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Monday, November 24, 2014

Jackson and Lincoln, in PreK?!?

We go to school! And we dont hate it!





The twins have been in school for little over a month. I know they like it. Not because they say so, but because they don't cry when we pull up to the parking lot, and they allow me to put their tiny backpacks on them, and they walk with me (pushing Levi in the stroller) to the front office, through the school, and to their classroom door.   They are always compliant when walking into school,  and if you know them, you know that says it all.

First day could have been hard for me. I totally forgot I was supposed to be taking pictures and documenting their first day, because frankly I was just so unnerved by the whole thing, it felt so surreal, I wasn't thinking about a camera. When we got to the door, they walked right in. Their teacher greeted them warmly, excitedly, and helped them hang up their backpacks. I wasn't sure if I should stay for a few minutes to make sure they were ok, or dip out quickly to make it easier on them...but the teacher decided for me when she looked at me, smiled, waved, and said "Bye mommy! They'll be fine!" So that was my cue.

I walked out and back to the car and cried quietly, but not uncontrollably.  I was actually rushing back to the car, because I had somewhere I wanted to be. Because God works all things for good for me, He had arranged a little moms bible study to be kicking off the exact day that I would be starting the boys in school, during the exact time that I would be dropping them off, exactly 2 minutes down the road from the school. I guess God knew I wasn't going to do well sitting at home with Levi that day.  I saw the announcement in the church bulletin for this new mom's group the DAY BEFORE they started school.
I drove to the bible study thinking, "ok God, thanks for this bible study. I know why you have me going. I'm going to use this time to share my struggles, and get filled. They're going to encourage me as I tell them the hardships of being a mother to twins with Autism  Spectrum Disorder.  They're going to give me a pat on the back and a nod of admiration for having so much on my plate as a mother. They're probably going to cry a little and hug me and tell me it's going to be ok." And I was ready for exactly that.
But that's not what happened. These 5-6 women slowly filed into the room and while I bounced my Levi on my hip, they came in, every other woman, with her own baby on her hip. Clearly I wasn't going to get their sympathy by playing the new baby card. But once they found out I had twins, that would shock them into prayer for me. And when I tell them I have five kids, they'll REALLY be in awe of my hardships.
But then during our intros, I found that half of the ladies were mothers to twins. (wha?!) That they didn't have five kids...they had MORE. Some almost double. And some have prayerfully adopted and foster children... many with difficult medical situations and emotional pasts.  So I just zipped my lip, and listened.
These women shared struggles. REAL struggles, that dont have quick easy solutions, or a clear light at the end of the tunnel. I found myself thinking very little about my situation, and thinking very much about the difficulties of those around me.
And when we went around the room giving our prayer requests, the leader and my now dear friend, TOTALLY skipped me! She didn't even ask me! It wasn't intentional, I could tell even right then that she just was jumping around the room and skipped me. The message from God couldn't have been more clear. He knows everything going on. He's got it covered. I dont need to look for other people for my peace or comfort.  I'm certain that was my msg from God that day. And I think He added: "Guess what else Danielle? EVERYONE is going through something, and EVERYONE needs ME to get them through it. And I can. And I will. And I am. Period." My perspective on my own little difficult path, my trials, my "sufferings"...they were so very minimal when my eyes were opened to those around me.  I needed that message to bring me back to a place of acceptance and determination to keep my eyes focused less on myself and more on others.

ANYWAY. that was my personal lesson from the first day of school. As for them, I picked up the boys at 11:45am and they were smiling and happy, their teacher said they were wonderful, they were very smart, and she has a firm belief that they will master the skills needed to perform in a classroom setting by the time they would start Kindergarten, if not before.
They were going to school M-F from 9am-11:45am, and we have decided this week to allow them to try a full school day. If they are quickly showing improvement with 3 hours of intervention in this creative and colorful classroom, how much faster will they show improvement if they have the opportunity to stay longer?
I dont know. Maybe it's too much too soon. We will soon find out.
*****UPDATE! They started full days 9-3 last week and we all notice an increase in attempts to communicate! Thank you for keeping this whole situation in your prayers! I am loving the support from everyone! xoxo


In other Mclean news: Lukas is finishing up a soccer season where his daddy got to be his head coach, and I love that he gets that special time alone with Ryan each week. Juliette will be performing in the Nutcracker with the Vero Classical Ballet troupe, she has been practicing hard to be an angel. The irony is not missed on me. And she lost her first tooth tonight! *tear
And Levi is Levi. He is happy and redheaded and round. He can now sit up unassisted but still isn't rolling over from back to front. He started eating rice cereal last week, which the doctor says has less calories than breast milk so he will not necessarily get any "rounder". He is only 25 percentile for height, but 98percentile for weight. And as you may have expected, his head is still off the charts. But it's nice and ROUND, and that is wonderful! :) Another followup with the neurosurgeon Dec 8 in Orlando to make sure he's still looking good.




Saturday, September 13, 2014

Evaluations

The ADOS-2, in a nutshell:
We (one twin on one day, the other on the next) went into an unremarkable room with a small table and two chairs. The child psychologist and speech pathologist administered the test. The twins 35 months, two weeks old, at the time of eval.

They brought out various objects and waited to see how he would interact with them.  They asked him to point to his shoes, show where his hair is, point to his nose, etc. For the most part neither boy complied with these requests. They called the name from across the room but neither boy turned to ever recognize the person calling their name.
They asked ME to call their names, and they looked immediately.
They brought out a balloon, blew it up, let it go, and clapped. They waited to see if he would request for the balloon to be blown up again, but both boys just stared and waited for them to blow it up. They did not say "more", or "again", or "balloon", or anything to indicate what they wanted. But they definitely wanted it to be done again.
They brought a baby doll and told them it was the baby's birthday and they were going to make believe to have a birthday party for the baby (meanwhile jackson AND lincoln both are just playing with the baby's eyelids, flipping them open and closed. The woman put plastic plates and cups and birthday napkins on the table for the "party", they produced playdo to make a cake, they put little sticks in the playdo to represent candles, and they asked to sing happy birthday to the baby. Lincoln at this point had already walked away from the table and was pulling me toward the door to leave. Jackson did the same but actually sang Happy Birthday to the baby on his own before he left the table. Needless to say I was shocked he did this.

They produced some more matching items, they brought some food out in tupperware containers (cookies in one, potato chips in the other) and waited for the boys to ASK for the food, or for help.
They weren't quick to bring the tupperware to an adult, and Lincoln spent some time trying to open it himself.
They blew bubbles, and stopped, then waited for the boys to ask for more bubbles.  Both boys said "Bubbles" indicating they wanted more.

They brought out a blanket and hid behind it, trying to engage the boys in peekaboo. Neither boy was interested and instead cried and yelled and pulled on my hand and shirt to stand up and open the door to leave. They gave me the blanket to try to play peekaboo, and immediately each boy started cheer up, laugh, and play with me.

The test then pointed questions at me, one after another about their development, when they crawled, my pregnancy, any complications, etc. They asked if the boys walk on their tiptoes, or seem to be fixated on certain objects, etc. All questions helped to create a score.

They called me a week later to discuss the results. They were lovely women and I knew they only wanted to help. So I waited, and I trusted. And courage stirred, and my faith grew.

Friday, September 12, 2014

Twins with a Twist

9.12.14
I am writing just to write. I have to get my thoughts out of my head and onto "paper". I realize it will be a little while before I actually bring myself to sharing this post.
Jack & Link are just 24 hours from turning 3! Is that possible?!

