This is the complex story of a mom, military wife, and advocate for special needs kids. We're living, laughing, loving and through it all knowing well that life is not always a bowl of cherries. Sometimes it's a bowl of mixed nuts.
Today I'd like to say a few words about this man. Isn't he cute? He belongs to us. Sometimes I still can't believe he's really ours.
Today is his birthday. We have so much to celebrate! Here's where I gush over my love. . .
He is my constant. He never waivers in his devotion to me.
He makes me laugh because sometimes he is just silly.
He's the most intelligent person I know but he doesn't think he is so he's not a "know it all."
He's extremely interesting to talk to. This would be why my kids would rather ride home in his car than in mine because they want to talk about all those things that mom doesn't know about, like intricate details of battle history and politics.
He's a great dad! He's very "hands on." He changed as many diapers as I did. He cleaned up as much vomit and snot. He cooks all the kids favorite foods. He washes their laundry and mates their socks. He reads to them. He plays with them. He is the "fun parent."
He supports me in anything I want to do. He really thinks I can do anything I put my mind to and I appreciate that.
He is taking ballroom dancing with me. . . just because he knows it makes me happy.
I'm pretty sure that the day my husband was born, the world received a gift. Oh I love him so!
The month is drawing to a close. I managed to make it through my commitment to blog everyday. Some of my blogs weren't fabulous but I think I did pretty well since it's been so long since I did this all the time. Tomorrow is Matt's birthday, although we aren't celebrating it tomorrow because Tuesdays are busy. My plans for tomorrow are as follows: Nurse comes to take care of Willow at 9. I clean house for a friend from 9:30-11:30 or so, come back and pick up the kids (and nurse) for an appointment with the orthopedic surgeon. We'll know tomorrow afternoon whether or not Willow is going to get her cast off and wear a removable one for a while. Hopefully she'll be able to bear weight on her foot soon! After her appointment, I will be picking up the rest of the kids back at home and running them back into town for dance. We have musical theater, hip hop and tap tomorrow night but we also have a choir concert at Noah's school at 6:00 so we'll probably have to skip the tap class. There goes my exercise for the day.
I can't believe that January is almost over but it's because I have a lot of days like the one that's planned for tomorrow. Time flies when you're busy and I'm REALLY busy. Sometimes it's stressful but for the most part, I LOVE MY LIFE!
It's January 29, 2012. Eight years ago today our family made the hardest decision we've ever had to make. We had to let our babies die. Brynleigh Belle and Victoria Grace were born July 25, 2003. They were 2 months early. They were tiny. They were broken. They were a miracle! During the 6 months prior to withdrawing life support, we watched helplessly as they struggled to survive with the conjoined body they were given. We listened to their shared, malformed heart beat through the monitors, heard the swish and pump of the ventilator, the beeping when their blood oxygen levels were too low. It was constant.
They lived and died in the Neonatal Intensive Care Unit at Wilford Hall Hospital in San Antonio. Natural light could only be seen through the window for part of the day. It would never be enough to replace what they missed of the world outside. They never felt the sunshine's warmth on their faces or the wind blowing across their pink cheeks. They never walked barefoot through green grass or felt sand between their toes. They never were able to smell flowers or bread baking or fresh salty air of the sea. We'll never know if they would be girly-girls and like pink and princesses and flowers or whether they'd be tomboys who liked to climb trees and play in the dirt. We have no idea if they'd like to sing or do crafts or ride bikes or swim. We will never see them dance or hear them giggle.
Even their cries were silent.
While even now there is grief for those lost moments with them, more than that there is gratitude.
My darlings, Bryn and Tori,
As I look back on my life, and remember you, I observe what some would see as hardship. I can only call it a blessing. It was an honor to know you, even for the short time we were together. Because of you-- your birth, your life, your death-- I am forever changed. While I prayed that God would save you, heal you, let you live, at least give us more time. . .He, in His infinite wisdom, had a greater plan for you. . . a purpose that we never could have anticipated. You see, someday when we all meet again, I will tell you about the brother you never met. His name is Daniel. He was a little boy far away in another country that needed a family.
Because I loved you, I could also love him.
Then I will tell you about the sister who was on the other side of the world waiting to belong to someone. Her name is Willow. She has been sick her whole life just like you only she went through it all for years without a Mama.
