#God, Motherhood

Who do YOU think controls your family?

As Anaia grew and began to sit up, crawl, talk, and finally walk, there were people saying things to me that echoed my own thoughts. Shouldn’t she be doing XY or Z by now? Being a first time Mom I had read all the baby books.

Every. One. Known. To. Man.

God. Abba. Papa. The Man Upstairs…. not you, not me, not your parents, not the Starbucks barista holding your morning liquid gold… GOD.

So I had a timeline in my head in which Anaia had to follow in order for her to be deemed “normal.” Even though she was on the later side, she was developing within “normal” limits. Nonetheless, I’d get an uneasy feeling in the pit of my stomach about her progress. It was those doubtful voices at work again, the ones that plagued me all my childhood. Anaia was doing fine. She potty trained herself and was out of diapers, even at night, by 3.5 years old. From my understanding that’s quite normal…

After all…. I was single handedly keeping Barnes and Noble in business. I was in the know.

For still the vision awaits its appointed time; it hastens to the end—it will not lie. If it seems slow, wait for it; it will surely come; it will not delay.~Habakkuh 2:3

By the way, yes indeed, I said potty trained herself. We’d been working on using the potty and she was doing pretty well, only an accident here and there. One day as I was sick in bed,  Miss Anaia, in usual form, toddles over to my bedside holding a newly-ripped-off-from-her-butt diaper and proclaims, “I do not want to wear diapers anymore. ”

Well, alrightly then. Point taken! From that point on, she never did.

I can’t look back on that moment with sheer joy, however. The attitudes and judgment of others overshadowed the most joyous and independent moment of her life.  I wasn’t met with excitement by some I told, rather with, “well she should have been potty-trained long ago.”   Such a self-serving need for control over others, crushes a spirit. Passive-aggressive judgement  like that  rips away someone’s independence and self-discovery.  I wish I would have  relaxed and enjoyed my daughter’s milestones. Her first word was a compound word, for goodness sake!  Kitty cat! Such a smart kid! Pretty impressive, but through it all I had to fight back the negative, controlling chatter of those warning me of impending doom if she didn’t progress at their beck and call. Anaia was, and still is, perfect in my eyes. It doesn’t matter what other think about their opinions. I am her mother. I am the voice she hears at the end of the day celebrating her triumphs with her or correcting her her failures with a loving hand. It doesn’t matter what others think when your child hits his or her milestones.

It’s all in God’s time.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. ~Matthew 6:34

I was two when I first walked, and now I have two college degrees and my own family. Don’t be afraid of the ‘what ifs’ in life; Be grateful for today, for tomorrow will come soon enough. Trust in the Lord that He will care for you and give you what you need. Notice I didn’t say give you what you want.

Be thankful for what you have.

Being comfortable with what I have was one of, if not the hardest, thing for me to do. I was raised to be always of what could happen.  I wasn’t raised to be comfortable in my own skin. Recall my third grade experience, when my excitement about being accepted by new friends was clouded by an opinion, not my own, that they only only pitied me?  That shaped me. That changed me and I’d always question the end results, instead of celebrating the “you go, girl!” moments God gave me. The truth is, it doesn’t matter what happens in your life.  Life is to be lead God first, all else, everyone second.  God has it. God knows. You don’t have to be in control. You aren’t in control.

God is.

I still have a really hard time reminding myself of this. When Anaia was two I noticed something was a little off. If she was watching TV, or doing something with her back turned to me, she’d not respond if I was talking to her. She’d often be in constant motion. Nothing huge, but it set off my Mommy spidey senses. I called early intervention. This program helps families with younger than school aged children. They came and evaluated Anaia to see what was going on and if there was anything of concern, they’d provide therapeutic services.

The evaluator was very kind and sweet. She said, “it’s hard to tell because she is so young, but I believe Anaia has ‘Audio Processing Disorder’ and sensory seeking issues.”

It’s and AUDIO issue… not an ATTENTION issue.

Audio Processing Disorder is when it takes a child longer than usual to hear what others say, process it, and act on what they heard. It can look like the child is defiant or a badly behaved. Sensory seeking issues manifest by a child always looking for sensory input; Always jumping, running, play rough or even hyper aware of environmental noises. It looks something like ADD, though it’s not.

