Transatlantic Tuesdays: Walking on Eggshells

Dear Maxine,

Well, life has really taken me places recently, so much that I completely forgot that it was my turn to respond to you, so I apologize that I'm finally writing a week late. You were kind and didn't even bug me about it. You really do take things at a slow pace, and I love it. No pressure.

Which reminds me of what you said in your last letter:

"Since Rukai has come into our world, the big has got smaller and the small has got bigger and everything meets in the middle in a place called 'What Rukai Needs.'"

I love your motherhood philosophy--all mothers would do well to take life as it comes with their children. Comparing only brings discontent. Your mantra, "At the speed of Rukai," is inspired. Go, you.

And now to your question (from two weeks ago--sorry, again):

Hints of spring are scooting around these shores and I know there's been a shortage of the white stuff on the ground over there as the weather settles. With the warmer weather on the horizon I'd ask what your biggest concerns or worries are when you get out and about, outside the confines of the safe space of 'Home'. I'm always worried I'll bump into some horrible person who says something for which I'm unprepared and I won't stand up for my son as well as I should. I don't want to be caught off guard. What are those worries for you? How do you prepare to face them?

Well, there's always a shortage of white stuff in good old Southern California, but the trees are blooming and scenting the air around them and it's my favorite time of year. Yes, we will be getting out and about more--in fact, we are leaving soon to visit family out of state for the Easter holiday and spring break. Luckily, this visit will be with family, and they never judge me or my kids, but we will for sure be visiting some sites and taking little trips in that state to places that are not too familiar.

I'm not going to lie--I get stressed, EASILY, when going places with my entire family. A 12-year-old daughter on the spectrum, a 9-year-old son who is quickly becoming a master negotiator, and a 3-year-old son who needs more attention than them all. My husband will be on break with us, so it will be nice to have extra help, and I'll have some family to help, but don't mothers almost always take the brunt of it all? They feel the difficulty, the distress, the disarray, more than anyone else, and this means that I don't always enjoy myself while I'm out with my family. I'm trying to let go more and not try to control every situation...but that's another post for another day.

I guess what worries me the most is the unpredictable moments that will inevitably happen with my daughter. Take going to a bookstore, for example. My daughter loves books. Even when I tell her, repeatedly, that we are not buying anything--we are just looking--she will no doubt find SOMETHING in that store that she absolutely has to have. Now, for most kids, the parent can say, "Now dear, remember, I told you that we aren't buying anything today." But not me. Telling her that would mean certain death. It would mean a total meltdown, because once she has her heart set on something, there's no going back. Nothing will appease her, or calm her. And I have dragged her out of stores many times while she kicked and screamed. Sure, that seems okay if, say, my 3-year-old does it (no one would bat an eye, more likely smile knowingly if they've ever parented at toddler), but when it's a tall 12-year-old? No knowing smiles--only quiet whispers with the person nearby, glaring eyes directed our way, heads shaking in disapproval and shock.

I feel like I'm walking on egg shells whenever I go out in public. Trying so hard to avoid any tantrums or meltdowns. It's exhausting, physically and mentally. And I've been doing it for a long time now. I felt like I was completely spent about a year ago--like I had hit a wall, literally, and had nothing left to give. And then I started writing more, and sharing my writing, and things began to turn around. Writing has been my therapy.

So here's to my upcoming family trip--may I learn to worry less and enjoy more (haha!) Life is meant to be enjoyed, right? As long as I can enjoy it through the lens of my children, it is possible.

And now for your question of the week:

I talked about how I hit a wall last year. Have you hit your wall? Have you ever felt spent as a mother? What helps, (or helped) you overcome this?