I don't know why I feel like I have to update the www when our family has any developments. I think it's because motherhood is isolating, and it's like the tree that falls in the middle of the forest. If no one knows what's going on in my world, maybe it's so insignificant it isn't worth knowing about. But when others know, when you know what's happening with me, with us, it somehow brings a little validity to it all. And I think it's because I've been so forthcoming with so much of my heart on my blog, it feels odd to carry any substantial news to myself without blogging about it.
So the update is that the twins are almost 3, and they are delayed in their language by about 1.5 years. They've been in speech therapy for more than 7 months, and we are very grateful for the therapists who have worked with them and brought about their progress, although it is not the substantial gains we were hoping for.
Their speech therapist suggested I have them tested for autism (also referred to these days as Autism Spectrum Disorder, ASD) about 5 months ago, she said she didn't feel confident diagnosing them because she didn't know how much of their delay was a twin thing, and how much they take cues from one another.  I did some research and recognized there were some autistic behaviors that they exhibited, but I decided in my head that if I don't get them tested, then they don't get diagnosed. If they don't get diagnosed, they don't have it.
I know that makes no sense when I say it out loud, but in my head at the time, it was a great way to avoid labeling them as autistic. Ryan and I talked about it again and again and again. We were just unsure of what to do. The workers with Early Steps (intervention support program for babies-2yrs, I contacted a year ago, qualifying them for speech services) told me it took months to get into an autistic evaluation through their program, so I needed to put them on the list now before they turn three. After that we'd have to pay for any testing.
But we didn't put them on the list.
I kept reading, and researching, and watching youtube videos. I went back and forth about getting them evaluated. I gave myself good and bad commentary.


"I don't want them labeled with this for their entire lives..."

"But if they get evaluated  and diagnosed we can finally have an answer, an explanation, to their delays and tendencies, it would explain why it's been so different and difficult trying to raise them!"

"Yeah, but I don't want them to think they are less than perfect, and if they grow up with that label they may not try their hardest or they may think they can't achieve what others can, or others will judge them before knowing them."

"But if they are diagnosed and found to be on the spectrum, they may be able to get therapies that are specifically designed to help them advance!"

"But I don't want to have to explain this to anyone..I feel guilty, and sometimes ashamed. I am horrible!"

"But it's not about you."

"I just don't want them to be autistic--how did this even happen?!"

"They are exactly who God wants them to be, and you are the mom He chose to raise them and nurture them and advocate for them."

"
If, IF they are on the spectrum, it's probably just barely. They aren't severely autistic, for sure...there are probably many kids who don't get evaluated but would be on the spectrum, and they manage...so why subject them to a lifelong label?"

"So they (and you) can get help."

"But I am a professional mother! This is what I do! Look at my first two! I know what I'm doing!"

"Jack and Link are not like Juliette or Lukas. Further, Jackson is not exactly like Lincoln. Each child has their own code, their own personality, and their own weaknesses--each their own path."

"I know. I really do know. But how did this happen?!"

(And I am aware I sound like Gollum talking to myself, but that's really what is sounds like in my head.)

.....

But God knew my uncertainties, and while I worried, I prayed for my boys and for us as parents.
And He had a plan to get me beyond my reservations.
As the boys were aging out of Early Steps, they had to do an exit evaluation to determine if they were eligible for further intervention services through the school district, because starting at age 3, they fall into the jurisdiction of the public school system. So we were just going through the motions. I was confident that their language delays were still enough to qualify them for more therapy. We went, one twin at a time, to be seen by the preschool child psychologist for the district and a speech pathologist for the district. They were wonderful, to me and the boys. We talked about their strengths, their tendencies, their adorable-ness...we laughed a lot--they were just really nice I guess. Or maybe I don't get out much. Either way, at the end of the evaluation, they too suggested an autism eval, I sort of nodded as I had heard this already, but before I knew what was happening they had scheduled them for the following week! I thought it was supposed to take MONTHS to get the ball rolling, and suddenly, it was happening.
I left the building in a daze, all of my trepidation concerning autism evaluation, all my back and forth dialogue about it, my worry, was gone. These two women cast a spell on me! I called Ryan as I left and told him what sort of haphazardly came about, and he too accepted it easily.
The days crept by and finally the boys were evaluated.

It was called an ADOS-2, the Autism Diagnosis Observation Schedule, 2nd edition. To read more about what happened during that eval, jump over to that story, which I cleverly refer to as Evaluations. But in a nutshell, each twin gave a pretty good representation of themselves in that hour, and I knew in my heart what the results would say.

Then more days crept by, and finally Ryan and I had a sit down meeting with a district resource specialist, a school speech pathologist, the same district preschool child psychologist and speech pathologist who administered the evaluation, and an ESE teacher who teaches a 3 yr old class for autistic children. I was already aware of the latter, though I had never met her. She was a finalist for teacher of the year for the district. Just her presence at the meeting already told us what the results of the evals were.

Surprisingly, as we went over the scores and results, I only cried a little, and it was only because at the end of the meeting, after all our questions were answered, they decided to affirm us as parents, for the great job we do and have already done for the boys. Ryan chimed in to say how great I was as their mom, how much he trusts my abilities as a mother. I am sensitive to personal praise and compliments, I get easily overwhelmed by sincere people who can identify the battle scars I have on my heart--those who notice that my armor in that area of my life has been weakened by continuous blows.   My heart has been proverbially beaten over the past year, beaten down mostly by myself and my inner monologue,  but it's also been battered by a lady who kicked us out of her library toddlertime for being twins who jump for joy too much.  From stares at the splash pad that say, "woah lady, you have too many kids and you're in over your head." And even from unintentional parents who have normally developing kids, from those parents that didn't have to coerce or demand that their child learn to love simple storybooks.  Do you see how easy it is for you? When you sing a nursery rhyme your kids don't cover their ears or tell you no, or struggle to get out of your embrace. You parents who just gush over your two year old who is stringing silly words together to make silly sentences that steal your heart. You parents that take for granted each and every time your child utters the word "mommy." I know my boys know how to say it. When I prompt them, they say it. "What's my name???" Mommy!
"Good! What's YOUR name?" MOMMY! :)
But they have never just called my name without being told to.  Ryan says they call my name when I leave, but I've never heard it.  And they have never said their own name when I ask.  And it breaks my heart.
I used to be you, the parent who took for granted how easy it was, recognizing developmental milestones as a God-given right, while I celebrate small successes, or celebrate even if they don't regress.  Or maybe you are the parent who totally knows what I'm talking about, I recognize there are some. Please know I am venting. The websites say I am grieving, resenting, and accepting. But to many it will just sound like I am whining. And I'm sorry. But it's my blog.


I have spent hours looking back at home videos of the twins as they grew. They just look like happy little peanuts, smiling and laughing as most babies do. But I am finding pictures of them lining up objects and rocking back and forth on the couch while watching tv, only interested in very specific shows, fixated on numbers or letters and nothing else, and it suddenly seems so clear. The speech delay was the first flag I actually noticed, but there were little flags all along. They don't make regular or steady eye contact. For about a year they preferred to flip a bike, stroller, or a toy car over and spin the wheels rather than use it as it was purposed. They don't always turn when their name is called, but there is nothing wrong with their hearing. Sometimes they walk on their tiptoes. Sometimes they spin in circles, I thought it was just because kids like to get dizzy. Apparently it's a sign of ASD. They never used their finger to point at anything. At 2 they wouldn't identify body parts on demand, or make animal noises at requests. They don't play make-believe--ever. They repeat words and phrases instead of making meaningful conversation.
"Are you hungry?"
"Hungry"
"Do you want to eat?"
"Eat"
"Do you want a banana?"
"Banana"
"...What do you want?"
"Whatdoyouwant?"
One of them tends to jump around and flap his hands when he's excited, the other one sometimes sniffs objects before he interacts with it. I thought it was just quirky. They love clocks. They love the alphabet. They love shapes. They love rulers and tape measures. ASD ASD ASD.