Anaia has been in services since she was two. Speech therapy to help getting trough the ‘traffic-jam’ in her mind that makes it difficult to get her thoughts out of her head past her lips, and also help with processing information from other people in ways it can make sense to her.

Anaia also got occupation therapy (OT) for her sensory issues. When she was old enough to go to school, the school system provided the services for her. The school suggested special education. Although I had reservations, it turned out to be the best thing for her. Anaia has done really well in spite of a perfect storm of an issue. If you put her two issues together, it’s really hard for her to keep up with the pace in a mainstream classroom.

I’ve learned to make eye contact when I’m talking to her. It helps her focus. I also give her a moment to do what I ask her to do. Today it’s not nearly as noticeable as when she was younger. Anaia still struggles with sensory seeking behavior and she get swept away in her imagination at school.

To be honest so would I if I had to deal with 3rd grade common core math…

In spite of it all, she does really well, math being the exception. She has a great, and caring teacher this year but that wasn’t always the case in years previous. In the past, a teacher suggested medicating my child. No one who held a medical degree ever suggested that to me! Nope! I don’t think so! It’s not ADD and even if it was, who are you to tell me to drug my kid and why? To make your day easier? I don’t think so! I would think a Special Ed teacher would know, and have faith to recall, the diagnosis of a students and the best way to handle it.

This year Anaia was discharged from both OT and speech because she “doesn’t exhibit any sensory issues.” What?! I see it all the time, yet Ryan and I both t trust the Lord to help us and show us how to best help our daughter.

I am not really anxious about Anaia’s future. What’s going to happen is what’s going to happen. My worrying about it is not going to fix or change anything. I CHOOSE not to worry. I CHOOSE to place Anaia and her future in the hands of the Lord.

After all, it’s the safest place for her to be.

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Motherhood

Motherhood and CP… a guessing game of scientific proportions!

Two months after bringing Anaia home my mother left. Cue panic attack…

“I won’t grow up, I won’t grow up… I don’t wanna wear a tie…..”

While Ryan was working twelve-hour days, I was home alone with this truly amazing, but equally intimidating little being. My physical limitation aside, the biggest obstacle was extreme sleep deprivation. Although Ryan was working he’d help during the night. He was completely and totally in love with the new little lady in his life. I used to get out of bed and hide out of sight so I could listen to him sing “Anaia Grace with the beautiful face, Anaia Grace, Anaia Grace.”

One night, after hearing him standing there singing, there was a moment of absolute silence followed by a loud thud then a baby crying. I ran into the room to see Ryan and Anaia on the floor! He’d sung both of them to sleep. Don’t worry, Anaia was fine….

Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will. ~Romans 12:2

For me, sleep deprivation can be very dangerous and can trigger a seizure. Although I never had a one during that time (I’ve been seizure free for over eight years), I had auras, which is the feeling of a seizure coming on. Another issue was getting the right dosage of my medication to prevent seizure from occurring. Just as when I gained weight while pregnant and I had to increase the dosage, when I lost weight after giving birth I had to decrease the dose.

Here’s when my doctor almost had a heart attack…

“I’m forever blowing bubbles! Pretty bubbles in the air…..”

After giving birth I lost 40 pounds in one week! How or why did I lose that much weight in a week? I didn’t try to. Those 40 pounds were the result of how much extra amniotic fluid I was making coupled with losing weight of Anaia, who was six pounds at birth. While I was happy about this weight loss, because I was 186 at 5’1″, my doctor was a bit frazzled. I was losing weight too fast for her to keep up with the adjustments. Keeping me stable was going to be an act of God and I believe it was by His grace I never went into a full-blown seizure.

Neurologically speaking, I was a complete mess. Ryan probably should have taken me out in the back yard and put me out of my misery. God no doubt had his hand upon me. It took almost a full year after Anaia’s birth to feel “normal ” again. I found the best thing for me to do was to nap when Anaia was napping and not worry about so much about cleaning up and doing chores. I had to learn how to take care of myself first, so I could take care of my daughter.

