Tuesday, April 26, 2011

Egg Hunt

On Saturday, Esther-Faith went to a special egg hunt put on by a local community service organization. There were beeping eggs for the eyesight impaired. There were eggs on benches for the children who couldn't reach the floor. And there were eggs EVERYWHERE for the kids to pick up. It was a decidedly slower egg hunt than others we've been to over the years, but Isaac connected with one of Esther-Faith's favorite preschool friends and helped him pick up eggs. And Isaiah did his best to convince Esther-Faith to pick up eggs.

Although, she was only interested in the pink ones.

Wednesday, April 13, 2011

*Heaven's Very Special Child*

I don't know if this has already been posted in here or not? But I thought I'd share this poem... It's beautiful!!


Heaven's Very Special Child

A meeting was held quite far from Earth!
"It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,

by Edna Massionilla

Tuesday, April 5, 2011

So this is life...

Hi guys! I know it's been quite some time since I have posted in here!! I just haven't had any mojo! I wanted to share my latest blog entry with y'all...


That seems to be the perfect word to describe life right now...

Everything just seems to be at a stand still lately. I can't help but feel myself getting jealous. I'm happy but jealous. It seems like every time I think we are getting somewhere, something else happens that pushes it back or stops it. I want my boys to have the best there is for life to offer for them. I don't know how to do that though when I can't give them myself completely...

I hurt for my child & for the things that he could be doing right now, that he should be doing. But because of sickness & other issues it all keeps coming to a halt. I want my little boy to be able to do more. I believe in him. I have to grown to expect these sudden halts in life so I sit and wait for the next one to slow us down.

It's funny because things that used to be important & mattered to me, no longer even impact me. And, what I thought would never effect me or take hold on me, does. Having a child with Special Needs changes everything... Stupid, petty things are no longer important. You get to a point where you find yourself just hoping for a little bit of peace in the world. You find yourself being connected with people that you would have never even approached before. You gain a new perspective on life. I have found that I fall in love with the children who have tough situations going on in their life, whether it's another Special Needs child or a completely different situation. It's almost like your heart becomes softened, almost even broken sometimes.

It opens up a whole new world. You are forever changed.

When tragedy strikes another family, like the loss of a baby or fear of a life-threatening sickness... Even though you don't understand completely what they are going through, you can't help but feel like you're being pulled closer, emotionally towards them. You don't understand what it's like to be in their exact shoes but you can understand the emotional aspect of things that they are going through. You sit there wishing that you could do more for them... Wishing that there was some way to make it all easier for them...

I have grown to loathe the statement- "Everything happens for a reason." I no longer believe that. And, honestly to hear someone say that to me regarding my son, makes me just want to scream. I can only imagine how someone who has lost a child would feel when they hear that... I don't understand things in life & I know that we're not supposed to but sometimes I just wish we knew why. Why God does what he does...

I believe that I was chosen to be a parent to a Special Needs child for a purpose. I know that because of my boys, I am a different person. I know that our 2 boys were given to us and because of them I want to make a difference in the world...

"God grant me the serenity to accept the things I cannot change. Courage to change the things I can. And wisdom to know the difference."

Monday, April 4, 2011


"Look mom, I can do a wheelie!"

We were in the men's department at Sears. Trying desperately to find some blue jeans and other clothing to fit the rapidly growing 14-year-old boy. We were having marginal luck. Isaac and Esther-Faith were bored. Really, really bored.

So, she learned to do a wheelie.

My heart sank to my stomach--or maybe it lurched into my throat. Either way, I instinctively reached for her chair to keep her from tipping. She wheeled away from me and tipped back again. Looking over her shoulder, laughing, her red curls tousled in the breeze. Her tippers caught her each time, and kept her from tipping all the way back.

She did it over and over and over again. To the delight of her brothers, her father, and a whole audience of shoppers and onlookers.

Tim loved it. Isaiah loved it. Isaac loved it.

I loved that she was learning something new--not so much that it was tricks and tips in her wheelchair.

That is how she rolls, though.

That is how she rolls.

Saturday, April 2, 2011

So Blessed

Some of you might not know that I am Program Coordinator at the Spina Bifida Association of Kentucky. I started there a year ago (one year and two days ago, to be exact!), and I couldn't ask for a more perfect job. It doesn't pay much, and I don't get any benefits, but the perks of the job are priceless. I'll give you an example.

