Happy Mother’s Day (from a special needs perspective) - By Misty Boyd

The following is reprinted with permission from the blog of Misty Boyd, "Broken Body/Whole Spirit."

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If I could be a little girl again and know the things I know now, I would thank my mom a lot more for the sacrifices she made for me when I was growing up. So, for Mother’s Day, I’ve decided to use what I know now to thank her and all the other spina bifida moms I know for things I wasn’t aware of then.

Mom,

Thank you for giving me life when “they” said I’d be better off dead. Thank you for fighting on my behalf when I was too little and weak. Thank you for loving me even though you were scared. Thank you for becoming a nurse in our home long before you were ever a nurse at a hospital. I know that must have been intimidating. Thank you for learning what all those tubes were for, and where they went, and how they helped me. Thank you for countless doctor visits and E.R. visits, no matter what time I needed to go. Thank you for walking up and down the halls of the hospital with me while people gawked. Thank you for your paranoia about every little thing that didn’t seem right. I know sometimes you thought you looked nuts, but I’m sure it kept me alive more than once. Thank you for yelling at doctors when they said, “She’s fine,” when you knew me well enough to know I wasn’t. Thank you for the ugly stares you gave back to people when I was doing my best to learn to walk. Thank you for being patient when other kids my age were running circles around me. I needed more time. Thank you for remembering countless medications, and cath schedules, and putting my AFO’s on for me, and dressing me when it took me a little longer to learn. Thank you for yelling at me when I wouldn’t take care of myself as a teenager (not that it worked…I’m stubborn). Thank you for making me stubborn. I needed that attitude. I don’t know how I would have made it without my pain in the rear attitude. Thank you for pushing me to do everything you knew I could do, and I knew I couldn’t. Turns out, you’re pretty smart. Thank you for letting me do things you were scared of. I know I terrified you sometimes. I had to know if I could ride my bike down that hill at supersonic speed. I could. Fun! Thank you for making me know that I was worthy of love. I never let a boy tell me anything different. There were a lot of worms, but I dropped them all for something I knew I deserved. Thank you for cheering at my graduation. If my doctors had it their way, that day wouldn’t have come, but you believed. Thank you for spending countless hours planning that crazy wedding, yet another thing that wasn’t supposed to happen. And thank you for forks! LOL! Only my mother will get that one! Basically, thank you for stepping into an unfamiliar, scary world, that you didn’t sign up for. I appreciate it, and I think you did a great job! I turned out okay!

Love,

Your SB kid

SB moms…please know that your children feel this way, or at least they will when they look back on their lives and see all you’ve done for them. Take this letter as your own. I wrote it for all of you, from your babies who can’t tell you any of this yet. Happy Mother’s Day!

Egg Hunt

On Saturday, Esther-Faith went to a special egg hunt put on by a local community service organization. There were beeping eggs for the eyesight impaired. There were eggs on benches for the children who couldn't reach the floor. And there were eggs EVERYWHERE for the kids to pick up. It was a decidedly slower egg hunt than others we've been to over the years, but Isaac connected with one of Esther-Faith's favorite preschool friends and helped him pick up eggs. And Isaiah did his best to convince Esther-Faith to pick up eggs.

Although, she was only interested in the pink ones.

Cake-tastrophe

It had all the makings of a busy weekend. Lots of appointments, plans, and things to do. Including two birthday parties for the new five year old in the house.

We left the boys' therapy appointments and made our first stop at the party store. Parking in one of the 15-minute spots, we swiftly made our way through the store in search of a game that roughly 12 children of varying ages and ability levels could play. We had no luck. So we headed to the store to pick up the first of two birthday cakes. 

Before you judge, let me explain. Yes, I almost ALWAYS make the birthday cakes. And they almost always taste better than anything store-bought, but I BAKE. I haven't done an elaborate decorating job in years. My sister--who is fantastically creative and gifted with frosting--decorates. We're a team--a GOOD team. I bake. She decorates. BUT, Kristen was out of town this weekend. So, knowing I needed a couple of elaborately decorated tinkerbell cakes, and knowing my decorator was out of town, I turned to the professionals. It was actually Tim's decision. And he even called the bakery where my sister used to be a decorator. 

That said, I saw the cake. It looked nice. I paid for the cake. The price was kind of low. I called Tim on the way to pick up the second cake. He sent me back to the first place. They made the wrong size. So they make a second cake--on the house. 

