Light at the end of the tunnel

Last year, it would have been difficult for me to write about finding the light at the end of the tunnel. It was a trying period in our family’s life. It tested our faith and our family’s strength. But that year also showed us how resilient we can be.

Our three girls have been an amazing part of this journey. From Sofia, who acted as the “mini mom” while I was caring for Miguel in the hospital, to Elaina who never failed to let me know she loves me, to Olivia, who never missed giving us a good laugh whenever we needed it the most.

It seems that the worst is over…. for now. And in this period of relative peace and quiet, good news are pouring in for our family.

First, Miguel has been relatively healthy with no seizures and no hospital visits for about four months now. Recently, his ophthalmologist told us he doesn’t need his glasses anymore. All his lab tests came back normal. He’s been eating orally (of course, with pureed food) without much difficulty. He’s smiling and laughing a lot. He’s moving around.

Second, assistance from the government kept pouring in. It came to me as a surprise because I was not really optimistic about receiving help soon, being on waitlist for respite for the last two years. But they came. To give me some break from caregiving, they sent me a cleaning lady twice a week. Then, there will be respite for Miguel beginning next month. This will give me time to do the thing I wanted badly: to go back to my beloved volunteer work of helping people study the Bible. How I missed doing it! This will surely give me the mental and spiritual boost that I desperately need.

I can’t help but be reminded by the experience of God’s ancient servant, Job. In the Bible, it was described that he lost all his livestock and his servants. Shortly after, he lost all his children in one night. The last and probably the most challenging test of his loyalty to God was when he himself got so sick to the point of wanting to die. Yes, we may feel that our challenges come one after the other. I felt that. I couldn’t see the light at the end of the tunnel.

But like Job, I know in my heart that God is watching over our family no matter how difficult our situation may have been. I know this because, looking back, I saw that we kept our peace of mind. We stayed sane and composed. Our three girls didn’t falter in their own faith and spirituality, even in their very young age. And just like Job who was blessed with ten times more than he lost, I feel we’re receiving a hundredfold more.

For all these, I am thankful to God who really has never left us.

I guess we’re seeing the light at the end of the tunnel. I’ve always known there is that light but I didn’t expect to see it this soon.

 

A good start for 2018

We will always look for the rainbow throughout our journey.The family has a lot to be thankful for as we start the new year. We definitely had a good start with one good news after another. We may be seeing the light at the end of the tunnel, after all.

Miguel has been seizure-free since November last year and he’s pretty much in good health. This is the first good thing that’s been happening to us. We’ve been able to relax a bit and go back to our usual family routine. I feel like we are in that state of calm after the storm. Everything’s quiet and peaceful.

Another good news we received was that we qualified for some assistance from the government regarding respite and “homemaker” services. This means that I will be relieved of some of the work around the house to focus on Miguel. I will also be having time to go outside and have time for myself because somebody is coming to watch over him. This is definitely a treat for me!

Last week, the agency sent me a cleaning lady and she helped me tremendously in catching up with my household chores. I never thought how two clean bathrooms and vacuumed floor made me feel so much better!

I am sure I will have more time for Miguel when my 4-year old Olivia goes to kindergarten in September. I will be able to focus more on Miguel’s physiotherapy and speech. Hopefully, we’ll be able to do more in his oral feeding too so we can graduate from the tube soon.

We’re hoping and praying that this year brings more good news for us. We know that the possibility of setbacks is still there. Miguel may get sick again or there may be other challenges. But we know that what our family has gone through in the past year made us stronger and wiser to face whatever it is we’ll have to face in the future.

With God’s help, we’re confident we’ll be able to get through this year with a calm heart and a positive spirit.

Miguel’s 2017: In retrospect

2017 was a year of “firsts” for Miguel and our family.

February

Miguel had his first surgery (getting his G-tube). We finally decided to get the tube because all our attempts to increase his weight through oral feeding seemed to fail. We spent two weeks in the hospital.

March

IMG_7793Miguel had his first major seizure. It was the first of a series of seizures. That first one lasted for 20 minutes which caused him to have respiratory distress. We were told he stopped breathing on his own for 40 minutes.

August

Miguel’s first time in the ICU because of respiratory distress and seizures. His anti-seizure medicine didn’t seem to be working in putting his seizures under control.

 

October

21034355_10155567308747567_8243368482170383524_nMiguel’s first time to be admitted to the hospital three times for a week each. We spent more days in the hospital than at home during this month. I started feeling depressed and it was my first time to feel so helpless.

November

Miguel’s first time to be seizure-free for a month (thanks to Topiramate!). Though he got sick with flu, he didn’t have any seizures.

December

Our family’s first time to experience some normalcy in our routine. Miguel’s been gaining weight steadily and he’s not had seizures for two months.

The past year truly tested our faith and conviction. But thanks to all our loving friends and spiritual family, we were able to pull through. One Bible text that guided us was what’s written on Psalm 55:22: “Throw your burden on Jehovah (God) and he will sustain you…”

We’re on to 2018. We are hoping for beautiful “firsts” this time for Miguel and our family.

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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.

 

 

 

 

 

 

 

Spiritual Thought: “Victim of Circumstances or Victor Over Adversities”

Blog victim or victorA “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.

 

 

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

 

the benefits of

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?