As time went on I became less anxious and more comfortable with the daily routine of motherhood. I figured out how to do things is such a way that worked for me. I had feeding, dressing and diapering a baby with one hand down to a science. Anaia was incredibly patient with me slowly fumbling my way through all the baby/mommy tasks at hand. Thank God!

We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed.~2 Corinthians 4:8-9

But new obstacles would show up daily making every day a lesson on scientific hypotheses….

There are stairs at every main entrance to my house. It’s not handicapped accessible and my CP causes me to have balance issues. The basement door leading to the garage has steep stairs… a nightmare in the making for someone with CP, balance issues, and one normal arm to carry a baby to the car. The door leading to the back yard has no stairs, but I didn’t feel like carrying my baby through the backyard in two feet of snow to get to my car. So what I did if I had to go out is…

  1. Go down the basement stairs to the garage stairs without Anaia. Get to the garage open the car door, leave it open, and get the car seat ready.
  2. Go back up all the stairs and bundle up my baby.
  3. Pick the baby up and put her on my right shoulder.
  4. Go to the basement stairs and sit down.
  5. Scoot down the stairs on my butt while hold while holding Anaia.
  6. Stand up and put Anaia on my left shoulder while opening the door leading to the garage.
  7. Switch my daughter to my right side scoot down the garage stairs this time.
  8. Lift her up and into the car seat.
  9. Wipe the sweat that was dripping down my forehead.

I told you it was a science! When we got back home I would do it all over again only in the opposite direction.

Why do this? Because I’m not comfortable going down stairs without holding on because of balance issues, and life doesn’t stop for a mother who has CP. It was the safest option. Life consisted of scientific step-by-step solutions for every day happenings. I wouldn’t change anything. Every difficult thing I faced meant I was overcoming an obstacle and, in turn, finding out of what I was capable. Anaia wasn’t suffering or neglected. She was happy, healthy and growing like any other baby. Life wasn’t any different for her, nor was her mother different… every day things were just done differently.

“I’ve a piece of wood with some wheels on it…”

As she got older, I taught her not to be a “cookie cutter kid.” I taught her to think outside of the box and to be an individual. She’s a rough and tumble Tom-boy of a girl who loves Peter Pan and skate boarding, but will inform her father that he is going on a date with her and insists he go put on a suit and tie while she changes into a party dress. They have to look nice at the Italian restaurant.

Anaia is very outgoing and accepting of others. She is also very independent. I found out having a mother with CP wasn’t all that bad for her.

 

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I need to hear from you…

Today I made a personal  record  in my strict  curl!

keep-calm-and-testify-7Thirty pounds for four reps. Thirty pounds might  not  seem a lot, but compared  to where  I started  from it’s a huge improvement.  When I started  curling I wasn’t even  able  to  lift an empty  13 pound  bar, and had to tie my  left arm to my side because  it winged out making curling  impossible.  Turning my left hand over is extremely  difficult. My cerebral palsy has caused limited movement in my left hand and its ability to grasp items. It’s also fused my left elbow,  makes curling  difficult  and painful.

Today, a little  over a year since I began  powerlifting,  I curled 30 pounds  without  being  tied up. Wahoo!! I not only  made my muscles  stronger, I have better range of motion  as well.   With this excitement in mind, I encourage everyone to widen your prospective  on yourself.  Don’t  judge  yourself by what others can do, or even  what they find easy  to  do.  Judge  yourself on how far you as an individual  have come.

Come and hear, all you who fear God, and I will tell what he has done for my soul.~Psalm 66:16

I want to…. actually, I need to, hear from all of you about how far you’ve come… in anything. We’re in a world where we don’t celebrate each other often enough.  Especially today, in the wake of fear and pain  as terrorism strikes another country, let’s leave some hope behind.   I’ve a “Testimony” page.  Please leave a comment here and share a something about your personal best, or a victory you’ve had. It will be added to the Testimony page so encouragement can be spread in what tiny ways we can.

One ripple can created a wave, so lets celebrate a our inner power….

Motherhood

Adventures in diapering with cerebral palsy

I still can’t look at a chicken leg quite the same way….

