Author Archives: firebailey

About firebailey

I possess many titles: wife, mom, advocate, runner, Bruins fan, lover chocolate and Parrot Head. I believe you can conquer any challenge in this world with family, good friends and wine. I write about most of that and more while keeping my sense of humor in this life I never expected.

It’s okay she is turning colors…

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Add another diagnosis to Boo’s repertoire. Okay, not another one but “color changes” has officially been updated to Raynaud’s Disease. With this polar vortex happening, her color changes have become more pronounced and she is for the first time telling me, “hands hurt”.

Which is good.

Because, first, she is aware of the pain. Second, she is telling us and third…okay no third upside. Before seeing the doctor we asked Boo’s teachers and therapists to have her skip recess. I know that seems unfair, because the girl likes her slide. However being the mean mom that I am I thought frostbite trumps love of slides.

We finally got an appointment to see her rheumatologist this week. We left at 6:30 in the morning for a 9:30 appointment and made it on time (yeah me!). This is typical for an early morning appointment. There have been days when we are an hour early and others when, well…when you wait three months for an appointment you better be an early bird and not the late worm.

Into the appointment walks Boo’s previous rheumatologist, the one that left us for Singapore was back. I did a happy dance. Seriously a happy dance. She told us that Boo Reynaurd’s. She further explained that typically they don’t diagnose it this young but obviously she has had it since birth. I honestly breathed a sigh of relief, we were not imagining it. Then the other shoe drops as she told me: However, due to her very low blood pressure we cannot treat her as we typically would medicate. The risk of bottoming out her pressure is not acceptable to the benefit of providing her relief.

Um, low blood pressure? We were just seen by cardiology. Remember, we don’t have to go back for five years! They never mentioned anything about a blood pressure issue. We immediately place a call into cardiology and in typical fashion hear back two days later.

It seems Boo has always had significantly low blood pressure. We were not told as it does not seem to impact her. Because she isn’t complaining that she is dizzy (would she know how to?) or passing out (obvious clue thank goodness) there is no reason at this time to worry about it.

But if she passes out be sure to call them ASAP. Dude, I’m not calling you I’m calling 911 if that starts to happen. Of course we are not going to medicate the Raynaurd’s if giving her medication will potentially bottom out her blood pressure and kill her. We will keep her warm and try to limit her exposure to the polar vortex.

I am struggling with the faith that some day, some freaking day, instead of being told: well, it isn’t normal but it doesn’t seem to bother her (or my new favorite: just keep doing what you are doing because it is working) a physician is going to say to me:

This is what Boo has and this is how we are going to treat it.

Don’t hide

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It used to make my heart stop. When I would see other children Boo’s age and think WHY CAN’T SHE JUST (insert whatever they did). I still get smacked in the head now and then to be honest.

But I don’t want to NOT hear about your child’s accomplishments. I want to celebrate them with you.

Just like I want you to celebrate with me. When Boo jumps for the first time. When she says a sentence. When she moves all the furniture into one room. Her milestones are different than your child. But that doesn’t minimize what your little one accomplished.

Please do not think you are hurting me by bragging. Heck that is the right of every parent. Even Boo’s. And hell I brag more than anyone. I am excited when I see your child build blocks, sit up unassisted or walk for the first time. The fact that your child did it on schedule and mine took her time?

Yes, it hurts. But in a good way. Because every time you post a milestone I am reminded of Boo’s first whatever. Sadly, Abby’s not so much. Only because Abby hit her stride and never stopped. We didn’t have to work for them. It doesn’t make her milestones less or Boo’s more.

I like your child’s milestones. I’m glad you don’t have to go through what we do to have our child walk, talk, jump or eat. So please don’t stop sharing. And definitely don’t stop celebrating. Just rejoice in how awesome your child is.

I know I do.

I’m guilty

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I admit it, I’m guilty of sucking at Valentine’s Day. I am guilty of forgetting to get David a card until minutes before the deadline. I refuse to get the children gifts. David, I went all 1980’s and made a mix-tape, well CD, for him of his favorite 1980’s music. Jen would be proud. But like all of my mix-tapes it was probably the wrong theme of the week!

