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.


Compassion – Finding It When We Needed It Most

Before Justine was born, compassion was something that I knew existed but never fully understood.  I donated money when my friends would fundraise for a charity.  I helped cook meals for the homeless at shelters.  And I even collected money for the American Heart Association the first two times I ran the marathon. I knew these were all good things to do because it helped people.  For the most part, that is where my thinking stopped.  I never thought of the impact I had on these people’s lives or what it meant to them to contribute to their cause.  I just knew people needed help, I blindly helped them and called it compassion.

Then Justine was born.  We were already trying to figure out how to survive being new parents, but with all of Justine’s complications early in her life, we were drowning.  Each of Justine’s seizures pushed us deeper and deeper into a pit of sorrow and anger.  And we needed help. Desperately.  I just needed to look around to see that help was there all along.

Justine in the NICU
Justine in the NICU

The nurses in the NICU are people that you only hear about and never see.  They are working tirelessly in the background doing everything they can for  you and your child.  They are your eyes and ears to the hospital and they have such compassion for the families they help.  One of Justine’s first nurses made such an impact on us, Nurse Ann.  She would always make sure we understood what was happening to Justine, whether it was a new medication or a new blood test.  She was so great with Justine and also with us.  She even had a conversation with me about how I needed to go home and get some sleep one of the nights I stayed by Justine overnight.  She cared.  In the short time we were at Northwest Community Hospital, she always told us the truth.  When we asked if we should transfer Justine to Lurie’s downtown, she agreed, with no hesitation. She was there to see Justine get better.  A newborn she had just met.

Compassion form NICU Nurse Ann
Nurse Ann in the background

When we finally did transfer to Lurie’s all of the nurses in the NICU lined up outside to say goodbye to us.  I remember thinking how many times they must have done this in their career and if they ever wonder if the child is going to make it.  I wondered if they thought if Justine would make it.  I wondered if she would.  We hugged everyone before we left in tears because they were so good to us, especially Nurse Ann.  Throughout the 47 days in the NICU we crossed paths with many NICU nurses and nurse practitioners who showed the same kind of compassion that Nurse Ann did that first day.  I never knew how important it was until I was receiving it from others.


It’s Never Just a Fever

Today was a day!

Last night I went to bed at 2 in the morning because I had to defeat the rebel alliance in Star Wars Battlefront 2. Full disclosure: I am pretty terrible at the game. An hour and a half later I wake up to Justine moving around because she is awake. Since she is non-verbal she doesn’t announce that she is awake, but she still wants to let you know. She rocks from side to side roundhouse-kicking me and my wife until we wake up. Jaz normally wakes up first and I am able to fend off the attacks in my sleep. Jaz wakes me up and tells me Justine’s fever has gone up. This instantly launches me in to doctor mode. Kids with a diagnosis that contains epilepsy are more susceptible to febrile seizures than kids who don’t have the diagnosis. We found out the hard way in 2013 when Justine had a seizure that lasted for almost an hour because her temperature spiked (that’s a story for another time).

We start putting cold washcloths in her chest, back, and head. Her fever at this point was at 102.3°. We believe the last time she had a seizure in 2013 her fever was around 102°. I am naturally terrified that this latest illness will bring on another seizure or even worse a cluster of seizures. I’ve seen kids with the same diagnosis suffer from these same high fever seizures and it is so devastating for the parents. They could go on for months or even years seizure-free and then they are pulled back all the way to the start with these terrible seizures. Another problem we run into with Justine is that because she is non-verbal, we have trouble communicating to her. She needed to have some fever medication to feel better but she doesn’t understand that when we say it to her. So because she isn’t feeling well she does not want to eat or take any medication.

We have run into this situation before so I had to give her a Fever All suppository in order to get the fever down. Remember, this is at 3:45 in the morning. Pretty heavy stuff to do on an hour and half of sleep. We continue swapping cold washcloths on her body because her body heat warms them up so quickly. Of course she is screaming because it is not at all comfortable, but we must get that temperature down because of the possible seizures. It always feels like we are racing against the clock in these situations. Finally her fever dips a little to 101° at around 5am. Jaz and I are exhausted and Justine seems to be comfortable but she isn’t really eating. With fevers comes risk of dehydration so we decide we need to go to urgent care when they open. But first we need a little more rest. We slip in and out of consciousness for the next couple of hours, waking with the ear thermometer in hand to check Justine’s temperature.

At some point Justine falls asleep too with the wet washcloths on her so I remove them and replace them with a sweet Star Wars blanket Jaz got me for my birthday. She wakes up around 8am or so disoriented and her fever is back up to 102°. Adrenaline kicks in again but it is time for her daily seizure and dystonia medications. She luckily takes her seizure meds but has no interest in any more food or formula, including her dystonia medication. It is here when I start getting frustrated. I have these moments when I start feeling overwhelmed with our situation which can either spiral out of control or I am able to control my thoughts and focus on the task at hand. In this case, it is getting her fever down again. I give an audible grunt and Jaz knows it is time we switch off and she give it a try. She is unable to get her to eat any more so we book an appointment at the closest urgent care facility on a few minutes away. We drive over there to find out their computer system is down and they never received our appointment request (I made it online) and the visit would take 2-3 hours to complete. I said “no thanks” and drove her to the doctor’s office Jaz and I normally go to instead.

