lessons learned

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?

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.

lessons learned

Lessons learned in caring for a child with microcephaly

TIPS IN CARING FOR A CHILD WITH MICROCEPHALY

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”

MIGUEL'S JOURNAL

Sunday’s trip to the hospital

24232636_759861987534421_4588612607799772749_nWe 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”

lessons learned

Don’t Pity Us Because My Child Has a Disability

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(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”

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””

MIGUEL'S JOURNAL

Today, we’re celebrating a victory

24201421_10155838165927567_1438621115_oThe one lesson I learned from having Miguel is appreciating little things.

Today, we’re celebrating one of Miguel’s small victories. Yes, I call them “victories” because he’s always coming out winning amidst seemingly insurmountable challenges.

Miguel has hypotonia so movements which come natural with other growing babies  such as head balancing, crawling, and sitting up are difficult tasks for him. This is why when he’s able to do one of those things, we celebrate. Continue reading “Today, we’re celebrating a victory”

lessons learned

How blogging helps me overcome negative feelings

laptop-with-blank-screen-on-a-wooden-table-and-a-cup-of-coffee_1232-1220For a stay-at-home mom like me who is caring for a special needs child, a large amount of time is spent at home. Yes, I am housebound. We only go out when we go to our Christian meetings and doctors’ appointments. Other than those, we’re basically just home most of the week.

It’s not because I’m too lazy to bring him outside. I just don’t want him to get sick because it’s cold and rainy. Also, I’ve observed that there are a lot of people sick at this time of the year. When Miguel gets sick, he tends to have seizures and oftentimes, those bring him to the hospital. So, I’d rather spend our days at home and keep him healthy. Continue reading “How blogging helps me overcome negative feelings”

SPIRITUAL THOUGHTS

Sunday spiritual thought: “Damaged, yet valuable”

The talk in our Christian meeting today was so refreshing. The speaker talked about finding favor in the eyes of God.

What really touched my heart was the thought from the Scriptures that God does not view us as “damaged goods.” Even when we feel we’re broken and it’s difficult for us to put back together all the pieces, God values us.

Original
Original sketch

To drive home the point, the speaker talked about how painstakingly art experts repaired Da Vinci’s sketch after it was damaged by a vandal who used a shotgun to blast a 6-inch hole in the artwork. Glass fragments and loose bits of paper were removed in the restoration and it took them months working on it. Continue reading “Sunday spiritual thought: “Damaged, yet valuable””

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.”)