Before we were married I went all out for V-day. We would go away for the weekend especially if it fell, like this year, on a 3-day weekend. A huge gift, a sappy card and something from Victoria’s. Those days are long gone my friends.

Now it is just another day for me. Which makes me sad in some ways. But more angry in others. Why do the marketing geniuses have to make me guilty for Valentine’s Day? Isn’t it enough that I tell my husband and children that I tell them I love them every day. Multiple times during the day:

When they wake up
When I or they leave
When I talk to them on the phone
When I or they come home
When I am about to scream loud enough to cause a sonic boom over homework but still say I love you but DO YOUR FREAKING HOMEWORK

I counted and yesterday I told every member of the family I loved them a total of 173 times. That number may or may not be made up. But wait there is more! I also show them I love them every day:

When I feed them
When I shower them (the girls not David)
When I provide clean clothes
When I do not murder them for not starting the laundry (the David not the girls)
When I give them the last brownie–homemade mind you
When I do not throw away all their toys when I step on a Barbie shoe in my bare feet
When I put down the wonderful book I am reading (Fault in Our Stars) to play a game with them
When I do not let them win at Connect Four

Combined I spend every minute of the day (awake, asleep and somewhat comatose) loving my family. Why on earth do I have to spend $6 proving it with a card?

So I plead guilty. I am guilty of not falling into the trap of ~~Merchandiser’s~~ Valentine’s Day.

I’m old

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A warning to anyone under 30-ish and/or childless, this post probably isn’t for you. It contains a lot of truth but will probably make you either jealous or want to punch me in the throat for crushing your dreams. But here are some truisms that you just don’t get until you are on the dark side of 30 with children. Or (insert gasp) older with children.

1. Staying up past 10pm is an accomplishment not a right.
2. When your child comes home and tells you some one was mean to them you remember when you were not so nice and wish you could do a Back to the Future and kick your own ass. See, if you are 30-ish you have no idea what that means.
3. You will give the last Oreo to your child, but not your spouse.
4. At some point you will stop thinking you can lose those last five pounds and instead look at that C-section scar as a badge of courage.
5. Although you want to smack the childless co-worker who says she is “so tired” and “didn’t sleep” all night you won’t. But only because you are too tired to lift your arms.
6. Sometimes you wish life was a Jimmy Buffett song and could just change your Latitude.
7. While you will always love your children you do not always like them.
8. You don’t care if you just insulted childless couples by saying you sometimes don’t really like your children.
9. Although you love your parents, you will wish they remembered what it was like to have children NOT grandchildren when they go shopping.
10. You wouldn’t change one minute, one moment of heartache, one tear in exchange for the hug that just won’t stop. Even when your child is on the dark side of 30.

Got my motivation….

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The DJ Jen needs some songs to get motivated. It is hard enough to motivate myself yet I am there for a friend in need. But motivated for what? That is where I struggled. Then I listened to some really bad radio.

So Jen, here are the five songs guaranteed to motivate me to change the station!

What does the Fox say? Even my 10 year old hates this song. Luckily for me she knows the first few chords (are they chords?) and will alert me to change the station now? One day in the car I didn’t change fast enough and when it said What does the Fox say? Abby replied: Look out….it’s hunting season.

https://youtube.googleapis.com/v/jofNR_WkoCE&source=uds

I have no idea why this next song bugs me so bad. But in the 80’s until today at noon when it came on again it just makes my stomach clench.

https://youtube.googleapis.com/v/aI9lo5BRJmg&source=uds

This should be a rule. If you are going to remake a song, make sure you can kill it. In the good way. Like Jimmy Buffet did with Scarlet Begonias or Southern Cross. Do not try to recreate perfection, fail and then put it on my radio.

https://youtube.googleapis.com/v/NxoRHqc1iDk&source=uds

I love Christmas music. I truly love it and would listen to it all year round if that wouldn’t make me a candidate for intervention. But some songs just don’t make sense. First I don’t even know what figgy pudding is. Second if you are going to demand it before you leave trust me something will be stuck up your nose. It might not be figgy pudding. Seriously think of the lyrics…it is the Christmas Stalking Song as Dr. Doofenshmirtz rightly proclaims.