But they have a lot of strengths that would NOT be considered autistic. They are affectionate. They RUN to the door when daddy comes home, exclaim his name and run into his arms smiling. They laugh and giggle. They love to play ring around the roses with us, they love to play peekaboo and tag. They are not disturbed by grass, water, sand, or dirt, they are not particular about food textures and they eat a variety of foods, from all of the food groups. They are happy when people come over and they are not disturbed by groups of people, new surroundings, or a deviation in their routine.

But it doesn't matter their strengths, because their weaknesses are enough to qualify them for early intervention through the school system. They scored differently, but both boys qualify as having a high likelihood for ASD. And no, they are not DIAGNOSED with ASD. They told me I would need a medical diagnosis for that. But they qualify to attend a special autistic preschool class for 3 year olds, and since they turn 3 tomorrow (Saturday), they can start on Monday. 8:30-3:20. Monday through Friday.

I know. It sounds horrible. My little baby boys, thrown into a class with a bunch of non-emotional children staring at their shapes or into the wall, or being told to practice speaking, throwing tantrums, crying, and upsetting each other all day long, with a frazzled and exhausted teacher who everyday questions her purpose in life and why she does what she does.

And I know this blog is getting long, but my head is going to burst if I don't file some of these thoughts away. So let me finish.
I asked to come see her class first, before bringing them at all. She said to come and check out circle time.
So I did.
I visited the class the day after our meeting. I saw this class in action.
And you know what?
God has GOT THIS.
There are only 6 students in the class right now, my boys will make 8. They have 2 aids, and they keep the ratio 3:1. She has colors and shapes and numbers and patterns and educational toys PILED in every area of the room, from floor to ceiling. She has sheets covering areas and toys that would be a distraction while she focuses on one area at a time. She is organized, passionate, and purposeful.
The other students were 3 going on 4, and most have been in this class for over a year. They were focused on the teacher, they each complied with her requests, they were all verbal, they celebrated each other's successes.  There were 3 girls and 1 boy present, but one of the little girls was taking her very sweet time on the toilet for the entire 40 minutes I was there so I didn't get to see her. An aid was sitting near the bathroom checking in on her. I heard Disney singalongs floating out of the bathroom the whole time. The aid would ask, "Would you like to sing the dinosaur song on the carpet?"
"NO not DONE!" was the reply. The elderly aid shrugged at me and smiled. She said, "We aren't miracle workers, but with patience we see improvements. I've been an aide for over 20 years, and I've never seen a better teacher than this one."

And yes, the teacher is magical. Upbeat and quirky herself, she can relate to the uniqueness of her students. Little to no makeup, little to no nonsense. Her pink teacher apron was embroidered with her name, but also covered in velcro pictures of various classroom activities for the day, and under the apron, a simple tshirt and jeans.  A thick bright green headband kept her long reddish wavy hair out of her face. She moved so quickly from one teaching strategy to the next that I had a hard time keeping up, but she kept them engaged.  She told me she makes it one of her first goals to potty train the 3 year olds that enter class. What?!? You mean not only are you not going to judge me for not having potty trained 3 year olds, but you're going to help me do it!?
She saw fear and hesitation in my eyes when we discussed schedules and dropoffs and pickups, and she comforted me with confidence. She was happy to agree to starting with just halfdays for the boys.  She danced with the students on the carpet, she rejoiced with them in their accomplishments. Music and color and joy permeated every square inch of the room. She reassured me when I sarcastically laughed at her explanation that each child in the class has a schedule that they keep, and my boys would soon do the same. She told me I was a great parent. She told me it was uplifting to see Ryan and I so involved and dedicated to the twins.

And I feel peace starting to creep in.

Despite rising fears and waves of sadness, despite the unpredictability of raising these twins, God has not forsaken me. And God loves Jackson and Lincoln more than I am even capable of, which sounds just ridiculous when I say it, but it's true. He KNOWS the plans He has for them, Plans to prosper them, to give them a hope and a future. And this class, this little preschool class, is part of the plan. I know it.

So tonight, while I'm supposed to be preparing for their 3rd birthday party tomorrow, I am grappling with the implications that my twins have ASD and are starting school on Monday.  My babies start school on Monday. My little cherubs, with little tiny backpacks, are off to be challenged and pushed to learn how to perform like regular 3 year olds do.

I will cry buckets when I drop them off on Monday. I will need extra grace when 8:30am rolls around and I am driving them to be with another adult for the entire morning. I will need encouragement and support from my family and friends while this becomes our new life. I didnt expect to have to deal with these emotions until 2016 when they were actually going to enter VPK.

Please extend us grace in the days ahead. I am learning. Ryan is learning. We are trying to accept something foreign to us and foreign to all I know about parenting.
It will test my faith, all of this will test our marriage, it will test our family and friends, and will test my ability to trust.

I want to pass the tests. And I want YOU to pass the tests.

Thank you for reading. We, as always, appreciate your prayers.

Update: 9.21.14 Today I asked Jackson what his name was several times, and after calling himself Mommy for the millionth time, and me correcting him just as often, he pointed to his chest and said, " "Jacket!"
I'll take it buddy! way to go!



Thursday, September 4, 2014

Goodnight China



I just wanted to let you all know, a few people in China find me amusing, and I can appreciate their fascination with my chaos. And I'm pretty excited about the pageview lovin from the Ukraine, Indonesia, and my 4 friends in France, India, and the Philippines as well. Mediocrity knows no national bias.



Everyone is asleep. I am stupid for not also going to bed. But as all moms know, this time is bliss. This is the time to relax and unwind.  No one is asking me for a drink, no one is crying, no one needs a pencil sharpened, no one needs help putting their clothes away, no one needs a lullaby, no one needs to be disciplined. No one needs pajamas, no one needs to be nursed, no one needs a diaper...When all the No Ones are asleep, it feels like the twilight zone, but it's a good twilight zone.  Going to bed late and losing a bit of that sleep is worth it.  I don't feel guilty being on the computer because after a long day of being needed, no one needs me. No one wants me, and in this case, it's a wonderful feeling!
But the morning will come faster than I'd like, so I'll just say one last thing.
I know very soon, all these needy children will grow up to be more self-sufficient, and you know what? I'll miss No One.  
:)

JK JK.  I miss them already. 


Goodnight WORLD!  
晚安

Monday, August 11, 2014

God's Honest Truth

Ever get tired? Feel defeated? Overwhelmed? Totally discouraged? Me either. With Jesus in my heart and a song on my lips, my life is pure joy and contentment. I cannot be moved!

Just kidding. That's not the truth.
The truth is people call me supermom and wonderwoman, and I'm neither.
The truth is I am a pathetic whiny failure who makes too many mistakes to be called good in any way.. and I'm a baby.
The truth is when I say my house is a disaster, it really is. Few can compare.
The truth is everyone said the first year of having twins was the hardest, and in reality it has only gotten harder.
The truth is the twins have the speech development of 18month olds, and when I stop holding on to peace, other things rush in. Things like discouragement, defeat, disbelief, anger, guilt, and envy.
The truth is I sometimes compare them to their older siblings and get so irritated with them I want to quit.
The truth is I have five beautiful children but my favorite part of the day is when the twins take their nap and go to bed at night.
The truth is shame has a yearly pass to my heart.