Because I loved you, I could also love her.
We learned we were stronger than we ever thought we could be. . .because you were born. We saw you struggle and learned so much from you. . . because you lived! We have two children in our lives now that we never would have known. . . because you died. We are stronger, wiser, and better people because of you. I can only say thank you. Thank you for teaching me about compassion. Thank you for teaching me how to love.
Loving you until I see your beautiful faces again in Heaven, Mommy
I'm thinking about entering this writing contest. My friend, over at momfog, suggested that it might be fun. It does sound fun. I'm definitely interested just to see if I could win something. My problem though is not writer's block, exactly. It's having too much stuff to write about. Here's what the writing contest is all about, in case you didn't feel like clicking the link:
"Notes & Words is looking for the next great memoirist. We’re calling
for short personal essays about the challenges of caring for a child
(age 18 or younger), including medical issues (e.g., an accident,
illness or diagnosis) or emotional crises (e.g., a death, divorce,
breakdown) or one of any one of the more common parenting dramas (e.g.,
academic, social, athletic, epicurean). We welcome both humorous and
serious essays of up to 800 words."
I definitely have some material but who do I write about? All of them in one essay? It might be over 800 words. Should I write about the twins? Having a child with Asperger's? ADHD? Adoption? Take one of my blog posts and elaborate on it? Maybe I'm over analyzing. If I keep this up, I may talk myself out of it.
I'm getting older. I'm getting fatter. It's not as easy as it used to be to do things as it was when I was in my 20's. My friend Lauren (see picture at left) has decided that we should exercise together which is wonderful! It makes sense, she dances at the dance studio where my kids dance. We're in Bible study together. We live in the same neighborhood. Great, right? Except for one thing. She IS still in her 20's. I'm in my 30's. It hasn't been as easy as I'd hoped to get started. She's in better shape than me because she's a ballerina. She's got a goal in mind. I've just got this vague idea that it would be nice to be thinner and I know I should exercise but my loathing for anything that might make me break a sweat is an obstacle that is hard to overcome.
So yesterday we started with a quick upper body workout that left me feeling like I wanted to cut my arms off. Life without arms at all might be a better option since I can't lift mine anymore anyway. Today it was our Couch to 5K day. We started off walking for 5 min then running for 1 and then walking again for 1 and 1/2. I think we did that 8 times. I lost track because all the blood rushed out of my head and I nearly passed out. I could hear my heart pounding in my ears and there was no way to catch my breath. My legs were like jello and I thought I might die. All this extra work and I'm also trying to watch what I eat. It's difficult to do when exercise makes me want to eat a small farm full of delectable barnyard animals. Steers and pigs and chickens, OH MY!
What I need to do is find it within myself to change my attitude and just accept the inevitable. People who want to be healthy and have a body that's reasonably free from rolls of extra flesh, exercise. That's just what they do. Many of them even like it. I can't figure that out. . .but they do. So the question is: How do I bring myself from point A (hating that feeling of impending death when I exert myself) to point B (endorphin addiction?)
Today you met a child who has an invisible disability. He looks like a normal eight year old boy but inside of his beautiful, perfectly formed skull is a brain that is broken. It didn't develop properly while he was being formed in his birth mother's womb. This is called schizencephaly. Would you stare and whisper if it was his legs that were misshapen instead of his parietal lobe? If instead of a hidden part of his brain called the septum pellucidum being absent, it was his arms?
The tantrum that you witnessed was not just a child being a "brat." While you were staring at him and forming your judgments, he was struggling to maintain self control. He knows right from wrong and can clearly articulate that when he's feeling well. Today he had just left school where he had to hold it together for his teachers all day. He was tired. He was hungry. He had come back to his family where he is safe to show his struggles. He knows Mom loves him unconditionally. Mom is comfort. Mom is security. Knowing that after school is his hardest time, this mom had no choice but to take him to a doctor's appointment for his brother. After waiting to be picked up from school, being told he had to wait in the waiting room was too much for him. Being tired, hungry and bored pushed him over the edge.