https://youtube.googleapis.com/v/MMgtRh2t0RA&source=uds

And last but not least the song that has Abby & I screaming Change the Station NOW!!! If anyone tries to blur the lines with my daughter? Well, boyfriend hunting season should be year round!

https://youtube.googleapis.com/v/yyDUC1LUXSU&source=uds

This has been a motivation mix-tape for the wonderful Jen Kehl. Be sure to visit the other DJ’s and get motivated!

Got humor?

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How to survive life as a parent with special needs. Okay that is a lofty goal! It is hard enough navigating parenting with a child who is typical. Add in a few diagnoses and life can get overwhelming. But here is my go-to list for surviving the life I never expected.

1. Keep your sense of humor. If you have lost your sense of humor because it was drowned by vomit, poop, tantrums or tears Google comedian Steven Wright. How can you not chuckle at thinking: “Is it weird in here or is it just me?” (Steven Wright)

2. Make a daily goal. For me it used to be brushing my teeth at least once a day. Now it is making sure I get to work without evidence of Boo’s breakfast on my shoulder.

3. If you feel all alone in this life as a parent with special needs, you probably are. But it is your job to find support. To scream at the top of your lungs I NEED HELP. If no one hears you, let me know and I will add my voice to yours.

4. Make your child’s teacher/therapist/doctor your friend. Find out about their lives. Interact with those who your child spends most of their time. It will enrich your life in ways you cannot imagine and make issue #3 far less likely to happen.

5. Have a glass of wine. Not the bottle a glass.

6. Allow yourself to cry, laugh, grieve and rejoice all in the same minute. It doesn’t mean you’ve lost your mind but that you may have found it.

7. Find “ME” time. I know, I hardly ever do. But when I can run for just 30 minutes I come back a much nicer wife, mother and person. It doesn’t have to be every day (oh how I wish I could find me time every day) but make time for you.

8. You hopefully have a partner. The child’s mother or father. Guess what, they are your partner in this and they too are parents with special needs. So lean on them. Consult them. Do not do this all on your own and remember that partner is there. Make them take your child to therapy, a doctor’s appointment or do drop-off at school. For too long of a time I tried to be super mom, handling everything for Boo. Once I let David in our lives were much easier. If you don’t have a partner look at rule #3.

9. It’s okay to wear your sweat pants with a hole in the crotch for a few days in a row. Just try to remember to wear underwear so you are not arrested for pulling a Miley Cyrus at school drop-off.

10. Mix-up your friends. Try to anyway. Keep a healthy mix of parents with special needs and those with that normal kid who just talked back to them. It will make you appreciate your own little wonder. It will also help to make sure you feel alone.

11. It’s okay to get pissed off. Seriously pissy at this life you didn’t expect or prepare. And once you think you’ve got it handled someone will take the rug out from under you. Consider yourself warned. It is okay to question yourself, your God and your child’s doctor. It is not okay for any freaking one to tell you that you are not allowed to feel anger, grief or whatever emotion you may be going through.

12. Your house doesn’t have to be Martha Stewart Spotless. I will say the state of our life is directly reflected in the ~~mess~~ state of the kitchen. But I have stopped saying to people, sorry for the mess. Instead I say, This is how it always looks and today is actually better.

13. Remember you are more than a parent. You are more than a parent of a child with special needs. You are you and may I say you are doing a fine job of navigating this life the best you can.

Lastly, and this is important: Five years into this life as a parent with special needs I will say this is our life. What we make of it. A glass of wine helps. But what really makes me survive?

The friends who have stood by to hold, comfort and more importantly laugh with me. So find some of those and keep them close. They will help you keep your sense of humor and your sense of self.

My best dream ever….

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When I was little I had a very active imagination. My parents would put me to bed and I would spend hours imagining a life other than the one I was currently living. Sometimes I was a princess, sometimes I was a warrior and sometimes I was just a girl living a different life.

