About this blog and the blogger

Blogger's Background
I'm not a doctor, or a therapist, nor an expert on any of the medical issues I talk about here. I'm, however, the mother of a child who has all the medical issues that I write about.

Blog's Sources:
Most of the things I talk about have no source cited. The reason is simply: I didn't read X or Y somewhere specifically. I got to X or Y conclusion by reading many things, in many places, talking to Patrick's doctors, working with Patrick's therapists. Helping Patrick myself. A statement on any given post was most likely the conclusion I drew from all these things combined.

Advises:
I advice you to try anything that is safe if you think it would help your child. The point is to try different things and to not give up. This whole blog is based on the experiences we are living by having a child with OMA and developmental delays. We have tried, failed and succeeded at one thing or another, and I'm passing on to you those very own experiences.

Advertising:
When I talk about products, I often link the products to Amazon.com. The reason is because Amazon sells about anything we can think of, and has reviews from buyers, and usually has lower prices. Being that said, I rarely buy a toy from Amazon. But I can't link the toys to Goodwill, consignment sales, or craigslist, where I buy most of the toys my children have (talk about recycling and saving money!). So if I suggest to purchase a toy or a book, or any product or service, please know that I'm not being remunerated by the company or the seller to promote its product.

About the posts:
All the posts I have written can easily be searched by date and topic. On the top of the left hand side you can find the archives categorized by month. If you are looking for a topic in particular, let's say, hypotonia, you can click on the word "Hypotonia" under Labels. That will take you to all my posts where I talk about hypotonia.

Most of the posts are single posts, but I also have "series" (Overcoming Low Muscle Tone and Overcoming Behavior Issues, as of today) where I write a number of posts on a specific topic. For example, the Overcoming Low Muscle Tone series consisted of 7 posts with advises on how to help your hypotonic child. However, I make mention of hypotonia in other posts that are not part of the series (as of today there are 16 posts total on hypotonia, including the posts in the series.)

There are MANY things I leave out on the posts. I realize that if I got into too many details I would end up writing a book. So I try to keep it short (sort of) which takes me to my next point:

Contact:
If you feel like you are left with more questions than answers after reading one of the posts, please feel free to contact me, I would love to answer any questions you may have about our journey. Also, I would love to get feedback, and more important, I would love to hear your story. I want to share notes, hear what is working for you and what is not. Maybe your child is older and you can tell me where he is at, so I can get a better idea on what to expect. Maybe your child is younger and you have so many questions, but little to no answers. Please know I will be happy to help you any way I can.

Language
Please note that my first language is Spanish, so good chances are that you will find a misspelled word or two in many posts. I'm trying my best to not make mistakes but I still struggle with English, and I hope to get better at it the more posts I write.

Also, you may notice that sometimes I refer to your child as "he". There are two reasons: Hypotonia, Speech delay, and Oculomotor Apraxia are more common in boys than girls. Also, this blog is based on my child's journey, who is a boy.

Purpose:
I started blogging about these medical issues primarily due to the lack of information on Oculomotor Apraxia. I figured there had to be other parents with the same problem, wanting desperately to know more about the subject. So I took on the task of documenting our appointments, advising based on our experiences, informing what I had learned from the doctors, therapist and books, and telling our story.
After I had written a number of posts, I found myself reading more and doing more to help Patrick, but not only to help Patrick, but also to have something to write in my blog. So writing this blog is not only helping parents out there, but helping me help my son.

Disclosure:
One year ago today, I started writing this blog. It's intended to be weekly, but at 36 posts, well, I wrote more like every 10 days. I'm not sure for how long this blog will be live, but I don't expect it to be for years. Even though I love writing, I also want to respect my son's privacy. I don't think he will be too thrilled to have all his medical issues and personal information exposed to his friends -when his friends are able to read and get access to the internet, that is. I think when that time comes, that's when this blog will have to be taken out of the public eye. In the meantime, I hope I can help as many parents as possible to get information about OMA and developmental delays, and hopefully help them be inspired by Patrick's journey.

