Saturday, May 25, 2013


I should first say that I intended to post this on the 22nd, for "ask my about 22q" day. But I had a hard time finishing, and kept having to come back. Tonight I was able to finish this post, and with the permission of all people mentioned, I'm sharing something very near and dear to my heart.


Last September Roman had a procedure to repair his sub mucous cleft. It was causing many issues, like aspiration and air escaping through his nose when he would talk, so we were excited to have this finally done. During the surgery the Surgeon decided to also to take out the old set of ear tubes, clean out his teeny tiny canals, and put new tubes in. She informed us, however, that when she went into the ear to do this that she found a large mass behind the drum. She suspected it was a toma, and it had developed from the numerous ear surgeries he had already had. We became even more worried when she said how close it was to the nerve that controls that side of his facial movements, and also that it was weaving between the bones of the inner ear, which removal could cause significant damage and hearing loss.

Roman healed up from his procedure and soon we were facing another one. We first had a CT scan to confirm what exactly it was, and wasn't-  like a tumor, thank God. But it was in fact there, it was large, it needed to come out and it was going to take a very delicate hand to do so. We were grateful that this was found "by accident." Had she not decided to go ahead and put in new tubes, who knows how long till it would've been found. Maybe by then it would've been too late. Our doctor convinced me that it was ok to try to get through the winter's cold season and then schedule the surgery.

That February started a pretty hefty round of doctor appointments for Roman. Follow ups, scans, clearance and so on, to get this show on the road. As we would come and go at our local Children's Hospital, we would try to meet with a friend of ours, Marti, who, unfortunately, was experiencing some extended stays in the same hospital with her son, Lake. Both our boys had a condition called 22q11.2 deletion. While the effects of it on our boys were very different, the kids themselves had a lot of similarities. When I first moved to Georgia and started a face book support group, she was one of the first persons to reach out to me. We instantly hit it off when we found out we were both from Northern Ohio! What are the odds? Soon we met for coffee and had a several hour long talk, and that followed with face book messaging, and then texts. What started as talking about our children's conditions soon turned into conversations about faith, family, God, the "why's" and "why me's" and lots of back and forth encouragement. Me and Roman were able to met up with them after Romans pre-op appt. We walked around the hospital, we prayed for her marriage, for he strength, for her son. Even in the midst of some uncertain and scary times, she encouraged me and spoke life over my situation.

A couple weeks later it was time for Roman's procedure. I was told the plan was to make and incision in the ear drum and then make a skin graft to patch it OR make an incision behind the actual ear and work from there. Both had their risks, and both required a 48 hour stay in the hospital afterwards. As a way to comfort us the surgeon let us know there would be a sensor placed on the nerve that controls facial paralysis, and every time they would come near it an alarm would sound. However, this really did not make me feel better.  She let us know there was a chance of non-permanent facial paralysis that would eventually come back after some therapy. I was starting to slightly panic. She ensured me that she was going to take her time as she unwound the mass around his tiny bones in his ear. We were nervous, but had faith everything was going to be ok. We had prayed that the surgery would go smoothly, that the spirit of the Lord would fill the room, and his hands guide the surgeons. We believed in complete healing through the work of this surgery. We believed we had already received a miracle by the Doctor "mistakenly" finding this mass. They took him back, me and my husband held hands... this was now the 5th time we had handed over our oldest, littlest boy into the hands of mere human beings, practicing medicine, behind closed double doors, without us there.

Upstairs there was another Husband and wife hold tightly to each other. There son was in the cardiac intensive care unit, as doctors scratched their heads about what to do next. From room to room in the Children's Hospital I picture many families locking hands and waiting for their miracle. Some maybe not even sure what to believe, or who to believe in, but I can tell you this, when your child is sick, and you are facing the scariest of situations, you will want to believe in something. I think of the angels among us, walking halls, and standing over babies. Administering protection and sometimes taking children home...

