I rolled over and swiped my phone to see the time. It was already 9.
I hadn’t slept this long in….well so long I can’t tell you how long its been. Kevin knowing I needed the rest took care of the boys.
I sat up and the rush to my head and the return of the throbbing brought all of the feelings from yesterday back into focus.
I walked out to the hall and peeked my head in the boys room to see Aiden was still sleeping peacefully…seeing him at peace brought comfort and a twinge of pain. When he is asleep he is free of all the things that wreck havoc on him…he deserves that peace all of the time and after yesterday we learned that even in his sleep he might not be “free”.
I walked down stairs and was greeted by two of my smiley little boys, they chirped, “Hi Mama!!”
I looked at Kevin and his eyes matched my tired aching heart but he smiled and warmth and hope filled me for a second.
I walked into the bathroom and looked up into the mirror for the first time since yesterday.
Mascara still marked where yesterday’s river of tears flowed.
My eyes stung and were so puffy I looked like I had been in a fight.
Yesterday Aiden was diagnosed with Infantile Spasms.
It is the most catastrophic form of childhood epilepsy. High mortality rate. It robs you of your child. Traps them in a state of constant chaos even when they aren’t seizing, unlike other forms of epilepsy where brain waves can return to normal between seizing. The treatment is harsh. So harsh it is one of the reasons for the high mortality rate. Not treating it is accepting Aiden will be like this forever, as a “lost” newborn or be taken from us due to this condition. Treating him means it could not work, wreck havoc on him and take him from us…if treatment does work this condition can morph into another severe type of epilepsy.
Earlier this year Kevin and I noticed Aiden making a weird movement, at first it was just here or there. Like he was spooked.
Then it was more and more. Aiden has CP and is spastic with his movements and he can’t move his limbs freely so we weren’t quite sure what to make of these movements but they didn’t sit right with us.
Around the same time Aiden stopped visually tracking. Aiden used to track you from across the room. He adored his mobile and crib mat I got for helping develop neurologically…then one day he didn’t.
One day he stopped making eye contact. One day he just wasn’t “there”. It was like he was lost.
It was like someone turned the light out in my little boy.
We had a neurology appointment and we talked about the regression, his neurologist even said she was shocked he wasn’t tracking as he was at his last check up. But she chalked it up to CP. We were concerned because we knew CP and PVL (his brain damage from organ failure) did not progress or cause regression. When she asked if he was having seizures (we were told to watch for lip smacking and eye movement) we said we didn’t know but he wasn’t lip smacking or having rapid shaking eye movements. When we raised concerns again about the regression she brushed it off saying sometimes it happens…which it does not.
At that appointment we were very disrespected. At his previous appointment with that neurologist we asked about CP and we were dismissed. At this appointment we were told as our neuro walked in, “he has CP, this is severe CP…”
She didn’t say hello, examine him, talk to us, she just began talking to the student in the room. Hearing it was a punch to the gut, we knew…we were the ones pushing for the diagnosis but still to hear CP and in that manner was painful. No family should be handed a diagnosis that life changing like that. She wasn’t even speaking to us.
At the end of the appointment she said, “I hope that you do not put him in something and leave him in another room and forget about him and play with your other normal children and write him off as slow.”
It was as if someone sucked the air out of the room when she said that.
Here we were, pushing to get a CP diagnosis to get into the CP clinic…we had been pushing to get him more help than just county offered services. Here we were asking why he wasn’t tracking and what that meant and how alarmed we were. And that is what she had for us.
A lump in my throat formed, my voice quivered and my eyes were brimmed with tears.
“We don’t and we would never.”
I started almost trying to defend our parenting, “He loves patty cake…he loves to swing….he loves to play with his brothers…he loves when we sing to him and let him lay on our chest to feel the vibrations…”
I stopped I was angry, I was either going to start sobbing or yelling.
I took a deep breath and I said, “Even if he can’t do the things his brothers do we include him, in story time, singing, playing…they include him too…not just us…his grandparents…Aiden is not forgotten or written off he is a part of our family.”
When we left that appointment we cried in the parking garage.
We felt helpless.
These are the people that were supposed to be helping us. Helping Aiden. They were supposed to be the ones telling us what to watch for, looking for warning signs and red flags.
We know now that in a child with PVL or CP, the regression that we were bringing to her attention should have been met with testing and investigation. A simple EEG.
After that appointment she said to follow up in 6 months. SIX MONTHS.
At that point we made the decision to take Aiden to another hospital and begin researching on our own.