To the mothers who haven't yet heard "I love you"

I want to celebrate the mothers of children with special needs. After experiencing what is to have a child with developmental delays and a rare disorder (OMA), I have learned to understand better what you endure. I have a unique respect and admiration for all of you, specially the ones that have children with severe health issues, and so have to keep it up even harder. You are all amazing women, and only you have taken motherhood a step further. Truly, love is at its finest every single time you handle each obstacle as an opportunity, with your child's happiness as your only goal. Even though most of us haven't yet heard "I love you," please know they tell you so, every time they smile.

Below, two of my favorite poems dedicated to special moms like you.

To the mothers who haven’t yet heard “I love you,”

To the mothers who do not yet have a name,

To the mothers who know what it is to believe in your child

when it seems like no one else does,

To the mothers who are interpreters,

To the mothers who are their child’s voice,

To the mothers who have had to become the expert,

To the mothers who do not take no for an answer,

To the mothers who stay awake every night worrying about what is to come,

To the mothers who never let their child see them cry for them,

It gets better.

“My doctor told me I would never walk again.  

My mother told me I would.  I believed my mother.”

Wilma Rudolph

*

Did you ever wonder how mothers

of special needs children are chosen?

Some how I visualize God hovering over earth

selecting his instruments for propagation

with great care and deliberation.

He passes a name to an angel and smiles.

 "Give her a special needs child."

The angel is curious.

"Why this one God? She's so happy."

"Exactly" smiles God.

"Could I give a handicapped child

to a mother who does not know laughter?

That would be cruel."

"But has she patience?" Asked the angel.

"I don't want her to have too much patience

or she will drown in a sea of self-pity, and despair.

Once the anger and resentment wear off,

she'll handle it.

Yes, there is a woman

I will bless with a child 'less than perfect. '

She doesn't realize it yet, but she is to be envied.

She will never take for granted a spoken word.

She will never consider a step 'ordinary'.

When her child say's 'Momma' for the first time,

she will be present at a miracle and know it!

I will permit her to see clearly the things I see

-ignorance, cruelty, prejudice -

and allow her to rise above them.

 She will never be alone.

I will be at her side every day of her life

because she is doing My work

as surely as she is here by my side."

"And what about her patron saint?"

asks the angel, his pen poised in midair

God smiles, "a mirror will suffice.""

Erma Bombeck

Thank you for being your child's best advocate. Happy Mother's day!

Finding a title, and what is this blog about.

Hi!

I'm so excited to finally start my own blog. Ever since I became a mother I had the intention to start a blog  with the idea of posting pictures, videos and accounting Patrick's (and future children's) milestones for the family to see. Soon after, I found myself with little free time, so Facebook was good enough to keep my family and friends up to date. Months later we found out that Patrick had few physical disadvantages and with that I also realized that there wasn't much information online about his "conditions", and whatever I found, wasn't too promising about the overall progress or accomplishments my son would have.

Almost a year later since his diagnosis (Oculomotor Apraxia, Hypotonia and Pronation), I'm happy to say that this has been a better journey that it was ever portrayed to us -even by the doctors! With the extremely joy I feel to finally see my son walking (he is 21 months old) I felt the urge to start the blog to tell the world (or the 3 readers) that I'm confident that children with similar disadvantages can do anything and everything they want -it will take a little extra time, and/or a little extra work, but they will do it!

As I acknowledge this hasn't been nowhere near as difficult as it would be if I had a son with a chronic  illness or severe developmental and cognitive delay, I can also say this hasn't been as easy as it is for parents whose children are able to accomplish their milestones "on time". This experience has been filled with doctor appointments, evaluations, tests, therapies, ups and downs, and lots of prayers and hope from my husband and myself, and hard work and courage from my sweet son.

I will try to post everything from how I noticed the developmental delay, to diagnosis, to treatment in weekly posts. Finding the name for the blog wasn't an easy job. I wanted to say so much with the title, but it seemed like everything that came to mind was already taken by another blogger (Trust your mommy instincts, Growing strong inside-out, A tale of hope and perseverance...) I guess is my fault for being too late in the game! But then I asked myself, what is what I really want to tell people with this blog? I want to say that Patrick can do it. He can because the challenges are ridiculously minimal. With his perseverance, the love and care of his parents and the mercy of God, he is Overcoming Tiny Obstacles one step at a time.