Sincerely,

Your friend, Kera, across the wide Atlantic

Links to all Transatlantic Tuesdays Posts:
02 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/transatlantic-tuesday-letters-from.html
02 Feb 2016  |  http://thespecialreds.blogspot.co.uk/2016/02/transatlantic-tuesdays-letters-from.html

09 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/no-but-i-have-son.html

16 Feb 2016  |  http://thespecialreds.blogspot.co.uk/2016/02/transatlantic-tuesdays-4-take-high-road.html

23 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/pride-of-my-pride-transatlantictuesdays.html

01 Mar 2016  |  http://thespecialreds.blogspot.co.uk/2016/03/transatlantic-tuesdays-hardest-moment.html

8 Mar 2016 | http://downinfrontplease.blogspot.co.uk/2016/03/life-at-speed-of-rukai.html

My First Ebook: When a Diagnosis Changes Everything

I'm happy to share with you my first ebook, which is a collection of stories from 11 of my amazing writer friends I've made during the last year. Yes, they've been published on several different sites, but above all, they're amazing moms and advocates for their children.

It's available HERE at 50% off (just $5) when you use the code HC36Q!

Or, you can get the ebook for FREE when you do the following:

1. Like "The Special Reds" on Facebook if you haven't already.

2. Share this post to Facebook.

3. Subscribe to The Special Reds by email (on the right sidebar of my site, on the popup window of my site, or on the left sidebar directly from my FB page).

4. Leave a comment on this post letting me know you were here!

You have until April 2nd, Autism Awareness Day, to complete the requirements.

In honor of this important day, I will send the ebook to all my subscribers! (It also happens to be my birthday, so I'd love to give you all a gift, too!)

I hope you will take advantage of this offer and join my mailing list so you can continue to get these special offers!

*******

From the introduction:

"Diagnosis. It’s a word that often doesn’t bring happy feelings.

Often, by the time you have gotten a diagnosis for your child, you’ve already climbed a mountain. You’ve sat by and watched your child slowly slip away, or present strange symptoms, or not progress typically on the milestone curve. And you felt fear—real, true fear, about what the differences might mean for your child’s future.

For some, the diagnosis might have come at birth—as a complete surprise. For others, the diagnosis might take years to discover—years of doctor visits, blood tests, specialists, and hospital stays. And for some very few, even after all those years of hoping and praying, a diagnosis remains unknown.

Whatever the path to your child’s diagnosis, there was a journey taken. You learned just how much you love your child—how far you are willing to travel to get answers so that unsettling feeling can leave your troubled soul. You kept climbing and reaching only to get to the top and realize that the diagnosis is only the beginning. Now real life can begin with your child, and, armed with more knowledge and support, you trudge down the other side, having no idea what awaits you. But you keep on walking, because that’s what mothers do.

In the following pages, eleven incredible mothers share their children’s diagnosis stories. Though each one is vastly different, one thing remains: a diagnosis changes everything."

Celebrate Our Differences

I love going on bike rides with my family. It makes me feel like we're so...normal, even though we are far from it.

No, that's not my family in the picture. But don't they look so normal and perfect? I wonder what secrets they are hiding.

Today we rode to a nearby park. When we got there, Nathan ran around kicking the soccer ball, Julianna went to the swings, and my husband and Blake played basketball. So...normal.

After a little while, the kids headed for the playground where there were some cute little girls playing with their dad and grandma. They seemed so sweet and perfect. Suddenly, Julianna leaned to me and said, "Mommy, that girl doesn't have an ear."

I thought that wasn't possible. The kids continued playing, and this beautiful little girl slid down the slide near me. As she ran by, her long black ponytail bouncing, I saw that her ear was very small and disfigured, as well as the side of her face, slightly. She turned to look at me, smiled, and I smiled back.

I said to Julianna, "You were right. Her ear is different. But that's okay. Everyone has things that make them different. You do, too."

It made me think how much people try to look normal, to fit in. Why is that? What is wrong with being different? What is wrong with talking about our differences? I wanted so much to ask the dad and grandma about their little girl, but then I felt like I'd be pointing out her difference, so instead, I smiled at them, wishing they could read my mind and know that I get it. I know what it's like to have kids that are different.

