Monthly Archives: May 2014

The lighter side of Hell

My friend Dana had a great post the other day. I told her I was stealing her idea. She gave me permission, so I am saying that I am not stealing her idea but rather participating in a finish that sentence kind of thing (another steal). There are supposedly seven layers of hell, right? Or is that just deadly sins.

Either way, my personal version of hell would include….
1. Going a day without an M&M.

2. Having to create a crap, I mean CRAFT, project with Abby.

3. Doing Every Day Math homework. Oh wait….

4. Sitting down to a lobstah dinner and not having an appetite.

5. Not having my village people. If only my village wore costumes, though. That would be kind of cool.

6. Living life without a sense of humor

7. The Bruins being tied going into game 7 with the Habs (Canadians) and ~~waiting~~ praying for the win. Oh crap that’s tonight!

The Catholic in me thinks asking God to intervene in a sporting event is kind of sacrilege. However, the Big Bad Bruins fan in me is willing to take the risk.

Tell me, what is your lighter side of hell?

Thanks Mom

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Dear Mom,

It’s Mother’s Day. The day that only exists because you are my mom. Not to be too self-important but if it wasn’t for the children this would be just another Sunday. You would probably be doing yard work or groceries.
Who are we kidding? If you weren’t a mom you would probably be on the beach somewhere enjoying the spring weather and not worrying about the million things that come along with being a mom.

Because of me you will get to celebrate this Sunday. Why do you get a special day dedicated to just you? In short it’s due to your survival instincts. The added fact that you arranged your vacation to spend this day with us just proves how much of a mom you are.

So, on this 10 things of thankful, thanks for being my mom.

1. For letting me survive my toddler years. When I made myself throw up when you brought Scott home. For throwing Ryan in the air when you brought her home.

2. For making a home when there wasn’t one. For being homeless but never stop providing us a home.

3. For the dance parties with your friends. When you allowed us to stay up late and dance to Neil Diamond, Barry Manilow and back to the oldies Friday night.

4. For letting me fire the babysitter at age 12 and take care of the younger ones.

5. For letting me survive the teenage years. When I was depressed before depression existed. For letting me spend much needed time with Gigi, Jim and Gram to heal. For loving me when I didn’t love you.

6. For putting me in front of the Bruins when I wouldn’t sleep as an infant and raising a girl who knows what an off-side, an icing and an intolerance for the Habs.

7. For being my first call when I had Abby.

8. For understanding when I said, please don’t come when I had Boo.

9. For not understanding what a Boo tantrum is, but for being there when it happens.

10. For being my mom. When it is good, when it is bad and when it is heartbreaking.

You, my mother, are my rock. My hero. My go-to person when life, marriage and motherhood gets too much. You get that Tia is my first call, but that you are my soft landing. I wouldn’t be half the mom I am without your support, guidance or experience.

You might not always understand.

But you are always there.

And for that alone I am forever thankful.

Mom in the elevator

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Dear Mom in the Elevator,

I’m sorry. I apologize for leaving so quickly. I saw you and your husband in the elevator at Children’s. You were wearing the badge of the NICU. You had hit the elevator for the respite floor. You looked so spent. So wiped. So scared.

As I left with Boo for her cardiology appointment I turned and said, It gets easier.

Then I left.

I’m sorry. I should have said something sooner. I should explained that it gets easier but not better. That today you are worried about your newborn and tomorrow you will be worried about you toddler.

But I swear it gets easier. You will be hit in the gut many times over the next few ~~years~~ decades. Right now, believe it or not, is the easiest time of your life with a sick newborn. You have the support of awesome nurses and physicians who allow you to nap, to eat, to cry and to ask questions.

Soon, hopefully, you will be discharged. You will be scared. No, you will be terrified. As much as you looked forward to the moment of taking your baby home you are scared to your core. Because at this moment you realize you are parenting without a net. You are taking a child home that just 8 hours earlier was on a cardiac (or other) monitor. The doctors and nurses assure you that they are healthy enough to go home. As much as you (and everyone you know) prayed for this moment in time you are terrified that you are not ready.

But you are. There are just somethings you have to do to make sure you and your child stay whole.

You need to create a village. That friend that says call me, what can I do, I’m here for you. Hold them to it. Call them and say HELP ME I’M SCARED. More scared than you ever imagined. Unless you have been in the NICU you cannot describe the level of terror. They won’t get it, but they will hurt for you. They will be there for you. But only if you let them.

