#LemonadeForLakeHighlands

Tonight I started writing a Facebook post to share in a couple of moms groups in the Lake Highlands area of Dallas and realized it was turning into the longest post ever so I decided to really long form it and turn it into a mini-blog! (editor’s note {I’m my own editor so this is in first person, also I am sure this brackets inside a parenthesis thing is a grammatical mess, and now I have a run-on, in a bracket, inside a parenthesis, inside an editor’s note — when there is no editor} When I wrote this the intention was for it to be mini then I started talking and couldn’t stop! #storyofmylife)

While I am creating a call to action specifically for Lake Highlands and Dallas as a whole, there are some elements to this story that I think readers all over can get something from, and hopefully be inspired to help.

First of all, I want to tell you all a little bit about my friend Caren. She is one of the strongest and kindest people I have ever known, and that is saying something because I know some pretty kick-ass people. I won’t share her whole story with you- she wrote a book after all so she can tell it much better than me, you can check her out at www.carenbright.com. But among all the things that she has lived through (that woman shares my Survivor gene,) I think the hardest and the most un-imaginable to me is that she spent a period of time in a homeless shelter with a baby.

Now I have had more than my share of hardships, but I have to be real honest here and say that I was always privileged. There have been times when our budget was tighter, but that meant I couldn’t eat out whenever I wanted or get my hair colored as often as I would like. I have never had a day where I wondered if I would be able to make rent, or where my next meal was coming from, and certainly never a time when I couldn’t afford to buy diapers for my kids.

But Caren did. And then she fought her way out of generational poverty (with the help of an amazingly strong faith and a beautiful community.) And then, she started a non-profit organization, Pamper Lake Highlands, that provides free enriching classes for families, and motivates them to attend regularly by providing free diapers at the end of each week. Three days a week she serves 85 women and their children, all of whom are living in poverty, and offers programs like ESL, GED, parenting, financial literacy, counseling, assistance connecting into other community resources, and much more. AND their kids get to attend free high-quality pre-school. She calls it “Dual Generational Poverty Intervention,” and she does it so well because she has lived it herself.

She even designed her own curriculum, Bright Futures, which goes beyond the hard skills that people need to succeed, and addresses things like goal setting, positive mindset, accountability, and conflict resolution. She has said to me before, (and I paraphrase because my mind since kids is like a sieve) “People who have never been able to think beyond the next paycheck have probably never made a vision board. Because how can you spend time and energy imagining what you want your life to be if you don’t first believe there is a chance that can happen for you.” That, along with many other things she has taught me have blown my mind!

Bright Futures Graduate
Quote from Erika: “I started going to college and received my CDA because of Bright Futures. Pamper Lake Highlands has given me the opportunity to grow my vision for myself bigger to become an elementary school teacher and inspire the next generation.”

 

And now Caren’s in a jam. And we are going to help. That’s right I said we. If you have read this far you are contractually obligated to join in. You signed a very small contract with your eye movements without knowing it. (editor’s note: remind myself later to pitch this idea to some tech investors…)

I have already given Pamper Lake Highlands what I can financially right now. So that leaves me with the sometimes valuable and sometimes completely worthless currency of IDEAS (Imagine me saying this with lots of jazz hands!) Hopefully for them it is one of my winners.

So. A donor who had made a major commitment to the organization backed out at the last minute. I’m sure they had a reason but, note to donors, PLEASE DON’T DO THIS!! It really hurts small non-profits.

And that leaves them short for all the bills they need to pay on Tuesday. And I know it was just North Texas Giving Day but those checks don’t come until after Halloween and they need help now!

So here’s what we are going to do. We are going to get a bunch of people in Dallas to promote volunteerism in their kids and help them set up lemonade stands. Since we may finally have some fall-ish weather, people can also elect to do hot apple cider and pumpkin muffin stands. Whatever you want to sell- set up a table, grab your adorable kiddos and march to your front yard and start selling. My girls and I are doing one tomorrow afternoon and selling hot apple cider, rice krispy treats, and these things Emma has been making out of empty Kleenex boxes called “Sneaky Peaky boxes.” (editor’s note: this is also a great way to get rid of excess kid crafts you have lying around. People will pay a couple of bucks for them ’cause your kids are cute and they don’t want to crush their artistic dreams- your kids feel awesome because their art sold, you get it out of your house, and you raise money for a great cause that really needs it!)

All you need is some lemonade and crappy kid art, a jar for donations, a posterboard that says #LemonadeForLakeHighlands, and some kids! Then when people come by, tell them a little about why you are raising money and… here’s the key, encourage them to leave a donation in the jar but even better- go to their website and make a donation (www.pamperlakehighlands.org) or just shoot them some money on PayPal to accounting@pamperlakehighlands.org. The thing is that if people take the time to do that they will generally give a lot more than a dollar or two. That is how a “Sneaky Peaky Box” is going to sell for $20- well that and my mom will probably buy one!

I can see it now- an army of kids in their front lawns united in the quest to help bridge this gap so that this incredible organization can keep their programs going and so that my bestie Caren can stop stressing out for a minute. A wave of #LemonadeForLakeHighlands photos and posts showing Caren that we see her and the work she is doing. And a flood of donations (I really like how I mixed my metaphors here) that not only get Pamper Lake Highlands out of this tight spot, but give them confidence that if they keep serving their community, their community will show up for them.

***If you want more information about how to participate, feel free to email me at natalie@mommiesinneed.org.  If you would like to set up a stand, let us know and we can drop off some marketing materials about the cause as well as send you a short info sheet with a couple of “How to” tips. And if you don’t live in Dallas or can’t do a stand this weekend but want to help, please go to the Pamper Lake Highlands website and donate. As little as $5 makes a difference, but nobody is saying no to $500!***

 

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Mommies Day

Next Sunday is Mother’s Day… a day when we are supposed to honor moms. Because moms get stuff done. This world functions because of the millions of things that mothers do every single day.

If you have ever read this blog before you probably know a couple of things about me (if you need to catch up you can check out a brief timeline of crazy):

  1. I am a mom to twin 7-year old girls.
  2. I am a Survivor. I have lived through cancer, the removal of way too many organs, depression, panic attacks, so much surgery, and the loss of my 28-year old brother- all in the past seven years.
  3. I started a non-profit organization called Mommies In Need (kind of by accident.)
  4. I really enjoy maternity pants (even when not pregnant,) the use of parentheses, excessive exclamation points, and the Oxford comma!!!