Since the doctor had never seen Justine before we had to go thru the whole medical history that I have committed to memory. Phrases like “seizure activity at 10th hour of life”, and “KCNQ2 encephalopathy” are things I never expected to say as a parent but need to remember anytime we meet a new medical professional. The doctor found no infections and said it was just viral, probably something she caught at school. With the continued risk of seizures and dehydration, the doctor instructed us that if she isn’t eating by mid-afternoon, to go to the ER so she can have IV fluids. I knew that an ER visit might be in our future when she stopped eating. Now it was becoming more real.

We drove home and tried to get her to relax, sitting in her sitter, watching YouTube videos of her favorite group Fifth Harmony, and continuing to keep her cool with cold compresses. Finally at around 3pm she ate a couple of bottles, including her dystonia medication she was supposed to take in the morning. Finally! A little progress. That med normally gets her a little sleepy so we were able to all nap, again slipping in and out of consciousness, obsessively checking her temperature.

She wakes up again crying because she has spiked once again over 102° which once again launches us in to try to get it down. More cold washcloths and this time two suppositories as directed by the doctor slowly get her temperature down to around 101°. We decide to hang out in the basement where it is a little cooler and Justine gets to play with all of her toys along with some new ones my friend Carrie dropped off earlier in the day:

She takes her nighttime medications with no fight (thank God!) and another session of cold wash cloths and extra snuggles and her temperature is down around 99°. With fevers, children’s temperature normally spikes while they are sleeping (which was proven today) so I am fully expecting to wake up in panic tomorrow morning to start all over again. But this time I won’t be up playing video games all hours of the night. Instead I wrote this blog.

These types of crazy days are few and far between but when they do happen I’ve learned to stay cool and give both Justine and Jaz what they need to get through the day. I think of these days all of the time because of the increased risks of seizures and how I need to react to the roller coaster ride of the day. As parents, there are days we just simply need to survive to make it to the next day. As exhausting as it can be, we do it for our children, so they have the best opportunity for success. Just as important, it gives my wife and I the opportunity to work together and listen to each other’s ideas to get the job done. I like to think I have gotten better during these stressful days, but it is because I work with Jaz to get it done.


At some point in our lives we have all done it. We look at someone and start comparing things whether it’s material like money and clothes or something intangible like happiness and love. At the end of the day no one’s life is perfect and we should be happy with life or change things in our life that may lead us to happiness. Most of the time with me, that is much easier said than done.

As a parent with a child with special needs, I almost always compare our lives with people around us. When it is just the three of us, I am ok. We live in our world where we can be happy and make our lives easy. But when we go out in public like the mall or at a gathering, I can’t help but wish for the lives of some of the other parents. I’ll see a kid simply walking next to her parents, or a toddler helping himself to some crackers and it will break my heart. I wonder if Justine will ever do any of those things. She is 4 years old, the age where she should be discovering so much of the world, but she is unable to explore it on her own two feet. And even worse, if she wanted to, she is unable to tell us.

I fear I will never get to dance with her or hear her say “I love you, daddy”. These are the same fears I have had for the past 4 years. There has been some slow progress which is always good, but I can’t help but wonder how it feels to just know the sound of your child’s voice. I would give anything for her to coming running into my arms when I get home from work. I won’t get to enjoy these things today, or tomorrow, or anytime soon. I feel like we have earned it. We work so hard to give her every opportunity to develop with therapy sessions, multiple specialists, and assistive equipment. And we have been at it for 4 years. I feel cheated.

But then Justine does something to remind us of what is important in life. She laughs to herself about her silly hand. She does this thing where she raises and extends her arms like she is the conductor of an orchestra. Or she will look right at me, in complete amazement as I sing “Rainbow Connection” for the millionth time to her. SHE is happy.

As far as she is concerned, she is able to get what she needs from us. She gets to hang out with friends at school and with her cousins, aunts, and uncles from time to time. And she has her grandparents. All of mine had passed away when I was very young so I never understood that grandparent-grandchild relationship. Now, I absolutely get it. Before everything else, I want HER to be happy. Sure she may get mad at us every now and then because she has to go to her therapy session, but for the most part she is happy. When I look at her smile and the progress she has made, it is all worth it.

I will probably still have my moments of weakness and be jealous of families around me living their “normal” lives. But they are not my priority. Justine is. She has everything she needs and so do we.

Could it be? 2015?


Here’s my usual New Year’s resolution to start blogging more. It should be relatively easy since I haven’t had a non-Instagram post in the longest time.

I know it’s probably a big obvious observation but I have changed a ton since Justine has been around. I like to think I am more responsible and that I think things through a little more. Continue reading “Could it be? 2015?”