45 minutes later my Husband and I were sitting in the waiting room, poking around at our food, making that small talk we were getting used to making. I thought about Marti, I thought about the other little girl in the support group who was also having a procedure done that day. I tried not to think about a knife on my child's skin. I tried not to think about the risks. I tried not to think about all the Ct scans he would need in the future to make sure the mass doesn't return. Just poking at my food, talking about what a nice day it was....

The front desk notified me that the surgeon was coming out to speak with us. I wasnt sure why, but I thought maybe she was there to tell me which way she decided to operate prior to actually doing it. I watched her come through the double doors, pull her face mask down, her eyes big saucers, throw her hands in the air and LOUDLY exclaiming "TOMA? WHAT TOMA?!"

I think both our mouths hit the floor. I didn't understand. I asked her what she meant, and she just kept rambling about how the body doesn't heal itself of these things, and that, and I quote "ya'll must be livin' right, cause this just does not happen." We didn't say anything. We were just stunned. She said he was coming out soon, she just put some T-tubes in, and he can go home shortly. We were there but a couple hours. I just couldn't believe it. We both acted like we didn't know what to do. We had made so many arrangements for work and babysitting and over night stays but now we were going home!

I hurried back to the post op room and waited for him to roll on in. I sat there, in disbelief just thinking to myself "why?" Yup, "Why?" You see, I had prayed for things to go smoothly, I had prayed for him to heal quickly, what I hadn't prayed for was a miraculous healing, but in spite of me, and how small I sometimes make my God, that is what he decided he was going to do. Of course my heart desired such a thing, but my flesh was just happy to get what I could get.

If I could continue to be even more candid- I think sometimes when you are in a position like us special needs moms, you begin to adapt a mentality of only having so many "miracles"-if you will. When you are faced with the BIG STUFF, that's when you pull out the BIG PRAYERS, THE BIG REQUESTS. But when things seem like you can somehow manage with the outcome, you are more selective with your requests. Maybe you are reading this and you really don't get it. I don't know how else to explain. We had seen God perform some miraculous things, just recently through the birth of our daughter Sophia, and you better believe we were pounding on heavens doors every minute, of every day in the midst of that situation. I guess we forget sometimes that with God, nothings too small or too insignificant to ask for. You might wonder why I would even look at this situation with Roman as "insignificant" but remember, I have a dear friend who's sons life is hanging in the balance just floors above me. Living in situations like these can sometimes blur your idea of what's important to God.

The nurses came in with my sweet boy. The first nurse told me that she just couldn't believe her eyes. That she was in the operating room when the toma was first found. And that they were looking into the ear and then back to CT scan results over and over, in awe. The second nurse said it was "truly a miracle" and started sharing some other testimonies of healing she had witnessed in the past. But that she had never seen a toma remove itself. Soon we went home. Soon we were sitting on the couch, watching TV together, him sleepy due to anesthia, me misty eyed as I kept glancing at our packed bags in the corner.

A week and a half had past. My husband was having a difficult time healing from a procedure he had later in the same week as Roman. He had an abdominal hernia repaired. A couple days later I had to call 911 as he thought maybe he was having a heart attack. Soon we found out he had developed blood clots and they had made it to his lungs. Following a few more days in the hospital he was sent home on more medication, including blood thinners. A couple days after being home he had to be rushed back to the hospital because his liver was shutting down due to the blood thinners. He was again in the hospital for a week. He was finally able to go home on mine and Romans birthday. And is currently doing much better.

Remember the little girl I mentioned who was also having a procedure done the same day as Roman? She too has 22q11.2 deletion, just like Lake and Roman. Her mother had to leave the O.R. with uncertainty as her daughters ear surgery didn't go as well as hoped. Her daughter recently received a hearing aid and hope is now restored.
Its now been a couple weeks since I was sitting on the living room floor folding laundry. I was thinking about Marti and her husband, thinking about Lake, praying for them as I went through the clothes. I was wondering what I could do to cheer there spirits. To make Lake feel special. We belong to a special community of families who rally around each other when we are faced with tough times with our kiddos. So I thought to make a card drive for Lake. I text Marti to check in, and to see if this would be ok.