Today I am going to focus on number 3. Short summary of a very long story: just as I was coming out of the worst of my health problems, my friend Annie got diagnosed with colon cancer and needed help with her small kids. I sent a nanny to her and started crowdfunding to pay for it and it wound up turning into Mommies In Need. When I started MIN, it was just me and a couple of people I suckered into being on a board of directors that met on my guest bed while all our kids ran around screaming. For some reference on how this all started, check out My Why.

And last Friday night, just four and a half years later, I found myself on a stage in front of a crowd of 250 people (next to Dale Hansen!!) announcing that Mommies In Need has now provided over 18,000 hours of free childcare to parents going through a health crisis.

Those who know me understand that I am always ready to hop on a stage. I was basically born with “jazz hands.” I routinely embarrass myself in public and online to raise money for MIN (check out our Facebook page to see the time I sang Mamma Mia at Target.)

And yet leading up to Friday I found myself extremely nervous.

Nat on Mike
Sweating so much under that cape!!

Because this thing, this little spark, this call that I felt years ago has grown into something I never could have imagined. Not only are we continuing to develop and expand our successful in-home program, but we have found an innovative way to serve exponentially more families, and those who need it the most.

On Friday we announced publicly for the first time that we would be building a drop-in center at Parkland Hospital to serve the children of patients while they receive necessary medical treatment. We are working with some amazing partners, like The Beck Group and Winstead, PC, who are donating their time and talents to this project.

And for those of you who aren’t familiar with it, Parkland is kind of big deal.

Parkland Health & Hospital System is the safety-net for Dallas County and is there when you need them the most- for the most vulnerable among us and for the most complicated, traumatic injuries and illnesses. And the need is staggering: About 1 million residents in Dallas County are uninsured or on Medicaid and critical trauma patients arrive at their doors every day. It’s innovative approach to care afforded Parkland recognition as one of the top publicly funded hospitals in the nation. 

And if that previous paragraph looks like I cut and pasted it, that’s because I did. See that is the text of my speech that got cleared by their communications team so I’m sticking to that when I write about it- I have 2 lawyers on my board now!!!

So now you all know where I have been for the last year. When I never responded to your text or email, when I seemed super distracted and ran in everywhere 10 minutes late — oh wait, that’s just me all the time! I haven’t written since December, but it’s not because I didn’t have anything to write about… I had all the things (except time), I just wasn’t able to talk about them yet. But now I can!

This collaboration that we are doing with Parkland is the first of its kind. There have been childcare centers at hospitals for the employees, or even at children’s hospitals to care for siblings… but not a place to care for kids when the parent is the one getting treatment.

We are the first organization to offer free childcare for patients at a public hospital. Or any hospital really. Which is crazy! Because something I have learned in the last 5 years of working in this space is that you cannot address women’s health if childcare is not a part of the picture.

That seems like common sense, right?! Except no one has studied it…until now!

Oh yeah, did I forget to mention that we are also working on a research study? When I say we, I mean Parkland and UT Southwestern Doctors, not just like, me with a clipboard.

And I haven’t even gotten to the big, big, picture part of this thing. We are building this whole center to be something that we can scale and replicate in hospitals throughout North Texas and eventually across the country.

I am so unbelievably excited, and also a little terrified. Because this beautiful thing that I created is growing. And with every day it gets a little bigger, and more self-sufficient, and I am proud, and in awe, and realizing that it is not just mine anymore. It is time for it to venture out into the bigger world.

So this is where I circle back to Mother’s Day… see how I did that? Because MIN is like a child… did I just ruin it by explaining the metaphor?

Anyways…I have always looked up to my mom. I just had no idea how much until I became a mother myself. Before that I didn’t really understand that to be a mom is to have your heart out walking around in the world.

Me and my mom
I love hanging out with her… especially at an off-Broadway show held in a bar!!

My mother taught me how to love well. And she did it under some pretty difficult circumstances.

She took care of me when I was little by making me a nest on the couch when I was sick (which I do for my girls now), and she took care of me when I was a grown woman with kids of my own who needed her Mommy. My mother spent months going back and forth between helping with my babies during the day and staying at the hospital with me at night. She helped feed, and bathe, and dress me when I was too weak to do it on my own. Not to mention the fact that she was the only person who could perfectly arrange a “nest” of pillows for me to get comfortable in a hospital bed.

Sometimes I get compliments on my resilience. On my ability to turn the worst things in life into a blessing for others. On my kindness. But to quote a late 1980’s PSA, “I learned it from watching you, Mom!”

I have written before about Annie, the mom that I started MIN to help, who sadly passed away in 2018. We are naming our new program “Annie’s Place” in her honor.

When we open Annie’s Place at Parkland, we will have a plaque on the wall that reads:

Mommies In Need was built by moms to care for moms. We celebrate the community of women that make everything possible. We dedicate this place, Annie’s Place, to them.

And the first name on it will be my mom, Connie Howe.

Happy Mommies Day!

** If you would like to honor a mom in your life, you can make a donation here.If you donate $200 or more OR sign up to be a monthly donor of $25 or more, we will inscribe your loved one’s name on the plaque and send a card on your behalf to a designated person with the message:

“In your honor (or in memory of your loved one), a donation has been made to sponsor a child at Annie’s Place at Parkland. This donation will give 8 days of safe and loving care to a child whose mom is getting necessary medical treatment at Parkland. Your name will be inscribed on a plaque that hangs at Annie’s Place that reads:

Mommies In Need was built by moms, to care for moms. We celebrate the community of women who make everything possible. We dedicate this place, Annie’s Place, to them.”

Once you have made your donation, please email info@mommiesinneed.org with the name as you would like it to read on the plaque which will hang in Annie’s Place as well as the address you would like to send the card to if applicable. If you would like the card to be received before Mother’s Day we will need all information emailed by Wednesday May 8- we will continue to send out cards after this, they just might not arrive by Sunday.

We welcome donations in loving memory of someone special to you.**

 

Healthy

Now that Christmas is over and we are rapidly approaching a new year, my Facebook feed is constantly asking me to look back at all that has happened in this last rotation of the earth, which for me has been…a lot. The end of 2017 and the first five months of 2018 were pretty much the worst. There was too much death, another major surgery, and most of my time spent feeling sick, exhausted, and legitimately close to a nervous breakdown.