If they only knew that each one of my kids has something that makes them "un-normal." If they knew that my daughter had autism, that my son was born with a rare blood disorder, that my other son with a birth defect, probably like their little girl was.

Who even has a normal family anymore? I think it's time to celebrate differences and embrace what makes our families unique. Hiding behind the differences only keeps others from connecting to the very people that could be a blessing in their lives. This family could have been a blessing in ours, but I didn't say anything, and I can only hope that we see them again.

I have learned that living in the open is much more freeing than hiding what I am facing as a parent. The friendships and relationships I have made as a result are priceless. Normal is so overrated.

How Would Your Children "Rate" You?

I remember it was about a year ago, at the end of another long, draining day as a mom. The bedtime battle was about to begin. Interesting how much energy children have at bedtime, and how much energy I have to muster to make it happen. Because stress accumulates, much like a teapot kettle about to whistle, I typically blow off steam at my children during bedtime. I'm tired, and they're not, and I just want time to myself to let my brain recharge for the next day.

On this particular day, though, I must have let off so much steam that I felt bad, guilty. I felt like I was harming my children through my anger and stress, and they didn't deserve it. I could do better, I thought. I NEED to do better. Don't moms always think this about themselves? Guilt is such an easy emotion to grasp, at any given moment.

Once I finally got them settled down, I suddenly had the thought: Being a mom is like my "job" right now. It's my position I have to fill, every single day, and it's a big one. But it's not like a typical job one might have outside the home, where you have a boss watching your performance and giving you regular critique. If my kids were to "critique" me, or rate me, what would they say? I wondered. They are watching me, like a boss might, right?

Given that this day was already a flop, in my opinion, I was scared to ask them. So I decided to ask them individually. I went to my middle child, and asked, "Do you know what it means to rate a person, like on a scale from 1-10?"

"Yes, I know what that means," he replied.

"Okay, so if you were to rate me as a MOM, on a scale of 1-10, what would you give me?"

Before I could even cringe or back away, this is what he said: "10!!! Mommy, you are a 10!!!" He held up both of his hands to show his 10 fingers for even more emphasis.

My eyes welled up with tears. What did I do to deserve this? I wondered. Doesn't he remember how mean I just was to him? All the yelling and demanding that he get in bed so I could get a moment to myself?

I wiped the tears from my eyes and asked, "R-rr-really? You think I'm a ten?"

He smiled again and flashed those fingers, dancing them around as I exited his bedroom.

Stunned, I walked to my daughter in the next room. I wanted to make sure she understood what a rating scale meant first (being on the autism spectrum makes this a little more challenging). "Do you know what it means to rate something from a scale of 1-10? So, if I asked you how much you liked, say, ice cream, a 10 would be you like it a lot, a 1 would be not at all, a 5 would be you like it okay. Does that make sense? So, how much do you like ice cream?"

"Umm....a 10," she replied.

"Good. Okay, so if you were to say how good of a mom I was, on a scale from 1-10, what would you say?" I braced myself for brutal honesty.

"Umm...a 10, I think," she said.

"Wow, really? Thank you, sweetie!" I squeezed her shoulder, and peeked into my son's room. He put up those ten fingers with a million-dollar grin. Before I went downstairs, I just had to ask him, "Why did you give me a 10? Even when I'm mean to you sometimes?"

"Because you do things for me, and you take care of me," was his simple response.

I walked downstairs in a haze, feeling on top of the world. My little "bosses" just gave me a perfect rating. Maybe I wasn't messing up so badly after all.

What I realized from this experience is that love matters more than anything else. Moms will make mistakes all the time, but it doesn't mean we don't love our children any less. Our children can feel this love, regardless of the many mistakes we make. They forgive us because they love us. I guess moms need to learn to forgive themselves, and see themselves the way their children do, as "perfect 10's," because we are, in their eyes. Don't be your own worst critic—you are doing a great job. Just ask your children.