The night we got to bring Anaia home after a week of being  without her was amazingly wonderful. She was in the NICU after she stopped breathing several times during her first 24 hours here on earth. As you remember from “Adventures in CP Motherhood,” the doctors thought it was because she was going through withdrawal from my epilepsy medication. Praise God, after only a week, she was released from the hospital and could finally come home.

The Lord is with me; I will not be afraid. What can mere mortals do to me? ~ Psalm 118:6

While that is a great bible verse, I didn’t have a ‘mere mortal’. I had a newborn. Totally different, completely intimidating beast! I was incredibly happy and terrified. Both emotions mixed together with excitement and joy. I was going to be the main person to take care of this five pound beautiful creation; the gift from God who couldn’t do anything for herself. (Anaia, by the way, means gift from God).  It was so overwhelming and different than the week before. In the hospital, as I held her while she slept and fed her, nurses were hovering at the ready. As nervous as I was about coming home, I think my husband, Ryan, was more so.

It was raining the night we took her home, and that didn’t help. Ryan drove our Buick le Saber (aka The Boat) two miles per hour all the way home. With a hospital 45 minutes away on a good day, you can imagine how long that took.

We made the trip home in silence because Ryan had to concentrate and our voices, according to him, would make him veer off the road. Honestly, a part of me believed him. Thankfully we made it home without the car coming to life and killing us all.

My Mom and Anaia

I felt certain I was going to break my newborn.  Rest assured, Anaia is still in one piece to this day. I have to thank my mother for staying with us for two months.  That night, Ryan and I got a taste of what life was going to be like with a baby in the house. My mother, Ryan and I, were up every two hours feeding and changing the little being that now ruled the house. My mother was in awe of modern day diapers with the self-sticking tape closure on the sides.

I guess she used something called safety pins on my cloth diapers…

She showed Ryan and I how to take off the dirty diaper, wipe clean our amazingly dirty daughter, put on diaper cream, and secure the new diaper on the never-ceasing-to-stop-wiggling baby.

Ryan was a fast learner. He was very aware of the whole wiping front to back thing. He made a point to remind me of just that when it was my turn to change her. Speaking about me changing diapers… I’m sure it was a sight to behold. I was constantly dead on my feet from being sleep deprived which made me even more uncoordinated than I already felt.  I was afraid I was going to pull an arm or a leg off my baby, or worse, one of each! There I was, looking down at my baby, who was in desperate need of a new diaper, and me with images of a chicken leg in my hand.

I wasn’t physically able to change her diaper the way my mother showed me, so the lessons were out the window. Most of the time I asked her to do it for me. That is until the faithful day that God said, “Linda, for the love of me, she’s your baby, you change her diaper!”

And He has said to me, “My grace is sufficient for you, for power is perfected in weakness ” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. ~ 2 Corinthians 12:9

Ryan was at work and my mother was out grocery shopping. Nobody was at home except me and a newborn with a blowout poop of a diaper! My first thought was, Sweet Jesus! My second thought was, where, for the love of God, is my mother? I mean, it doesn’t take that long to get groceries. It was probably only an hour, if that. So, I did what any grown woman would have done….

I called my Mommy in a panic.

“Mom, you gotta come home now! Anaia pooped and it’s everywhere!”

My mother (trying to be supportive but yet fighting back  fit of laughter) said, “I’ll be home as soon as I can”

As soon as she can? Not good enough! Now! Come home now!

The famous diaper pail sausage. I’ve ruined sausage for many people this way…

Panicked thoughts turned into, Ok Linda what are you going to do? Your newborn needs you.  Umm… maybe I can wait until Mom gets home? Sniffing the air quickly told me that was not an option.  Talking out loud, I said, “Ok, little one, here we go. If I pull off your arms or legs, Mommy didn’t mean to.” I put Anaia on the changing table and unzipped her onesie. By the way, onesies were my best friend. They didn’t go over the head; less of a chance for me to turn my daughter into KFC. Such made it easy for me to get her clothing on and off, and when she started to crawl I could reach down and pick her up in the middle of the back by the onesie.

