Posted in MEDICAL, MIGUEL'S JOURNAL

The brain is an amazing thing

Miguel suffered from multiple seizures again. He had to be hospitalized because his oxygen level dropped too low and he seized in his sleep. This seizure while sleeping is something new to us. So, the doctors wanted to monitor his vitals closely.

We spent the night in the hospital with no seizures. The doctors decided to let us go home the following day. It was a relief for both me and Miguel since we weren’t able to sleep in the hospital that night.

When we came home, Miguel refused to be fed through his g-tube. I knew he didn’t want it because when I was putting his mic-key extension on, he pushed my hand away. I did it again and he responded the same way. So, I figured he didn’t want me to touch his g-tube.

I thought, he would starve. The g-tube was there because he couldn’t feed by mouth without aspirating. So, reluctantly, I tried giving him his formula through a sippy cup. He took one sip, then another and another. He didn’t stop until he finished all 250 ml! He didn’t aspirate or throw up. And just like that, we said goodbye to g-tube feeding. Just like that.

This scenario is all too familiar for me. Last year, he also had a series of seizures and he was hospitalized for three weeks. His seizures were worse that we almost lost him.  Those weeks meant very little rest because I had to make sure he didn’t get tangled up with the many wires connected to his tiny body.

But after that ordeal, when we came home, Miguel amazed us with a new skill. Days after coming home from the hospital, I saw him sitting up (which he couldn’t do before the seizures). He was sitting up unassisted. We were all amazed: his doctors and his therapists.

His pediatrician told me this is something she has never seen in her years of medical practice: seizures bringing about new skills to a developmentally delayed child. Most often than not, seizures impact cognitive abilities in a negative way. It’s either the child loses some skill or not gain any new one. Miguel’s case is certainly intriguing.

Well, it could perhaps be just a coincidence. But it could also mean one thing: the brain is such an amazing thing!

 

Posted in lessons learned

Braver

Today, we celebrated Sofia’s graduation from elementary. My husband took the afternoon off from work to be in the graduation ceremony of our eldest child. All of us were there, including Miguel.

Honestly, I was thinking of calling our respite worker so we could go to the ceremony without him. I knew it was selfish of me to think of leaving him in the house. But I was thinking I should focus my attention, this time, on my daughter. I didn’t want to be preoccupied with taking care of Miguel. He is usually agitated when in a big crowd especially with loud noise and bright lights. And when he’s uncomfortable, he cries a lot. He doesn’t want to be in his stroller nor in my arms. He just wants to be in his bed, in his room.

I wanted to leave him in the house for one other reason, a more selfish one. I didn’t want to find myself having to explain to others why he’s not responding when being talked to. Or why he is always looking upwards. Or why his eyes look funny. Or why he claps his hands a lot. I didn’t want to hear little children say, “That baby looks weird.” Or see their parents stare at him.

I was selfish… for a moment.

But then, I told myself that Miguel is part of the family and my daughter’s graduation was a family celebration. He is so much a part of our family as my other children. So, why would I leave him? I dressed him up and prepared his things: feeding bag, machine, tube, syringes, and rescue medicine. These are in addition to diapers, change of clothes, lots of blanket and wipes (in the event he throws up).

During the program, he was uneasy and was crying as expected. I wasn’t able to focus much on the ceremony. But I felt good. I felt good because we were all there: my husband, me and our four children. We were all there together celebrating one of our family’s achievements.

I found myself braver today. I didn’t even notice the stares. I was also surprised with myself when one of my daughter’s teachers approached us and talked to Miguel. She tried to get his attention but he was just looking at his hands. I could tell by that teacher’s face she’s wondering why. For the first time, I didn’t apologize nor give an excuse for Miguel’s behavior being a special needs child. I just smiled at her. It felt good.

After the program, Sofia walked up to us and put her certificate on Miguel’s arms. It says a lot with how she feels about her baby brother being there in her graduation. And I know each one of us in the family feels the same way.

 

 

Posted in lessons learned

Serenity

IMG_0638

Sitting outside the balcony and looking at the quiet sea, I can’t help but feel a sense of calm I’ve not felt in a long time. The kids were inside and for a good ten minutes, I was alone with only the sound of the waves to interrupt my thoughts.

I looked at the clear blue sky and said a silent prayer. I thanked God for giving me the strength when I felt weak and more faith when I needed it.

I couldn’t help but see that life is very much like the sea. There are times when its waves are calm and serene. But there are also times when the strong winds violently hurl the waves in a turmoil. Life can be tough and like the violent waves, it can be scary.