The truth is I struggled today. It wasn't so different from any other day, but I guess I didn't have all my armor on. There were moments of happiness, of course. But overall I have to give the day a D+.  I had a lot of selfish thoughts, I had a lot of times where I wanted to sneak out the back door and hide from them. I yelled too much. The twins had speech therapy today, and it's a struggle just to get them there.  The therapist only sees one twin at a time. I have to pack up for a few hours outside the house, bring all five kids 30 minutes to the therapist, drop off one twin, take the other four children somewhere to pass an hour, change diapers on the floor of the car, pass snacks out, fill drinks, endure screaming and whining from Levi or a twin, and then go back to switch the twins, then do it again for another hour, before driving 30 minutes back home.   Later today I caught myself just staring at the twins, as they grunted and whined and cried one of their favorite words, "peese, peese! peeeeese, (sob sob) peese! (sob cry scream)  peheheheheeese!...etc". They were angry that the tv wasn't on a show they like, but they didn't say that, I just know that's what they meant.  I stared at them, in a daze, unable to understand why they are the way they are, why they can't just ask for me to change the channel like any other almost-three-year old. I just stared, unintentionally ignoring them, wondering how I got kids like this.
To end the day with a bang, I did something stupid--I tried a new recipe for dinner. And just so you know, all my kids hate slow-cooked barbecue chicken breast. Dinner melted into a chaotic mess for bathtime, and their bedtime just could not come soon enough.
That's the ugly truth. Today was hard.

But everyone is sleeping now. And Ryan is home, and he put a bier from Amsterdam  in the freezer for me. And he is cleaning the kitchen as I type. And when I have a chance to breathe I can remember that while my day really was exhausting, it isn't the whole truth.
The whole truth is a joyful heart is the good medicine I needed today. If I had looked up at all I may have remembered that.  A broken spirit dries up the bones. I couldn't get out of my funk today because I gave in to the broken spirit that pulled at me. I let it seep in. I was Artax. I let the sadness of the swamp get to me. (If you don't know that reference, for shame. Don't admit to it.) And all I got for it was more brokenness, more defeat, and more depressed.
The whole truth is that while I can't be patient and kind and positive for my family all the time, there is someone that can, and He gives me access to all of that power all day, all night.
The whole truth is that while I'm being beaten down, as Satan uses my own children to make me question everything about my abilities as their mother, I know better.

The whole truth is I know I'm already forgiven for my failures. And so the words for tonight, for my soul as I wrap my wounds from today's battles, is Romans 8:31-32. Perhaps these words are for your soul as well, as you carry your own heavy heart for your own heavy burdens:
31 What, then, shall we say in response to these things? If God is for us, who can be against us? 32 He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things?

 

Note: Remember to ask God for His honest truth tomorrow, Danielle. God's honest truth is always going to better than yours. And when things start to look down, look up.  









Tuesday, July 22, 2014

Counting Blessings for Levi


Levi says thanks! 2 weeks post op


Day after








We had so many people praying for us, and for Levi, that I wouldn't have been surprised if Levi had been miraculously healed overnight.  That, however, wasn't part of God's design. The blessings that came our way were surely Him though, working through prayers. Please be warned, I use the word "blessing" a lot in this post, which may become redundant to the reader, but that is the best word to use in this story...no pseudonyms for this one. I won't be telling people we were super lucky, or very fortunate, and I won't be giving credit to fate, or the universe. This story is about choosing to recognize blessings from God.  So for those wondering how it all went down, here is what your prayers got us:

From the moment of the diagnosis, I felt peace. I drove up to Orlando with Levi by myself, having spent some time on the internet the day before googling "abnormal infant skull".  I suspected it was sagittal synostosis based on what his head shape looked like, and the fact that I already noticed weeks before that his soft spot was almost totally closed, which it shouldn't have been at his age. I also saw that the only treatment for it is surgery. I went to Orlando with all of that in the back of my mind.

The drive was smooth.  The hospital was gleaming, the way only new buildings can gleam, the metals and marble columns sparkling in the sun as I walked in, blessed with a free valet, it was complete with water features, beautiful landscaping, and an enormous, almost entirely empty lobby.  Bouncing, flashing, colorful lights making cool shapes across a 50foot wall just next to the reception desk created entirely for my viewing pleasure would be enough to temporarily distract anyone from their pain or problems, and I quickly learned that seemed to be Nemour's ubiquitous goal. From the quirky light fixtures to the funky yet comfy furniture, from the vivid artwork to the beautiful views from the floor-to-ceiling windows, everything made me feel like I was walking into a Disney hotel, not a hospital. The staff was incredibly friendly too, and Levi's pediatric neurosurgeon was no exception.

We were seen right away, and Levi's doctor, Dr. Maugans, was patient, thoughtful, and most important to me, highly qualified. He examined Levi, and was very sweet with him (sometimes men don't have the most natural motherly disposition with newborns, but this guy was very good with him).  Within 15 minutes he speculated Levi did in fact have nonsyndromic sagittal synostosis, but he wanted to confirm with a CT scan. Instead of having to go to a different part of town, or wait for days for another appointment, as we may have had to do in Key West, we just went down the elevator and waited about 4 minutes in yet another beautiful waiting room, complete with a 1500 gallon tropical fish tank.  No mother gets excited about having to put their infant through radiation of a CT scan, so I counted it as another blessing that Levi was not unruly and didn't need any restraints to keep him still. I simply got him to fall asleep (ancient magical sleeping potion, breastmilk), laid him down on the belt and they zipped him in and out within minutes, he slept through the whole thing.

Again, we didnt have to wait. The results of the scan were upstairs on the doctor's computer before we even got back upstairs. After confirming the diagnosis, Dr. Maugans spent the next 45 minutes with me, in no rush at all, answering every question I fired at him, even commending me on my great questions and encouraging more. I didn't burst into tears when he said surgery was the only treatment. My heart was braced and I felt totally at peace. We were blessed to schedule the surgery for a month away, while Levi was still young enough to be a candidate for Dr. Maugan's nonendoscopic, minimally invasive calvarial vault remodeling, which must be done before 12 weeks for optimal success. After that, he'd have to do a much more involved procedure which would require a zigzag incision from ear to ear.

I had given the entire situation to God's much more capable hands, but still, I spent hours in the next few weeks researching all about it. I read Dr. Maugan's published work, I reached out to other families across the country who went through this. I came up with another litany of questions I wanted to ask Maugans. What's the chance he'll need a blood transfusion? What, if any, drugs are used to help decrease blood loss? How many 2nd surgeries have been needed due to incorrect reforming of the skull? How soon can I feed him after surgery? Why do other neurosurgeons say their surgical procedure is best?  What makes your procedure superior? Do you have a craniofacial surgeon helping during the surgery? Should I find family to donate blood for Levi?...and on, and on. I compiled them in an email and sent them 'to the doctor. Instead of replying to my email, he called to answer all my questions. All the while, I was blessed with a peace that surpassed understanding.