While you were seeing a boy hit and kick his mother and yell and throw things, I, the woman who knows him better than he knows himself, was seeing progress. This child's half hearted thumps on my leg with his fist had none of the intensity of tantrums past. His screams contained no threats of homicide or obscenities. He may have kicked me but he did not object when I took his shoes away. He put his teeth on my leg but he didn't bite. This child who has been an inpatient in a pediatric inpatient psychiatric treatment facility 8 times in his short 8 1/2 years has been on 7 different kinds of medication at one time to keep him from hurting someone else or from cutting his own tongue off! Yet he never even talks about hurting himself anymore! He sleeps when he's supposed to sleep. He makes jokes. He laughs. He's a mere shadow of the intense, volatile, angry child he was even a year ago! He cares about his teeth and proper nutrition. He is affectionate and works hard in school. He has increasing empathy for others. At Thanksgiving when asked what he was thankful for, he announced "Jesus" without any leading.
So while I thank you, dear lady in the Dr.'s office waiting room for your offer to cut a switch off of a tree outside while he howled in frustration at my feet. Though it might have looked like my child "just needed a spanking," it won't be necessary. When my soft, calm words and consistent discipline fail, I'm wise enough to know my child just needs a safe, quiet place to be. When his daddy picked him up, he promptly fell asleep in the backseat of the car. Like a toddler who's had too much activity in his day, my "normal" looking 8 year old boy felt much better after a power nap.
I hope that in the future you will remember my son for whom I've often thought I should buy a shirt proclaiming "I'M NOT A BAD KID. . .I HAVE BRAIN DAMAGE!" When you see another child struggling, understand that not all disabilities can be seen outwardly. Even so, the struggle and the stigma are very real.
I was "talking" with an old high school friend of mine via facebook today. We were talking about babies first. She has a baby boy due soon and even though I am done having kids, I live vicariously through my friends. If it weren't for Matt's good sense, we'd have several more kids by now. She very sweetly complimented us on our "unique" family. . . "Yes, you guys sure have your hands full but you both are obviously such
loving parents to take on all you have. Your children are a blessing and
it seems like you have one great, happy family! I always love to see
pics!"
We do have a great happy family. In spite of all it's idiosyncrasies and dysfunction. I replied with a gushing discourse about how great my kids are but more than that, how wonderful my husband is and what a perfect partnership we have in our crazy life.
Matt and I have been through a lot. I don't know what other "normal" marriages go through but it seems like our last 15 years have been pretty nutso and really, the odds have been against us from the beginning. We did things wrong.
1) We were too young. I was only 20 when we got married. Not even old enough to legally buy myself some champagne to celebrate. Matt took me out for my 21st birthday in snow that was nearly waist deep and then made me scrambled eggs with cheese. Matt was only 23. Too young.
2) We didn't know each other long enough. . . or maybe know each other at all? I met Matt in June of 1996 when he was dating a girl I went to high school with. I was dating Matt's room mate. Things didn't work out in either of those relationships so Matt and I started seeing each other the first week of September of 1996. We started talking about marriage about 2 weeks into the relationship. He proposed to me by the middle of October (a month and a half later.) We got married October 29, 1996. Yeah. That was fast!
We then moved away from everyone I knew to get a fresh start in Arizona. By February, we'd left the frozen North for everything hot and prickly. We lived there for 5 years while Matt was finishing school. Two kids later, he graduated and decided to join the Army. I moved back "home" to Washington and lived down the street from my parents while he went to basic training, then AIT. When we finally were reunited as a family 8 months later, I realized that the man I'd gotten used to as my husband was gone. He'd been replaced by an evil doppleganger! By this time, I was 5 months pregnant with what I was about to find out was conjoined twins. (conceived on his Christmas vacation for all those mathematicians)
When I went into pre term labor, we were forced to uproot again a couple of months later and moved to San Antonio where we lived in The Fisher House. ( I just realized that we're in the video that's on their page. Check it out) We lived in a suite of two rooms and a bathroom for 6 months while the babies were in the NICU. Then they died. We moved again, this time across town while we struggled to adjust to life with empty arms.
Shortly after the twins died, we decided to adopt. We felt led to adopt kids with special needs so we adopted Daniel first. He has a congenital brain abnormality. A year and a half later, we brought Willow home. She has neuromuscular disease. Soon after that, Noah was diagnosed with Asperger's Syndrome. That's a lot of quirky kids in the same house! We've had to watch our kids go through hospitalizations, surgeries, therapies and appointments of all kinds. We've agonized over decisions for their health and well being. We've prayed. We've cried a lot of tears.