But back to changing diapers…

I unzipped her onesie, burned it, and took off the dirty diaper wondering how breast milk and all natural formula could ever have that kind of  effect on a baby’s stomach. I used at least a half a pack of wipes to clean her (making sure I wiped in the proper direction, thank-you Ryan) and, in the process of wiping, I filled up the diaper pail making a diaper pail “sausage.” I then got a new diaper, laid it open, picked up a clean, naked baby and put her butt on the diaper. While taping that diaper onto her and finding a clean onesie, my heart was pounding like mad…until I looked at my baby.

“I didn’t rip off any of your limbs!” I exclaimed.

When my mother got home Miss Anaia was happy, clean and in one piece.

The moral here? Don’t be afraid to live your dreams. Every problem has a solution. Your children don’t need you to be perfect, or fearless, they just need your love and guidance.

I promise you won’t break them.

Contemplations

Look up from your phone: what we lose when we lose eye contact

“Rejoice with those who rejoice, weep with those who weep.”~Romans 12:15

Literary fiction exercises a reader’s imagination in matters of character and emotional nuances.” ~Sherry Turkle

Cannot believe found candle that looked just like that darn thing….

Jennifer here…stepping in to take over the blog again because the more I learn about the power of empathy, the more I have to speak out about it. I was sharing a lot about my thoughts on this topic  (among other things that happen in the life of an author with Pure-O, OCD) on the blog on my website, but thought this topic is something worth posting over here too. One of the many things that connected Linda and I early on was our ability to converse.. We’d spend hours on end sitting in the dark on a dorm room floor, a sea-foam green pillar candle lit between us, having extraordinarily rich and deep conversations.  Anyone who has spent time with Linda knows how engaging of a personality she is. The woman  is infectious, in a good way! Whenever one of us would mention the need for that candle during the day, we knew we’d be in for either an enlightening night… or a rough one.

We fed off each other. We read  body language and that spurred more conversation.

When was the last time you noticed emotional nuances? The reply should be just now, or two minutes ago, or whatever is the last amount of time you spent in the room with another person. Every second we stand before another person we are giving off emotional cues about our inner, unspoken feelings that add to the conversation and our ability to build empathy. That is totally lost in the digital age.  By spending so much time with screens in front of our faces we lose out on the nuances of body language.

Imagine  this: Lets say we are sitting together in a room and you declare  “Let’s go see The Shack!”   I slap my hand down on the arm of my chair, point to the ceiling,  nod and say “Great. Lets do that. What time?”  What feeling do you get? Lets say instead, I reply by rolling my eyes, hanging my head to my shoulder, stare at the floor, then say “Great. Lets do that. What time?”  What feeling do you get?

In the first instance, body language would show enthusiasm and engagement; in the second disengagement, boredom, maybe even disgust.

Now imagine a screen in front of you and you type the same question to the person on the opposite end. All you see are letters forming the words, “Great. Lets do that. What time?”  Sans any visual clues you have zero idea of what is really being thought and felt. Without this type of engagement, where we get to read another person’s body cues, there is only so far empathy can build. It’s common knowledge that using all caps means someone is yelling at you–but are they really angry? Can you see their pupils dilate or their fists clench? If you type something funny is the person really “ROTFL” or are they sitting there stone-face, bored and saying that to humor you?  A problems existing in today’s world is that folks are forgetting the importance of being together. What suffers is empathy. Reading body language builds connection.

Sherry Turkle of “Reclaiming Conversation” wrote of something called “disconnection anxiety.” That’s a phenomenon of when people who are always plugged in to there phones, emails, or computers finally get to be alone–they can’t handle it. Concentration suffers, boredom sets and the fear of falling off the radar becomes too much. Alone–is the worst thing possible. When there is a constants stream of  blogs to read, emails to check and things to like on Facebook or Twitter, there is little time being spent on just being quiet enough to understand the benefits of true solitude.

Too much time spent focused online or on phones leads to an inability to take time for oneself. And, if one cant take time for oneself, how can they take time for another?

God created us to be in relationships with one another, and most of all, in a relationship with Him. Let’s not lose site of what it means to feed off our emotional nuances. That “like” on Facebook is not the measure of your popularity or worth and that email can wait. So much more can be learned by the subtle tilt of a head or flash of a smile.

Sit down with someone today without a phone or computer nearby. It matters.

Something to ponder as Lent continues….

~Jennifer