Everything was set up, and in true fashion, this beautiful community willing joined in. Lake was gearing up for another heart procedure. He had already received a pace maker to regulate his heart rhythm. It hadn't been working as they had hoped for and now they were going to try to something different.
I text Marti to see how he was doing.

Lake passed away soon after that procedure. His family was able to be around his bed, able to say goodbye.

I am having trouble right now just typing and trying to form words. As a mother of a child who had the same genetic disorder, I felt fear that I cant quite form into words. As just one mother to another I felt a tremendous burden to intercede on her behalf. As a believer, I questioned God and His ways. As a friend I felt utterly helpless.

A few days later a few of us from the support group gathered at Lakes viewing. My heart ached in a way that I have never felt before. I couldn't help but think of the weeks prior. The prayers that had been prayed. The things that had been questioned. Why God made moves the way he did. Why healing doesn't always come as we had prayed.

But knowing that it does always come.

He is the author and the finisher. I don't understand why he does what he does. Its clear His ways are higher than my ways. I know that healing can manifest in a multitude of ways. Through the use of a surgeons hands, through the work of a device, after a period of touch and go, and yes, even through death.

I'm not sure how to end this post. My heart is still very heavy.  I rejoice there is a child who HAS BEEN HEALED, who has been made new, with a perfect body, inside it- a PERFECT heart, running through the streets of heaven, and resting in the arms of Jesus. My heart hurts that a family is left behind picking up the pieces.

Why God choses to heal the way he does...
Why he allows the pain that he does...
Why in this life are their families who struggle, suffer and worry... daily...

I don't know. I guess I will have to ask him when I get there.

Monday, May 20, 2013

Regular Moms VS Special Needs Moms

Regular Moms VS Special Needs Moms 
Written by: Dawn Villarreal

Regular moms tell their kids to wake up and get dressed in the morning.  And they do it.
Special needs moms put on battle gear to get our kids ready to start their day.

Regular moms ask their kids if they brushed their teeth.  
Special needs moms prompt, “Brush your top teeth.  Brush your bottom teeth.  Did you get the sides?  Open your mouth.  My God, give me that toothbrush!  You’ve left half your meal in there!”

Regular moms wave goodbye as their kids run off to catch the school bus.
Special needs moms get awesome door-to-door bus service for their child.

Regular moms know the names of all their friends.
Special needs moms know most of their friends by their username.

Regular moms complain about driving their kids to sports and recreation classes.
Special needs mom grin and bear the weekly trips to tutors, doctors and therapists.

Regular moms’ kids have a teacher.
Special needs moms’ kids have a team.

Regular moms talk about accomplishments.
Special needs moms talk about skills, as in play skills, conversation skills, life skills, social skills and vocational skills.

Regular moms relax with their kids during the summer.
Special needs moms start their second job as home teachers, therapists and skills coaches.

Regular moms think accommodations refer to hotels.
Special needs moms have memorized the top 20 accommodations for their child.

Regular moms hope their child finds a good career.
Special needs moms are hopeful someone gives our child the chance to work.

Regular moms soak in the tub when they want to unwind.
Special needs moms consider a bathroom break a luxury.

Regular moms enjoy reading the latest best selling book.
Special needs moms should receive an honorary degree for all the disability books they've read.

Regular moms go out for dinner and a movie with their husbands every month.
Special needs moms have a date night with their husbands every…wait, what decade is this?

Regular moms complain their kids won’t eat their vegetables.
Special needs moms are so desperate we consider chicken nuggets to be a legitimate meat product and throw in ketchup as a vegetable.

Regular moms’ kids go to play groups.
Special needs moms’ kids go to therapy groups.