It hasn't been an easy road. In fact, its been a lot of hard work and a lot of clinging to an unyielding promise to love each other in spite of. . . In spite of trials, in spite of circumstances, in spite of bad attitudes and changes you can't stop from happening. Life is hard for anyone. It seems like we've chosen a more difficult path than some, yet God continues to bless us and provide for us. He shields us and goes to battle on our behalf. . . "But you, LORD, are a shield around me, my glory, the One who lifts my head high." Psalm 3:3
Daniel is now bathing completely by himself. He doesn't even need help washing his hair anymore. This is a huge breakthrough because it use to come with a lot of tears and stress and crying and screaming even when I had to wash it for him. He was so afraid of getting soap in his eyes! He even washes himself better than his siblings do most of the time. Generally speaking, he comes out smelling clean instead of like a wet dog like his brother does when he gets out of the shower. This, folks, is what I'm counting as a blessing for today.
We've got raindrops falling and thunder in the distance! A major storm is heading our way, according to the news. It doesn't look like that big of a deal from this image but they say there are tornado warnings in some counties. In any case, most of the time when a thunderstorm passes through, we end up losing power, at least for a little while. I'm trying to hurry up and get my blog posted for tonight before that happens. We've got our generator ready, flashlights and candles gathered. The dogs are inside and we're hunkering down to weather the storm.
I'm praying that no trees come down on our house tonight! Living in the woods like we do, that's always a worry. Especially since we had a close call right after we moved here. These pics were taken in the summer of 2010 when lightning struck a tree by our driveway.
This was a cherry tree that came down between our house and our dear
sweet neighbor's within a month of us moving here. We were the
fortunate ones. Notice that the top of the tree's branches just barely
brushed the siding of our house? It also came within feet of crushing our car. The other side of the split came down right smack on top of our neighbor's truck, crushing the hood and the cab. Poor dear sweet neighbors!
We've learned to take our storms seriously around here!
As football season is coming to a close, it's time to pay respect to my husband's all time favorite team. . . the 49ers. This is a group effort. Coming up with 49 reasons to love anything is no small task, but here goes!
1. It's their turn to win! The 49ers have been, well. . . let's face it BAD for almost a decade. We're glad to see them work their way back into the winner's circle.
2. Lilliana says: "They have their own math problem! 7 x 7 = 49ers!
3. Ronnie Lott: Toughest football player ever, broke his finger in a game
and had them chop off the end of it so he could keep playing.
4. Again from Lilli: "Tony Romo isn't on the team!"
5. Some of their best players are named Alex Smith, Justin Smith, Aldon Smith, and Reggie Smith.
6. They are the quintessential underdogs, even when they beat the 2010 Super Bowl winners, The New Orleans Saints.
7. Lilliana says "The recent game between the Saints and the 9ers was one of the most exciting games I've ever seen."
8. From Daniel: "They have the same colors as the USC Trojans."
9. They've had the greatest quarterback of all time on the team. . .Joe Montana.
10. The Ravens are going to beat the Patriots, coached by John Harbaugh and the 49ers are coached by Jim Harbaugh. How cool would it be to have 2 brothers playing each other in the Superbowl?
11. *The Catch*
12. They've had the greatest wide receiver of all time on the team. . . Jerry Rice.
13. 4+9=13, which is a pretty cool number.
14. Again, from Lilli: "They aren't Penn State."
15. They had the only full backfield inducted into the hall of fame.
16. Greatest 49er football coach, Bill Walsh, was compared to Darth Vader. Let's face it, that's cool.
17. They've been around for 66 years.
18. Their first owner died in the middle of the game but the team still came from behind to beat the Chicago Bears 21-17.
19. They've never lost a Super Bowl.
20. The current coach is a rookie.
21. They have Michael Crabtree on the team who was instrumental in preventing the #1Texas Longhorns from having an undefeated season in 2008.
22. Frank Gore suffered a season ending knee injury (tear to the ACL) in 2002 but has come back to have an illustrious NFL career.
23. 49ers pan for gold. Gold = money. Everyone loves money.
