We didn't really know what was going on with Isaac's diagnosis or prognosis and we didn't know if he would be here. I remember numbingly eating a nice brunch at a local restaurant near our house but all I could think about was the fear I had for my son's future. To say this Mother's Day was better than last year's is an understatement. Today I was full of gratitude and I tell my sons, "Dear Gabe and Isaac. You are my sons, Happy Son's day."

Personality

Isaac is now 10 months old and his little personality is blossoming!

He is finally getting some teeth and he has started to show his desire for independence. In the last week, Isaac has slowly popped through 3 teeth! I should mention that these are his first three teeth and it has been unpleasant for him and us all. Last weekend, we went to Grammy and Papa's in Cincinnati and watched Daddy play basketball in his high school alumni tournament. (Which I have to say, it felt so nice to go to Cincinnati and have no medical appointments to go to!). We had a great time, and Isaac was cute, but his teeth got the best of him and he only wanted to be in my arms.... for most of the day, and well, ALL night. For three nights in a row, Isaac would only sleep if he was in my arms. And to boot, he preferred if this was nursing in my arms, ALL night. In hindsight I think the poor kid may have been getting teeth and having a growth spurt! We had fun playing at Grammy and Papa's and Isaac showed off his new wheels. He is obviously so little and still learning and understanding what his chair is, but his showed off for Papa and he actually moved his chair about an inch on his own! Our little Bugaboo will get the hang of it before we know it!

Isaac has always really seemed to like his food but he has been quite vocal lately about his food likes and dislikes. It worries me a little bit, but I think he has decided that it's not the food he doesn't like... it's that he doesn't want anyone feeding him! Mr. Independent! He doesn't want pureed baby foods. He wants big people food and he wants to feed himself! Yesterday, he started turning his head away from his baby food and whining until I gave him something like cheerios, blueberries or the tasty little Baby Mum Mum rice cake things. Basically, he wanted anything he could pick up himself. The other day, he totally whined when I handed him cheerios, but when I gave him some baby puffs he picked those out of the pile of cheerios....perhaps the start of a sweet tooth. I am figuring out new things that he can try and slowly introducing more foods.

Isaac really loves to play. He will belly laugh when he watches Gabe run around him and gets angry when he is by himself. The other day I ran upstairs to get something and when I came down Gabe was pushing Isaac in his ZipZac Chair around the house, pretty fast. I was worried that Isaac was upset, but when I looked, he was actually giggling away. Most of the time now, he loves this new game with Gabe.

He also loves doing anything Gabe does, like riding in the monster size shopping carts at Target.

Isaac has recently learned how to play "pass". He sits at his little desk and will roll the ball back and forth with us. Here's his little head peering over the ball!

Isaac enjoys reading his little book.....

He says yes to swinging...

and is undecided about slides.

It's really fun to see him grow into his own little being. Before Isaac was born my doctor shared this simple wisdom, "Isaac will be Isaac." At the time, it didn't bring me much comfort. It was easy to say, but what did that mean? Well, now I know. Isaac is Isaac and I love that he is!

Rockin and Rollin

The big day arrived.... Isaac's first wheelchair came!



After a visit at my parents house, the boys and I arrived home to Isaac's brand new ZipZac Chair*. We waited until Dan got home from work for Isaac's big inauguration of his first chair. I thought about this day for a long time. Three months ago, I am sure I would have been very sad about seeing him in a wheelchair. I would have felt like I was giving up on his mobility. Well, this day arrived and I have to admit, I did get pretty choked up just thinking about Isaac in his chair. But, I wasn't choked up because he was going in a wheelchair. I was choked up because this was his "step" to mobility. His step to independence. A sign he was moving farther away from babyhood and closer to toddlerhood. I felt the same way when Gabe took his first wobbly steps. Isaac was on his way to taking his "first steps". He might be rollin instead of steppin, but this chair is Isaac's way of moving and I felt nothing but pride and hope for him. Regardless of how he gets around, Isaac is going to rock it!



Big brother Gabe was just as excited as Mommy and Daddy about Isaac's chair. His immediate respose was, "now Isaac can chase me!" Gabe did his "ready, set, go!" chant for the big race that he must have envisioned he and Isaac doing the moment Isaac got in his chair.



When Isaac didn't quite get the chase game, Gabe immediately took the wheel for his little brother and pushed him around. Isaac seemed to enjoy this ride until big brother tried a faster push and let Isaac fly solo. I am sure before we know it, Isaac really will be chasing Gabe and rollin faster than we know!




* for more information about ZipZac chairs please visit, www.myzipzac.com

My Beautiful Holland

For any parent that has a child with special needs, I am sure you have heard the poem, "Welcome to Holland", by Emily Perl Kingsley.

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 Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several 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 guidebooks. 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. You begin to notice that Holland has windmills. Holland has tulips. And 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 experience will never, ever, ever, go away. 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.