Each night it was the same. I would wait until Mom put out the light and close the door and I would line up my stuffed animals all around me. I would begin to imagine this fabulous life where everyone was equal and no one was sad.

As a child I did not know that prejudice existed. That children were born with different needs and talents. That adults would look at a child and judge. The parent and the child would be judged and found lacking. That you would be judged for who you loved, your gender or your skin color.

As an adult I wore blinders. I saw those who were disabled but did not see past their disability. I saw children who appeared disobedient and thought not like mine. I admit to not seeing a person’s color but not standing up to those who did. I lived my life on my terms, never seeing how we are all intertwined.

Then I had Bridget and my ideals evolved. A person who was a wallflower became an advocate. It took Kristi’s Our Land to put my dreams in perspective. She dreamed of a world of empathy and wonder. One where we looked at others with the imagination of a child. Not with the jaundiced vision of adulthood. A land where it would matter that our children had a disability only to make people stop and see the wonder that is this life we live.

My best dream ever? It is a dream where Abby & Boo’s story show the world what wonder and empathy look like. A dream where we judge others like we did back in the sandbox. Not by color, race, creed or gender. But with the opening line:

Do you want to be my friend?

My best dream ever is the one where our children never lose their empathy. That they continue to look at the rain with wonder. That our children make friends first and judgments last. A world where we shared the joys, the heartache and the triumphs of living a life full of blessings.

The cool thing is? My dream is coming true. I was astounded this week when not once or twice I was stopped on the street and told that this blog affected them. In a positive way. When someone sees Boo and looks with kindness and not judgement. That some parent knows they are not alone. A world when we are allowed to break and heal with someone there to help and not to judge. A life where others view Boo through Abby’s eyes.

My best dream ever is the one that never ends. A life where Boo shows others how to live in a world of empathy and wonder. Thanks for being with me on my journey to make my dream come true.

Oh and if you haven’t checked out Kristi’s Our Land yet I recommend the trip. It’s not about living with a disabled child. It is about living your life to be better. There are posts about body image, friendships and not judging a person (or yourself) before you meet them. Kristi is the blogging equivalent of Oprah’s AHA moment.

Friendships

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The other day I was texting with Kristi over at Finding Ninee. Kristi started blogging right after I did. We found one another through a link-up and supported one another before she got all famous and stuff. She was my first blogging friend turned real-life friend. Kristi is the one I can text at 11pm with something that is so wrong it is funny.

When we first shared our real-life personal information I warned her if instead of being her awesome self, she was in fact a 40+ year-old man, living in his mother’s basement, wearing a wife-beater t-shirt that has a BBQ stain on it I would be extremely pissed off.

The added worry in wondering if Kristi really was a Kristi and not a Kurt was David being able to say, “I TOLD YOU SO” when it comes to the internet, Facebook and the devil.

Back to my rambling point, on top of worrying if Kristi is a Kurt, my friend Kate from Another Clean Slate had me worrying about a Zombie attack and if we would survive. I told her I was sure we would. We just have to be faster than the person behind us.

Now I have spoken on the phone with “Kristi” so I am pretty sure she isn’t a Kurt. Though she has a smoking hot voice on the phone. I’ve met Kate in real life, I made her run and she still talks to me. So I know two out of the blogging friends I’ve met on line are real.

Bron, Bron has to be real or else I am never going to be able to go to Australia. And that is just not fair.

But what about the others?

Dana from Kiss My List for example. She seems wicked nice. Someone I’d like to invite over for a cocktail and chocolate. But what if she is not? What if she is a closet serial killer and she really makes lists of her killings not her DIY projects?

Does Christine from A Fly on Our (Chicken Coop) Wall really have all those kids? Does she really live on a farm and have a great winter coat? Or….maybe that farm is just a home for disturbed children. It would explain all the trips to the ER.

Is Jen really a lover of music or is her Mix-tape challenge just a ruse? Maybe she is a spy from the NSA trying to figure out what the lyrics really mean.

I am pretty sure Ellen from Love that Max is just a front for the Disney Corp. How else does she get all those trips? And she doesn’t even know I exist so moving on….