We had to figure out who would be able to watch our other 4 children while we were with Levi during the week of surgery. We are blessed to have some sisters who are teachers, who are off during the summer. We created a shift schedule with a minimal overlap, and it was in this way the responsibility of caring for our chickens was shared equitably. My sisterinlaw Kara and mother in law Karen came during the first 2 days. My sister Kimmie came for days 2-4. My sister Samantha came to relieve Kimmie for days 4-6, since we were not sure when Levi would be ready to come home, she was the closer and truthfully we couldn't give her an exact day we'd be back.  As a side note, how blessed am I to have such amazing siblings!? They are little mini-mes. They know how we expect our children to act, they know how to cook, they know how to clean. They know how to work hard, they are no strangers to large groups of children. They know how to pray, they know how to kiss booboos, change diapers, follow routines, and sing lullabies. I highly recommend siblings to anyone thinking about having children of their own. It's an investment in your family's future joy.
I typed up a 3 page best practices guide for all of the ladies in charge. They could refer to it for successful meal ideas, bed time routines, favorite tv shows, a routine for when things became chaotic, translations for words twins are saying, etc. If nothing else it gave me a security that I was not throwing these women to the wolves without some preparation and equipping them for success. We left our van full of carseats for them in case they felt crazy enough to take them out of the house, and my parents blessed us with a rental car for a week.  In the days leading up to departure, my entire church choir of about 50 people circled around me holding Levi and prayed fervently for God to receive glory in all of Levi's circumstances. Our Sunday school class of adults later did the same thing, and blessed us with a gift basket for us on the road, filled with chocolates, fruit, candy, homemade granola, and gift cards for gas and groceries.

The pre-op appointment was Monday at 3:15. We got to meet Dr Maugans again to ask any final questions.  As God designed it, one of his baby patients who had the same surgery 3 months prior was just about to leave the building from their follow-up appointment.  Dr. Maugans asked if we would like him to ask the family to come in before they left, to let us see their son and ask them some questions. What a unique added blessing, to be able to actually meet another baby and his parents who just went through this! The parents were awesome, the mom also breastfed, so I was able to ask some questions about how it was to feed him after surgery. They showed us pictures on their phone from the day of and after surgery, so we could see exactly how much swelling to expect, but mostly to see how quickly their son was back to himself. I didn't think about how nice it would be if we could meet that family.   I didn't think to ask that in my prayers. But I was very grateful for this unexpected blessing, just reminded me of Ephesians 3:20, which could easily summarize my thoughts on this entire ordeal: Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us...
We went downstairs for Levi to do his bloodwork, and that was not so fun. They had a really hard time finding his vein, they kept saying he was a beautifully chunky baby and his veins were hiding. After 45 minutes, they got enough blood to suffice. Levi was not happy, mostly with the tourniquet being tied so tightly on his different limbs for so long, but we got through it. Levi slept for the next 6 hours from that ordeal, so Ryan and I got to have a nice dinner out while Levi slept all the trauma off. Poor guy, I kept thinking, little does he know how much worse it's going to get tomorrow. 



7:30am, 7-08-2014
Our long-time family friend, Julie's boyfriend Brian, has a house in Orlando, so he let us stay with him the night prior to surgery, another blessing. We spent the evening playing dominoes as Levi slept on. We had to be at the hospital in the morning at 6:15. Levi had to stop nursing at 2am, but because he was sleeping so hard at 2 I didn't wake him up, and nursed him instead at 4am. I know. Not good. But I knew they wouldn't actually get to start anesthesia until after 8 or 9am, and I felt peace about it. In turn, he was not screaming out of hunger during our last hour with him before we passed him over to be wheeled away to the surgery room.  And I only briefly teared up when we changed him into his hospital gown. Let me tell ya, that image is enough to wreck any mother. We were given a beeper, similar in size and shape to those from Outback, and they would use it to send us text updates from the surgery room to keep us informed. I was sure the next few hours were going to be the most emotionally demanding of the entire experience. But God wouldn't leave us to our thoughts!
Around 7:30am, before they even wheeled Levi away, we were informed that we had visitors. They were permitted back, and it was two dear women from a group I'm part of called The Buggy Bunch. It's a group of mothers, 300 strong, in Indian River County, that's sole purpose is to love on, encourage, and support other mothers. They provide opportunities for faith, fitness, and fun for the whole family. These two women in particular are leaders in the organization, and have families of their own, and I've only had the chance to hang with them on a handful of occasions, but they totally surprised me by driving up to Orlando to, in their words, "be a blessing, however we might need them to be". It was so unexpected, such a random act of kindness, I let the tears of gratitude fall. Within minutes, one of my best girlfriends from college showed up. She had taken the day off of work to drive down from Jacksonville to sit with us, and help us pass the time. We spent the morning in the colorful and posh cafeteria, eating our custom omelets and sipping coffee in the sunlight filtering in through the large windows. We prayed for the doctor, for Levi, and for ourselves. We said a prayer of gratitude, and then talked a mile a minute, as only women know how to do. Poor Ryan probably got 5 sentences in edgewise, but that's his preference anyway. Before I realized what was happening, I got a buzz on my outback steakhouse beeper that read "Levi doing great!". That slapped me back to the actual event, and while we gave that a minute of reflection, the conversation quickly slipped back into timelessness. And just like that, two hours had passed-- it was over.  I got another buzz saying to meet the surgeon at Door B, it was finished! When he came out to see us, he told us it all went very well, and while Levi was given 1cc of blood, it was just to err on the side of caution, and Levi did wonderfully.

Night #1
Yoda, Day 1

I hugged my women companions and they were on their way, while Ryan and I took the hallway to be reunited with our little man. The truth is we found him pretty upset. He was hoarse from the tubing they had just taken out, and he was sobbing in between shallow breaths of air. They were trying to rearrange his pillow when we came in. For the first 3 hours it was touchy. He couldn't stay asleep for more than 15 minutes before waking to cry. But after that, he seemed alert and calm enough, so I nursed him, and everything continued to improve, and he got his smile back just a short time after. As a nursing mom, the hospital blessed me with complimentary meals. We were blessed to stay in the comfy PICU, some of the best nurses in the biz by our side, for the rest of our stay, because the hospital was vacant enough that there was no real need for our room to be changed. We had a few special visitors in the next few days, including another special girlfriend from college, my sister Julie and boyfriend Brian, and our pastor, who made the drive up from Vero just to pray with us and check in. Blessed texts of encouragement too many to count came flooding in over the next two days. Levi's head swelled to twice its size, so much so that his ears started to bend and fold outward. He resembled Yoda. I could recognize his eyes, nose, and mouth, but that head I did not know. I nursed him in faith that this was actually my kid, this big-headed alien, and for the next 24 hours I came to accept that this was my new baby, and I was ok with that. Dr Maugans came to check on us and laughed at my remark about Yoda. "That's funny you say that! My last family said the same thing of their baby after surgery!"  But the swelling subsided. Levi's smile was consistent and recurrent. We were discharged Thursday morning, just 48 hours after Levi had large areas of his skull cut and permanently removed. We had not expected to be heading home so soon! A special aunt had pre-arranged to bless us by picking up Luke and Juliette from Vero and bring them to Legoland on this day,  and the original plan was for her to bring them back to Vero after, but now we were able to wait around for them to finish up at Legoland, and bring them home ourselves. 