But in the later half of 2018, things have started to turn around for me. It has now been over eight months since my last blood transfusion and/or iron infusion. To put that in perspective, for the year prior to that I was getting them as often as every week. That means my horrible surgery last March with the agonizing recovery actually worked!!!

I am no longer loosing blood at an alarming rate, I am not in pain, and it has been long enough now that I am starting to trust and dare to hope that I am healed. Now I know that my health will always be more complicated than the average person. I will have to get scans and scopes forever. And a stomach bug could easily put me in the hospital. But I might finally get a break from the near constant beat down that my body has been under for the last seven years, and that is a prayer I was not sure would ever be answered. At least not in the way I wanted.

It’s funny, but in the last few months I have gotten the same comment a lot, “You look so healthy!”

At first I wondered if they were just trying to find a kind way to say I have gained a bunch of weight. After all, I have put on a solid 40 pounds since I wrote this post a few years ago. I was reading through my half written drafts on this site (of which there are many) and one of them was called “2014 can kiss my skinny ass!” I changed the title before publishing, but you can read that post here to get an idea of where I was a few years ago at New Year’s. Spoiler alert, it was not great.

While I would no longer describe my ass as skinny, I am definitely in a better emotional and physical place.

So if they weren’t just referencing the fact that there is a bit more of me to love, what did they mean by healthy? I started listening to the other things I heard people saying about me- I have color in my cheeks, I look happier, and I have more energy. I realized that since I moved back to Dallas, I have been pretty consistently sick in one way or another, even if I was trying my best to hide it.

They only knew a Natalie who was in a constant battle with her body. Who went almost four years with barely enough blood to function. Who was fighting crippling panic attacks and depression and who just generally felt crappy a large portion of the time.

What they are seeing now IS more of me, or at least more of the me that has emerged from the shitshow of the last few years. When I wrote Scar Tissue, I said, “I think I am going to like the person who comes out on the other side.” And I do. I am discovering a me who is confident, resilient, has a compassion that comes from having lived through tremendous pain, and who is no longer controlled by anxiety and depression.

I am still grieving, which is different. I get sad because of my losses this past year. My heart hurts when I come across a shirt design like this one and think how much my brother Mark would like it, but then realize that I will never buy him a Christmas present again.

IMG_4684
Man, Mark would have loved this!

That, though, is not depression. That is the reality of dealing with the death of someone you love. That pain is the reminder that he was real and he was important and that I will probably never stop missing him. I understand now that deep grief doesn’t go away, your life grows around it and it changes into something more bearable.

Depression for me is like looking at the world through a sheet of Plexiglass, everything is distorted and feels far away. And I can gratefully say that is not how I feel these days.

I experience joy, and love, and frustration, and sadness, but they are bright and clear.

As we go into 2019 I feel a kind of hope and excitement that I haven’t been able to access for a long time. The kids are great, my husband is supportive and funny and always there for me, I have an awesome village of family and friends, my mental and physical health are the best that I can remember, and I am gearing up for Mommies In Need to expand in a way that will allow us to help exponentially more people.

So, yeah, I guess I am healthy and it feels pretty damn good. I am ready for 2019 and I can’t wait to share it with you!

The Unimaginable

“Are you ok?”

“No. No, I am really not.”

I answered honestly as I broke down in my friend’s kitchen in a fit of wracking sobs. And then I was literally surrounded by love as seven of my closest friends huddled around me and held me when I could not stand on my own. Then one of them in beautiful comedic timing said “Here, hit Sujata!” and we all broke out laughing. And I couldn’t help thinking, “laughter through tears is my favorite emotion.”

See for some reason (that I still am not sure of) this group of ladies who have seen each other through a lot of life’s up and downs decided to have a movie night and watch Steel Magnolias. I think it had been so long since I had seen the movie that I had forgotten how wonderful and funny and well-acted and heartbreaking it is.

The Sally Fields scene in the graveyard is a truly astounding performance. One that I don’t think I ever really understood until now. The rawness and vulnerability of her grief and her uncontrollable anger at the unimaginable injustice of losing a child cracked open a part of my heart that I have been trying very hard to keep closed.

Because grief is deep. It can feel like a giant pit that is too scary to look into because you can’t tell where the bottom is, or even if there is one.

I said for a long time about Mark’s death that I felt like there would be a time when it gets worse before it can get better. I have been swimming really fast and hard lately but I think maybe that time has finally caught up with me. It’s why I haven’t posted in so long…sitting down to write is a form of therapy for me. And as with much of therapy it doesn’t work unless you allow yourself to go to that deepest level.

And being there, dealing with that, feeling those feelings, just plain sucks. It is the fucking worst, and I have been doing everything I can not to have to.

But here I am… crying into my computer with a glass of red and a box of Kleenex. Waiting for the laundry to be done. Because one of the greatest proofs that life marches on despite the unimaginable is that there will always be more fucking laundry.

Yesterday I broke a little. And maybe that’s good. My spine of steel allows me to get through just about anything, I have excellent coping mechanisms that have kept me going despite the constant barrage of difficulties that have been hurled my way these last 6 years.

But that spine that holds so much is heavy to carry around. I have knots and back pain that I am working on releasing through medical massage and even Reiki. But my body is screaming at me that I cannot carry that weight for much longer.

So how do I lighten the load? I think I need to lean on the people in my life who can help me figure out how to make space for my grief. And my anger- which most of the time I am unwilling to admit that I even have.

Today I snapped at one of my girls for something dumb and got off the phone with a friend who was only trying to be helpful by rudely saying, “I need to end this conversation- you are just stressing me out and I can’t right now.”

I’m not mad at them or my husband who has chosen the worst possible time to come down with the dreaded man cold. I am mad at the fact that life is really fucking hard sometimes. And not fair. And that we loose amazing people we love and that we have absolutely no control over any of it.

Yesterday marked the one year anniversary of the death of my friend Amanda. And I loved that woman. She cared for her husband and sons with a fierceness that had her battle for every minute of the seven years she lived with cancer. We were instant friends who met waiting for blood results in a chemo room. She was kind and funny and stubborn and just a damn good person. And I am mad that she didn’t get to stay longer in this world and that the last months of her life were agony.