But I get it. I understand the moment you thought your child was going to die. The moment when you realized they would live. The moment you were told they were coming home.

It scared the crap out of me. I mean, like almost threw up I was so scared.

There will be moments in the future when you will worry, when you will cry, when you will say this is not what I signed up for…but they pale in comparison to the moment.

The moment when you go from being a parent in the NICU to a parent without a net.

Here is what you need:

Your partner. You are in this together. Remember that and hold them to it.
Your best friend. They promised to be there forever. Hold them to it.
Your mom. She loves you, no matter what. She might not understand what you are going through, but let her be there.
Your pediatrician. If you do not have one that is willing to be answer your call at 2AM find a new one. Their job is to be there for you and your child. Hold them to it.
Your friends. Here’s the thing. They want to be there for you. But they don’t know how. They are afraid to call and bother you, they don’t want to burden you, they are ashamed that they complain about their child talking nonstop when yours is nonverbal, they don’t know how they can help. So tell them. Tell them what you need. Be it a pizza delivered, a bathroom cleaned, a shoulder to break on or a text fest where you just spew. But let them be there. Don’t hide what you are going through because then they cannot help. You need them, it’s your job to let them know it.

Lastly, and this is the most important, listen to your inner warrior mom. You know your child better than any doctor, nurse or provider. If they smell funny to you then something is going on. I once had a nurse tell me that mother’s instinct trumps doctors order any day of the week. Remember that.

When you gave birth to a child with a medical issue and/or special need, you didn’t just become a mom (sorry to tell you). You became a warrior mom. One who advocates, medicates, does therapy, uses Google to the ends of the research and who loves their child beyond all measure.

It does get easier. Not better, but easier. The caveat to being easier is to have your village. Go find them. Embrace them. Lean on them. I should have done it earlier. I am one of the lucky ones. My village found me.

Dear Mom in the elevator, you are not alone. You are scared. You are terrified. You feel overwhelmed and heartsick. But you are not alone. Create your village. Embrace them. That is what makes the NICU experience bearable. I remember just 5 years ago keeping people away. I missed out on the support I needed. It took years for me to get it. That my village was there waiting to be tapped. Once I understood this journey became easier.

Not better, but easier.

Don’t make that mistake, Dear Mom In the Elevator. Let your support system be there for you now and forever.

Love,
A parent who has been there and has the t-shirt.

A parent that is there for you, if you need.

A mom who wishes she spoke up sooner. That she said HELP. That she allowed those who love her and her child to help them.

PS–I had a different post almost ready for this Finish This Sentence Friday, Dear Mom…but then the elevator happened.

Holy crap I’m a cohost and really hope I didn’t screw this up 🙂 Please link up below!

What happens…

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What happens when you begin to lose faith? In perspective we haven’t been on this journey long. Five years is nothing when compared to other children’s battles. Having a child undiagnosed with unexplained ailments compared being a parent whose child is fighting a life threatening illness is insignificant in comparison.
I apologize to all who read the Dr. House post and the Poor Me post. I promise I am not just regurgitating, or wallowing. I was just hit, yet again, by the bat that is a doctor who passed the buck.

I feel foolish and selfish for even getting upset. Let alone discussing losing faith. I try to keep this blog upbeat and fresh. I hate wallowing, repeating myself. But I am struggling. I am second guessing myself. I am wondering if I am the mom who cried wolf.

Why am I upset if not one of the five doctors I have contacted do not think it is significant or alarming that Boo is having swelling in her arms, hands, feet and legs?

So what do I do when I begin to lose faith? I get pissed. Seriously pissed. In all honesty I also had a healthy cry, a text-fest with Tia and a glass of wine. Maybe two.

But I got pissed and I decided that it’s not okay. I’m okay with Boo being undiagnosed but I am no longer okay with cardiology telling me to call rheumatology who tells me to call the cardiology who tell us to have our Pedi order a test.

Which she does and then that test is cancelled by radiology who doesn’t think it is necessary.

Because really, why should we investigate why a child is having intermittent swelling in their extremities for no reason?

So I got pissed. I did some more research (cause I have spare time) and found another specialist to contact. I am making cardiology see her next week and not leaving until he refers us some where. Any where.

I have reached out to two different “Dr. House” type doctors that are not local but I don’t care. I have e-mailed yet another doctor whose blog I read to ask for a recommendation. I found through my own searching of Children’s Hospital a center that deals with disorders of the vascular system.

I am not giving up. I am not crying wolf. I am not waving the white flag.