24. Alex Smith figured out how to score.
25. Their cheer leaders aren't ugly.
26. David Akers set the record for most points by a kicker in a season and most field goals made in a season.
27. California knows how to party.
28. They're "winning." (probably because they have Adonis DNA)
29. They are getting a new stadium in 2015.
30. They are the only football team with a number for a name.
31. Coach Jim Harbaugh is a local. He went to nearby Palo Alto High School.
32. 49ers lead the all time series with the Giants 18-17 which includes play off record of 4-3.
33. Frank Gore runs fast and he can catch.
34. Did you know that a 49er is a double handed trapeze skiff type sailing dinghy? It's been used in the Olympics every year since it debuted in 2000. BONUS! Thanks Erin for bringing that to my attention.
35. They've won 5 super bowls
36. Scored the most points in a Super Bowl. 55 against the Denver Broncos
37.
38. The Catch 1, 2, and 3 were all 3rd down and 3 yards to go.
39. West Coast Offense
40. They won a game in Chicago when it was -26 degrees
41. Jerry Rice, 49ers wide receiver from 1984-2000, still holds the records for career receptions, career receiving yards, career touchdown receptions, total touchdowns, career points scored, and consecutive games with a catch.
42. Denim was invented in San Fransisco.
43.
44. San Fransisco's Sour Dough bread is so good!
45. Alex Smith can really throw the ball!
46. Lilliana says "They are from California, where you can lay on the beach and then catch some nice waves."
47. Jerry Rice was the first football player to go on Dancing with the Stars
48. Fortune Cookies were invented in San Fransisco
49. If you don't cheer for the 49ers, your California choices are limited to the Chargers and the Raiders. Nuff said.
I am really tired tonight. Thursdays are busy days. So I was searching a few blog prompt generator sites to find a subject to blog about. I can't think too much. . . anyway, this one came up:
Are you happy? Why? Good enough for me. I love to write about happy!
First let me make a distinction here: I do not always feel happy. (of course not) I do, however always have JOY in my heart. Circumstances cannot steal joy away unless you let them. I choose not to let the things that happen to me steal my joy. For example: I choose to be happy in spite of the fact that I have no control over where I live. The Army moved from a very large city that I loved to a small town that smells funny most of the time. (swamp) If someone asks me if I'm happy here, I always say yes. Why? Because it is what you make it! I can be happy that my family is together, healthy (for the most part) and happy. I live in a beautiful home with a huge yard for my kids to play with. I have a few friends now. I stay very busy with Bible study and hanging out at the dance studio. My life has purpose and meaning. It's fulfilling. I know my worth. I'm happy because even though we don't have a lot of money, my husband makes enough that we can survive and I don't have to work a full time job. I have the privilege of being able to stay home and enjoy my kids. These are just a few examples but really there are so many reasons why I can say with sincerity "yes. I am truly happy."
I think I've been to 3 IEP meetings just for Daniel alone this year. Not because he's been bad. It's been a great year for him and his schedule has just needed tweaking a few times. Before we left Texas, Daniel was completely self contained. He couldn't handle being in a regular classroom at all. He was too aggressive, easily overstimulated and way behind socially, emotionally and academically. He hit and kicked other kids and he threw a chair at his teacher. I would get "incident reports" daily stating that they had to restrain him to keep himself and other children safe.
When Uncle Sam moved us to Georgia in the summer of 2010 we chose the town we currently live in because it was one of few school districts that still had a self contained class. Everyone is moving toward full inclusion here which is great. . . IF your child can handle it. Mine couldn't and I knew it. When school started here in the fall of 2010, Daniel was completely self contained because that's what his IEP said. After the first month, they started putting him in the regular ed class for 30 minutes every afternoon. That's all he could handle. Then they sent him to PE every day with regular ed kids for a while. He did OK with that. . . sometimes. That's as far as they could push him. When school started this year, it became apparent quickly that he was handling things better. He had pretty much mastered behavior in the self contained setting and in the regular classroom everyday with support. They were giving him more and more responsibility. He was walking from his self contained class to his regular ed class by himself. He remembered not to run in the hall or touch things that were hanging on the walls. He even found the right classroom!