Regular moms meet for a ladies night out.
Special needs moms get together at support groups and forums

Regular moms have medical claim forms that fit in one file folder.
Special needs moms will tell you a small forest was cut down so we could receive our claims.

Regular moms think OT means overtime.
Special needs moms know more acronyms than a NASA engineer.

Regular moms have time to cook a full dinner every evening.
Special needs moms will never admit how many times we've picked up fast food.

Regular moms complain their husbands sit on the couch and watch TV while they do all the work.
Special needs moms...well how about that?  Some things do stay the same!
(Just kidding dads, we know you do your part!)

Regular moms worry about fat and sugar in their children's diets.
Special needs moms worry about gluten, casein, oxalates and have a working knowledge of (FDA approved) food additives.

Regular moms spend a week teaching their sons to pee in the potty and maybe a month teaching them to poop.
Special needs moms keep trying, sometimes for several years.

Regular moms volunteer in the classroom to help out.
Special needs moms volunteer so they can take notes on whether the school program is appropriate for their child.

Regular moms look forward to an "empty nest."
Special needs moms wonder who will take care of their kids after they're gone.

Regular moms have the numbers of their friends programmed into their cell phones.
Special needs moms have the numbers of their child's specialists programmed in theirs.

Regular moms’ kids are mildly afraid of the dentist.
Special needs moms’ kids are so terrified, 9 out of 10 dentists will ask them not to come back.

Regular moms can plan a simple vacation at the spur of the moment.
Special needs moms have to plan vacations months in advance to make sure that appropriate accommodations can be made for their child.

Regular moms sign their kids up for all kinds of extra-curricular activities.
Special needs moms hope their local park district will accept their child for an activity.

Regular moms get annoyed when their child won't stop talking.
Special needs moms would do anything to hear their child utter one word, 'Mom'.

Regular moms get to go on vacations during long weekends or when school is out.
Special needs moms vacation...well you KNOW we don't do that.

Regular moms are obligated to go to every family gathering and stay to the bitter end.
Special needs moms has a built in "get out of jail" card for these events. e.g. "Whoops! Gotta go! Wouldn't want Junior to go on sensory overload."

Regular moms send Christmas cards to their friends and family.
Special needs moms send Christmas cards to friends, family AND the medical team and specialists that helps take care of their child.

Regular moms show up to their kids' activities and watch from the sidelines.
Special needs moms get to work prompting and herding their child in each activity.

Regular moms think OT stands for over time.
Special needs moms hear OT and think occupational therapy.

Regular moms worry about their child being picked on in school.
Special needs moms know their child will be discriminated against for their entire lives.

Regular moms tell their child to get dressed.
Special needs moms have to dress their child multiple times before leaving.

Regular moms fight with their child to pick which clothes to wear.
Special needs moms fight with their child to try to keep any clothes on all day.

Regular moms are on a first name basis with other moms in their neighborhood.
Special needs moms are on a first name basis with their child's pediatrician, neurosurgeon, gastroenterologist and other specialists.

Regular moms hope they have enough food, goodies, etc. at their children's party.
Special needs moms hope that other children/adults will show up.

Regular moms occasionally worry about one or two allergies.
Special needs moms have memorized the top 75 allergens, preservatives, chemical additives and toxins.

Regular moms worry about spoiling their kids with too many toys.
Special needs moms will buy half the store if there's a chance something will get their child playing instead of stimming.

Regular moms' stress levels raise from a 3 to a 10 if their child needs stitches or tubes in their ears.
Special needs moms' daily stress levels are already at an 8 so stitches or tubes in ears can actually be a step down from the day to day stresses.

Regular moms think PT means part-time.
Special needs moms hear PT and think physical therapy.

Regular moms forward funny mom e-mails to each other.
Special needs moms can only send this list to other special needs moms--regular moms would be offended if we suggest they don't understand what we deal with everyday.

Thursday, May 16, 2013

Chocolate Milk Mix

No more chocolate syrup yuck...

