The diagnosis

I was pregnant with my first baby. The day had finally come for the targeted ultrasound. The doctor had told us about the 3d images and we were excited to get a glimpse to see what our son would look like, whose nose would he have, would he look familiar or at this stage to babies look like aliens. So many questions but mostly just excitement! This was one of the few appointments my husband could make it to and we were excited to be able to go together and check up on our babies growth. We went in the room and the sonographer started to look over our cute bundle of joy within the womb. She checked his heart rate and looked for fingers and toes, she checked his organs but...she kept going back to his back, after the third time I saw something that didn't look normal to me, there was a sac on his back, I thought "a sac.....a sac....I know I learned about this in anatomy in high school, this isn't good...come on...remember Megan....remember"

"I am going to get your doctor. Why don't you wait out in this room." I snapped back into the moment...."okay." I said. We waited in the middle of all the doctor offices. I told my husband that something was wrong and that the sonographer kept looking at something. He tried to reassure me that everything was okay, but I knew better, and later I would find out, so did he. After what felt like forever the doctor finally came and spoke with us.  Her words cut like a knife...."your baby has spina bifida. He may never walk, he may be incontinent of bowel and bladder and he may be totally fine. The range is so big, we just don't know. We will have to wait until he is born to know what his mobility is like. I am sorry. Do you have any questions?" I fell against my husband's chest and sobbed, a very quite sob, my heart was broken.

The next several weeks and months were filled with doctor appointments, lots of web research and explaining to friends, family and co workers what spina bifida is, to the best of my ability. The nurse at primary children's told me that most parents just want to start out and let their baby just be their baby. They don't want to worry too much about the details of spina bifida. Since they couldn't tell me whether or not my son would walk that seemed like sound advice and I felt the same feeling that she explained other parents feeling. I remember wanting my son to stay in my womb. Where it was safe and warm and where I could feel him kicking. Feeling him kicking was the only thing that got me through the next several months. Anytime I worried about his future and what his life would be like he would get extra wiggly in my stomach and I told myself it was his way of reassuring me that he was strong enough to handle the life he had been given. I really had no idea how strong my little man would actually be.

The time came for him to be born and I can honestly say I felt nothing but excitement. I was ready to welcome him into this world and give him the best shot a mother has ever given her son, or at least the best I could possibly do. :)



Here is his opening in his spine before they closed it.



I had no idea how much my love for him would grow from the moment I first saw and held him and how it would continue to grow. Because I didn't know this I could never have imagined the difficulties I was about to endure and the deep need for a shoulder to cry on. I grew up around children and babies and so I never felt fear at the daily tasks of becoming a mother. I was surprised how reluctant I was to touch him, he seemed so fragile and I felt so ill equipped to take care of his needs. I remember asking the nurses to come in and help me pick him up so that I could nurse him. He was hooked to monitors, oxygen, an IV, and had a catheter in. Also I couldn't touch his back. Then there was a lovely nurse that decided it was time to teach me how to unhook the things that I could and how to position the cords. It was that little bit of knowledge that made me start to feel like his mother. Later my mother helped me position him onto my chest and lay down with him. Up until that point I had been nursing him with two pillows on my lap to keep him in a good position without touching his back. He was two days old and in that moment that I finally felt my baby lay his head against my chest, then I finally felt like his mother and he finally felt like my baby. Maternal instinct kicked in.

The tears just flowed and flowed as I held him against my chest for the first time.

The week at the hospital was difficult and I never left his side unless another family member was there. After a week we were able to go home and I was able to just let him be my baby, for a little while. A week later he started to show signs of hydrocephalus  . The doctors had warned us that 80% of children with Spina Bifida develop hydrocephalus. Still I hoped he wouldn't be one. He started to act lethargic and then stopped responding to sound. My mother told me I needed to take him in, I cried "but then they will do surgery!!" Of course that is what he needed and that is what we did. Back to the hospital we went. He came out from surgery and immediately reacted to sound again, his eyes got their sparkle back and I knew everything was better in our little world.