Discharged and free!
To kill time, we were blessed to go on a date. We took our sutured-up son to BurgerFi and then to the movies. He slept in my arms while Wolverine traveled back in time, and while we munched on popcorn and sipped soda, Levi wasn't on anything other than some juiced-up Tylenol and mama's milk.
We picked up the older two and swung into a restaurant for a quick dinner before heading back. It was odd to be together without the twins, but we were blessed to spend time with our older two without the major distraction of watching the two-year-old twins at dinner. We bowed our heads to quietly give thanks, and as we got ready to leave an older gentleman came to sit with us and tell us how much he loved seeing a family pray for their meal together, and how well-behaved our children were, and to keep up the good work! (the twins would not have earned such a compliment, but they are a work in progress.) What a blessing that man was to me at that moment! To tell a parent they're doing a good job is akin to giving a preschooler a shiny blue ribbon. It will bring a sense of pride and encouragement for years to come. Words are powerful things.


So we drove home, a quiet drive filled for me with thanksgiving. We were home in time to get Juliette off to a wedding she was supposed to be in as a flowergirl, and in time enough to be in church Sunday morning, to show so many what their prayers were worth.
1 week post op
Today, two weeks after surgery, it's as if nothing happened. Apart from his Frankenstein stitches in his head, Levi is one happy, healthy baby. We'll continue to have follow-ups with the doc for the next 4-5 years, monitoring his skull growth and formation, but it should be clear sailing now.







I know our views of the world are all colored by the glasses we choose to wear. Some would credit fate or destiny for all things, some say karma drives consequences, others throw up their hands and say it's all a matter of luck or chance. But my glasses show the divinity in all things.  My glasses show a hand purposefully working this messed up world to ultimately bring peace, comfort, and joy, to anyone who longs for it. I choose to believe there is a reason behind it all, good or bad, and even in the hard times, it's all temporary--just a blip in eternity, and it will pass.

Just to drive the point home, I believe all things work together for good to those who love God and are called according to His purpose, and I don't see anything as circumstantial. Here's how my brain works:

IF we still lived in key west, travel would be an issue. 3 hours up and down for the next 5 years?! ugh.
IF we didn't have Levi's pediatrician, maybe another less-seasoned dr would not have been so quick to recognize or recommend seeing a pediatric neurologist. It's only one in 2000 births, after all.
IF we didn't live in America, in 2014, these amazing technologies would not be available to us.
I have Medishare, which is a Christian medical billing and sharing program-- not insurance, but they act similarly.  At their suggestion, we applied for Medicaid, and Levi qualified 100%. Because we are on one income, and have a gorgeous and large family, the state, our taxes and yours, already paid for every dime the surgery would have cost us. If not? I can't even imagine what it would have meant to our family's future without this blessing.
IF the surgery wasn't in the summer and I didn't have sisters...
IF the hospital was subpar, the nursing staff was less than highly qualified,  the rooms were uncomfortable...
IF Ryan's new job wouldn't allow him time off...
IF this was happening to my firstborn, how much of a basket case I may have been...
IF Levi's plates had fused in a different area, a different form of craniosynostosis, surgery would have been more complicated, his recovery longer, and his skull deformation greater.
IF Maugans had decided to go into architecture instead of medicine..

There are so many ifs. But God isn't in that business. He puts the sun in my window, a songbird on the branch, and a breeze through my hair, simply to make me smile. He has the whole world in His hand, as you know. My conclusion after this whole experience is that Levi must be someone pretty special, to garner such blessings. I wrestled for a bit with the whole idea of asking for prayer. Why do it? God is going to do what He wills anyway, no matter how many are praying.  But my very wise little brother shared this paraphrased quote by Voddie Baucham with me, which if you've made it down to this very bottom part of the post, I will leave you to ponder:

"Prayer is like a boat being moored to a dock. Newsflash: You're the boat, not the dock. Prayer isn't you pulling God closer to your plan, to your desires; it's you pulling on the line and drawing your heart's inclinations and intentions closer to His."




Sunday, June 29, 2014

You've Got to Know When to Fold 'Em

This is one of those special moments in a parent's life where they just don't want to forget all the fun details of a unique experience.  My sister tells me I'm long-winded, and this post will prove her right. I could tell this story in a few sentences, but that won't capture the range of emotion I want to convey. Parents will be able to empathize, and those without kids may feel like I'm exaggerating what was probably just a slightly stressful time. To be too honest, I could not care any less about your perception of how this went down. I was there. I know what it felt like.


My parenting risk management skills have really been refined since having twins. I don't get to take them very many places, not because I am a lazy mom, but because it just is not safe to have two toddlers or now 2 year olds out with only one adult to watch them. They are too "full of life" to be trusted in some situations. Sometimes the guilt sets in and I get this heavy sinking feeling in my heart that I'm not giving them the same experiences I gave my others. But I have to remind myself that I am not willing to risk their safety and well-being to achieve a fun "experience". With twins it is just a different parenting game. The rules change. Everything changes. But sometimes I get parent-pressured into breaking the rules, and usually the outcome is not pretty.
You know what parent pressure is, I'm sure. It's how parents can influence the actions or thoughts of other parents, consciously or not. It's when those Pinterest mommies make incredible birthday cakes and then pressure you to make your own. It's those fort-building daddies who whip together treehouses and rocketships out of recycled materials and give the unspoken challenge to you to beat that. It's the parents who go on glamorous vacations with their kids, or without, and make you wish you could do the same. It's the pressure you feel when you see a mom with her jogging stroller and then immediately let your eyes fall to your poochy belly, or the pressure when a parent orders first and picks a salad and now you don't know if you can order your cheeseburger without guilt and resentment. It's the pressure that their two year old is reading, and your two year old can barely string two words together. It's the pressure you feel when a parent who you typically respect is letting their kid go to a sleepover or get a pedicure, or anything else you didn't feel was age appropriate for yours, but you inadvertently start to rethink your decision. It's the pressure you feel when you are a stay at home mom and you are forced to recognize and consider there are beautiful, happy, successful mommies who are working outside the home, or vice versa.
I try to be aware of those moments when I'm being parent-pressured, so I don't make a decision that stems from it.  Just because other parents do something doesn't mean it will work for my family. But this time, in this moment, I was taken by surprise. I was parent-pressured by my very own mother.

She was visiting last week, watching my 2 nieces (7 and 3) and nephew (6) while my sister and her husband were out of town. When my children combine with my sister's children, we have a full-fledged daycare happening. Peace and quiet are always invited to our get-togethers, but they never show, and they are always sorely missed.

While in town, my mom suggested we all go to a splash pad in the next town over--one where I'd never been, but she had been the day before...she said that although there was a pool area attached, and it was a bit crowded when she went, we could do it. It's doable, she said. It will be fun, she said. The twins will love it, she said.
I did the math, the calculations of adult hands to children hands plus water, and swim diapers, and a nursing infant, and floaties, etc...It would be me, my 8yrold, 5yrold, 2 year old twins, and 8 week old baby, along with her three charges: 7, 6, and 3 yr old.  Two adults, 8 children. YOUNG children.

Spoiler alert: It sucked.

So I should have listened to my refined parental risk management thoughts when they were clearly telling me, "Danger. Do Not Attempt.. Guaranteed Stress. Chances of injury and accident: high. Chances of success: low."
But like many times before, the guilt starts to set in. My provoking inner monologue starts to pressure me: "Your mom had 6 kids. She says it'll be doable.  She would know.
Your mom has the patience and willingness to try new and challenging things with your kids, why don't you?Where's your sense of sacrifice of comfort for your kids' sakes?"

I was parent-pressured. I said yes.

