(This is a poem written by my 12-year old daughter, Sofia, for her baby brother)
(This is a poem written by my 12-year old daughter, Sofia, for her baby brother)
It’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.
A “victim of circumstances or a victor over adversities.” It immediately hit me. Yes, I have a choice.
But, I have to admit that there are days when I feel a victim, trapped in an endless barrage of challenges without any way out. It is like being in a maze where every door I choose leads to a series of doors leading to more rooms where I have to contend with an enemy in each of them.
I have to admit that there are things that I can no longer change in my life such as having four kids, being a stay-at-home mom, and caring for a child with disability. I have to admit that there are things that I can no longer do because of being housebound most days taking care of a sick child.
There are days when I can see the light at the end of the tunnel but there are also days when it’s just dark clouds above my head. There are some days when I ask “Why?” and in other days I find the answers.
I don’t know what will happen tomorrow. But today, I choose to be a victor.
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.
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.
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.
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.
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.
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?
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.
Two years of caring for Miguel has taught me a lot about microcephaly and myself.
Here are some of them:
Microcephaly does not mean the end of the world. Like most parents who receive news about their child’s medical problem, I felt hopeless. What will happen now to my child? Will he be able to function normally and be independent? Will he be able to grow up? Or will his life be shortened by this condition? There were a lot of questions and the only answer we received from his doctors was that we just have to wait and see.
Apparently, there are many cases of children with microcephaly which showed that they can grow up normally and function independently. That certainly gave me hope. I knew then that I have to do my best to help Miguel reach his full potential, whatever that may be. It certainly is not the end of the world for us.
Don’t obsess about the size of your child’s head. When we found out about Miguel’s microcephaly, I became obsessed about the size of his head.
Continue reading “Lessons learned in caring for a child with microcephaly”
We spent last night in the hospital. Miguel has been sick with fever, cough and cold for three days now. When I saw that his temperature rose to 39.8 C, I knew we had to rush him to emergency before he seizes.
At about 10:30 pm, I bundled up Miguel and we rushed him to the Children’s Hospital. On our way there, he was coughing so hard and I could tell that he had difficulty catching every breath. Continue reading “Sunday’s trip to the hospital”
(Posted originally in The Mighty)
Well meaning friends can sometimes say hurtful comments. Yes, it’s true. It may not be their intention and I believe they love us. But there are times when their words and actions can cut through our hearts rather than heal.
How many times have we heard one saying, “I feel bad for you. This is why I didn’t have any more kids of my own” or “I don’t think I’d be able to do what you’re doing.”
Whether we accept it or not, people seem to pity those who have kids with disabilities. Continue reading “Don’t Pity Us Because My Child Has a Disability”
This, 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””