Is K really a college kid? Maybe Transcending CP really isn’t what I think it is. I mean CP might not stand for cerebral palsy but a Coy Playboy with transgender issues.

Either Janine or Lizzi could be a Zombie. Have you noticed they are the first to comment or tweet? No matter what time of day or night! Lizzi has been running so Kate & I are screwed in the event of a Zombie apocalypse.

Sylvia from Faithful Mom of 9? Maybe she is really isn’t homeschooling but running some type of cult. Cause who could home-school NINE children yet not drink. Something fishy there.

I’m pretty sure Emily from Oh Boy Mom! is really a mom with more than I have on my plate. But who knows, she could be running drugs with all those trips to the Bronx. I visited the Bronx once. Once. By mistake. We were towing a camper. Never tow a camper with Masshole plates on it through the Bronx.

Michelle? What if Big Blueberry Eyes really aren’t blue but Photoshopped! And, gasp, what if she isn’t a Red Sox fan after all? I was just thinking how cool it would be if her husband got stationed up here.

What if Rachel really isn’t a geriatric mom? The Tao of Poop cannot possibly be that pretty and serene. Geriatric people are cranky. She might be really a teen mom with great hair. Cause you know teens they are always so easy going.

Ruchira? Who can be that insightful. A person who can take away all the trappings like Abracabadra and make the world seem right? She cannot be that all knowing.

When I think about it you are all suspects: either serial killers or zombies. And I met most of you via Love that Max. So really, it’s her fault if David is able to say I told you so.

Man I hope all my bloggy-friends reading this have senses of humor and really are not serial killers. Maybe I should look for a protection program. I’m sure Don can help me out with that right? Cause cops cannot lie, right?

If you don’t hear from me for a while check out my friends blogs, maybe they’ll confess!

Thanks but I’d rather have a glass of wine….

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It was difficult to find the thanks this week. But I’m going to try because Lizzi is ~~hounding~~ encouraging me. But this week was full of floods.

The first flood was quite literal.

1. I am thankful that if a frozen pipe is going to burst in the walk-in closet on the second floor that my husband was there to go all handy and run around the basement for the shut-off valve.

2. I am thankful that the plumber who came over on a Saturday morning did not make us take out a 2nd mortgage to pay his bill.

3. I am thankful that Abby was there to feed Boo breakfast, snack and lunch while her dad and I contended with the flood.

4. I am trying to be thankful that although Abby wouldn’t change Boo into clothes or hey a clean pull-up. I am thankful nothing escaped the close to exploding diaper.

5. I am thankful that although I hadn’t showered before the flood there was still hot water left to take one after it was under control.

The second flood hurt more as this time I had a flood of emotions.

6. I am thankful for restraint when I didn’t smack the psychologist who said that saying Boo was autistic wouldn’t change how I would feel about my child. Although I did scream really loudly in my head NO SHIT HARVARD.

7. I am thankful for Boo’s PT not only babysat Boo & Abby so I could decompress but then stayed up until 1 am with me as we talked about Boo being labeled autistic meant to me, to Boo and more importantly to those responsible for her care.

8. I am thankful for Jenn who always knows what to say and for Tia who thinks she doesn’t always know what to say but is the first one there to lift me up. For Becky taking Abby on the best play date of her life so Boo could attend a birthday party.

9. I am thankful that when Boo attended a birthday party (her FOURTH!!!) and when the party host asked if Boo was “a little autistic” I could reply, yes but that is like saying someone is a little pregnant. And I said it with a smile not with gritted teeth.

10. I am thankful that while I spent another birthday at CHB this time it was with Boo’s cardiologist who told me that while Boo still had a hole in her heart it would not require surgery. Just observation. She doesn’t have to go back to Cardiology for FIVE YEARS. Can I get a WOO HOO and a FREAKING THANK YOU!!!! for the best birthday present ever?

A funny thing

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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.

https://www.youtube.com/v/WHgntYWuEW0?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata

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.

https://www.youtube.com/v/D0n9DKpf8b8?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata