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 can go to the ceremony without him. I know it’s selfish of me to think of leaving him in the house. I thought I should focus my attention now on my daughter who is having her special day. I didn’t want to be preoccupied with taking care of Miguel. He is usually agitated when in a big crowd especially when there’s 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 a part of the family and my daughter’s graduation is 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 about how she feels with her baby brother being there in her graduation. And I know each one of us in the family feels the same way.

 

 

Serenity

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Sitting outside the balcony and looking at the calm 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.

 

 

Enjoying the “now”

IMG_1254I’ve not written a blog entry nor have I updated my journal for about a couple of months now. It’s not that I lost the urge to write. But because I’ve been busy enjoying this period of calm.

Miguel has been relatively healthy for the past six months. No seizures and no hospital visits (except for that time when his g-tube was accidentally pulled out). We are slowly getting to the rhythm of our routine. I also find myself having more “me time” these days. Time for reflection and meditation.

Looking back to when things seemed to be hopeless, I realize that those dark days made the present brighter. They also made me more content and happy with what we have. I’ve been more convinced that there is no point in wishing that things could be different but instead be thankful for the little blessings that come.

For us with a special needs child, life is living one day at a time. There are only short-term plans. It’s enjoying the moment, appreciating the “now.”

Miguel is turning three in September. Time sure flies fast. He’s not yet walking nor talking. But it’s alright. We know he’ll get there. He will.

 

 

Unconditional love

27912693_10156033537542567_5430292739366089933_oI never knew what it was to really love unconditionally until I had Miguel.

Throughout our lifetime, we experience different forms of love. We have love for our parents, our siblings, our friends, our spouse, and our children. Normally, we grow in our love for them because of so many reasons. And those reasons include mostly what they’ve done for us.

We love our parents because we know they’ve sacrificed a lot to raise us up. We love our siblings because we know they’d be there whenever we would need them. We love our friends for being there for us to make us laugh, support us or just keep us company. We love our spouse because they are the half that made us whole. And we love our children because they make us feel complete.

But, what if all those reasons are absent? What if that human being will never be able to reciprocate the love you’ve given him? What if is he is not capable of loving us back?

This is what I realized when Miguel came to my life. Having limitations in his physical and mental capacity, he is lacking in the ability to display emotions at will. He is not even socially responsive yet.

While my other children hug me back when I hug them, Miguel just passively accepts it. While I enjoy kisses from my three girls, Miguel is yet to know the functions of his lips. While his sisters make me laugh with their dance moves, Miguel is yet to know how to use his legs.

But I love him just the same.

He may be able to learn to express himself. He may be able to show me he loves me. He may learn to wrap his arms around me and give me kisses. He may learn some dance moves from his sisters. And he may be able to say “I love you, mom.”

But until then, I will continue to love him… unconditionally.

 

 

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.

 

 

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.

 

 

 

 

 

 

 

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.

On Facebook Special Needs Parenting Groups

 

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I am a member of a number of Facebook groups. Most of them are for parents with special needs children and I learn a lot from other moms through those groups. This is why I regularly check posts on those Facebook pages.

In the past few weeks that I’ve been checking those pages, I noticed that there are things that should not have been posted or at least should have been edited. But, it’s the reality of social media. It is a two-edged sword.

This post is about “the good, the bad and the ugly” of those Facebook groups.

The Good

I get inspired by posts from moms who describe how much they love their children and how proud they are of them. I admire those moms’ self-sacrificing spirit and unconditional love. Many share their stories of heartaches, frustrations, confusion but they also tell about their triumphs and joy.

I’ve seen photos of cute little ones who, inspite of having multiple surgeries, give off their best smile. They are our heroes.

I get inspired by those moms' self-sacrificing spirit and unconditional love for their special needs children. Many share their stories of heartaches, frustrations, confusion but they al

The Bad

Amidst those good stories are bad ones. It pains me every time I see posts about children being rushed to the hospital and asking for our prayers. There are also those about children who, unfortunately, did not make it. Those are the hardest to read.

But these bad news still carry with them a faint image of something good. There were lessons learned. Those parents showed remarkable love and bravery from which I draw strength.

The Ugly

Although moms in those groups are united by a common experience and goal, they are still individuals with different personalities and beliefs. These differences often result in conflict.

Today, I read a post by a mom who felt that some members of the group are not helping at all by unconsciously or deliberately making others feel inadequate. She explained that many of these individuals advocate for practices that are really personal choices such as natural birth versus C-section, breast milk versus formula, to co-sleep or not, etc.

She described how others would post about their lifestyle involving choosing only organic products. For a mom like her who really doesn’t have the time or resources to adopt such practices, posts like those can prove to be disheartening. They may cause undue guilt.

I am reposting here an excerpt of what she wrote about the matter:

          I’d kill to have the time to grow, harvest, and juice all my kid’s produce, ferment their foods, and make homemade kefir…but between caring for my disabled child, going to her doctor appointments, physical therapy, taking care of my other kids, and cleaning my house… I’m lucky to make frozen pizza, let alone, bathe.” 

It can certainly be frustrating when you read about other moms’ seemingly superhuman skills and abilities. After reading their posts, you’d be left asking “What’s wrong with me?” “Why am I not able to do such things?” Sadly, the answer born out of guilt is: I am a bad mom.

After careful consideration of everything that’s been said, I thought of coming up with a list of Do’s and Don’ts when joining such Facebook groups. We don’t want such groups to evolve into something that breaks one’s spirit.

Here is the list.

  • Be respectful, no matter what. Recognize that we are all different. We come from different backgrounds and we have different belief systems.
  • Think twice before posting. Always strive to be inspiring, encouraging or informational. We already have a lot on our plate and the last thing we need is something that can make us more depressed than what we really are.
  • If you need to vent some anger or frustrations about challenges you face, post so as to seek advice or simply find a listening ear. Remember we are there to help each other feel better.
  • Avoid stirring up debates. As much as possible, avoid controversial topics which may not really be helpful to the members.
  • Avoid posts that are self-patronizing. It is okay to share our child’s accomplishments or milestones because they can inspire others. Other members may not really be interested in our own accomplishments.

Facebook groups such as ones for parents of special needs children can be an excellent source of encouragement. Let’s work to make it stay that way. After all, we really need each other, don’t we?