Saturday, February 27, 2010

scarey geese

Amelia started howling in the back of the truck on Thursday. "Ahooo! Ahooo!! Ahoo!!!" "Baby, what are you doing?" "Ahooo! Ahooo!! Ahooo!!!" "Are you a wolf?" "No." "Are you a puppy?" "Nope!" "Well, Amelia, what exactly are you?" "I'm a Scarey Goose!!!" Of course! :)

I HATE seams on my socks and I found this on a blog I have GOT to check these out!! Especially if your kids whine about their socks!! I am definitely getting some for Elise and me!

Tuesday, February 16, 2010

The Truth of Parenting

I admit it. Being a mom of a child with special needs is exhausting. There is the physical additives of what you have to do to keep your kid safe. But there is a huge addition of the emotional weight of what you are living with, daily.

I admit to appreciating the poem "Welcome to Holland". I also understand why a lot of parents with kids of special needs find themselves despising it.

I do find Elise is a blessing. I would sign up for all of it again in a heartbeat. I love being her mother. I see life good ways. But I am the first person to say that I would love to be able to go to the bathroom confident that my house won't be destroyed in that 3 minutes. I wish that I could go to Kroger and not be nauseated by the stress that that initiates.

So many people put parents of kids with special needs in one of two boxes: the "good" parents who were blessed and rose to the occasion and the "bad" parents who struggle and are visibly burdened with the day to day.

I submit to you that neither one is true. I guarantee that the "good" parents are still struggling. I guarantee that those parents are still a little shell-shocked that they hit a numbers lottery and are cringing from hitting it again. Because they know it could happen. (Their friends think that God won't continue to test or allow anything else to happen...but that's just not so.) That they screen their friend's words from the supposedly encouraging words "I am so glad God blessed you!" "I love you and am impressed by your public strength" and away from "I'm glad it was you and not me".

I submit to you, that the "bad" parents are probably being more honest with themselves and the public that it is not easy. That they need help and support. That they want a day free of their added responsibilities. That they can't do it all by themselves.

I furthermore suggest that parenthood isn't quite as straightforward either. We see the great works of art surrounding the freshly scrubbed sleeping child in their mother's peaceful and beautiful arms. We never see the painting of the child with snot crusties on their nose and cheeks, throwing raw eggs on the floor or happily coloring on the walls...while their un-showered mother is in sweatpants, crying, as she runs 17 loads of laundry. Both are accurate pictures of motherhood, but we aren't so honest about our 11 pm desire to run away from home...

Parenthood isn't the bowl of chocolate-covered strawberries we hope it will's more the over or under ripe kiwi...kinda a gamble on the day to day taste, definitely needing to be peeled of some scary stuff...and when you get the ripe kiwi, you say it tastes just like the strawberries you hoped you'd have...

Parenting the special needs child is more like the coconut on a desert island. If you buy a coconut at the grocery, it is harder to open than a cement brick...if you finally do, it is disgusting and the "meat" is vile and you throw it away...figuring the $1.50 you paid for it was the cost of entertainment for your kids who thought it would be fun, but now won't eat it...but you secretly wish you spent it on a candy bar. On a desert island, the struggle to open it, was just life. The milk is nourishing and tastes like nectar. And the coconut flesh is sweeter than a Mounds bar.

Parenting a special needs child is exhausting. You have to do more than you thought you could. The trivial is lifted to the level of Olympian, and the successes in the boring, are the triumphs of heroes. But the joy is amplified as well. You will fight for every inch of progress, and glory in the journey, not just the results.

I believe that we should be able to get to that point in parenting all kids...but we forget...we are human...

Parenthood isn't like the picture books. Parenthood is scary. Parenthood is beautiful. Parenthood has no answers, just a willingness to ask God for more than you are.

Monday, February 8, 2010

strep and "bathrooms"

Today we went to the pediatrician. Again. Elise started running a fever on Saturday AFTER Ethan's folks arrived from 2 hours north. She randomly does this...usually it resolves itself fairly quickly, with no real explanation.

Of course, this time she runs the fever through today. Last night she tells me that her ear hurts. And her tongue. And her wrists and feet. SO! I had concluded that she had maybe an ear infection, and maybe body aches...and maybe a sore throat.

Elise has never been able to tell me what was wrong before. It is usually a guessing game much like Charades. Even with her descriptions (which for her was much like a soliloquy), it wasn't much better.

Well, she has strep. We have NEVER had strep. Not me, not any of my kids, not my husband, not my parents or brother! NOBODY! So imagine my shock today that she tested positive...and now I have another germ to be paranoid of...but I never realized that strep involved sore feet!!

Now, I tell you this to explain why we spent several hours in the pediatrician's office...5 minutes after you get there, they are asking for snacks. 10 minutes after arrival, they are asking to go to the bathroom. And so we go...and again...and again...because what says fun, like a public bathroom where lots of sick people hang out? After our 4th trip to the bathroom in 20 minutes, Amelia looks at me and says "This is not a bathroom. This is NOT a bathroom!" I respond with as much interested as I can arouse, "Why do you say that Mimi?" "Because it is not a bathroom! It has no bath!!! NO BATHTUB! AND YOU CAN'T TAKE A BATH IN THE SINK!!" Well, you certainly can't argue with that! :)

Friday, February 5, 2010

February - Heart Health Awareness Month

February is Heart Health Awareness Month. And as Elise is nothing if not thorough, this is the month she had open heart surgery.