When I visited her just a week or so before she died she had wasted away to nothing and was in constant pain and in and out of consciousness. But she still held my hand, and laughed with me, and I got the chance to tell her I loved her and had the blessing of a moment in which the haze from her eyes cleared and she told me she loved me too.

So I weep for her. For the unimaginable- to know she was dying and having to leave her children. I weep for her husband who is a such a good man. And for her two boys who I think are destined to be spectacular people because of the heart of the woman who raised them, but who don’t get to grow up with her there.

And I prepare. Because I know that my grieving season is just beginning. We are almost at the first anniversary of my brother’s death. Then I go into my first Thanksgiving and Christmas and New Years when I have to really begin to understand how to live with a giant hole in the fabric of my family. Then before I know it will be the one year anniversary of the death of my friend Annie (who was my reason for starting Mommies In Need.) And shortly after that the 30th birthday of my living brother and the reality that his twin will never hit that milestone.

So that’s a lot.

In a few weeks I will be gathering with my family to acknowledge the fact that it has been an entire year since Mark shared this earth with us.

That is so hard to comprehend because it seems both like it was just yesterday that we were learning he was gone and like it was a lifetime ago.

I have only recently been able to start looking at pictures of Mark as a child because for some reason it is those images of him as the sweet little baby that I welcomed home from the hospital, or as the little boy who would fall to the floor in fits of laughter at shows that he had already seen a million times that make me ache most profoundly.

November 1, 2018 will find me mourning the loss of Mark and also celebrating him with the things and people he loved. We are doing a small Day of the Dead gathering in his honor with my immediate family- after all he had a huge Sugar Skull Tattoo so that seems right. We will enjoy his favorite food (which happens to be Mexican), drinks (there will be much Jack Daniels,) and I might even try to cough my way through a Malboro Red. I am looking forward to the chance to gather with those who loved him most and talk about him. But I’m also on emotional overload.

Don’t get me wrong…there is a lot of good in my life right now. I am healthy for the first time in a long time, I haven’t needed blood or iron in almost 6 months (which means that horrible surgery worked!) My kids and husband are a constant source of joy in my life, and there are fantastic, game-changing things happening with Mommies In Need that I can’t wait to tell you all about.

And I have dear friends, so many of you, both in Dallas and all over the world, who I know love me, and pray for me, and who will show up for me time and time again.

But if you see me and I seem off, or not myself, or I don’t respond to your email/message/text/call, forgive me. I’m probably just trying to make my way through the unimaginable.

“There are moments that the words don’t reach

There is a grace too powerful to name

We push away what we can never understand

We push away the unimaginable.

If you see him in the street walking by her side, talking by her side,

Have pity,

They are going through the unimaginable”

– “Quiet Uptown” from Hamilton

Scar Tissue

The past six months have been almost impossibly hard. I lost two good friends and a much-loved brother, dealt with bleeding so severe I needed a blood transfusion, and lived through yet another surgery with a much longer (and more painful) recovery than I was prepared for. Oh, and we moved into a new house 10 days before my surgery, so that wasn’t stressful or anything!

My girls have also been going through a rough patch. Getting ready for school every morning and bedtime every night have turned into a shitshow of epic proportions. I have had one particular battle more times than I can count. In this showdown (which has no winners) one of my daughters throws herself on the ground because her shoes and/or socks “feel funny.” If I gently suggest that she change her shoes, socks, or both, I am met with screaming in my face “NO! I WANT TO WEAR THESE!! MAKE THEM NOT FEEL FUNNY!!!” I have yet to figure out how to do that so we just went to Target and let her pick out all new footwear to save the last shred of my sanity.

And this has been an extremely busy season for my husband as well. We know he would rather be home with us, but he is working on a project that requires late nights and at least a portion of each weekend. As hard as that has been, I am fiercely proud of him and I want to support him in this job he enjoys and is good at. He is smart, and valued at his company, and I know that all he does is for the long-term good of our family. Because he has not been able to be around as much as he would like (and he understands that things are not easy for me right now) he is making sure to spend quality alone time with the girls and give me a break whenever he can. He also encouraged me to get babysitters as often as I need to help. But the girls just want me. If I am in the house, having a babysitter there sometimes makes it worse.

And I totally get it. They are six and in their short lifetimes they have seen their mommy sick and in the hospital and weak from surgeries, AND have learned what it is like to have a close family member die. And not a great-grandparent or someone whose death could be easily explained as a part of the circle of life.

I have had to tell my girls that their 28-year-old uncle who seemed to be healthy and strong died suddenly and very unexpectedly. And although I like to think I have modeled healthy grieving to them, there has also been more than one occasion when I have picked them up from school while unable to stop crying. They are not fooled by my brushed away tears and dark sunglasses and will loudly say “Mommy why are you crying!” in front of all the other parents and teachers.  I have chosen to be honest and just say that I miss my brother, but I know that seeing their mom so sad is confusing and upsetting for them.

And in my “Just Keep Swimming” method of survival, I have powered through all of this and still managed to throw back-to-back fundraising events for Mommies In Need while expanding our services significantly– we just accepted our 32nd family! Last Saturday we had a very successful auction, but it was a ton of work and a lot of stress. As just one example, my Board Chair, Auction Chair and myself stayed at the office until almost 1am the night before the event organizing all the donations for the auction!

ALL THAT JAZZ
Making an announcement in my 1920s flair for the Mommies In Need Auction

As I pushed myself through the week of the auction, I started to feel like I was nearing my breaking point. I figured out I was close when I started googling where celebrities go when they have a nervous breakdown. My clue wasn’t just the impulse to look up nervous exhaustion treatment programs, but the fact that I was reading descriptions and fantasizing about how wonderful it sounded to take a few weeks of complete rest from life.

It’s not that I haven’t had moments of joy. In fact there are times that the weight of so many lost lives makes me profoundly grateful for the laughter and the happy moments that I am able to experience. For what a gift it is to watch my girls grow up, to be held by my husband, to share tears and memories with dear friends and family.

I have loved seeing the kids settling into the new house. There is so much more space for them to play! I am thrilled to watch them explore and come up with creative games – the most popular one right now is for them to pretend they are building elaborate tunnels under the house. They will emerge from under a bed and report to me that their robots have made a swimming pool under there or that they are raising a herd of pet chinchillas.