Some day. Some how. My child will have a doctor look at her as a whole child and not say call another doctor who will then cancel a test.

Just because her various ailments are not deadly doesn’t make them any less significant. They just make it easy to put into perspective. I know what Boo is experiencing isn’t life threatening. But it is impacting her life.

And that’s enough for me to get my big girl pants on.

Some people lose faith and curl up in a ball. There is nothing wrong with regrouping. Me?

I get pissed.

Thank you to everyone who reached out last week. Who gave me ideas, support and were just there being my village. I am using all of the tools you give me to stop wallowing and instead remembering the warrior mom creed:

You will not dismiss my child. She is too important.

Okay, if it’s not our creed it should be.

Dear Disney Pop Tarts

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Dear Disney Pop ~~Tarts~~, ahem, Stars,

I like you. I honestly do. I think you are cute. I think you have talent. I think you are doing a great job. There is nothing like watching your previously non-verbal daughter belt out the chorus of Come & Get It by the former princess of Waverly Place. It’s even nicer when your older daughter learns about dyslexia because you are willing to be outspoken about how you succeed with a learning disabilty.

But when you 10-year old who thinks Selena Gomez is the BEST SINGER EVER quickly followed by Zendaya, Bella Thorne and the rest of the Disney pop stars asks to buy a poster of her favorite singers, it is a tad alarming.

The posters and videos? They make me feel like an old curmudgeon. Like Oscar the Grouch, Oscar the Roommate (yes, I’m that old) or worse my mother.

Now, before you think I am being harsh I want to defend myself. I actually like some of the music. Last week stuck in traffic Abby and I amused Boo acting out the parts of the Frozen soundtrack. I got to be Elsa (because she doesn’t sing much according to Abby) and all the men (because I shouldn’t sing according to Abby).

Not only did I amuse Boo. I horrified a carload of teenagers in the next lane over. I think their mom’s should be thankful for me to making sure they utilized any form of birth control that day.

I’ve written before about the mixed messages Disney seems to send to our daughters. But now, well, as a mom of two young girls I’m asking you, the pop star, to realize the responsibility you inadvertently took on when you became a star.

You thought when your parents signed you up for that cute little show you were just acting and/or singing. But with the genre you chose it is more than fulfilling your dream. You see you are sparking little girls that were once like you. You make them believe. You provide the basis of the pretend play. You become their hero.

Then you grow up. You outgrow the show that made you. You outgrown you fan base. This is understandable. All kids grow up and go to college or in your case, the next stage of your career. Except you forget the date that brought you to the dance.

The kids that still idolize you haven’t grown up as fast or as much. They think you are your character. They are the reason you can afford that gown, that car, that vacation with your boyfriend.

I know you want to be seen as a serious actor/singer. I get it. But our children don’t understand. They don’t understand why your belly button is showing on a tween magazine. They think it is gross when the see a headline with you and your boyfriend on a crazy magazine at the check-out stand.

As parents we try to limit the outside influences. But when we are checking out our groceries it is impossible to to answer the question on why so-and-so is dating him because he isn’t nice and is a boy and is gross.

It becomes even more difficult when you are on the cover of an adult magazine, topless bar the hands covering your breasts. This magazine isn’t behind the counter, but right next to the Kit Kats.

I ask you to find a way to stay true to what brought you the fame. Be the star, the hero of millions. You are not Barbara Streisand or Adele or Jennifer Lawrence. You are a pop star who would have been in public high school if not for the millions of preschoolers and tweens that made you a household name.

You don’t have to stay the tween star. Be the Taylor Swift who has learned to bridge both audiences. Don’t be one of the million one hit wonders who faded when they became more interested in shocking us than making quality films and music. Don’t forget who brought you to the dance in your quest to become the next big thing. Become the artist who has the mom and the daughter rocking out at your performance. Your greatest gift as a performer is reaching all audiences.

And cover up the breasts with more than your hands, you’ll catch a chill.

No interest

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I have no interest in being a person who wallows. I do not want to be a blog that focuses on one theme. I think of this blog as my therapy. If I am lucky it is your therapy too because you realize you are not alone.

Whether your child is healthy and ornery like Abby or challenging like Boo or your house has a crazy puppy who is equal parts loving and destroying your house. I want all to feel welcome and to feel a connection.
Then there are days like today. The day that started out promising, too rainy to run. Waking up early to realize that the morning goes smoothly without incident. You knew it was too good to last.

It started innocently enough. With your daughter telling you that her pants had a whole in the, well, crotch yesterday. A boy on the bus noticed and it ended up into a discussion about who had an elephant trunk and who was flat.

