Category Archives: comfort

A funny thing

A funny thing happened on the way to becoming Boo’s mom. I knew Boo was not going to be the same from Abby right from the start. In a way that does not diminish my love and adoration for her sister, but in a way that makes me a better mom to both. However her being Boo turned me into mom that celebrates moments that shouldn’t happen.
Those who know this story are probably bored by now, but with Boo I am reminded every moment is precious. Even when she shits down my leg I can think “EW” and “wow she said poop” at the exact same moment. The thought that follows close after is thank the Good Lord and all that is Holy I had pants on.

There have been times when I have been in shorts.

When Boo runs to her sister to get her off the bus I think this is the child who Early Intervention told me might never walk. I rejoice because I can think of not one other person who gets to see their children race towards one another every afternoon at 4pm. Trust me on this, I never raced to get my brother off the bus.

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When Boo says “mum” over and over again I never get tired of hearing her voice. I may wish for an indoor voice at 6am but I never shut the monitor off. I lay in bed and think wow she is up to her 20th word in a row. This is the child I worried would never speak and had her entire family learning sign language to help her communicate.

When I walk into the kitchen and find that Boo has relocated the furniture, managed to climb up the chair and is laughing like a loon I think to myself this is the girl they say has poor motor planning skills.

https://www.youtube.com/v/gFeOIM37YLU?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata

A funny thing happened on the way to becoming a mom…I became a mom of a child with special needs. Not only special but unique. One who five years later science still does not have a true diagnosis, other than unknown genetic syndrome. With a lot of other issues.

A funny thing happened on the way to becoming a mom with a child who has special needs I discovered what really matters in life.

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I’ve written before about Boo’s wandering. It started about as soon as she came off the walker. If she is outside you blink and she has eloped. It is beyond scary to know your child will wander off and not realize she is unsafe. I even had a bright idea and e-mailed NIKE about putting a chip in children’s shoes.

They refuse, on principal, to take unsolicited advice.

So I remained scared and worried. A lot of my fear is due to Boo’s lack of verbal skills. Then a police officer friend told us about Safety Net by LoJack.

Let me state right here, I am not being paid nor has LoJack asked me for any type of endorsement. They have no idea I am even writing this post.

Safety Net is a bracelet Boo wears. It has a rocking purple strap and about the size of a watch. Okay, it is a tad big on her….but she is a petite little thing! She wears the bracelet 24/7. If she wanders we alert 911 and provide her name. Our local department has her signal ID. If we travel we let LoJack know our destination and they will alert authorities that we will be in there area.

Unlike cell phone and GPS signals, LoJack uses a radio transmitter that can be used in any condition and locale. Since we like the mountains, we were relieved. Her bracelet is waterproof. She can use it in the bath, the pool and the ocean. And if we can convince her the sand.

It is expensive, $400 for the first year. We asked our families to contribute. We let them know what we were doing and asked that instead of getting her a birthday/Christmas present this year they take whatever money they normally would have spent and put it towards her safety.

All responded with generosity. They understand that Boo doesn’t “play” and doesn’t need material things…but she does need to remain safe. While her bracelet will not stop her from eloping, it will help us locate her with a great chance of finding her alive.

The system arrived within a day. We put it on Boo. She did NOT like us putting it on. But now that it is securely on, she has been showing off her “bracelet” to everyone she comes into contact with. She has slept, bathed, done crafts (with grandma I was banned by Abby) and gone to school with it.

She has been wearing the “bracelet” about a week. She has asked for it to be “off” once and a while but for the most part has realized it is staying put!

If you see Boo around town make sure you ask her to show her new rocking accessory.

A wrap up of the 4th

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The 4th of July dawned bright and early for us. Unbeknownst to David I signed us up for another almost-5k (not quite 3mi but I am fine with that). My goal is to continue having accountability. If we sign up for a race we will have to train and therefore run. Okay, he won’t have to train. That man just shows up and out paces me.

The reason he lives is he doesn’t lord it over me. Instead he has been really good at not letting me slow to a walk. The fact that he left the race course to hose down at a friends house and then sprinted to join me, then ran past me to talk to another friend has nothing to do with my envy.

The race was much easier without pushing Boo. She and Allie hung with Grammie while we ran. I think they had more fun. You see there is a peacock that has overtaken my MIL’s neighborhood. And “Petey” has taken roost in her front yard. In the mind of only a grandmother, she brought the girls outside to see it. I am not talking about from afar either…

I’m glad I was at the race. I’m beyond ecstatic that that Boo didn’t escape with the bird. And overjoyed that the bird didn’t eat them. Are peacocks carnivores?

After the hot and sweaty race we picked up the girls and my MIL (leaving “Petey” at home) to attend the town parade. Boo did really well, waving and saying hello to all the floats. As long as the antique cars didn’t honk their horns she was happy until….

The muster. Every year our town’s fire fighters put on a muster for the kids. They fill the school field with foam and allow them to slip and slide all over the place. The kids have an absolute blast. To show you “the foam” that the families look forward to…

The kids line up to be under the foam cup.

Allie showing that she is her daddy’s daughter in the thick of things!

It doesn’t matter how old you are from toddlers to teens to seniors…everyone enters the foam.

To every parent’s joy the firefighters also set up a wash off station.

But these photos are from last year. Because this year, Boo was terrified of the foam. She refused to leave my arms. She was wrapped tighter than a boa constrictor. Last year:

This year? In truth, I was saddened by this slight regression. That we have no photos, that she didn’t enjoy herself. That Allie can’t play with her little sister as the other kids were enjoying the day. Yet once the foam was gone and the hoses were put away, Boo was the happy little girl who loves to give hugs. Of course, the teens had to dry off first. But they were all so patient with her, chasing her around the now clean field.

When I think of all the strides Boo has made in the past year, the fact that I have no photos of this year’s foam is bearable. This Independence Day Boo is still growing. Yes, there are regressions. Especially being out of school.

Yet Boo still amazes us. She is now independent in taking her shoes off. She can unzip her lunchbox. She can drink from a cup and can find Austin & Allie on her IPAD. Boo is engaged in her life. Once the field was back in her comfort level, Boo was interactive with the children. She tried to climb on the fire truck. Boo was there in the moment.

We might struggle finding out why she is frustrated or what she is feeling or why she shuts down. But in two cases we know this for sure Boo has clearly told us what she doesn’t like. Snow and Foam.

I gave up Diet coke. Can I give up something else?

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About three months now (woo hoo three!) I gave up Diet Coke. It wasn’t pretty, my friends. But I did it. Recently I read a great post by Jen Kehl and am going to try to give up one more thing.

I do not think I yell, a lot. But I do know sarcasm is my friend. In my house I am famous for the eye roll (now mimicked by Allie) and when I do lose my temper, well it is as pretty as me off the Diet Coke.

Jen had this great post about parenting Brady-style. Now I know what you are thinking. Every once in a while I wish Marsha got a slap upside the head. I would suggest you go read her version here, but then you might not come back. She has some great posts. So here is my synopsis of her post in a nutshell:

Treat your kids with empathy, cool-headedness, use disappointment to guilt them and most importantly don’t yell. Now I am a total fan of living in Kristi’s Our Land of Empathy and Wonder. But I am not always empathetic when dealing with my own children, husband and definitely not with the puppy-turned-toddler-dog.

I may use guilt, but only that they have upset me. Not that I am disappointed in their behavior. I am definitely not cool-headed, I blame this on my goal of having the perfect family and why the hell don’t they conform to my wishes. And yelling? I don’t typically yell unless I am pushed just over the edge of reason. Then the neighbors can hear me.

Again, none of this is the picture of perfect motherhood I was promised in Lamaze class. Although there was screaming there.

Back to Jen, what struck me about her post was that she noticed her son was reacting based on her action. If I roll my eyes at her father, won’t Allie do the same behavior? Hell, yes.

Now this might not be the brightest idea during summer vacation. But I am going to try Jen’s Brady-parenting style. I will (try to) eliminate yelling, be more empathetic when Allie has an issue and speak quietly.

I figure it is better to master it before homework starts up again. I’ll let you know if life becomes calmer or if Allie decides to move in with her crafty aunt.

Well we are half-way there

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It’s official. We are half-way through the year. I cannot believe six months have gone by so quickly. I feel like just yesterday I was trapped in the house with two children and no wine.

Since it is July 1st I thought it would be a good idea to see how I’ve been keeping those darn resolutions. Short story, it starts great but doesn’t end well.

#1 begin running again. I am counting this as a win. Sure it took me until the 2nd week of June to start, but I’ve done a 5k and that freaking counts.

#2 Be a better friend to others than they are to me. Well, this one is a 60/40 split. I know I have taken way more than I have received. But I still have time to even the score.

#3 Give up Diet Coke. Again, it took 4 months for it to work. But I am officially 2 and a half months sober. Is it considered sober to be without diet coke? I know I am not as energetic. Still counting it as a win.

#4 Hugging the girls versus screaming at them. Based on this past weekend I am definitely failing in the hug department. Although I do let Allie use my hot tub for a bath so that should add to the bell curve. Plus it is summer so I won’t be screaming over homework.

#5. Read more, watch TV less. Damn Kindle fire. I am definitely watching less TV but now spending more time playing Words with Friends. Julie can tell you this is true. Although since she is often winning in our battles she might be kind. Epic fail.

#6. Less time venting, more time rejoicing. Yeah, kind of failing at that one too. Tia will keep me honest with that one.

#7. Keeping a cleaner house. Let’s see between blogging, working, Words with Friends and dog hair….yeah I cannot even justify this one. Sorry. I just really don’t want to dust.