I called the first IEP meeting this year to discuss how we could give him more freedom. He had mastered the more restrictive setting and needed more challenge! We added some time in the resource room, more time in the regular ed classroom, PE and all other special classes (art, music, computer lab, etc.) We also added recess, which I have to admit made me nervous! Yesterday we had another to discuss the recent psychological testing that we had done and how it applies to school. See more about that testing here. I wanted to get him back into the Sonday reading program which is Orton-Gillinham based. It's supposed to be a good program for kids who have neurological problems and dyslexia. He seems to have both. We also needed to discuss placement for next year. I was thinking maybe it would be better to retain him in the 2nd grade to give him more time to learn to read. When I got to the meeting though, I really didn't expect to hear what I did. Not only did his regular ed teacher say that she didn't think it was a good idea to hold him back another year but the team also announced that they were considering him for placement next year in an "inclusion" classroom. That means that he wouldn't be spending any time at all in the self contained class. His "homeroom" would be a regular ed classroom with special ed support. He would likely be going to the resource room for help too but no more fully restricted environment! This is HUGE for him. My son, the raging, angry storm cloud that had no self control a year and a half ago is now "together" enough to be considered for placement in a regular ed classroom? pinch me, I must be dreaming!
They did have some suggestions. They've been talking about making modifications for him because he understands the curriculum relatively well even though he can't read it. Some of those modifications might be scanning his worksheets into a machine that would read it for him, having a scribe write for him, etc. He has a long way to go but let me tell you. . . my baby has come SO FAR!
When I was in kindergarten, our class was a half day program. A five year old was either in "morning kindergarten" or "afternoon kindergarten." We sat in short chairs at tiny tables and did puzzles, played with play dough and cut and pasted pictures of things that started with whatever the letter we were studying that week. When it was time to put our toys away, we heard 3 familiar notes played on the piano and our teacher, Mrs. Walton, sang "Please clean up!" We sat on the floor "Indian style" and sang songs about popcorn popping on the apricot tree, April Fool's day and my personal favorite "I Told the Witch Doctor I was in Love with You!" We had the coolest teacher in the world! She was magic! She could tell what color a crayon was when you gave it to her behind her back, she had a ring that changed to a different color every day and she knew how to make lollipops grow on a tree! I have so many memories of kindergarten, even now. . .30 years later because she made it memorable.
I went to kindergarten twice. I was a very smart child so my parents had me tested for kindergarten when I was 4. That's me. . . second row up from the bottom, all the way over to the left. The one in the ponytails. I was little. I was the youngest in the class. I did well that year and went on to the first grade but I cried a lot and still needed a nap.
At 5, I went to first grade in the morning and then back to kindergarten in the afternoon. In this one, I'm in the back row. Second kid from the left. I was older, taller and actually belonged in kindergarten at this point. I got 2 wonderful years with Mrs. Walton. I thought I hit the jackpot! We all loved that lady! I assume that she's probably gone now to wherever all the best teachers go. I hope she knows how special she was to all of us and how much we loved her.
All I Really Need To Know I Learned In Kindergarten
by Robert Fulghum
Most of what I really need
To know about how to live
And what to do and how to be
I learned in kindergarten.
Wisdom was not at the top
Of the graduate school mountain,
But there in the sandpile at Sunday school.
These are the things I learned:
Share everything.
Play fair.
Don't hit people.
Put things back where you found them.
Clean up your own mess.
Don't take things that aren't yours.
Say you're sorry when you hurt somebody.
Wash your hands before you eat.
Flush.
Warm cookies and cold milk are good for you.
Live a balanced life -
Learn some and think some
And draw and paint and sing and dance
And play and work everyday some.
Take a nap every afternoon.
When you go out into the world,
Watch out for traffic,
Hold hands and stick together.
Be aware of wonder.
So there we were, sitting in the pew, enjoying the special music trio of our pastor, his wife and their son singing together. Suddenly on the screen next to the stage lights up. . . revealing a windows desktop computer screen. Then facebook pops up. There, on the screen in front of the entire church was MY face and some comments I'd made on my favorite time wasting social network. My friend Erin, (who was sitting next to me) and I both were kind of startled! We looked at each other and sort of laughed uncomfortably. I was frantically trying to remember if there was anything I'd said that I wouldn't want on the screen in front of church on a Sunday morning. Unfortunately, I was sitting too far back from the screen to be able to read the comments I'd made. The song the trio was singing on stage was a nice one but it was excruciatingly long waiting for them to finish while my face was on the screen. I began to sink lower and lower into the pew. As the pastor's wife sat down in front of us, Erin alerted her to what had to be an obvious mistake. She only nodded and said it was supposed to be there and no, it had nothing to do with me! Phew! It was part of what the pastor was preaching about in preparation for Sanctity of Human Life Sunday. He wanted to show a video clip that we had all been talking about on facebook. I'll post it here:
The fact that our pastor used this youtube clip as an example for sanctity of human life comes as no surprise. He's got a heart for people with special needs. This is one of many reasons why we love him. He can see value and worth in people that some would call unworthy. He sees each individual and appreciates them because they are a unique and special creation of God. Sanctity = the quality or state of being holy or sacred. Sanctity of each human life, without regard to ability or lack thereof, regardless of race, sex, intelligence, talent or physical handicap. I'm blessed to be surrounded by people who lead by example and see people as Jesus sees them. . . through the rose colored glasses of perfect love.
