Does She Miss Me?

Earlier this week, Justine was on her mat in the basement playing with her favorite toys – markers.  We have this box of markers that she just tears into when she gets a chance,  grabbing handfuls and tossing them aside and then grabbing more.  I love it when she picks up a new skill and runs with it.  This past year she started sitting on her own, and now she can sit on her own and interact with things that are around her.  It is easy to see the gross and fine motor gains, but I often wonder where she is emotionally and psychologically.  There is no easy way to measure how mature she is at this point, especially since she is non-verbal.  I have pushed aside my dreams of hearing her say “I love you, daddy” for now.  If we can get her to say a single word with some regularity, I would be ecstatic.  What I truly want is for her to understand who we are.  Because she cannot call me “dad”, I sometimes struggle with the thought that she doesn’t know who I am. And if she doesn’t know who I am, does she miss me when I am gone?

Gift from Justine

I honestly do not know.  The usual thing people say to me is “Of course she misses you, Joey! You are her daddy!”  And while that is a very nice thing to say to me, I don’t know how I can believe it.  Yes, I am her father (cue Darth Vader breathing), but without her actually saying, “I missed you, daddy” how can I really know? I know is a selfish thing to want to be missed by my daughter, but I think deep down we all want that as parents.  We want our children to understand who we are and want us around as much as possible.

Even with some of her limitations she is still able to get her point across.  There are so many times throughout the day Jaz and I just say “What is she thinking about?”  Justine will just be in her sitter or laying in bed, and then all of a sudden giggle to herself.  Was she remembering that time I tickled her non-stop through most of the Moana soundtrack?  Or was she remembering that time Jaz scared her and she literally screamed and jumped off the bed? At this age, kids are discovering they can interact more effectively with the world and can start communicating their feelings and what they see and hear.  Parents with children who are non-verbal have to pay a little more attention to get the message.

My “Teeny”

There have been times that Jaz and I go out on a date night and we leave Justine with friends and family and when we return, her attitude changes one way or another.  The babysitter will either tell us she was good until we got home, or that she was excited when she heard our voices.  So that proves to us that she does know who we are.  In a world where actions speak louder than words, because there are NO words, it is quite a statement from her.

 

Thanksgiving 2017: All that I Am Thankful For This Year

Happy Thanksgiving! There are moments in life where things just seem to difficult and I struggle to find happiness.  I think that is part of growing up. Once you open your eyes to all of the things you have to pay attention to like work, bills, health, and your future, life seems to weigh heavier on your shoulders.  But once you stop and look at all the things we have been blessed with, the load does not seem so heavy.  Here are the things I am thankful for this year!

Finishing Another Marathon
2017 Chicago Marathon
2017 Chicago Marathon

I did not think I could do it again, but I did it once again! Training was very challenging because this time I had to schedule around my daughter.  In the end it made it all worth it because I worked so hard to get to that start line and cross the finish line.  And I swear that I will write up a race report on that race!

Fundraising $5700 for the Ronald McDonald House
Team RMHC
Team RMHC

I still cannot believe that I was able to raise $5700 for the Ronald McDonald House this year.  I had never been a part of such a motivated fundraising team, but I am glad I was able to give back! They have done so much for my family and other families it was easy to ask people to donate.  In total, Team RMHC raised $1.3 million during the Chicago Marathon, the most in its history.

Supportive Work Environment
My work crew
My work crew

With all the craziness in my life, my work has been incredibly supportive and flexible with our situation.  They allow me to be there with Justine during some of her therapy sessions as well the tons of follow-up appointments.  My work shows that they are investing in me by allowing me to do training as well as pay for classes for my masters degree.  And of course they help me pay for our house and put food on the table.  I am so fortunate to work for a company that takes care of their employees.

Incredible Friends
Friends celebrating my birthday
Friends celebrating my birthday

We may not get to see each other nearly as much as we would like, but I know we are always there for each other.  We are at a stage where our kids are now friends and we see our relationships mirrored in theirs.  Long gone are the days of drinking and partying till the sun comes up and here are the days of slowing down and enjoying life and each other.

Loving Family
Our Family in California
Our Family in California
Justine's cousins in IL
Justine’s cousins in IL
My mom at Justine's birthday
My mom at Justine’s birthday
Family
Family

I am blessed to have this family, both on my side and on Jaz’s side.  It is sometimes hard for them to see us struggle, but they do all they can to help and make us smile.  Family means so much in our culture.  We learn that our family is our life very early on and just like everything else, we truly understand it when we grow up.  The support and love we receive from our family is what pushes us some days, and they will always be with us no matter where they go.

Happy Thanksgiving to you and your families!