And it went like this:
Twins cry the entire drive to the splash pad because we passed their aunt's house and they thought we were headed there.
****stress level manageable but steadily creeping up****
I park the car and start putting swim diapers on the twins, then shorts, then shoes. Next twin, swim diaper, shorts, shoes. Meanwhile I discover my oldest, Mr8, forgot to bring his flipflops when I yelled at him, "Make sure you get your shoes!!" as we left, so he is hopping and yelping that the parking lot is burning his feet. I grab the diaper bag for the baby and twins, pop out the stroller, snap in the baby carrier, and my mother joins us from her car with the cousins, and a big bin full of snacks, towels, and clothes.
Twins still crying.
***stress level increases as I anticipate the worst splashpad experience ever***
Walk/Run into the place, and have to stop at the desk to pay for everyone. I survey the scene, it's much worse than expected. VERY crowded, and more like a mini waterpark than a "splash pad". There are big twisty slides, diving boards in adjacent pools, water shooters, swim lanes, and yes, a "splashpad" area.  Twins see water and start to pull away. Older kids start all talking at once asking if they can go in. I start yelling at everyone different rules and regulations, and we wait as my mother pays the nice man at the desk, counting children and ages and calculating.
.
Every kid impatient, a few whining/crying, and we wait to pay.
A line is building behind us.
My phone rings, it's my OB calling to give me a pregnancy test result, because, for some unexplained reason, the first two were positive. I was expecting the call for hours.
****stress levels peaking****
Clearly I'm very distracted as I take the call.
Pregnancy result negative, she explains something about false positives due to pregnancy hormones still present, something something I can't hear you there are too many kids screaming around me.
I sigh and pray a silent thank you and tell the woman I told you so and hang up.
***stress levels abate considerably***
I see some of our kids start to walk in ahead of me, but I'm so distracted I think my mother is leading the train, I push the stroller and follow the group toward the water.
Only too late do I notice I've entered the water park without my mom, who was still at the desk paying. Twin A starts charging toward the water. I yell at Mr.8 to go get him, I bend down to start tugging floaties on Twin B, who is screaming crying because I took his shoes off too soon and the cement is burning his feet. When I look up, the 3rd old niece has decided to help TwinA instead of Mr8. She is 3 but is as big as any 5 year old, just not exactly as coordinated. Before I can yell stop she picks him up from behind, loses her balance, and body slams him face forward into the cement. ***stress levels peak again**** He screams and is inconsolable for the next 20 minutes, as blood flows steadily from his nose.

My mother joins us at that point, just in time to see the three year old unintentionally flattening TwinA. I frantically tug floaties on the sobbing and bleeding Twin A and leave him at the stroller with my mom, to rush off to catch Twin B, who has run into the 0 entry pool without me.  He wanders immediately AWAY from the splash zone and into deeper water. As I follow, a lifeguard comes over to me and sweetly points out that I have my hands full, and if I could keep my little ones in the splash area they would love it. I smile. I'm embarrassed.
Thanks. Great suggestion. I'll get right on it.

I watch from the water, keeping Twin B by my side, TwinA still screaming, walking away from the stroller, along at the water's edge. Infant in stroller is now unattended as my mom has to follow Twin A to keep him safe.
Who knows where the 3 year old is? Or any of the others for that matter? Not me. I've got one eye on the stroller, one eye on the fearless twin B who is bobbing along beside me, snickering and trying to move further out, and one eye on TwinA who I can see from a distance still has blood coming from his nose, still sobbing. Wait. I didn't have enough eyes for that. I darted eyes back and forth, scanning, and trying to keep an eye out for our other children a midst the hundred kids splashing, screaming, and laughing around me. To no avail.
My mom brings TwinA back to the stroller several times, only to have him walk away crying each time.
She encourages him to touch and enter the water, to calm down, but he screams more.

10 very long minutes later Twin A finally is willing to take his sister's hand and walks into the pool toward me. Too late do I realize I was better off having him cry at the water's edge than for him to lose his fear and join us in the pool.
******stress increases to off the charts, now definitely outnumbered by the twins**********
I catch my mom out of the corner of my eye start to push the stroller around the park, I'm only assuming the infant has begun to get fussy, otherwise why in the world would she leave me in the pool with 7 children?? Yes there are lifeguards, but there are about 100 children. They are no real comfort to me. And the baby should be due to nurse soon. What will happen when I get out of the pool to nurse him? How is that going to work?!
Trying to keep Twins afloat and happy...the minutes are like hours, I keep checking my watch and wonder how long we have to stay to get her money's worth but also leave without anyone drowning first.

3 year old finds me, comes up to me crying to tell me 5 year old is being mean. "Go find Grandma and tell her, and tell 5 year old to come here."
8 year old finds me, asks if he can slide down the big twisting slide. "NO! ok..yes, whatever, be careful."
5 year old finds me, asks if she can take her floaties off because she says she doesn't really need them. "NO! and stop being mean to your cousin!"
Twins have a conference while I'm not paying attention and decide to split up to really get the anxiety flowing. Twin A starts to climb splash pad play equipment with slide, Twin B starts to wade further out into the water where he can't reach. I choose to stick with Twin B in the open water and hope Twin A can fend for himself among the big kids at the play equipment, hoping he doesn't try the slide because no one is there to catch him at the other end.

Is it true or was I imagining every parent's judging eyes on my back during my disastrous situation?

**********stress remains at uncomfortably high levels************
After about 40 minutes of this I couldn't take any more. I told the twins we were going to the car and they started to scream and pull away from me as I pulled them out of the water. They are big boys, and have floaties on which made it even more difficult to manage them, but I threw one on my hip and gripped the other's wrist, and dragged them out of the pool.  I spotted my mom and the stroller in some shade and headed toward her. With her help, I just needed to get some shoes on them one at a time, without the other one darting back into the pool, so we could walk out to the car without anyone's toes burning off. My mom was willing to keep the other 5 with her at the pool for a little longer, but I couldn't do another minute, and she said it was ok if I left. She offered to help me to the car but then who would watch the other 5 in the pool?
I told her I could walk them and the baby and stroller out by myself... It takes obedience on their part, I need them to cooperate and walk on their own, but ideally we could leave as we came in, I hold a twin's hand on either side of me while I push and steer the stroller with my midsection.
I had bought two big beautiful red lollipops about a year ago, and had hidden them in my diaperbag for such a time as this, a horrendous scene in our lives where I was overwhelmed and out of options. The time had come to pass out the emergency lollipops.
We slowly made it back to the car, sticky red smiling faces, I stripped them naked and put them unceremoniously into their car seats, and drove off, the stress decreasing with every mile I put between myself and the nightmarish splashpad. My heart returned to a regular bpm and I woosahhed all the way home.

I'm sorry for those who read to the end and were being built up for a great climactic end to this story, but thankfully it ended without any more suspense. We were all exhausted. The older 5 were totally unaware of my stresses...they had a great time. My mom managed her five with grace and competency, as only a veteran mother could. But the twins were a game-changer. They may continue to be game-changers for years to come, and I can't be parent-pressured into making decisions that will not work for my boys.

In a previous post I explored the fact that I was sometimes scared to do things with my twins for the wrong reasons. I didn't want to experience failure and embarrassment if they could not be managed. But to be honest, most of the time I'm scared to do things with my twins for the right reasons.  At the splashpad we were always just 3 minutes away from a very scary disastrous accident. And so henceforth I will be careful to trust my momgut. No one knows what I am capable of more than me. Sometimes, yes, challenges are important for growth and learning. But you also have to know when to say no and when to bow out of life's challenges. It's not worth risking the safety and wellbeing of your children.  As the wise gambler says,


"You've got to know when to hold 'em
Know when to fold 'em
Know when to walk away
And know when to run..."