But overall, life has just been hard lately. I have been sick and tired and in pain and short-tempered and depressed and grieving and hurting emotionally and physically.

Last week I made a conscious decision right after coming dangerously close to a panic attack that I needed to give myself a break. That practicing some real self-care was no longer optional. Because if I didn’t start taking care of me, I would reach a point when I couldn’t take care of anyone else either. And because I am (and want to be) the CEO of a growing non-profit, wife to a husband who needs support at home, and mom to very active twin six-year-olds, hitting that breaking point is just not an option.

Which brings me to this week. Which has been good! The best I have had in quite a long time.

Sure I had to fast for a day and get a scope (colonoscopy for people with no colons,) but I got to hear a huge answered prayer in the words of my surgeon when he said that I am healing well and unless I start having problems again he doesn’t need to scope me again for a year!!! I’ve had 4 scopes, a surgery, and countless office visits and calls with him in the past year so the idea of getting such a long break is amazing! Plus I have been extremely worried that this surgery wouldn’t work and I would just start bleeding again. There is no guarantee that won’t happen, but all signs right now look good for my health to start to stabilize.

And in a search for relief from the back and neck pain that has been a constant for me in these last few months, I found a medical massage place where I can get two sixty minute massages A WEEK for free (well charged to my insurance and I’ve met my out-of-pocket maximum – so free to me!)

I also had 2 therapy sessions, and the most amazing cranio-sacral massage/ reiki session which gave me not only physical relief of what I have taken to calling my “grief knots,” but also a safe space to release some emotions that I have been holding on to physically. I know many people probably think this a bunch of BS, but I feel better. Placebo or not, it worked for me. I left the session having processed some anger and sadness that I had been holding onto for far too long. And when I walked out I felt lighter and not so frightened.

Because I had been scared. I had been swallowing back the yuckiest parts of my grief because I worried that the pit of sadness and anger and loss was just too big. I had been using all of my very developed coping mechanisms to avoid trudging through those feelings. I was frightened that if I really let myself do the work of grieving it might be so hard and so sad that I would never stop crying.

But this week I allowed myself space to work on my grief. Because there is a part of grieving that doesn’t just happen (at least for me.) There is a part that you have to intentionally give yourself space to deal with. And I had been putting that off for far too long. I even refused to answer my therapist when she asked something like, “When do you want to talk about how angry you are about your brother?” My answer would be “Never,” or “I don’t wanna,” or asking if we could just fast-forward this part.

In my reiki/massage session the therapist worked on some of my scar tissue, of which I have quite a lot. And as she was working and talking to me I said something along the lines of, “Sometimes I feel like my whole body is made of scar tissue.”

It surprised me because I didn’t realize until I said it how true that felt. And she told me that scar tissue is beautiful.

And as I left her office, having let go of some of the things I had been hanging onto so tightly for so long, I started to understand what she meant.

My scar tissue, both physical and emotional, is beautiful because it demonstrates my ability to heal and move forward. It also serves to remind me of the things in my life that have worked together to make me who I am.

And for the first time in a long time, I am starting to remember and re-discover who that is. I am just beginning to be able to see that this season, this hard and heartbreaking season, will end. It will have changed me forever, but I think I am going to like the person who comes out on the other side.

Fast forward and pause

A couple of days ago I had a “Date” with each of my my fabulous and hilarious twin almost six-year-old girls. With one I took her to a swimming party and lunch and the other on a shopping trip and for a snack. And it was so great. I enjoyed every second of getting one-on-one time with these little people who I love so very much. I basked in the warm glow of them thinking I am the coolest person in the world (I am relishing that as I know it won’t last much longer!) And I even got to hear, “You are the most wonderful mommy… just the best, and I just love you so much I can’t…I can’t even tell you.”

Then we went home to our new house and I got to see the girls play outside and have an elaborate game which involved dressing up to be “a little bit fancy.” It was awesome. It was perfect, and fulfilling, and made me feel like I might actually be doing ok at this parenting thing. At several points in the day I looked at their smiling faces and wished I could live in that perfect moment forever. But there is no pause button on life.

Unfortunately, there is no fast-forward button either.

Part of my goal in taking them on separate dates was to get a chance to tell each of them that Mommy is going to have surgery and that I would need to be resting for awhile and give them a chance to ask me any questions they might have. They both took it remarkably well, which is not really that surprising since I have dealt with health issues their entire lives. And one of the things that I am most proud of in the parenting style my husband and I believe in is that we try as much as possible to be honest with the kids. We give them the basic truth of the situation and leave out details that are not age appropriate.

Because kids are really smart. And they hear EVERYTHING even when you think they aren’t listening… unless you ask them to put on their shoes- which for some reason my children are physically incapable of hearing the first 17 times I ask.

So the kids are fine with this surgery, but I’m not.

I know it is the best thing for me. I am hopeful that it will finally be the answer to the bleeding issue that has plagued me on and off for the last year. I understand that it will not be even on remotely the same level as my other major surgeries (it will be only 1-2 days in the hospital rather than the 10-12 day stays I had in 2014.) But still… I don’t wanna.

I have been saying that a lot lately. I realize I can’t skip past the really hard times in life. I understand with the rational part of my brain that I have to go through the messy, yucky, sobb-y, parts, but it sucks and but I would rather not.

Because of everything I have dealt with in the last six years, I know that I can survive just about anything. I know that if I keep going, sometimes one breath at a time, I will eventually get through even the roughest seasons. I am certain that one day I will be on the other side of the immediate trauma and be able to look back and say, “Well that was a really shitty year!” And I know that I am a person who will get to a place where I can use my pain for good in the world.

But I would really like to fast-forward to that feel good part and not have to plow through this sucky section filled with grief and pain.

If you know anything about me, you probably know that the last six months have been filled with one devastating blow after another. Since October, I have lost my 28 year-old brother, who died suddenly and tragically, and not one but two good friends to cancer.

I have also been dealing with an ongoing bleeding issue that has caused me to be hospitalized multiple times, subject to more horribly invasive diagnostic tests than I can even count, and recently to have a 2 unit blood transfusion because my hemoglobin was so low I could barely breathe.