“We’re gonna lose him bro”

A week ago, a new baby was born into this world. Eleven hours later God called him back home to heaven – Mason Anthony Vigan the son of my friends Marlon and Theresa. Every morning since then I wake up hoping I was just mistaken. I pray that all of what happened on May 1st didn’t, and they were still pregnant waiting for little Mason to come out and surprise us. Reality comes rushing back to me in the form of a knot in my throat that makes it all the way down to the pit of my stomach. He is gone…forever.

We got a text from Marlon early that morning saying that Mason was born, but was having some trouble breathing so he had to go the NICU. When I woke up that morning and read his message I was certain it was just one of those times that things may not start off as planned, and the baby would have to stay in the NICU for a time, but ultimately he will go home with his family. I did feel for them right away. The NICU is not a place any parent wants to be with their children. But I have seen parents come in and out of the NICU and you would never know the baby had any issues when they were first born. I was certain this was going to be one of those times.

With that confidence I went off to work, just waiting to hear back from Mar or maybe Mike that Mason had stabilized and things were looking good. Hours passed and that confidence slipped away. No text messages? No pictures? No Facebook announcements? Something was up. Finally Mike posted on Facebook to pray for his nephew. Before that post I had held onto hope that everything was going to be ok that day. Now it was sounding like we might be in it for the long haul. I prayed for Mason and for strength for Marlon and Theresa and clicked “Share” on Mike’s post to all of my friends. I also believe in the power of prayer will help those in need and the more people praying, the better a chance Mason would have. I knew things must have just been crazy with the family, but I did want to offer any help with them so I texted Mike:

Me: Hey. How’s Mason doing?
Mike: Not good
Me: What’s going on?
Mike: We’re gonna lose him bro

WHAT? How did things go so terribly wrong? How did they get this bad THIS fast? Why was this happening? I sat there outside of my building at work and started to cry. I called Jazmine to tell her what I had found out. I was paralyzed. I’ve never felt so helpless in my life and I knew that my feelings were nothing in comparison to what Mason’s family must have been going through at that exact moment. I called Erick and Joe to let them know the new developments. Both were as shocked as I was. I imagined they also were thinking that things would just get better over time. Not that time was now running out. I also called Potter as he is one of my spiritual advisors and I know he is always a good resource for a prayer. We needed everyone praying and praying hard. I had planned on going to the hospital with Jaz, Erick, and Abby to show our support, just so they knew we were there. I just wanted to go in the lobby and pray with my friends for maybe an hour, text Mike and let them know we were there, and then just leave. We were in our own group text message trying to figure out what time to go. We even started to convince ourselves that maybe things weren’t as bad Mike made it. Maybe things appeared real bad and everyone is so emotional that there was a misunderstanding. There was no way it was as bad as they made it seem…right?

Mike: Mason has passed, please keep the FAM in your prayers

No…
Wh-…
NO!!!!!
I had the same feeling when my dad died when I was younger. I know the world is full of people and I was even surrounded by them at work, but the world felt so empty. It felt like I was alone. It felt like the only person that could fill that void in this world just left it, and wasn’t coming back. I felt hollow. Sick to my stomach. Angry. Destroyed.

I can’t even fathom what Marlon and Theresa felt that moment they had to let him go. All the hopes and dreams they had for Mason vanished with his last breath. All of the future diaper changes, birthday parties, first steps, laughs and snuggles were gone in a blink of an eye. The word “loss” does not seem large enough to capture that feeling. Then I thought about their daughter Alyssa and how she will probably never fully remember this. Maybe she will think it was a dream she once had, where everyone around her was so sad. Or maybe she will have one vivid memory, maybe of the time all four of them were finally together. All of these thoughts raced through my mind and heart kept sinking and sinking with each of them. It was just buying time and preparing me for the one fact I did not want to admit. He was gone.

I talked to Potter again and we cried on the phone together and prayed so very hard for Marlon and Theresa. He told me to go home to my family, there was no need for me to be at work anymore. I drove home and Justine was taking a nap. I cried with Jaz and hugged Justine while she slept. I looked at her differently. I always knew she was special, but now I remembered why. We are not always fortunate enough to live out the dreams we set out for ourselves. To me, Justine was my dream. I so desperately wanted to have a child because my dad didn’t get a chance to see me become a man. I want to make sure I am around when Justine becomes a woman. Somewhere between her follow-up appointments, medications, and therapies I lost sight of that. Mason helped me remember that life is not all about the THINGS that you can buy to make you happy. But it is the LIFE you lead with the PEOPLE you LOVE that makes it worth fighting for.

Mason fought for 11 hours to make sure he got to be with his parents and meet his sister all together. Mason now lives in the souls and hearts of everyone he touched both physically and spiritually. I may have never met him in person, but I know he is with me from this day on. We love you Mason Anthony Vigan, you will forever be with us.