Once you've home schooled your kids, it's hard to change that mindset. Every day contains a learning opportunity! Today, we had a baked Italian pasta dish for lunch so we set the house up like an Italian Bistro, turned on some traditional Italian music, and learned some Italian words. I taught the kids how to say "pane" for bread, "insalada" for salad along with "por favore" and "grazie" and a few others. We learned a little bit about Italy's history and I had the "big kids" show Daniel and Willow where to find it on the globe.
After we cleaned up from lunch, the kids wanted to watch a movie. After scrolling through pages and pages of choices on the Netflix instant stream, they decided on the original Cheaper by the Dozen from 1950. The movie takes place during the 20's which led to a discussion on why they were called the "roaring 20's," the economy during the 20's and what happened to change the boom after World War I. We then discussed the stock market crash of 1929 and trading practices on Wall Street, including what it means to buy stocks on margin and how that led to people losing so much money.
All in all, it was an interesting day! The kids had fun and stayed busy which is always good for Moms!
Since Willow's surgery a week ago, we've had 4 nurses in and out of our house. The first one, "B" is an LPN and very experienced. She is familiar with all of Willow's machines, including her cough assist machine which is unusual. Most people have never even seen one. She's about the same age as me and has several kids of her own. She's sweet and funny and very "southern" with a thick drawl when she speaks. She's very good with Willow. She calls Willow her baby and Lilli her "sweet potata." She doesn't mind snuggling or that Willow tells her she loves her 50 times a day. She holds Willow's hand when they watch cartoons.
Nurse "D" was here for only one day last week but she's coming back tomorrow. She's an older lady who walks with an awkward gait. She sort of limps like she has a back problem or something wrong with her hip. She's sweet with Willow but doesn't let her watch tv. (which is fine with me!) She likes board games and crafts and reading stories. She likes to stay busy and she loves to color. She likes to go to church and she switched her schedule around so she could go with us this week! Willow had a lot of fun with her when she was here.
Nurse "S" is an RN but seems less experienced than our LPN from earlier in the week. She was unfamiliar with the cough assist and even the vest. She has a different sort of idea about what personal space is. It seems like she always wants to stand too close to you. She says bad words in front of my kids. She's loud and abrasive, pushy and bossy. I told her repeatedly that I wanted to wait to give Willow a bath until her shower chair arrived in the late afternoon. She insisted that she could give her a bath without it. When I got home, she proceeded to tell me how difficult a task it was and that the shower chair arrived at our house an hour after she was finished. She hadn't been bathed in 3 days at that point, the bath couldn't have waited an hour? Willow was depressed this morning when S showed up. Willow refused to look at her, speak to her or acknowledge her in any way. She cried when I had to leave to take the kids to dance class. Needless to say, I've requested that the agency not send her back.
Nurse "J" was trained by S just this morning. She's soft spoken and sweet, exactly the opposite of S. She has a full time job working in a clinic during the week so she'll only be with us on Saturdays but we really liked her. She said she enjoyed being with our family, in spite of multiple meltdowns from Daniel. She has good manners and doesn't swear.
We also had a visit from our favorite local nurse today. Our Pastor's wife, who is also an RN stopped by to visit Willow. We love her so much!
It's been interesting having nurses here. I've learned a lot about how Willow relates to people. She really has a huge capacity for love. She accepts pretty much everyone but even she has her limits.