Time Out For Women, 2016

For three years now, I've been fortunate enough to attend Time Out For Women, an event produced by Deseret Book. There are speakers and performers on Friday evening and most of the day Saturday. I always look forward to this weekend, because I know that I will come away learning things that will give me strength to go forward as a mother, wife, and individual. So we ventured to Long Beach, which took much longer than planned thanks to a freak thunderstorm during the drive, but made it there safely, ready to soak in all the spiritual inspiration we could get.

Friday night there were two speakers: Elaine S. Dalton, former General Young Women President; Whitney Johnson, an entrepreneur/author/businesswoman; and a female vocal group called Mercy River. Some thoughts that I wrote down from these great women:

Elaine Dalton:

-We need to strengthen our faith--in ourselves and in the Gospel--and go to the scriptures
-keep our focus on the Savior, not on the tumult around us, EVERY SINGLE DAY
-Doctrine and Covenants 121:45--let virtue garnish thy thoughts unceasingly; then shall thy confidence wax strong in the presence of God and the Holy Ghost will be a constant companion
-we need to be virtuous and pure to have confidence
-we can be more than we allow ourselves--don't live below your privileges
-we need to ask the Lord to walk with us through our trials--we can't do it alone
-covenants give comfort, especially when a loved one dies or you have a child with challenges

Mercy River:
-favorite song: "Long for Home;" they also said, one thing we can always do is love our children the way God loves them

Whitney Johnson:
-described her love of sugar and how she's been off sugar for a few months
-talk to God out loud--creates a moment with Him and makes our prayers come alive
-hear His voice--use our ears--singing together can make our hearts beat in unison
-bow down before God--experience time with God with your whole being
-taking the sacrament is an experience with God--use full engagement of your senses
-reach out and touch Him--hugging someone can give a connection and help share the burden of someone else
-because she's not trying to find God in sugar, she's finding him in a lot more places
-Will you give up your "sugar" so God can show up to you?

Saturday we heard from more great speakers and performers. Here are some of the highlights:

Lisa Valentine Clark (author, youtube channel producer)
-read the words to the hymn "Ere the Sun Goes Down" and how it relates to motherhood
-becoming something is more important than the doing
-when we feel like we can't do it anymore, we ask for help--we pray

April Perry and her daughter (local attendee asked to speak; she's also a friend of mine)
-spoke about her experience helping her mother with Alzheimers and how it has taught her children
-ask the Lord how he wants to heal you--heartbreak can heal and bind you closer to the Lord

Laurel C. Day (author/speaker)
-spoke about the atonement
-find safety in his wounds, find comfort in his scars, find peace in his pain
-two kinds of scars--fallen world scars and expectation scars
-don't focus on what you don't have--think of what you do have and find comfort
-when you don't get your miracle, let the miracle be seen through your healed heart

Emily Freeman (author/speaker)
-what if my only motive was LOVE?
-look for what is common between you and others
-Luke 1:53--He filled our wanting with good things


Things I realized after attending that I need to change in my life:
-I need to make scripture reading a priority again so I know that I'm doing what my Heavenly Father wants me to do, every day
-I need to make sure I am living a fully virtuous life so that I can have CONFIDENCE that what I'm doing is right, and also have the Holy Ghost to guide me in every decision I make
-I need to remember that my life still has plenty of miracles even though it might not be what I expected it to be

Transatlantic Tuesdays: The Hardest Moment for Me Thus Far, and How a Friend Helped Me

 

#TransatlanticTuesdays is a collaboration between me (in the US) and Maxine who blogs at Down in Front, Please (in the UK) - sharing our journeys in the form of letters to one another.

Links to play catch up are at the end of this post.


Dear Maxine,

I am glad to hear you are feeling better. I absolutely loved reading the story of Rukai's path to walking freedom. I can very much relate to your experience--my oldest, Julianna, also had hypotonia and was a late walker (or what some might call late). At least she wasn't on the typical bell curve. She was scared to walk, and we did go the therapy route. Lots of physical therapy. It paid off, and she began walking around 20 months old. Didn't mean her gross motor skills were in check, but walking was the first step. Certainly watching her meet milestones has made me realize how much I take for granted in this life. I have it so good, and should never complain, really.