Through researching I came across a benign sounding condition called Infantile Spasms.
They sounded to me like something an infant would have that is normal. I clicked on the video. It matched what Aiden was doing. It looks harmless. Aiden’s arms come into a “hug”, his legs flex and he looks over his shoulder like he is “spooked”.
I innocently typed Infantile Spasms into my Google search bar.
Reading and learning about IS literally made me ill.
The room spun. Kevin was sitting across the room from me. My lip was quivering. Tears were filling my eyes. After reading the first article on it I couldn’t go any further than researching how to get it diagnosed. I just couldn’t.
I didn’t want to read mortality rates, about treatments that could wreck havoc on his fragile body, I didn’t want to cross that bridge unless I had to. And we prayed hard that night and every night after that we wouldn’t have to cross that bridge.
In the time we waited to get into the new neurology department Aiden got sick. He came down with the GI virus that put him in the hospital without food for 5 days.
His spasms seemed to get much worse. We now know hunger makes these spasms worse.
He had his episodes and clusters in front of nurses, doctors and residents. I asked numerous times and I was told not to worry and assured that they were not seizures and to just forget about it.
Instead I took videos.
I took them of Aiden in the hospital bed seizing or as the said “just being spooked”.
I took those videos to his new neurology team and asked for an EEG. They agreed. They immediately were alarmed that he wasn’t tracking and regressed. They agreed with every fear and concern I had. We went from being dismissed to being valued and heard.
In waiting for the EEG Aiden got sick again. This time we avoided the hospital but not with out a full 3 days of round the clock dropping pedialyte into his mouth every 10-15 minutes and over a week of recovery time.
We finally got to the EEG.
We drove out to Cincinnati for the appointment as soon as I sat down in the waiting room with Aiden he began to seize. I ran up to the desk and told them and they rushed us back.
While he seized for a while they just missed the episode because it takes a while to get 27 electrodes hooked up. But thankfully they got to see first hand what we were concerned about.
The 25 minute test turned into a 2 hours long test…
I sat in the room holding Aiden, feeding him, trying to console him (he did NOT like the electrodes or his little gauze hat).
My heart was racing. This was it. What I had been fighting for. I knew in my heart he needed this test. I just begged that I was wrong on why he needed it.
I turned to the nurse adminisering the test and said, “I know we didn’t get a spasm on the test but when will I know if he has hypsarrhythmia?”
Her face did that face I’ve come to loathe. The face that creates a pit in my stomach. The face that says all I need to know.
Her eyes became sentimental, her lips curled into a half smile. Trying to convey comfort but one confirming my fears and she sighed. She had that “you already know” face.
“Do you have a medical backgroud? Are you a nurse by chance?”
“No, just a mom that knows not to blindly trust. It is what 5 months in the NICU does to you.”
She told me someone would read his results within the afternoon and get back to us either today or within the week at the start of the appointment….after I mentioned the hypsarrhythmia she left the room to speak to a nurse.
But she was actually paging the person that would be reading the test at the hospital to read the result immediately to confirm what I feared….hypsarrhythmia.
She came back and told me that is what she was doing because she wanted us to have the results and that they were just as important to them as they were to us and she wanted to make sure we knew that.
She came back and turned on the lights and told me a nurse would be calling to speak to me, just then the phone rang and I answered.
She echoed everything I knew in my gut.
I thought I would be prepared to hear it.
But I didn’t account for my heart pleading with my brain to be wrong.
Fighting and advocating for your child leaves little time to grieve or cry or even let it sink in.
Getting him that EEG was all that mattered, getting a team to listen to our concerns was all that mattered.
But there I was holding Aiden in one arm, a phone in the other listening to a nurse spell out what I typed into that Google search bar months ago.
They wanted to admit him as soon as possible but understood we might not be able to due to money, time and being two hours away that day.
They wanted to administer ACTH to him which is an extremely harsh drug. It is a gel that is injected into his muscle twice a day, one that is meant to shock his brain out of the hypsarrhythmia. It also can causes GI bleeds, can cause congestive heart failure would cause immunosupression and electrolyte imbalances, could cause sepsis, causes them to become inconsolable and irritated, hungry but never full amongst many other heartbreaking and terrifying side effects and risks.
After I hung up the phone the sweet nurse administering the EEG took Aiden…she washed his hair and combed it. She cooed at him and handed him back to me and said, “you are such a good mama, you caught this and we can do this together…it is a lot though….are you ok?”