I am only cheating a little on my blog post today. I'm tired. Willow was up until midnight last night tossing and turning and whimpering and of course, Daniel was up at 6 this morning. I've been on the go all day with appointments, etc. My brain is fried. However. . . I wrote the following several months ago for a facebook group I'm in with other Christian homeschooling families. I intended to blog it then but just never made it over here. I needed something good for today, so I dug this out:
Romans 8:28 “And we know that all things work together for good to
those who love God, to those who are the called according to HIS
purpose.”
This is a verse we all have memorized or at the very
least have heard quoted many times. People use it as comfort for others
who are going through difficult times and to some who have been through
many trials, it can almost become a cliche’. Through tears and forced
smiles we internally roll our eyes and wonder “where is the good in THIS
situation, GOD? Where is the goodness for ME?”
This is when we need to closely examine the verse and look at those last few words. “who are called according to HIS purpose.”
It’s been 9 years since my husband got his degree and joined the
military. He has his “career.” I worked hard to help him get through
that. We’ve been through trials of our own: a transition into the
“military lifestyle” that is more different than most people realize,
the birth of conjoined twins, life in the Neonatal Intensive Care Unit
and then their death 6 months later, the adoption of two children with
special needs from foreign countries, the diagnosis of our oldest
biological son with Asperger’s Syndrome are all just part of our story.
Through it all, I knew that God had something “good” for me but when the
dust cleared and everything settled down, still I struggled. I
struggled with who I was. I was a 30 something “stay at home mom” with
no degree and (in my mind) no value beyond wiping noses, finding lost
shoes and cleaning up messes! I needed God’s wisdom for the quiet time
in my life just as much as I did when I was going through those hard
times! This is when new light was shed on this verse. There’s so much
value in the first part “God works all things together for good” but who
is that for? “To those who love God.” OK I love God. CHECK! but I
started thinking: Am I “called according to HIS purpose?” What *is* my
purpose?
As I prayed and sought an answer from God, I began to realize that
God’s purpose for this season of my life is to be intentional with my
children; to raise them in these few years that they are mine to find
God’s purpose for THEM! Not only is that “OK” for me right now, it’s
PRECIOUS and VALUABLE! In a society where so many children are cast
aside, I have a greater calling.
I want to challenge you today. What is God’s purpose for you? Have
you found it? Are you walking in it? If so, have peace! Because HE will
work all things together for your good!
For anyone who has children with special needs, I know you know what this means. I have an order from the pulmonologist that Willow is supposed to wear her oxygen whenever she's walking. She can't carry the tank because it's too heavy and then she can't walk. She wants to participate in all the things that other kids her age do (to the best of her ability.) She wants to ride her bike and bounce on the trampoline, take dance classes and "run." None of those things are possible for her with a back pack oxygen tank. So what do we do? We have to find balance. We have to balance her health with her activity level, her happiness and social and emotional growth and well being with what she is capable of from a lung standpoint.
Willow's had a lot of surgeries. In the year and a half we've lived here, she's had 5 procedures requiring anesthesia. Three were ear surgeries. One was an MRI to evaluate for hip surgery and now again for her recent foot surgery. Putting a child under anesthesia is never a good thing. Again, we have to weigh that against quality of life. Without the ear surgeries, Willow's world would be muffled and hard to understand. Her academics would suffer. When she can't hear, her speech is so slurred that others have a hard time understanding her. Her foot had gotten so twisted that it was harder for her to do the things she loves like dance and even walking was sometimes painful and difficult. More time in a wheel chair to avoid anesthesia? or a foot surgery that can fix the problem and make it easier to walk?
Every specialist sees through a narrow window. A pulmonologist's priority is lungs. They don't see muscle weakness so much. Orthopedic surgeons see bones, and ligaments and how they work together. A physical therapist sees how weak Willow is and wants to increase her therapy schedule to 2 times per week. Speech and occupational therapy of course would need equal time. If I took her to as many appointments as "they" tell me she needs, she would be "truant" from school! Already, the school is breathing down my neck because she's had too many absences. Their priority is education. All of these medical problems are irrelevant to them.
I have to see it all. I have to make good choices for the care of all of my children, individually and as a whole. . .when there are no perfect priorities. Somewhere, something suffers, no matter what choices I make. While everyone has their opinion, at the end of the day, I am the one that has to live with my choices and know that every single one has such an impact on the lives of my children. There are no right answers. We can only do our best and then live with the consequences of our actions.
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