Long overdue

 

IMG_9287

This post is long overdue…

I am laying in bed, with Justine in a sleeper bed between me and Jaz…at home. It has now been 61 days since we left Lurie’s Children hospital’s NICU to be back home with Justine. In that time Justine no longer needs her NG tube, she has doubled her weight, and continues to catch up on her developmental milestones.  I can’t help be thankful, take a step back, and look where we are and where we have been.

Since she was in a hospital the first 47 days of her life Justine didn’t have a chance to learn what other babies learn during that time. She was too busy getting EEGs and blood drawn. Poor thing. Starting a couple of weeks ago we started a state program called “Early Intervention”. This program provides different therapy for children who had a rough start like Justine. Two therapists have been coming by every Friday to work with her and track her progress. She has made some leaps and bounds since her first evaluation and we are praying that continues.

On to the seizures. Justine had a genetics test done while she was still at Lurie’s hospital and since it is such a detailed and comprehensive test, it took a few months to receive the results. Last week Justine’s neurologist told us the results. Justine has a mutation in one of the potassium channels (KCNQ2) that is known for causing benign familial neonatal seizures. However, she also has a mutation in a second potassium channel (KCNQ3). According to our neurologist, the kind of mutation in these two channels nor the combination of BOTH mutations in the two channels has been seen before in her research. Justine might quite possibly be the first one to have this rare condition. To try and find out more about why she had this, Jaz and I will both be getting the same genetics test as well to see if either of us have these mutations in our genes as well. Other than that, Justine has been great in that department since being home. *knock on wood*

Unfortunately, acid reflux and stridor continue to be an issue with Justine. Every so often (1-3 days) she will spit up an entire feed. Like today, we fed her at home, waiting for about an hour, went to Buffalo Grove Days, and she throws up in her stroller. You can tell when she is experiencing it because she arches like crazy, cries like crazy, and can very rarely be comforted. As much as I hate pumping her with medication, but I’m guessing it might be time to bump up her anti-acid reflux medication (Prilosec).

Although there are some hurdles we still have to get past, I thank God that we have been able to be home with her instead of at the hospital. We have seen such love and support from all of the doctors and nurses at both Northwest Community and Lurie’s Children hospitals. The company I work for (Protective Life) took up a collection for our family to help with medical expenses totaling up to almost $2000. The Ronald McDonald house was our home for a month and helped us deal with the situation we were in. They gave us a (very comfortable) bed to sleep in and their volunteers fed us every single day. And of course I thank God for our friends and family that continued to pray day after day for Justine. It was very comforting knowing that Justine was on everyone’s minds and hearts throughout the day. We knew the day she went home would bring joy to so many people, and it truly did!

IMG_9671

Hanging with the nephews

My oldest brother and his wife had their anniversary dinner so we took their boys out for dinner and some commerce. The older one, Daniel is turning 13 later this month so I wanted to get him his birthday gift early. Yeah, he’s still into legos so that’s cool with me. I can’t imagine him getting things that actually solidify his soon to be teenage-ness.

My brother dropped off the boys at Smash Burger where we planned to eat dinner with them. I’ve heard some good things about this place so I wanted to try it out. I have honestly have been doing pretty bad with the eating since I have been sick and “injured”, so I kept that trend. But trust me, I’ll be back on it soon!

IMG 1735

It’s funny when you end up knowing someone so well you realize you know what to expect. In this case, we were at a burger joint, probably with good burgers…and what does Daniel get? A grilled cheese. I totally knew when he saw that, he would be all over it. Last year when they stayed over we went to Superdawg, and did he get a hot dog? Nope! Grilled Cheese! This kid…but Eli on the other hand truly Jao’d it up with a burger. They washed it down with some really good looking root beer floats. Must be nice to have that youthful fast metabolism

IMG 1736

Jaz wanted to hit up a clothing store, so the boys and I just walked around Hobby Lobby. I was looking for a frame to mount my autographed Derrick Rose Jersey. I found a shadow box, but it was a little pricy, even after 50% off. I’m cheap sometimes…and very not cheap other times. Apparently this was a cheap moment. Probably because I knew I was going to spend some coin on the boys. We did manage to get this sweet shot of the boys:

IMG 1737

I don’t know why they weren’t smiling. I thought they were going to turn to the left for their second photo of their mugshots.

We then hit up the mall for Daniel to get his birthday gift. He’s such a nice kid that he insisted that Eli get something as well, as long as it was smaller in size to what he got. He’s also very logical. As I mentioned earlier, Daniel went the legos and Star Wars route. Another year I can live in denial that I have a teenage nephew. Eli on the other hand wanted a flat bill hat. I thought that was interesting, because he is the younger one, but is now starting to care about how he looks. I’m cool with expressing yourself through fashion, so I happily obliged.

20110928-073131.jpg

check him out! But he also wanted skinny jeans…uh, we might have to figure out how to sidestep that one. Lol