Last week I had one of the strangest experiences of my life in which I had to drink barium and then lay down on a table and have more barium injected rectally. Then the motorized table went from flat to vertical, sitting me up on a makeshift potty(basically a bucket with a plastic bag in it.) Then they lowered an x-ray screen on my other side so I was sandwiched between the now upright bed and the x-ray pannel. Next the radiologist comes in and says that I need to be higher for him to be able to see properly. So he raises the potty I’m sitting on about 3 feet up in the air.

So there I am, with my legs dangling in the air, a guy about 6 inches from me watching his screen and giving me directions- cough, tense up, release, etc. Oh and by release he did mean poop- in a potty suspended in the air, as he watched me. Don’t be jealous, I lead an incredibly glamorous life!

Then after a long meeting with my surgeon (and a highly unpleasant in-office scope, he tells me he thinks that he knows what the problem is- yay! And that we are going to fix it with surgery- not so yay.

It is majorly complicated but basically he needs to go in and cauterize my current bleeds and then put in some internal stitches to help keep it from happening again. Because of the rate I’m loosing blood we had to schedule this surgery ASAP.

This is yet another setback in a period of time that has already been far too much to deal with. I was talking to my therapist yesterday and we discussed how I’m depressed, but even my depression is atypical. I am having an extremely hard time emotionally and managing both anxiety and depression, or anxipression as I like to call it.

For me, periods of anxipression don’t look like what most people think of as depression. I am highly functional and productive, but that is just a coping mechanism. If you read Just Keep Swimming you can get an idea of what I am talking about. I feel like right now I am doggie paddling as fast as I can to keep my head above water. I don’t want to stop because if I stop swimming I am worried I will sink.

So here I am. The plan is that I will have surgery TODAY with a 1-2 night stay in the hospital then home for recovery.

As I know many of you will ask, I am good for help at the moment. My mom will take the kids the first couple of days and my husband will be with me at the hospital. Then my in-laws will be coming to stay with us for the next 10 days to help out.

I have been swimming as hard as I can for far too long. And I am tired. I need to rest.

In order to make myself actually take the time I need to let my body, mind, and spirit heal, I am taking a full two weeks off.

I have delegated all of my Mommies In Need responsibilities, I have family taking care of the kids, and I am going to do my best to do as little as possible for that time. Feel free to call, text, or email me, but please understand that I will probably be very slow to respond.

I do wish I could fast forward this part. I wish I could skip the crying and the not being able to breathe and the every step is hard and just jump to the I’ve made peace with this and I can use this bad to help someone else part of the whole thing.

But since I can’t pause the good parts or fast-forward the bad, life will continue moving at its sometimes glacial, sometimes whirlwind pace. And I will get through the worst parts by remembering those perfect ones.

My life has not been easy so far, but it has also been full of more wonder and joy than I could have ever predicted.

Thanks for all your love and messages of support everyone, I’ll be back as soon as I have taken some time to recuperate!

One Breath at a Time

It has been a just over a month since my world was forever changed. On November 9, I found out that my 28 year-old brother, Mark, had passed away suddenly and tragically.

About a month before that my friend Amanda died after 7 years of treatment for her metastatic breast cancer and a prolonged time on hospice care. When Amanda passed away, I was sad, and I missed her, and I was broken-hearted for her husband and her sons, but it was hardly a surprise. I had been visiting as often as I could through her last months and I saw her withering away. The last time that I went to see her, I held her hand, I got a brief moment of clarity from her drug-induced haze when she looked right at me and told me she loved me and I was able to say the same to her.

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The last picture I have of Amanda and I together.

On the drive home I sobbed and I prayed that she would let go, that she would be released from her unimaginable suffering and finally be at peace. When I got the news of her death, I was in the middle of writing an angry rant that I will probably post eventually, but I stopped and cried for a while. I had been actively preparing for her death with my therapist (as much as you can prepare.) Every time I saw or spoke to her I knew that it might be the last time and I always ended our visits with that in mind.

I first met Amanda 3 years ago when we were both in the infusion room getting treatment. I was happy to have her as a friend, and to be able to provide free childcare for her through Mommies In Need. Three days after her death, a fantastic group called Resounding Harmony was doing a benefit concert for Mommies In Need and we decided to dedicate a song to her and to light candles in her honor. I was the one who was going to deliver her tribute. At the dress rehearsal I was a mess. I barely got out the words I had written for her memorial and then I sobbed through the whole song.

But the next day for the show, I called upon every bit of strength that I had and I was able to speak for her in a way that I will always be proud of. I had no idea that event was a sort of dress rehearsal of it’s own.

When Amanda died I thought I knew what sad was. It turns out I had no idea.

I now know that there is a level of grief that is so deep it physically hurts. I know what it is to be shocked with news that knocks the breath out of your lungs. I know what it is to fall to the ground crying because you cannot keep yourself upright. I know the panic that comes when you feel that if you allow yourself to start crying you will never be able to stop.

When my brother died, my parents were extremely smart about how they told me. They called my husband and had him come home to be with me as I heard the news. When he said he was getting out of work early, I didn’t think anything of it at first. But when he got home, he guided me to the couch and he said he had something to tell me.

At that point I got this strange tunnel vision- I knew what he was about to say would be bad and my mind was racing as to what it would be. My first thought was that one of my grandparents had passed, but I had talked to them earlier that day, so that didn’t make sense.

When he said, “Mark is dead,” I did not understand the words that were coming out of his mouth. I went into a sort of shock in which I laughed and said “No, that’s not true.” He had to tell me five or six times until I could put it together in my head.

It’s funny how some memories are so blurry and others so clear. I don’t think I will ever forget how that felt as I began to comprehend that my baby brother, the sweet little boy nine years younger than me, whose diapers I had changed, who I read all the Harry Potter books out loud to, who is a part of most of my best family memories, was no longer on this earth.

I don’t think I have fully accepted that I will never see him again in this life. That still feels too big to even start to process.

The details of the days that follow are more complicated and personal than I can even begin to share here. I will say that I am forever grateful that my other two siblings and I live in Dallas and that we are all married to exceptional people who helped us get through the worst of it. We were all able to be together at my parents’ house as we stumbled through that first day. Grieving with people doesn’t make it any less painful, but it does make it a little less heavy. My family and I helped carry each other through the moments when none of us would have been strong enough to get through it alone.