Exactly one year ago today, I heard the pilot tell me I would not be going to Italy. Rather, I heard, "your flight will be landing in Holland." One year ago today, my smooth sailing flight to Italy turbulently rocked. It jolted my heart through miles of tears and unimaginable pain until that fateful June night when I finally stepped off my jet plane and saw my Holland. My BEAUTIFUL Holland.




After 1 year of being in Holland, learning the language and admiring the culture of Holland, I can honestly say, I can't imagine being in Italy. I am in Holland and it is beautiful. It doesn't take away the pain of the experience. One year ago today, my world as I knew it would never be the same. My heart broke and my dreams had to change. I was right, my world isn't the same....I have been through more pain than I could have imagined, but I have grown. I have gotten stronger. I have more love in my heart than I thought I could have. Holland is beautiful. Now I know I was always meant to be in Holland. This was where I was meant to go.

This is what I see in my beautiful Holland.

Smiles. Smiles beyond belief. They may be toothless, but I have never seen such a smiley baby.

Laughter. I knew Isaac would bring laughter to this world. After all, his name means laughter. Not only does he bring laughter, his laughter is contagious.

Courage. Courage to look to the future and only looking with positive eyes. Nothing will stop him.

Strength. I have had one surgery in my whole life and that was to safely deliver Isaac. It was scary, but I got through it and came out stronger. Isaac has been through two major surgeries in his short little life and not only comes out stronger, but makes others stronger too.

Hope. He makes me dig deep into the depths of my soul and live in a state of constant hope and in constant belief in miracles.

Faith. Isaac helps me understand sacrifice. He brings me closer to God and opens my eyes to the secret of life. If I could heal Isaac, I would in an instant, but I know the only way I can help is by prayer and belief. Isaac comes to us exactly the way he is for a great purpose; I am sure of that.

Love. Just love. It's that simple. If the world just loved, imagine how beautiful this world would be.



Yes, My Holland is Beautiful.

The village of rockstars

(Isaac says, "I love watching Buckeye Basketball!")

"It takes a village to raise a child"

I never quite realized the impact of that little saying until this year. And we have a village. Actually, we have quite a village of rockstars that is, helping us raise our little guys. Anytime we have a big appointment or surgery our family and friends step up and help us. They are sure that Gabe has a place to stay and they give him fun activities to keep him busy and keep his mind off mommy and daddy being away. We know he is well cared for and that gives us tremendous comfort. We have awesome doctors caring for Isaac. Not only are they ridiculously good at medicine, they also have Isaac's best interest in mind. They see his quirks and his talents. They are part of our rock star villagers and I am glad we found. Even if we have to drive 2 hours to get to them. And of course I MUST take note of all of the "behind the scenes" workers that are prayer warriors for our little Isaac and our whole family. I want you to know that all of your prayers, positive thoughts and loving energy vibes towards Isaac are truly having a positive impact on our little guy! He is a tough little man, but you warriors, well, you warriors are making him even stronger. His appointment last Friday was very long, but it went very well! We were really happy with what we heard. Here's a summary...

Isaac had another MRI which he was awake for this time. He did really quite well during it. He fussed a little being strapped down, but luckily it was quick. After this, we met with Isaac's neurosurgeon. He compared this MRI to his scan in January and we have great news. The scans looked the same! This means that his ventricles are stable! Isaac's ventricles are still large but they haven't gotten bigger! (What did I tell you, villagers?!) This does not mean he is completely in the clear for a shunt, but it does mean that right now he doesn't need one. We can continue to hope and pray that he won't need on in the future. We will go back in three months for another MRI to continue to monitor his head. We also got a prescription for his first wheelchair (the zipzac chair). This chair is so great and it will be so wonderful for Isaac to be able to get the hang of moving around by himself; something he is so ready to do. Check out the chair www.myzipzac.com

We also met with his colorectal doctor who was happy with his progress. There is not a lot of news on that front except for I think he is also the baby whisperer. After being woken up from his short and only nap of the day, Isaac was needless to say, pretty fussy. His doctor lifted him up and talked so sweet with him while Isaac played with his name badge. Isaac enjoyed "chatting" with his doctor.

And finally we met with the ortho doctor and urologist who are planning his next big surgery to place his bladder inside and do his pelvic oestomies. This is going to be a big and long surgery and will involve three surgeons so it is still in the works to find a date. His urologist would like him to be at least a year old and at least 20 pounds. It looks like it will be sometime this summer or the coming fall. We should hear back in a few weeks with a date. We are hoping it will be sooner than later.

Villagers, I just can't thank you enough. For the days that I am weary, I have comfort in knowing that all of our rock star villagers are silent warriors praying for Isaac. I am humbled by everyone's support. Rock stars, you are helping Isaac continue to rock on!