If I could've run out of that splashpad I would've. We won't be going back any time soon--at least not without a few extra adults, or a few less kids, or a whole bag of red lollipops.

What I Was Hoping For:

 
What It Felt Like:  

What it Really Was: 




Tuesday, June 3, 2014

Roll With the Punches

I've never been one for too many details. I hope I'm known as a go-with-the-flow type of woman, friend, wife, mom...one who rolls with the punches. (I'm working on my epitaph, so far I've got "Danielle McLean, proven pelvis, rolled with the punches.) Truth is it's easy for me because compared to some, I haven't really had a lot of punches to roll with. As I've said many times, my life is beautiful. So I don't take a lot of effort in the planning of minor details. That is not how I've been wired which, it turns out, is fantastic, because I have a bunch of kids now and details get lost in the mess. 
Sure, I have some general and unambitious "plans" for my life, such as:
1. Get my own bedroom.  Check. (freshman year of college, first time having my own room)

2. Graduate from college. Check. (UCF, c/o 2005)
3. Marry my high school sweetheart a humble, funny, handsome, strong, kind, honest, pre-screened and pre-selected by God, most patient man in the universe. Check. (thanks God, I owe you--again.)
4. Have four children. Check. (after 4, numbers don't matter. It's just a lot.)
5. Grow old with same man involved in #3 and #4. 
Sorry to disappoint, but I have no plan to run for office, get a PhD, travel the world, rule the world, etc., as cool as those things might sound to some. You may have noted some of my plans happened out of order, which renders me eternally thankful for a God who is able to work all things for good, for those who love Him. And for anyone still in the market, sovereignty is definitely a quality you want to have in your God, when you're selecting who you will follow in this life, keep that in mind. 

Anyway. My point is, even my minimalist planning approach to life has proven to be either too specific or too self-absorbed, usually both. None of us can predict how our lives will unfold. The most mundane moment in time can shift our future. The most seemingly inconsequential information, encounter, or decision can change everything. In retrospect, sure, it's easy to see how and where a tsunami originated, but when you're busy living your life, most simply can't imagine what is about to befall them. Take, for example, my friend on the bike.

Life just doesn't go how we plan. I am learning more and more to not try to plan how perfect or easy tomorrow will be, because that's not real and hardly ever comes to pass.  Real life is messy, scary, bumpy, and hard, with joy and beauty intertwined throughout those tough times (note the joyful and beautiful checkpoint flags in God's plan). 
If you would have told me I would be mother to twins, specifically a mother to four boys and 1 girl, I might have been scared into not having any. Four boys is a lot of boys. I had 4 sisters and just one brother to contend with, almost the exact opposite...how can I raise all these boys?? Further, if you would have told me that our firstborn son would have a scary delivery and need to be vacuumed out, and then at 3 years old would grow a thyroglossal duct cyst right next to his vocal cords that would need surgery to remove, I'd be scared to tears. If you would have told me that our newborn daughter would have high levels of bilirubin and would need to have an IV and undergo phototherapy for days, I'd be appropriately upset. If you told me we'd have twin boys who were nonverbal and showed developmental delays for their age, and that they'd benefit from speech and occupational therapy, I'd be understandably shocked.  But we must and we do, roll with the punches. Making plans of having 1, or 2, or 3, or 4 children does not guarantee you'll actually have them, and having hopes of uncomplicated or a complete absence of medical experiences for your children does not keep pain and suffering from coming to them. 

This brings me to Levi, our super baby, our number five.  He's been as uncomplicated as uncomplicated can get. He was born healthy and big and strong.  He latched on right away, a strong little sucker. He gained weight appropriately, and is just a perfect little red-headed munchkin. But 2 weeks ago the pediatrician showed concern that his head was off the charts for size, and a little too oblong for her liking. She said although infants can have heads that are a little misshapen from delivery, they will correct naturally in the first weeks of life. Levi's skull shape has only gotten more ovoid. But honestly, I didn't think much of it. Our #1 had a head off the charts too. We did CT scans to rule out hydrocephalus (water on the brain) or any other issues, and turned out, he just had and still has a humongous head. 
So we took this pediatrician's referral to a pediatric neurosurgeon pretty lightly. We scheduled the appointment at Nemours Children's Hospital in Orlando and didn't think of it again, until the day before the appointment. I was still calm, but I realized I didn't even know what our pediatrician suspected, or what she wrote on the referral, or what her concern was. I started googling, and very quickly found Levi's skull shape on other infants on the internet.  The diagnosis of an infant skull being elongated was possibly a case of scaphocephaly, a condition that only appears in approximately 1 out of every 2500 births. 

I drove Levi up to Orlando for his appointment, and after examining Levi for just a few minutes, a very nice pediatric neurologist diagnosed scaphocephaly.  We were sent to get a CT scan just to be sure, and the results confirmed it. At 5 weeks old Levi's skull should show soft spots in several places, leaving room for his growing brain to expand as needed, symmetrically, for the course of the next year. Levi's skull, however, has prematurely fused shut along the sagittal suture (the line running front to back), causing the brain to push back, causing the back of his skull to push out, taking on an oblong shape. 
The only treatment is surgery. 
I was not hysterical as he told me Levi was a candidate for surgery because I had already researched the condition and treatment, so I was somewhat prepared. I was calm, and am still calm, and I attribute that to being a mother of 5, but mostly I attribute it to the prayers that were and are expressed to God on my behalf.  (please don't stop praying!) I felt peace throughout the entire conversation with the doctor. I still feel peace about it, but in reality, it is quite scary when I allow fear to creep in. The surgeon will remove about a 2cm strip of the center of Levi's skull, and then cut some strategic and geometric slices down the two side areas of the skull, to alleviate pressure and allow for proper future growth. It's a two hour procedure, and about 1 in 3 infants undergoing the surgery need a blood transfusion. Minimum 3 days in the hospital post op. 

The surgery is scheduled for July. He will be 10 weeks old.  As I type this, I am watching Levi sleep, cuddled up in a warm fluffy polka-dotted blanket in his swing, wishing he could just stay this comfortable forever.  I don't want to think about what will happen to him in July, I don't want to imagine the trauma that he will suffer, the pain that I am willingly subjecting him to. I know I can't plan for him to have a pain-free life, just as I can't plan that for myself or any of my loved ones, but it sucks to know what's coming for him, and at the same time, it also sucks to not really know what's coming for him or any of my other children in the future. 

But I can take comfort in expecting the journey to get rough in spots.  Life isn't smooth sailing, it isn't an easy ride. If I am prepared for the bridge to collapse under me at some point, since I know this world can offer me no guarantees of safety, peace or comfort, then the bridge collapse may not be so shocking when it happens.  I'm practicing peace, which is a moment-by-moment undertaking, but I know God has Levi in His hands, and that is where my peace comes from. This is not a brain tumor, this is not cancer, this is not fatal.  This does not affect his brain function or sentence him to a hard, painful life. I remind myself of these reasons to give thanks and that helps too. 


If you're already praying for my family, don't stop now. If you're not a pray-er, stop living like that. It's sad.

Life is a journey, not a destination, right? Right?? right. 


Stay tuned for the updates on my other sweet shish kabobs and how I manage to survive the summer with them all...all day long...by myself...
Don't change that dial.