Friday, December 20, 2013

Worth It

My heart aches today. It's not often that I get emotional about controversial issues. I figure everybody has the right to their own opinion. But THIS? This just sucks the life right out of me. 

I know I've posted a lot about the hard days; especially since Lexi's diagnosis. I'm not sorry about that, but I don't want you to get the wrong impression. 

Yes, I have two children who need more care than most. 

Yes, the hard days take precedence sometimes.   

Do I ever wake up and wonder why God chose me, of all people, to be their Mama? Absolutely. 


Do I ever wish they weren't here? Sweet Lord, absolutely NOT. 

It's true that we didn't know about either diagnosis beforehand. We opted not to have prenatal screenings with either pregnancy. 1) Because of the invasiveness of the procedure and 2) Because it wouldn't change the outcome.  

In the aforementioned article, the parents of Oliver (who is 5 years old now, by the way) said that if they had truly known ahead of time, they would have terminated the pregnancy. In other words, if they could do it over again, homeslice and her husband would've purposefully ended Oliver's life. 

And, maybe even more disturbing, is that more than one person agreed with that statement. 

You can argue that this has nothing to do with whether or not Oliver's parents love him. I would disagree with you with my whole damn heart. You cannot both love your child and quote "want him terminated." 

Forgive me (or don't) for the way this may come out... 

But praise God Benjamin and Alexis are mine. Much like when I posted about the way children with disabilities are treated in other countries, I feel so beyond ecstatic that I am able to provide a safe and healthy environment for two very, very special kids. 

Though some days are, inevitably, more difficult than others... 

My children are my life. And life is always, ALWAYS worth it. 

One day; one sweet, blessed day... Things will change. 

"No matter what stage of development, no matter the level of physical or intellectual abilities, no matter the race or gender, every human life has dignity and should be nurtured and protected. To claim any child's birth as 'wrongful,' or that having a disabled child is a 'tragedy' as the Valley Medical Center's statement declared not only rejects the inherent dignity of little Oliver, but of all human life."

Monday, December 2, 2013


I love the ocean, but it can also be an intimidating environment. I grew up snorkeling on the east coast of Florida. With the help of my friend, James, I learned a lot about various sea creatures and ocean life. How anybody can spend hours looking through the lenses of plastic goggles at brilliant colors and intricate detail and not attribute such beauty to a Creator, is far beyond me...but that's beside the point.

More than once while snorkeling, I would take a deep breath and dive down to get a closer look. Also more than once, I would underestimate how far I had actually gone. Turning around only to realize I had to hurry before I lost what oxygen I had left in my lungs, the ocean's top seemed to just get farther and farther away until it felt like I'd never reach it. Sometimes the beginning stages of panic would set in and life may or may not have begun it's movie reel in my mind. Sometimes someone would reach their arm down until it was the only thing I could see. I'd swim and swim until I finally felt the mighty, outstretched arm waiting for me on the other side. I knew I had made it. I knew I would be okay. 

I wouldn't say I've reached the surface yet. Life has gotten a little easier since the move, but I wouldn't call it fantastic. Some days are easy. When the babies are in good spirits; when there's not a whole lot to worry about. We have more good days that bad now, but I wouldn't call it wonderful. Maybe just mildly okay.

Truth is, Cystic Fibrosis and Down Syndrome are still in the constant forefront of my mind. I'm constantly torn between acknowledging their differences and ignoring them completely. I've said that before about Down syndrome. I feel like maybe that's a little easier to ignore. Like I've said, Ben is healthy. Other than a few therapies throughout the month, we really don't have to worry about him. Lexi's CF is a daily thing. Enzymes, doctor appointments, constantly checking her breathing and bowel movements. There's not a break with CF. There's never a time that things will "level out."

And if we're being honest, I don't feel like I fit anywhere. I get together with friends and, inevitably, we talk about our children. They talk about their recent milestones, and I just sit quietly. I don't feel like anybody gets what I'm going through. I mean, how many people do you know who have two children of their own with special needs? It's not like there's a club for mom's like me. Sure, there are organizations for both CF and DS; I get that. But really.

I know the kind of village God has given me lately. I know how blessed I am by the friends I have. I know a lot of people love us and that's awesome.

Sometimes I'm okay with not fitting anywhere. I figure God gave me this story because He knew I would stand out. I know God's not done with me yet. I know I'll reach the surface soon. I can see it. I'm just not there yet.

I was going to apologize for the lengthy post this time. But nevermind.

With all that said, the good news is: Happy's out in full force this time of year! Home-slice spread her jolly "Ho-Ho-Ho's" all over our new place and I'm in love. Christmas is my favorite. Like Elf on steroids, favorite. This year is going to be fun. Ben is old enough to be excited about lights and presents, and this will be Lexi's very first experience with such matters.

Now, excuse me while I sip from my Santa mug and bask in the fragrance of our Noble Fur.

It's a good day. Jesus loves me. That's all that matters.

Happy December!

Side Note: 
If you have little girls, you'll want to check out Little Bowtique! Lauren is super talented and has all her pre-made bows 50% OFF today for Cyber Monday! Which means, you won't pay more than 5 bucks for great quality hairbows! They would make awesome Christmas gifts! Alexis has several and she wears them on a regular basis. Happy Shopping!