As funny as it sounds, I have a lot to be grateful for from that period. Grateful that my family could be together. That I have two amazing and hilarious 5 year-olds that I can snuggle all the time. That a friend of mine is married to a funeral director so I had someone to call in those first hours to help us stumble through the practical things you have to do when someone dies unexpectedly. That I have a pastor and a church community who were present when I needed them. That one of my dad’s best friends heard the news and put together a celebration of Mark’s life just three days after we found out he was gone. That a wonderful musician and family friend was in town and sang in Mark’s honor. And that I had that dress rehearsal.

As we talked about what we would do and say to honor Mark, I volunteered to speak for him. When my parents asked if I was sure that I could do it, I said yes. I had gotten through my tribute for Amanda and I knew that it would be a thousand times harder but that I could also do it for my brother.

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This picture is from a few years ago but is still one of my favorites of Mark and me.

And I did. I read a beautiful message from my father, a poem my mother selected, and wove stories that my parents and siblings contributed into a speech that I think was just right for him. We ended it with a toast and a shot of Jack Daniels because that felt like something he would have thought was pretty badass.

I held myself together through the whole thing and then had the blessing of that beautiful song in which I let it go. I cried and was held by my loving family as we continued to share that grief.

So how am I now? Well, it depends on when you talk to me.

For a few weeks after we lost Mark, I went into a hole and pretty much didn’t talk to anyone except my immediate family. My friends texted and called and emailed but I couldn’t face talking to anyone. I have slowly started to join the world again, so there’s progress.

Sometimes I am pretty good. I am back at work. I couldn’t get myself motivated to start up again for a long time. But then Mommies In Need got applications from two new families desperately in need of help. I couldn’t get it together to do admin work or fundraising, but being able to help someone else going through a terrible time in their life made me feel just a little bit better.

Sometimes I am a good wife and parent. I can pick up my kids from school and play with them and talk to my husband about all the stuff we have going on in life. My patience is pretty limited though. I get irritated easily, I snap more than I would like, and I haven’t cooked an actual meal that I can remember (not that I am normally much of a chef, but right now even boiling water is sometimes too daunting a task.)

But then there are the times that I am so sad. So deeply sad that I can’t function. Or when I feel like a zombie just going through the motions. When I walk around a store for an hour and then leave without even buying anything because I am not actually seeing the store, I am just keeping my body busy while my mind checks out.

I am going to the holiday parties, and I manage it pretty well when I am around people I know and can be honest with. But I just can’t with idle chit-chat. I found myself at one party just sneaking off to a corner with an XL glass of wine because I couldn’t face anyone.

I will tell you one thing I know for certain. I will get through this. I am a Survivor after all. I get into dangerous territory when I spend too much time thinking about how much I have been through in the last six years and wondering how any one human being can be expected to cope with the constant blows I have been dealt.

But then I stop (maybe take a Xanax) and breathe. Another thing I am grateful for is that all the shit I have been through has taught me how to manage the worst moments in life. I have learned that you have two choices- curl up in a ball and die or keep going. I will always choose to keep going.

And that looks different depending on where I am. Sometimes I take it one day at a time, or one step or a time, or one tiptoe at a time, or one prayer at a time. And when it is really bad, when the sadness threatens to envelop me or I feel myself coming to the cliff’s edge of an anxiety attack, I get through one breath at a time. Take one breath and then another and keep moving forward. If I can remember to do that, I know that even this I will survive.

 

Love Wins

Today was beautiful.  Actually, it was freezing cold and I woke up late and rushed out the door without any breakfast or caffeine.  But, when I arrived at my destination, none of that mattered anymore.  I was walking into a place where love was palpable.

In Dallas, there is a church called Wilshire Baptist, that recently voted on a resolution stating that it would permit all members to participate in congregational life regardless of sexual orientation or gender identity, including the ability to consider all members for leadership, ordination, baby dedication, and marriage.

As I am sure you can imagine, in the middle of a red state, in the bible belt, after an extremely contentious election, this has caused quite an uproar.  Because of this decision, the church will be expelled from the Baptist General Convention of Texas (although they can still operate as a Baptist church.)  This was a consequence of their vote that the congregation understood when they made their decision.  What was not expected was that protesters would show up last Sunday, with bullhorns, screaming at the people walking into church about how they are all going to “Burn in Hell.”

Way to act Christian, Christians.

I respect everyone’s right to their beliefs, but I have no respect for people that spew hatred.  In my home church the message that “love is love” is preached from the pulpit and that is one of the reasons the members there are my people.   I believe in a Jesus who very clearly said that we are supposed to love our neighbors as ourselves and that everyone is our neighbor- and we don’t get to make exceptions for that.

I have been having a lot of feelings lately, I mean these last few weeks, right?!!! No matter where you fall on the political spectrum, I think everyone is feeling a little rough after this election cycle.

You know how I got through the election? By drinking an entire bottle of wine in my “command center” surrounded by the TV, my laptop, and my phone, while stress-eating half a bucket of leftover Halloween candy.  Around midnight when it was pretty clear how it was going to turn out, my husband had to force my drunken crying hot mess into bed and take my phone away from me.

But I digress.  One of my friends from church invited me to a Facebook group of people who were going today to form a line of love in front of Wilshire Baptist. The idea was to serve as a sort of anti-protest just in case the protesters from last week came back.

Luckily they did not, but something magical did happen.  At 8:30 on a Sunday morning a small group of about 20, most of us strangers to each other and with no ties to Wilshire Baptist, welcomed the church attendees with smiles and signs of encouragement and thanks.  It went so well that a bigger group of us came back at 10:30 to greet the next service.

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How can you not smile when this is your greeting?!

And I can’t even begin to count the number of hugs I got today. I certainly can’t count the tears that were shed, a large portion of them admittedly by me.  All the pastors and church staff came out to thank us, most of them crying, to say how hard this time has been.  More than one person expressed to us that this showing of community support meant the world to them. I had one woman tell me that she had not been to the church in almost 40 years because she was not sure she was welcomed and that today was her first day coming back.  I think she picked a pretty good day for a homecoming.

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My girls on the front steps of Wilshire Baptist making their love poster.

For the second service, I brought my kids and husband with me because I wanted them to see this outpouring of love for our community and the impact it was making on our neighbors who were hurting.  Standing out there chatting with strangers, hugging everyone, and covering these people with love was not only good for them, it was healing for my soul.