1 part sugar (or sugar substitute, I used truvia)
3 part cocoa powder (I used nestle 100%)

For each cup of milk you only need 1 Tsp!

Italian Seasoning & Dressing

I have been making my own seasoning and italian dressing for a while now. I love the fact that I can use the dry mix to season chicken, potatoes 
(anything really) 
and also have dressing made to my own taste sitting in the fridge 
(good for 2 months!) 
To make your own italian dressing:
 whisk together 
1/4 cup of white vinegar, 2/3 cup oil (canola or olive oil),
2 Tbsp of water and 2-3 Tbsp of dry mix
If you're anything like me, then you're more than eager to use your homemade stuff as soon as possible. You don't wanna just look at it in the fridge, do you?

Heres links to some of my favorite recipes that you can use your seasoning/dressing! Enjoy!

The options are endless! :)

Saturday, May 11, 2013

The Georgia Aquarium

Waiting for the show to begin!
The Georgia Aquarium houses 120,000 animals, representing 500 species, in 8.5 million US gallons of marine and fresh water; it was the world's largest aquarium when it opened in 2005.
Daddy and Roman 2008
My boys!

The stage for "Dolphin Tale"
What was suppose to be a trip to the childrens museum, turned into an impromptu trip to the aquarium. We were headed for a free target tuesday at the museum, but because it was spring break, there was an actual line around the block to get in! Panic set in as Roman realized we might not go to the museum, so we crossed the street and headed to the aquarium  The last time we were here was back in 2008, while I was pregnant with noah, just a few short later we were back, with 3 more! WEIRD! Also, the last time we were there was while we were visiting my husbands family, but this time we were actually living here as well. So strange how things can change so much in such a short amount of time!

The Georgia Aquarium
One of the stars of "Dolphin Tale!" 
225 Baker Street NW
Atlanta, GA 30313
Beluga whales

We started our day at a new show called "Dolphin Tale." It was very cute, but I did kinda wish it had more dolphin/audiance interaction. For the really little crowd, it kinda drug on with a little too much dialog. When the dolphins did come out and do their tricks durring the musical numbers Noah found it to be quite hysterical. It was sweet to watch! There were some tears shed when the house lights would go dark during the "stormy" scenes. But they were quick to recover :)
After exiting the show you come into the main floor of the aquirium. There are different areas sectioned off by theme. There is also an interactive play yard for the kids where you can even pet stingrays :) 
Noah and Sea Otters
Watching them take penguin vitals
Walking through the tank

One of the highlights of the visit was the large aquarium that has a long tube that runs through the center. As you look up you see over a thousand different underwater species swimming over your head. There is a conveyor belt you can stand on as it slowly guides you through so you can take it all in. Its pretty cool!
3 amigos

Admiring the sea life
 My personal favorite part is the observation area, where there is a stadium style seating and an aquarium that goes from wall to wall, floor to ceiling. You instantly feel 2 feet tall as you just gaze into the water. From the seating area you can sit there for quite some time and just watch all the animals swimming around as majestic music plays overhead. Sting rays, whales, sharks, and thousands of fish, swimming in schools, it really is beautiful.
Look, a shark!
up close 
They Look so small compared to the tank!
Roman, Lydia and a Tuna!

Noah and some tropical fish
My family, minus 1 
Theres another part of the aquarium where they have the same type of set up as the observation tank, just on a smaller scale. Because these fish are all tropical, they are bright in color and most small in size. Noah and Lydia seemed to like this themed aquarium as these fish were quick moving, zipping all over the tank...
So colorful

My boys!
Small, medium, large
What a fun day!
We will be back again, maybe in a couple years when the littler ones grow up a bit more. Tickets are pricey in my opinion, but I do see specials on groupon during the colder months. I would make this one of my top spots to check out when visiting Atlanta, even if you don't have children. Fun for any aged animal lover!
Time to go home!