But the sea doesn’t stay that way. It will always return to serenity. And when life returns to this period of calm, you can’t help but be amazed.

 

 

Posted in lessons learned

What I learned about my oldest daughter from the book “Wonder”

IMG_7804Two weeks ago, my eldest daughter Sofia brought home a book for me to read. It was the book “Wonder.” Yes, it is that book which inspired the blockbuster movie with the same title. It was the story of Auggie, a special child.

I haven’t seen the movie. I didn’t have the time because of so many things that I needed to accomplish at home. Anyway, I was touched by my daughter’s gesture.

She thought about me when she saw the book. Or maybe, she’s telling me something.

I started reading the book and I couldn’t help but see Sofia in Via, the older sister of Auggie.

There was a part in the book where Via described how she would keep her problems to herself because she didn’t want to bother her mom and dad who were clearly busy with her baby brother.

I don’t know why I felt this sudden feeling of guilt. I know that the impact of caring for Miguel is greater on Sofia because she’s at that stage where she’s in that confusing teenage phase and she needed more guidance from us. But, I can’t be with her as much as I wanted to because of having to care for her baby brother.

And so, questions started coming up in my head. Could it be that she is keeping to herself, not wanting me and her dad to worry about her? Does she have concerns that she doesn’t want to bother us with because she’s thinking we have bigger worries to deal with? Is she minimizing her own problems because she feels they’re insignificant in comparison to her baby brother’s?

We’ve always been open to our children. We’ve always told them that we wouldn’t be keeping secrets from each other — that we are one team. And Sofia has always been good at telling us what she feels.

But after reading the book, I realize I may not be seeing some things that I needed to pay attention to. She may be struggling with problems that I don’t know about.

So, I took the chance during their holiday break to talk to her more often. We got to spend more time together doing just about anything around the house. And while on them, I got to draw out her feelings and thoughts.

Next week, she’ll be back to school with her sister Elaina. I’m just happy that I got to spend more time with them particularly now that Miguel’s seizures have been under control.

Yes, it’s a challenge for me to really keep a close eye on each of my four children. But what I learned is that I shouldn’t sacrifice my other children’s needs for my special needs one. After all, they are all special and precious to me.

 

 

Posted in lessons learned

My husband: Our silent hero

child-2730426_1280It’s always been the mom who is the hero when it comes to discussions about caring for a child with disability. It may be because moms are the primary caregivers and ones who are always there with the child. It may also be due to the fact that moms are more vocal than the dads. For this, I feel that dads are unknowingly pushed out of the picture.

This is why I decided to write this post about my husband.

My husband is a naturally timid guy. I am the more vocal one. He is generally laid back and I am the more proactive one (or so I think). He doesn’t appear to be exhausted and I am the one who’s prone to depression.

In this journey of raising our child with disability, I never once heard him complain about how exhausted he is or how depressed he feels. He certainly is a man of few words (or sometimes no words at all!). There are times when I mistake his silence for not caring or for being apathetic. I wanted him to get involved more.

What I fail to realize is that he’s already doing enough, if not more. Being the sole breadwinner of the family, I know he feels the weight of the responsibility of maintaining the household. I know he also feels overwhelmed whenever Miguel is sick.

During those times when Miguel had to be hospitalized, he was the one going back and forth between the hospital and our house. While I was busy caring for Miguel in the hospital, he was the one caring for our three older girls. He was the one cooking, cleaning the house, doing the laundry, grocery shopping, etc. These were in addition to his long days at work.

Amidst all the chaos when Miguel’s seizures were frequent and difficult, I came to know my husband all over again. Together in the emergency room, we saw each other’s strengths as well as our own weaknesses.

He may be a man of few words but he certainly is a man of action. He never fails to support us in all the ways that the head of a family should — materially, emotionally, and spiritually.

One time, while looking at him sleeping by Miguel’s hospital bed, I couldn’t help but see not a timid and shy guy but the father of my children who has stood by me no matter what. A man who may speak a few words but has done a lot of things to keep our family intact.

In the days when I am wallowing in loneliness and depression, his calm and quiet demeanor helps me get through them. I know he’s exhausted, too. But he never let that exhaustion make him give up on us nor drift away.

I came to the realization that in this fight, we are partners and not enemies. We are team mates and not opponents. One is weaker without the other. I am definitely weaker without him.

This is for our family’s silent hero.

 

 

 

 

 

 

 

Posted in lessons learned

An Old Wound Was Opened

Today was a sunny day. I should have felt all warm and good. But I did not.