A part of me has had a wall built up around my heart recently.  Sometimes I feel like there is a battle inside me between my desire to love everyone well and my fear of what could happen when my heart is that open. The scary state of the world made me want to protect myself-to curl up in a little ball and just hope for it to get better.

Today I got to remember that the best part of life isn’t waiting for the world to get better, it’s doing what little bit you can to actually make it better.

Today love won.

 

I Am Sick & Tired of Being Sick & Tired

I’m over it.  I want to be able to write witty blog posts about the antics of my hilarious children. I want to complain about normal mom problems, like the Halloween Hangover (the struggle is real!) What I don’t want to be doing is writing yet another blog post about my ongoing health problems, and yet here I am.

It is easier for me to have a blog that people can read to keep up with my saga so I don’t have to explain it a thousand times.  I love talking to people, I just don’t love always talking about my crappy health.  And I know that the people who love me (and not to brag or anything, but there are a lot of you) are just worried and want to see how I am doing.  I wish the answer was that I am great, but the truth is a lot more complicated.

Some things are great- my girls are four and a half now, and although they have their moments, in general I am loving this age.  They are cute and funny and still think I am cool, but are old enough to entertain themselves sometimes. My husband is working hours that both of us hate, but there is never a moment I have any doubt that he is my perfect partner in this nutty life.  Our new apartment is great, and we are loving a break from the stress of home ownership (no more lawn maintenance and when something breaks we just call the building to fix it!!)

Mommies In Need is growing beautifully and we just accepted our 17th family, and are about to celebrate our 2 year anniversary, and I am loving my new part-time job at my dad’s company (I get to talk to adults! And go to the bathroom by myself!)

And yet I was hospitalized this week… that’s not so great.

Since I wrote Just Keep Swimming, a lot has happened.  My surgeon went ahead and cauterized all those bleeds, which seemed to be working…that is until I went to get my blood checked and found myself at a hemoglobin of 7 (which is almost to the point of needing a blood transfusion.) So we scheduled another scope (a colonoscopy for a person with no colon) and the surgeon found…nothing.  Everything was healed and my j-pouch (fake colon made out of my small intestines) looked good.

That would be good news except my hematologist (blood doctor, I have a specialist for everything) said that kind of a drop could only be explained by bleeding.  The problem then became figuring out where this mystery bleeding was coming from.

I went to my GI who had this theory about me having disappearing- reappearing ulcers in the scar tissue where they cut apart my small intestines to make my j-pouch.  That made sense to me and I was all set to follow his plan that we watch my blood and go in and cauterize the ulcers whenever they come back and just hope that the tissue will regenerate over time (with a possible trip to a hyperbaric chamber to speed up that process.)

Then on Tuesday I started bleeding ****TMI Warning, if you are offended easily by bodily functions please stop reading now****

Now, a certain small amount of rectal bleeding is normal for me-once again, stop envying my glamorous life.  But this was a whole different thing.  After four or five trips to the bathroom with nothing but large amounts of blood, I texted my internist and asked at what point I needed to go to the ER.  Her answer was, “NOW. Go Now.”

So I did.  Luckily Mike was home and my mom could take me so off we went.  After hours in the ER they decided that they needed to check me into the hospital overnight because if this type of bleeding kept up eventually I would need a transfusion.

Luckily, around 2 am I stopped having as much blood, but the on-call GI still decided to do another scope to see what was going on.  The good news- my pouch looked fine again! No re-occurrence of the ulcers, everything was normal.  He said the only thing he saw was some hemorrhoids.

Seriously?!!  I was hospitalized for HEMORRHOIDS?!!  I asked if it was even possible to loose that much blood from hemorrhoids and he said, “Oh, yeah.  I had a guy almost die because one was attached to a blood vessel.” Not helpful dude.

Now I am planning all my follow up appointments to deal with my hemorrhoids from hell and waiting to see if my surgeon thinks he can fix them.

So if you ask me how I’m doing, these days I will probably just respond, “Hanging In There,” or “Well, I’m Here.” But if I’m really in a mood I might say something like, “Bleeding out of my ass, how about you?”

If I do, please forgive my rudeness, I’m just really fucking tired.

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As Always, Making the Hospital look GOOD!

 

 

 

 

I Learned It From Watching You

Tonight I decided that I will no longer participate in any conversations about weight- my own or anyone else’s. The big exception to that being with my doctors (and my therapist) of course.

I just wanted to take a moment to explain myself so you don’t find me rude if I change the subject or move into a different conversation when you bring up your new diet, or the 5 pounds you can’t seem to loose, or how the cheese that we are eating is going to go straight to your thighs.  It’s not that I don’t get it.  In fact, the reason I feel the need to draw this line is that I get it too much.

It is far too easy for me to look at the numbers on a scale or the way my clothes are bunching around my waist and think how much better, how much happier I would be if I could just make that little bit extra of me magically go away. I can go back through my blogs and read One Hundred and Thirty Pounds and see that being skinny was a far cry from being healthy, but that doesn’t mean that the impulse to blame everything that is wrong in my life on my weight has just disappeared (see One Hundred and Fifty Eight Pounds.)

So I am taking action.  I am not giving that seed room to grow. My beautiful girls will hear enough of that from the world around them.  I refuse to allow them to hear it from me.

And talking about what’s wrong with our bodies is like a competitive sport for moms.  And even if we think those conversations are just between us grown-ups and our mommy juice, our little ones see and hear much more than we realize.  I am going to step on out of that race. I don’t want to ask my daughters one day where they learned to hate their perfect bodies and have their answer be, “I learned it from watching YOU Mom!!” (Cue the 80s PSA music.)

So I’m not going to do it anymore.  I won’t judge you if you want to have these types of discussions, but I will do my best to bow out of the conversation.  I am writing this publicly so that if you hear me breaking this new rule for myself you will gently correct me.  “We don’t say bad things about our bodies,” will work just fine to help me remember my resolution.

I took a bath tonight.  I read a book.  And as I got out and I rubbed lotion on my much- scarred belly, my thighs dimpled by cellulite, and my breasts that will never look the same after nursing twins, I made an important decision.  I am going to really work to love this body- broken and imperfect as it is.  Because a healthy body-image is something I would be proud to have my girls learn from watching me.

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