Yeah. I went there.

You tell the boys mom. Because you want to make sure that 1. she knows your child typically does not go into school with a hole in her crotch (unless she is Kristi) and 2. that you made sure there was no inappropriate show & tell on the bus that would get either kid suspended from elementary school. The other mom kind of reacted differently than you, had ‘the talk’ with her child. You felt bad because you saw and admitted to the inappropriate humor to the situation. The fact that Kristi saw the humor and said HEY RIGHT A BLOG POST ABOUT IT made you feel better.

You think that is the most you would have to deal with in a day. You think hey I handled this maturely. I answered my daughter’s questions in a way that she understood and didn’t feel embarrassed about. I promised not to tell her dad. Thank GOD he doesn’t read the blog since I never promised her I wouldn’t tell the world.

Then the other shoe drops. Boo happens. She has a meltdown at school and at home. Abby tries to compensate by being the good girl. She tries to placate Boo but I stop her because I do not want to reward Boo’s behavior.

I realize that I am wallowing. I am stuck in this mantra that Boo is sucking the life out of us. That as awesome as she is, she is draining. That I suck at this. That I cannot stop wondering where Spring is. When life will get easier.

When Boo will not demand so much energy (probably not going to happen). That I will not have to demand a doctor pay attention.

That I will not think life would be easier with the Abby issues.

I never intended to resent Boo. But sometimes I do. Sometimes I suck at this whole “special” parenting thing.

Something else I never expected to do. I never had an interest in being a parent, let alone a parent of a child with challenges. Sometimes it is great. Sometimes it sucks. Most times it is not the life I intended.

But it is my life and I am doing the best I can, even when it seems I’m not.

Therapy with love

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Every month we have “workshops” at Boo’s school. It is a time when we get to be at her school for an afternoon and observe her various programs. All of her therapists are there, along with the head of her program. We find it a very rewarding, if sometimes heartbreaking, experience.

It is an opportunity for us to ask questions. To provide input on what is happening at home and seek advice. We are able to see the techniques corrected by the head of the program and adapted in ways to promote Boo’s best chance for success.
Success, though, is hard fought. The yesterday afternoon Boo refused to do her program. It was simple really, she just had to answer a question.

For whatever Boo reason there is, she refused. Simply refused to comply. David arrived at pick-up, her tortured therapist explained that Boo wasn’t being compliant. The first time for this particular therapist. David couldn’t wait, Boo had after school therapy. According to him, he put her in the car. Asked her the question and not only did she reply…

She replied with a grin. Repeated herself just to make sure David heard her.

Round one: Boo

Today I drop Boo off to her integrated preschool and am stopped at the door. Instead of going into school she is taken to her SPED program where they will repeat the program until she complies.

I try to understand it. That they cannot let her ‘win’. That this is important because it will matter one day that she answers a question when asked. For her safety she must comply. It is not acceptable to not respond to a teacher, a policeman, me. Boo must begin to understand that it is not up to her.

I wouldn’t put up with it with Abby, for example. If a teacher asked Abby her name and she refused I wouldn’t say, just let her go play. I would hold the teacher and Abby accountable.

But it’s Boo.

Part of me is proud of her stubbornness. Even as it frustrates me. Her stubbornness has given her the determination to roll over, sit up, walk and run. Her stubbornness has allowed her to become a verbal child, overcome her fear of sand and open doors that should have remained closed.

I’m also overjoyed that this behavior is happening at school. I always feel like a hypochondriac when I attend workshop and say Boo is exhibiting a behavior that she never repeats for them. It makes me happy to know that she is feeling comfortable to let loose at school.

Boo went to the SPED classroom with her therapist. I went to work worried. Both for the therapist and for Boo.

Eventually Boo complied with what her team was asking her to do. It took almost an hour an a half, but she did it. Boo never understands that it hurts her therapist when she is being stubborn. That at five years old she has the power to break our hearts because we want to play, we want to be at Boo’s speed.

But for her safety we cannot give in. The ABA therapy works well for Boo. As long as it is administered with love and patience.

Round two: Therapist

When I picked Boo up from school she was the happy little girl we know and love. She hugged her therapist good bye. For the rest of the afternoon she repeated the phrase they wanted over and over again, without prompting.

Proving once again she is the stubborn girl we know and love. Doing things in her own time.

Round three: Boo

I’m sorry to all her team that Boo was challenging today. Thank you for loving her through it.