At the second store (an ice cream store), we had place a special order. Because Esther-Faith cannot have chocolate, Tim ordered a cake with all vanilla in one half and chocolate and vanilla in the other half. And he ordered it to also be elaborately decorated with Tinkerbell. I walked in. She showed me the cake. Esther-Faith's name was spelled wrong. I asked for it to be fixed. I was treated poorly by the barely-older-than-my-son employees. 

Me: "Is there any way you can fix her name."

Employee: "Ummmm. Well, I don't know."

Me: "It's kind of important that her name be spelled right on her birthday cake."

Employee: "Well, it's close."

Me: "Right. But I did not order and pay for a cake that had my daughter's name almost right."

Employee: "Well, ummmm, I'll see what I can do."

Me: "Her name is spelled, "E-S-T-H-E-R-hyphen-F-A-I-T-H. Do you need me to write it down for you."

Employee: "No. It's right here on the slip."

(And she showed me the slip. And there was her name. Spelled the right way.)

Me: (a little dumbfounded) "Okay. Thanks for fixing it."

Isaiah called the series of events a "cake-tastrophe."

After that cake was fixed, we headed home. Once home, we ate lunch, and planned out the rest of the day. Where we would go. What we still needed to buy. What chores needed to be completed before company showed up. Etc... 

Then I started prepping the food. Lasagna for 30. Salad. Ice cream. We did chores and rearranged rooms. Eventually, we headed out. We had four stops to make. We had a plan, and even with five of us, it only took about an hour to get everything done, and then we headed back home. 

Sunday dawned. I made cinnamon rolls for breakfast. We planned to go to church, but time got away from us and we settled into chores and finishing preparations for the parties. There were two. One for Esther-Faith's friends from preschool and daycare at 2 p.m. And one for our friends and other grown-ups who care deeply about our daughter at 5 p.m. 

Around 1 p.m., Esther-Faith got sick. Not just sick, but sick like she did a month ago. Sick like she did a year ago. And we started calling everyone who had sent an RSVP to cancel the party. We were all upset. Esther-Faith was crushed. She was exhausted from being sick, but still wanted a party. By 2:30 or so, she seemed bounce back to her usual self. Bounding around the house. Eager to get her party on. Tim and I sent some tentative messages. To my mom. And Kate. And some close friends. That if they were feeling brave, we would still love to see them.

You know, there are times that I am just astounded by the support we have. People who show up and love us no matter how hard life gets. No matter how messy or challenging or tiring or scary or exhausting. They're here. Or wherever we are. To make us laugh. To help ease our nerves. 

Today, Esther-Faith played with all of the "prizes" that we bought to give her friends who won the party games. We did cut into the ice cream cake. But there are still two white cakes with white frosting and elaborate Tinkerbell decorations. Uncut. Untouched. In the garage (which is below freezing). We've got loads of salad left. And thank goodness the 14-year-old eats enough for an army, because we'll probably only have leftover lasagna for a couple of days instead of weeks. 

We're still on high alert. She threw a temper fit to end all temper fits today. Her appetite is still a little off. And she's not entirely acting like herself. But we had an MRI and a shunt series a month ago. I'm almost sure her shunt is ok. The rest of it? I'm not so sure. We've consulted Dr. Google about complications of  Chiari Malformation and allergies and other worst-case scenarios. We've started a bladder wash. And we take her temperature just about every hour. We ask questions about her tummy and her head. She gets irritated by all of the concern. 

But, we just don't know. She's not typically a sick child. For all of the complications of Spina Bifida, she has been a remarkably healthy child over the years. We'll watch. And wait. And trust our instincts. If action needs to be taken. We'll do whatever it takes.

So, Esther-Faith turning five years old wasn't the spectacular celebration we had envisioned. Cake issues. Cancelled parties. Illness. But, Esther-Faith still turned five. She is still our light and joy. She is still Isaac's best friend. And the center of Isaiah's whole world--his hope. Just as I didn't plan on her, no matter how bad my plans go for her, she is still perfect.

All this also comes from the Lord Almighty,

whose plan is wonderful,

whose wisdom is magnificent.

Isaiah 28:29

Waiting excitedly for Kate to come in the house.

Opening presents and playing with Mimi.

Karaoke with Jim.

Tinkerbell ice cream cake.
With her name spelled the right way.

Redefining

Shopping at Target yesterday, an employee approached us as we approached the check out. At first, I wasn't sure what was going to happen. We often get stares. Sometimes comments. Sometimes, people walk big circles around us. I'll admit, we aren't your conventional family. But she reached her hand out and touched Esther-Faith's curls. Then she asked me, "What does she have?" Without hesitation I responded, "She was born with Spina Bifida."