One of the things I do is plan classes for families, and recently I had a Bowel Management Programs class, where a nurse explained how to help your child achieve healthy bowels and social continence with diet, enemas, surgery, etc. At that class, I met a woman named Becky and the woman and child she is hosting from Ukraine. The 6-year-old little girl, Mashiya, has Spina Bifida and is in Kentucky temporarily "to get her feet fixed" (not sure if she had a surgery or just casting). While she's in the States they want to get her all the resources they can.  Becky took notes about the bowel management programs, and she said she would translate it all for Mashiya's mom later that day.

At the end of the class when the nurse asked for questions, Becky (who has no reason to be familiar with Spina Bifida and only recently met this child) asked if there were any management programs for the bladder as well, because Mashiya can't control her bladder. For a minute there was silence, as we were all realizing that this little girl is probably not seen by a urologist and she and her mom know nothing about cathing programs. There were several nurses in the room, and the general consensus was that although it might be possible for Mashiya to one day become socially continent with bowel management, cathing, and medication, that was beyond the scope of what they could do during the short time she's here. We don't know if the medications and supplies are even available there. That's when Becky said, "So ... this means she'll be in diapers the rest of her life." A nurse answered, "Yes."

I've been thinking about Mahiya ever since. This little girl is so pretty and appears to be smart and social. But will she be accepted in Ukraine as an adult who wears a diaper? We often worry about our children not being accepted, but we really take for granted how much people with disabilities are accepted in the US (I know not all of you are American, but that's the perspective I can speak to). It is not so in other parts of the world, where there is really no question about whether you will terminate a special needs pregnancy--it is standard, expected, and almost mandatory--and there are still countries that provide "comfort care" (as in, keep them comfortable until they die instead of treating) to children who somehow slipped through screening to be born with Spina Bifida. Where there are few people with disabilities, it's even more difficult to gain acceptance.

After the class, Becky asked me if I could help her find Mashiya a wheelchair. Shriners supplied her with crutches, but she would need a chair for distances. They were also looking for an adaptive trike for her because she was using one in therapy and absolutely loved it. When I got back to the office, I dug through our storage and found a small wheelchair. After talking with Mashiya's therapist at Shriners, I decided I need an expert to measure the chair to see if it would fit, so I took it up to the therapy center located in the same building as our office. I just so happened to get in touch with a therapist named Melinda, and after I told her who the chair was for, she pulled out a picture of Mashiya she had on her desk!!! It turns out Melinda has been on mission trips to Ukraine, and somehow she knew of Mashiya and was trying to help her come to the states for her foot procedure. She didn't know she was already here! Talk about a small world. Melinda told me about her experience in Ukraine, and that even Kiev is not at all accessible, and people with disabilities are generally not accepted or valued.

Well, the wheelchair was too small, and so was the chair that Melinda found at her therapy center, but Shriners eventually found Mashiya a chair. On Monday of this week, Becky called me and said Mashiya and her mom are going home next week, but they would still like to find her a bike to take home because she enjoys the one at therapy so much. SBAK just happened to have a bike just her size that another family had donated a few months ago! They were thrilled!

So, back to the perks of my job. Today I got to deliver a bike to a little girl who loves to ride and otherwise would never own a bike she was able to ride.

Becky and Mashiya's mom wanted to meet Nate, and as I was taking Mom (I don't know her name) over to meet him, she asked me, "Do you do this cathing?" It broke my heart and gave me hope at the same time that she's still thinking about this and following up on it. It makes me wonder if they all went back to Becky's house the night of the class and looked up information about cathing and asked to see a urologist to talk about their options. I don't know. I did tell her to stay in touch and I would help any way I could.

Mashiya and her mom go back home next weekend. They are taking home with them a wheelchair, crutches, a bike, some sparkly new shoes for Mashiya, and who knows what else. But I think they are also taking home information and hope they wouldn't have found otherwise.

But they've also left something with me. We get so caught up in what our kids can't do and how busy our therapy schedules are and how unfair it is that we have to see all these doctors and cath and whatever else, and we totally forget how incredibly blessed we are.

I cannot even express how grateful I am that Nate was born in the time and the place in which he was born. 50 years ago, or in another country--Nate's story would have been totally different. Fetal surgery still seems like it belongs in the time of robots and flying cars to me, but that was available to us. We have resources that many would kill for--Nate rides a horse and swims and rides a shiny red bike and goes to a school that accomodates him.