As the months went on we found out more and more about spina bifida, at each clinic visit and with each visit my heart seemed to break a little more. Time went on and we found out more and more about his limitations and abilities. The best part of this story is that I realized he was just like any other baby. He cried when he was hungry, when he learned to crawl he got into everything, his laughter lit up my world and his tenacity enthralled me.

We followed the nurses advice and we just let him be our baby. Sure there were doctor appointments, surgeries and therapy but at home he was just Carl James. We could tell early on that he had a goofy, sunny personality and we knew that though there were trials and there would continue to be trials our lives were better with him in it. I know many mothers that were either asked if they wanted to abort their child with spina bifida or the doctors tried to convince the mother to do so, but all are glad that they didn't. Having a child with a disability is hard but there are so many things we appreciate now that we probably would have taken for granted before. We have a different perspective now and we have a greater capacity to love and appreciate others and to appreciate the happy moments in life.

If you have been asked to go on this journey I can promise you that strength will be added to you, joy will enter your life, and your life, though difficult, will be better because you loved someone that at first glance may seem broken but on further examination is more whole than most people you have met or will meet in your life.



Yucky Mirrors

This morning as I was picking up the bathroom I happened to notice the current “yucky” state of my bathroom mirror. There were handprints from children and smears of toothpaste scattered all over the mirror. As I looked in the mirror I discovered how hard it was to actually see myself. I started to think of how I could use this as a lesson to teach my children. I called them in to show them the yucky state of the mirror and asked “Is it kind of hard to see yourself in this mirror when it’s all dirty like that?” They all agreed that it was. I told them to come back in a few minutes. I cleaned the mirror until it was sparkling and there was a perfect reflection of myself in it. I called the children back and first pointed out how well I could see all of their beautiful faces. I proceeded to tell them this….Sometimes in life we get like this mirror.  On the outside we still look clean but inside we feel dirty from mistakes we have made. As we look within ourselves we cant see past the dirty. All we see is the dirty and so we believe that, that is all we are. We carry that burden with us and forget how beautiful we really are underneath all of they yuck. But when we turn to our God and our Savior we can be wiped clean and then we can see ourselves for who we truly are. (I then went on to explain that, that is how baptism works) Thank goodness for a dirty mirror!

Bedtime Snuggles

I had a dream the other night. In my dream I was 17 years old again and all of my siblings were the age they were when I was 17. In my dream my mother had passed and I felt so angry at the world and even angry at her for leaving me. I am the oldest girl of 7 children and I felt the need to take on her role as nurturer. I worried..."What will I teach my younger sister about dating, my mom should be here to teach the one younger than her to shave her legs and how to handle her period, and my youngest sister has so much to learn about being a woman, I dont know how to be a woman!" I felt grief at the loss of my mother, my idol, and I felt overwhelmed and burdened by what I felt was now my responsibility.

When I awoke that morning my thoughts turned to my girls, ages 6, 6, and 2.  I have spent many days wondering what good I do being a stay at home mom. What part of the day really mattered and being overwhelmed by the mundane. As I awoke that morning though, something felt different. The smaller things were magnified for me. As I went throughout the day and as I have gone throughout the week I have been able to catch some of these moments in real time. I have been able to pinpoint some of them; things I was blind to before. 

Like this moment...I have the garbage bag in my hands ready to take it out and my son starts talking, he takes forever to form his thoughts into words and when he finally does he forgets crucial words or ideas even complete phrases so he hardly makes sense,  I am about to walk toward the door halfway through his sentence when I hear the word "stop" in my head, I stopped, I listened, I responded, we smiled. It got me thinking....how many times do I walk away while he is talking? I always let him finish but I am always ready to go out of the room as soon as that one thought is done. What am I home for? I call myself a stay at home mom, not a stay at home maid.  Unfortunately all of us have to clean at some point but not in such a rush or so engrossed that we totally miss out on the moments we stayed home for.