She touched my arm and with excitement she said, "My daughter was, too!"

I could have hugged this woman.

We talked for about 20 minutes. Exchanged email addresses. I gave her this web site. Her daughter is 21. She has endured some 70 surgeries--more than half of them on her shunt. And she is an undergraduate at a university away from home. I was encouraged by her story, and relieved by the small world we live in. It was a great connection to make, and I hope to see Connie again and to meet her daughter.

On another note, we have finally celebrated Christmas with both sets of parents (everyone got one of these shirts from us for Christmas), and I can share these photos!

by Karin.
(from the HennHouse)

Mothers' WEEK

(NOTE: Clicking on a link in this post will open a new window and will not take you away from the spinabifidakids.blogspot.com page.)


Last week Kari (raisingtoby.blogspot.com) emailed me with the idea that in preparation for Mothers' Day, we write about ourselves. Her idea included a photo and a description of why we blog, what our hobbies are, what kinds of food we like, what we can't live without, best friends, etc...

I love this idea!

So...

I'm Karin.

I started blogging because my brother started a blog. And as has been true for most of our lives, whatever he does, I do. Better. A couple of days later, my sister started a blog. Then all three of my sisters-in-law. And it became a great way for us to stay in touch as the miles between us grew.

But over the years, my blogging has taken on more direction as I've started posting regularly at 5 Minutes for Special Needs and occasionally at Adopting the Older Child. I've written guest posts for other blogs, and currently maintain three personal blogs (HennHouse, HennHouse-Fitness, HennHouse-food), and my nine-year-old even has a blog where he posts some of his artwork and photography.

I guess my blogging has evolved into community. While I started blogging to keep up with my older brother (and he is only 11 months older than me, so you know how that goes), I KEPT blogging because of the connection I felt with the friends I was making online. I have met the most interesting, most unorthodox, most eclectic, and most genuine people while blogging.

And now I can't stop.

Some other random things about me:

I'm a working mom, which has some unique challenges when you've got three special needs children. I work at a major research university in marketing communications. Primarily, I'm responsible for email marketing. But I do try to compartmentalize. Except when my son is suspended, again, and I've either got to work from home or take him with me. Which can be, um, interesting.

I've got three kids. I consider raising them my job. Sure, I work outside of the house, but that just pays the mortgage. My REAL work takes place inside the walls of our home. And on the front lines where I wear the hat of advocate, teacher, disciplinarian, comforter, voice of reason, voice of "that's just stupid" (I have a teenager), PR representative, photographer, movie producer, cheerleader, manicurist, activities coordinator, coach, therapist, nurse, maid, short-order cook, etc... I consider it the highest honor to be mom to my three.

I love to cook and bake. LOVE it. For my family. Friends. Strangers. Bake sales. If there is a reason to be found to smoke a brisket and have a crowd over, I will find it. I wouldn't say that we like to entertain, but we do like to fellowship. And the work doesn't all fall on me. My Tim is pretty amazing in the kitchen, too. And, he does all of the dishes.

I also love shoes. Clean floors. Cookbooks. Pajamas. Christmas. And going barefoot. I save WAY too many things. I like clean, clutter-free living, but I also have a hard time letting some things go. I like to be organized, but that doesn't always work out for me either.

My husband is my best friend. Really, I think I'm the only one who gets his humor, and that's ok with me. I left my small hometown at age 18 for the "big" city thinking I was leaving the farm girl behind, but I married a tree hugger, so, we snack-scape and my back yard is one big year-round vegetable garden. And I find that I don't mind one bit.

I cannot be defined in one word. But, if I had to choose one thing that I love the most, it is being a mom. I have learned so much about love and life from my kids that I don't ever lament for the time in my life that I didn't have kids.

Being their mom is what I was meant to be.

Holidays

Over the last couple of years, we've found that while we still "do" the holidays, they look a little different for us. Where we hide the eggs is much more accessible. Our schedule is much more rigid as we keep to cathing and bowel management programs. Our meals are different as we adjust to allergies.

But, as much as things are different, we find that lots of things remain the same. New Easter dresses complete with matching hats and purses. Baskets filled with goodies. Time spent with family. And playing to the point of exhaustion.

What do you do different? The same? How have you adjusted your holidays to make them most accessible and loads of fun?