#8. Finding balance. I think of it as becoming more of a contortionist than a gymnast. No balance required but a chiropractor would be handy.

Along with a maid.

How are you doing on your New Year’s Resolutions? I cannot be the only one with a barely passing grade!

I hit a turning point in my life when I…

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Growing up sometimes sucks. You have to grow up at different points in your life. First you have to learn to tie your shoes and you learn you can no longer depend on your mom doing everything for you. As you get older you learn there are times to lean, times to cry and times to put your big girl panties on.

I hit a turning point in my life when I accepted Boo’s undiagnosis (yes, I just made up my own word). When Boo was first in the NICU we didn’t really think past let our baby live. It was on her second admission at just a month old that I began asking, “what was wrong with my child”.

I wanted to know the why so I could know the outcome. I needed answers so I would know how to “fix” Boo. I wanted a manual on how to make her “better”. I felt it was “unfair” that she had some unknown genetic abnormality. That she didn’t fit the mold of any diagnosis, disease or syndrome.

And four years later, I still feel guilty for my poor choice of words.

From her pediatrician to her neurologist to her genetics physician I would demand answers and be told: you may never have the answers. Just keep doing what you are doing, eventually the science will be there to help Boo. Notice they said help, not fix.

I don’t know when exactly, I put my big girl panties on and stopped focusing on “why” or “fixing”. It took too much time and too many admissions. Boo was put through so much testing. Necessary, but painful testing. Heartbreaking testing that gave us more questions than answers.

At some point I hit a turning point and I just accepted Boo’s undiagnosis. I stopped using Google as a diagnostic tool. I began accepting this life as a mom of a special child. I still carry on with doctors, therapy and special programs. I advocate for awareness. I have Boo “on display” so others will be invested in her life. Because someday the science will be there to tell us why Boo works harder than most children.

Yes, the why is still important but not the most important detail of my day.

And when I hit that turning point? That was the day I began living life to it’s fullest with Boo.

This is how I hit a turning point in my life to Finish that Sentence Friday. What was your turning point?

The day we tortured Boo

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We are surrounded by the ocean/beach. How we had Boo, a child terrified of sand and all that is beach is still a mystery to us. But we are determined to make her a beach bum. Every summer we take her and in the beginning it is horrible. But last year for the first time Boo stood on the sand! It took crocks, socks and a pretzel stick. But she did it!

It took a lot of work for her, but we were all so proud. This year Boo walked on the grass so I (mistakenly) thought she was ready for the beach. Sure she freaked out at home when I took her socks off and made her walk barefoot. But it will be great, right? We put the girls in the jeep and drove onto the beach.

Big mistake. I swear it was the windiest day of the year. Boo did not handle it well. The poor thing whimpered for an hour. We tried everything. Including hiding her under a blanket.

Unfortunately we choose the windiest day of the year for her first attempt. It was so bad a friend left because her husband was being so cranky! At one point we looked down the beach and thought it was fog, but nope it was sand from the dunes.

You can see her trying to be brave. She was watching Allie have fun and but didn’t realize Allie was having fun. She thought the waves were hurting her sister.

But in the end, after about an hour, we finally gave in and packed up to go home. All we heard was “I no like” (hey a sentence). Once in the jeep life was calmer. For the first time she didn’t panic in the jeep at the beach.

So progress was made.

Then today we got the notice that the beach is closed through most of July due to some endangered birds. Apparently birds take precedence over summer fun.

I think if Boo realized the reprieve the birds gave her she would do a happy dance.

Comfort

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Today’s 5-minute Friday challenge is “Comfort”. Ready, set, go….

Comfort is having a day that I break, just a bit, and a friend from half-way across the world responds.

Comfort is being so frustrated by the doctors who recommend a therapy for Boo that is not available due to her lack of a diagnosis, and a friend from 8 hours away not only responds immediately to my URGH e-mail but then spends her day finding a way to make it happen.

Comfort is knowing that I am not alone in my struggles.

Comfort is being able to see the light of Boo’s smile as she charms a gangster, who might not have been a ganster.

Comfort is seeing my Boo race to the school bus to see Allie home.

Comfort is my husband knowing I had a bad day, so he disappeared for a while.

Comfort is being afraid and having someone hold my hand.

Comfort is knowing that when it becomes too much to handle, I am allowed to wallow in the land of self-pity if only for a moment.

Comfort is having more awesome days than bad.

Comfort is having my child home with me safe and happy, never knowing that mommy is overwhelmed.

Comfort is having friends get pissed off on my behalf at the unfairness of it all.

Comfort is having those same friends see the beauty that is Boo.

Comfort comes from awareness that all parents feel overwhelmed and want to hide, preferably with alcohol and chocolate.

END.

Today, like most Fridays I really think that Lisa-Jo picks a word that is totally appropriate for my state of mind. I don’t quite know how she does it, but I am happy that her prompts help me work through whatever crap I am going through at the precise moment of time.