Tonight I got home from a busy night, my daughter was extra cuddly and as I went over the past few  days I realized she has been really cuddly for a few days. I realized she needed a moment to wind down and maybe cry a bit. So we cuddled and we talked and there were moments I thought she was going to cry all night but I felt like I needed to just listen and be on her timetable. Eventually she told me she wanted my husband and I to be safe (she was concerened for our safety). I remember feeling that as a child, "what if something happens to my mom or dad?" It was a legitimate concern for her and probably the first time she realized that we arent superhumans, we are vulnerable too. Had I just sent her to bed I would have missed the moment. 

After she shared with me the room felt different, we talked about a few things and I was able to express my love for her and my faith in her Heavenly Father who loves her. I could feel that I gained some of her trust tonight. That's a wonderful feeling. That was worth leaving picking up dishes from dinner for tommorow morning.  I might have missed the window had I waited.

Here she is sleeping next to me while I write

That's something I am going to work on being better at. Living in the present and detecting the more subtle  needs of my children. Noticing and taking advantage of those precious moments. 

And they heard the echoes of their mothers

I remember those time before I was a mother, and I would be out in public, and see a parent scolding or teaching their child, saying things like "You can't bite your sister, it hurts your sister when you bite her." and would think "I wonder if they know how stupid they sound? I am never going to say anything that dumb." Never say never. :)

Or as you were growing up and your mother would say something that seemed too unfair or too demanding and you thought "I won't be like that when I am a mom, when I am a mom I will be fair."

Then I became a parent "Dun, Dun, Dun!"....

I remember when my son was 3 years old he started to point and shake his finger when he was mad, like if I did something he didn't like then he would point and cry and say "NO!....NO!" I remember thinking "Where did he learn that? I don't do that; do I? I hated it when my parents did that. I told myself I would never do that." So I paid attention. Uh, yeah, I did that, and I did that a lot!

My mother told me about a time when I was four years old. I lined up all of my stuffed animals on my bed and proceeded to get them in trouble. She watched me from the hall and thought "Is that how I sound?" Twenty something years later I watched my 2 year old do the same thing and had the same thought.

Watching my children on the phone is the most comical thing ever. I am pretty sure I don't sound like that, unless I was pretending I was on the phone because a little one came up to me telling me her imaginary friend was on the phone. I guess that's what they copy, it's way more fun.

Kids are like a great big mirror where you can see all of yourself. The good, the bad, the ugly. The good news is my kids also mimic the good things I do, like the way I say "Awww! You look beautiful" when I see my two year old changed dresses for the third time and has come up to show me. They mimic the way I bandage an owie, or the way I comfort a sad child. My girls mimic the way I do my hair or the way I get dressed. My son repeats almost everything I say, with NO filter, not realizing that not everything in our home needs to be publicized. He even goes as far as to lecture his dad if his dad is not doing things the way my son is used to seeing them done.

Children teach us to look inward, to readjust and even at times they teach us that everything is okay just the way it is. Yesterday I had my  hair up half way as I was straightening the bottom layers, my two year old daughter said "Mommy I like your hair." I told her thank you.

As I hear my mother in my voice and my words and as I hear my children repeating my words, my significance in this world is much clearer. The significance of mothers is much clearer. I made the accidental mistake of telling my husband I looked (or felt) fat in front of my 5 year old daughter and I heard her blurt out "You are not fat!" as she touched my stomach as if to soothe the wound I just gave it. Having 3 daughters I felt it was very important to be careful what I said about my body in front of them and to exclude any negative talk about my body at all, I want them to have healthy body images. As you can see I am still working on it. :)

As the echoes of my parents ring in my head, I am reverenced for the small, daily things of this world. The power of words, and the power of actions. I hope that my intentions will come through in my echoes but that's quite a risk to take, and so I change, I adjust, I explain and I ask forgiveness, every day and I will continue to do so.  So that my echo may be an echo for good, just as with the stripling warriors....Alma 56:46-48

Fyi...It turns out that I am just as "stupid" as the stranger out in public teaching her child and I am just as "unfair and demanding" as my mother. I choose to allow myself to say the "stupid" (or obvious) things to my two year old because they are not obvious to her and I choose to be what seems unfair or demanding to my children, all for my children's sake.