So on to your fabulous question: Tell me about a time when you really believe you were only able to get through a difficult time because your support network circled the wagons and lifted you? Do those who supported you then really know just how much they helped you?

Oh my. I'm sitting here trying to pinpoint just ONE difficult time. I'm trying to gather up in my mind the many, many people who have supported me over the last decade and get me through my motherhood journey thus far. But there is one experience that stands above the rest, and it's something I've never written about before, so here goes.

Hands down, the most difficult thing I've gone through with my three children (and that has been A LOT) is when my youngest had his palate repair surgery. He was 9 months old at the time. Previous to this, the surgery had been postponed TWICE by the surgeon due to conflicts, so by the time the actual day arrived, we were more than ready, and twice as anxious. Even though we had met with Nathan's surgeon a good number of times previous to this, and thought we knew what we were getting ourselves into, we really had NO idea what to expect.

The checking in part, and handing him off to the surgeon part were not as bad as I expected. I thought I would cry as he was wheeled away into those double doors, but I didn't. We went down to the waiting area with our "number" to watch on the big screen and sat there, surrounded by other parents also waiting for surgeries. Talk about a tense feeling in the room. Not much talking, other than those within their own families. We were all there for very tough reasons, and silence was just easier.

When the surgeons came down and announced that the surgery went well, we felt relieved. We were expecting it to go well because we felt confident in our surgeon. A few minutes later we were able to go up and see our little baby boy in the recovery area.

Now here's where it gets hard for me. Even typing this, I am crying. Just thinking about this moment still haunts me to my very heart and soul. I walked over to my baby and saw his very swollen face and jaw, saw how he could not even close his mouth, saw how groggy he looked, how much pain he was in--it brought me to my knees. I couldn't even bear to hold him the first few hours. The surgeons don't tell you how bad it will be after, maybe because ignorance means more courage at the get-go? I'm not really sure. All we knew about the recovery was that most babies go home after one night in the hospital and are able to drink from the bottle just fine afterward. No big deal--we can handle that!

Well, this didn't happen with Nathan. Joel, my husband, was able to stay the first night, but the next day he had to go back to work. I stayed there with Nathan the next day, struggling to get him to eat, and he still wouldn't. The pain was awful for him. When it looked like we would be staying another night, I felt like there was no hope in sight. How will we get through this? When will my little guy eat again? How will I be able to take care of him when we get home? I've never been so worried or scared as mom, ever.

Later that evening, after Joel came to visit and went home to take care of the other kids, one of my dear friends called to ask how I was doing. I lied and said things were going okay. We talked for a bit, and hung up. About an hour later, she surprised me at the hospital to say hello and even brought me some food and treats. She sat with me as I cried and told her how challenging this surgery had been for me, especially for Nathan. She listened to me. She was there when I really needed someone, and she still has been.

Support as a parent of exceptional needs children is vital. It is the lifeline. We simply can't do this alone, no matter how much we think we can. If we try to do it alone, we will probably drown. The old saying, "It takes a village to raise a child," doesn't apply when you have special needs kids, because it takes a TOWN, a CITY sometimes to keep you going. This is one of the biggest things I've learned in my first decade of motherhood.

So Maxine, as I wipe my tears away, I now get to ask you a question: What have you learned from being Rukai's mom that you didn't know before? How have you changed?


Staying strong in the US,

Kera


 
02 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/transatlantic-tuesday-letters-from.html
02 Feb 2016  |  http://thespecialreds.blogspot.co.uk/2016/02/transatlantic-tuesdays-letters-from.html
09 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/no-but-i-have-son.html
16 Feb 2016  |  http://thespecialreds.blogspot.co.uk/2016/02/transatlantic-tuesdays-4-take-high-road.html
23 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/pride-of-my-pride-transatlantictuesdays.html