After almost a month of being housebound, Miguel and I were able to go out and play in the park. My toddler, Olivia, was also with us.

Miguel had a great time in the swing. Olivia had a blast, too, going up and down the slides. But, we didn’t stay there long because the temperature was low, 3 degrees Celsius. I didn’t want them to get sick again.

The park was close to my two older daughters’ school so I decided to just go and pick them up after we’re done in the park. So, we did.

While in the lobby waiting for the dismissal, I saw some familiar faces.  I get to meet some of the parents of my daughters’ classmates again. Actually, I haven’t gone to the school for months so they were surprised to see me there.

I knew they would ask me about Miguel and I was right. A few already know about Miguel’s condition so these didn’t really ask me a lot of questions except how he’s doing now. Some new faces approached me while Miguel was in my arms and gave him a look that is all too familiar to me.

One of them stared at Miguel like he was in a freak show. That look cut through my heart. I may have just been too sensitive to interpret it that way. But I know the look. I really know.

That moment I felt like all of them just circled around us and we were a spectacle in a theater. I wanted to run out the door and save Miguel from all those stares.

One even commented that Miguel must have been born that way because I was taking birth control pills. She said she knew of others who have disabled children because they were taking pills when they conceived. I politely said most are genetic. She didn’t seem to acknowledge what I said.

I know most of the comments people tell me are not meant to hurt. I know they are not that cruel. But, those words still hurt. I just wish they know.

Today should have been a good day for Miguel and me. Instead, an old wound was opened. I hope it heals fast enough so I can move on… again.

Posted in MIGUEL'S JOURNAL

Smile

We keep hoping because of our child's smile.Today, Miguel gave us smiles. Lots of them.

It’s been over a month now since his last seizure and a week since his last hospitalization. He’s much better now although still recovering from the flu he had recently.

Throughout those ordeals, he rarely smiled. It may be because of the discomfort he was feeling. He was not crying all the time but he just had this expressionless look in his face, sometimes with a slight grimace. In those weeks, I missed his smile and laughter. I never knew how much I would miss them.

But today, while his Dad was holding him and talking to him, he smiled. It was the kind of smile that he gives whenever he’s amused. I could then tell that he’s feeling much better.

For us parents, it is our child’s smile that keeps us going. No matter what we’re going through and no matter how helpless we feel, it is that smile which keeps us hoping. When our child smiles, it is as if he’s saying everything’s going to be alright.

For my Miguel, his smile tells me that I have to keep believing that he’s going to be fine.

Posted in lessons learned

Friday Reflection: “This, too, shall pass”

pexels-photo-219998This, too, shall pass.

The saying reminds me that whenever I feel discouraged or depressed, the feelings will go away at some point. And Miguel has been very good at making those feelings pass because he unconsciously would show me his strength in unexpected ways.

When I feel elated because of some accomplishment, the saying helps me realize that whatever achievement I may have can easily be overshadowed by some mistake or Continue reading “Friday Reflection: “This, too, shall pass””

Posted in lessons learned

Lost (A Letter to my Son)

I wrote this letter after Miguel’s first big seizure. I am reposting it here.

16831337_10154957437152567_503573453_nI thought I’ve lost you. It was the scariest experience in my life. When I saw you stopped breathing and your eyes were no longer responding, I thought that was it.

I couldn’t explain the exact emotions I felt during that moment when they were all trying to make you breathe again. There were so many things going on in my mind that I couldn’t make a sense of all of them. It was just the ringing in my head that I could hear. Everything paused and it was only you that I was able to see.
 
They were doing a lot of things on you. I knew something serious was happening. They were in panic mode. I could hear the nurse saying that you’ve already been poked 7 times and they still needed to poke you. You really have tiny veins and it has always been difficult for them to administer medicine to you intravenously. I was told that you were already seizing for 20 minutes that they needed to drill your bone to give you the seizure medicines. I knew it would be painful but you were unconscious so you didn’t put up a fight. 
 
It took them 40 minutes to make you breathe on your own again. 
 
I am so sorry your Dad and I couldn’t shield you from all the pain. We feel really bad that you have to go through all these. We feel helpless. We, too, feel lost many times. But know this, my son, we will always be here to hold you in our arms. I will never tire of watching over you and spend sleepless nights making sure you’re okay… until the new world comes when you won’t have to suffer anymore.
 
It will not be long. It’s almost here. Promise.
 
(Revelation 21:4 – “And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.”)