I looked at her and tried to say yes but my voice cracked. I nodded my head firmly trying to will back the tears but they came any ways.
I held Aiden tight to my chest and she swallowed us up in a big hug. I started to cry.
I walked down the halls, Aiden’s wet curls tucked under my chin trying to not cry. I reached the first family restroom and rushed in.
I pressed my back against the wall and cried hard for 5 minutes and continued through the halls.
I walked out to our van. Kevin was in the van with Noah and Evan and he saw my face. He already knew from the time I was in there it wasn’t good. I saw his face consumed in worry but trying to be positive for Noah and Evan who were having a blast “driving” the van or as Noah put it his “rocket”.
I sat in the front seat and the tears began to flow harder. I closed my eyes tight with Aiden held snug and said, “I just wanted to be wrong.”
I called our family, got advise, support, they cried and I cried more.
After trying to wrap my brain around that afternoon and getting back home I used the number the nurse gave me and talked to them about how fragile Aiden was…that RSV and GI viruses have nearly killed him with the immune system he has…that his GI system is already compromised. They were so kind and thankful that we brought that to their attention because they agreed ACTH is probably not the first line of defense for him. The amount of compassion and care they had was amazing. They thanked me for researching, for knowing about this condition, for questioning them. They were so supportive.
They told us we could meet this week and figure out Aiden’s plan.
Last night I was mad…yelling…crying…researching…had a talk with God… I was and am mad that our family has taken every single bad diagnosis in stride. We didn’t say it wasn’t fair when we were told he was deaf. We didn’t say it wasn’t fair when they told me he wouldn’t talk. We didn’t say it wasn’t fair when they said he would not walk.
But THIS….this is unfair.
I felt I lost Aiden in the NICU…the Aiden I thought I would have…the identical twins I thought I was having. That probably sounds confusing to most but it was important I let go of the baby I thought we were having..important I let go of the identical twin comparison. Losing the future I thought he would have, that he deserved, that I wanted for him was hard to grieve. But it was important that I accept that Aiden was who Aiden was supposed to be no matter what his future held or conditions he faced.
All I wanted was Aiden…I would take him in any way I could but I just wanted Aiden.
So I held firm to that.
But then one day Aiden disappeared. That light in my fiery little boys eyes vanished. My little Aiden bug was gone.
This IS stole my baby from me….I feel like I’ve lost him twice.
He is trapped in a shell, lost in this choas in his brain.
Kevin and I have not stopped trying to crack that shell or find him in there since the day that light went out.
The thing is until yesterday I thought that light would come back but after getting the official diagnosis and digging deep into the research, crossing the bridge I prayed so hard we wouldn’t have to, now I am afraid it wont.
It kills me. I miss my son.
I am sad for the life he is left with. I want him to have a full life. I want him to experience life. I don’t want him to be trapped.
You can have a full life and not walk or talk…we were ok with that but this….him not being able to experience life….that he may die from this…that he is lost and miserable right now in a Hell I can’t imagine. It kills me.
This is not fair.
He isn’t even two. He hasn’t had a chance to just be a baby. He has known more pain and struggle in his life that most will in a life time.
Last night I took my doctor hat off, I took my advocate hat off, I took the mama bear hat off and I was just Aiden’s mama.
I cried. I held him. Breathed him in and stroked his hair. He laid in bed with us far after our other two littles were fast asleep.
I allowed myself time to mourn and grieve.
And when I did that he comforted me.
This sweet little “lost” boy comforted me.
He with all his might reached up his stiff arm and tightly clenched fist and held it to my face and smiled. It fell and he thrust it up again. Something incredibly hard for him to do.
Kevin brought his face close and Aiden reached out to touch his face with his other hand and he let out a laugh.
Sometimes when we look at the paper…the diagnosis…read the medical journals it is easy to get lost and succumb to the fear and dread of the black and white statistics and prognoses.
Then this sweet boy reaches out and with his hands says, “I am here mom and dad….I am here”.
So we will fight. We just aren’t sure what that fight is going to look like. We are afraid and overwhelmed. But we know he is in there and my God we might be able to turn the light on in his eyes again. But even if we can’t we are going to love this little miracle with all we have and keep praying for another miracle.
Because even though his brain is “static” and even though we are told he isn’t “there” I know with all of my mama heart that love crosses those barriers with ease and even if he can’t experience everything we wish he could he will experience love. Unwavering, unconditional, overwhelming, amazing love. He will feel life through our love.