It was 7 years ago day before yesterday that God placed the most amazing words into Ethan's mouth.

He looked at me and said, "Regardless of how this turns out, you know that if God had called down to you and said, 'I've got a baby I need you to watch for me for a little bit, could you?' You'd say yes."

It was 7 years ago yesterday that I was driving the icy mountains of Jellico, TN, wondering if my fears of Elise's open heart surgery were groundless...that we would die in the car due to losing control on the ice.

It was 7 years ago today that Elise and I spent all day at Cincinnati Children's Hospital doing paperwork and all pre-op appointments and searching the Bible for verses that would keep me at peace and promise hope.

Those that I held tight to were: Matthew 8:13, 18:19-20; Psalm 34:4, 42:8; Mark 5:19, 9:24, 10:16, 10:27; Luke 5:26, 8:39, 8:50

It was 7 years ago tomorrow that Elise's skin went from waxey white to angelic roses and cream. She underwent just under 6 hours worth of surgery by Dr. Peter Manning to put her heart back together again. It was only supposed to take 3 or 4. But went they got in they found so much bigger holes than they expected (and more of them), and a "refluxing mitral valve"...that they said that for all intents and purposes she was probably operating with only 1/2 of a heart.

It was 7 years ago that we discovered that Elise processes drugs different than everyone else. That she was still in pain with morphine, but felt all but healed with Tylenol.

It was 7 years ago that I was given my baby back to me the first time. And I discovered that the Downs just wasn't that important. That my baby was a bigger gift than I had even realized...that God was good, no matter what.

Thursday, February 4, 2010

Valentine's Day

My whole life...ok....My whole adult (ish) life I've never understood those people who "hate" Valentine's Day. What is there not to like??? You tell those who you love how special they are. Period. How does this make a day where people get shrewish and hateful?

As my life has progressed, I've asked and heard some reasoning...most of it can be put into a nutshell. It has been a romantically based. It isn't Valentine's Day if you don't have a sweetheart. And furthermore, if it is not the most romantic and thoughtful and sweet day of the whole year, then even if you have a sweetheart, it is a failure.

Thankfully, as I was growing up, Valentine's Day was kinda my dad's thing. Almost all the other holidays were my mom's push for traditions, (which were fantastic) but Valentine's was when my dad was the king of the day. He would bring my mom roses, 3. One yellow one for his love for her. One pink one, for me. And a deep red rosebud, for my brother. He would make sweet handmade cards for us all and get tiny ceremonial presents (I got little pom-pom animals). He would make up adorable rhymes to make romantic the practical items my mother asked for. I best remember the poem he wrote for a vaccume that my mother insisted that she needed...something about "sweeping her off her feet". Cheesy, I know, but he totally meant it.

So. When Valentine's after Valentine's went by without me having a sweetheart, I didn't know to feel sorry for myself. It was something I wanted, mind you, but it wasn't the be all and end all of Valentine's Day. The be all was making sure my family and friends knew I loved them and I was thankful for them...It was like the Thanksgiving Day of People in My Life.

So when we (my sweetheart, Ethan, and I) end up not going out on Valentine's Day (sometimes it happens on the day, but let's face it, it's real life and things happen), but 3 days later or 4 days before...or he gets me flowers that are a waste of money...or I find my Valentine's Day card in his car floor board 5 months later, it's annoying, but okay...because the words are said over Ramen or homemade steak or take-out...and my kids get tiny gifts and are told how special they are. What is important is the time out to make sure that "I love you" is said, On Purpose. And I still do. So there.

Another Late Night Tatoo Thought

There are several of my friends on Facebook that are potty training their girls right now.
It took FOREVER to potty train Elise....and it was followed pretty closely by Amelia...I felt like I spent YEARS sitting on the floor of the bathroom...reading, singing, whatever it took!

One night, late, I was watching Miami Ink...and there were several stories of people getting tatoos. They were all making "memorial" tatoos of certain periods of life...and I decided that if I went to a tatoo parlor that night I was going to have to get a "training potty" tat.

So, that's my deep thought for the night! :)

Monday, February 1, 2010

sometimes, you just don't know.

So, I have some dear friends that I haven't talked to in some cases, years...that I can pick back up again like no time has passed. I have some friends or family members that have become my friends without me realizing it. I have had people in my life who were struggling in dark places, really fighting demons who keep it to themselves...who I honestly thought I knew. Sometimes when these things come to light, I am angry. Genuinely angry, simply because I love them and wanted to love them and support them when they needed it.

These moments come and often humble me. I realize that I was wrong. I realize that they don't know what I struggle with either. I realize that these are the things that really only can be known if you share. The bond comes with "bearing each other's burdens". But you can't assume a burden, without someone giving one up. You can't be given freedom from your burden, even from God (!), without willingly giving it away.

Sometimes, you can't help. Sometimes, you want to help, but the sympathy weighs just as heavy as the problem itself. Sometimes saying it out loud can hurt as much as the situation does. Sometimes, you just can't help. But God can. So, I suggest to you...pray for your loved ones. Even when they make you crazy, especially when they make you crazy...when you think their life is probably is one has no need for prayer. So dig out your army duds...and become a prayer warrior...even for those you think don't need it. They do.