Just Keep Swimming

My family went to see Finding Dory last weekend, and besides being an adorable film that all of us loved (and that made me sob like a baby being sleep-trained,) it was also a good reminder for me about where I am in my life right now.

dory

I want to be able to say that everything is wonderful, that my health is great and that life is nothing but joy.  Sometimes I feel like that is what people want and expect from me.  I mean I am a Cancer Survivor!  I have lived through so much, it’s kind of time for me to be over all my health issues and emotional baggage. Now I realize that most of you probably don’t actually think this, but it’s what the not-so-nice voices in my head tell me. There’s also a lot of “Quit whining, at least you’re not dying,” and “Stop being so lazy,” that last one may be surprising to those of you that think that someone who runs a non-profit and has twin 4-year-olds has the right to relax every once in a while.  But anyone who also battles depression and/or a really harsh inner critic understands that those voices aren’t rational and that they are extremely hard to ignore.  Part of my well-developed coping mechanism system is that I keep myself busy doing things, I keep creating, I keep moving- because sitting still is dangerous for me.

I don’t know if depression is something you ever really “get over.” For me, while I’m not in the dark hole of major depression that I have known, there is still a certain heaviness around my heart that feels frighteningly close.  When the tragedy in Orlando happened I spent days weeping.  Breaking down into sobs at unexpected moments. Because I have such close ties with the LGBTQ community. Because there were years of my life that I spent dancing my nights away in gay clubs and I understand how much of a safe space that is supposed to be.  For some people, especially in conservative areas, a club or bar is the ONLY place that they can truly be themselves.  Imagine how exhausting that would be.  To constantly be pretending, hiding yourself from the world and to have the one place that gave you relief from that pressure be violated in such a horrific way.

That same week I also got some test results that have left me in a pretty raw emotional state.  My anemia, which I have been dealing with ever since my colon surgeries in 2014 has been getting worse.  My numbers suddenly dropped alarmingly so the doctors decided to do an Endoscopy and Flex Sig (like a colonoscopy for a person with no colon) to check for bleeding.  I was hoping that they would find the bleeding and be able to zap it right then and there and the problem would be solved.  Unfortunately, they did find the bleeding, but the area was too large and too fragile to cauterize.  Basically my pouch is just fine but the area around where they reconnected my small intestine has large bleeding ulcers and the tissue is extremely sensitive, so trying to stop the bleeding could actually wind up making it worse.

My GI did some biopsies and said he would talk to my surgeon and get back to me. The biopsies came back negative for celiac (duh, the only thing I eat that doesn’t bother my body is gluten) and Chrons (thank God, because if I had my colon removed because of Ulcerative Colitis and then developed Chrons too I would have totally lost my mind!) So that’s good, but it still leaves me with significant internal bleeding that “has no medical solution.” The current plan is to keep dumping iron into my system, check my blood more regularly to see exactly how much I am loosing and hope that I eventually just get better on my own.

Um…yeah.  That doesn’t really sit too well with me.  Oh, and by the way when I asked about a time frame for my intestines just “healing themselves” the GI said maybe years.  Like 2-5 years or more.  So I’m just going to be bleeding internally, which leaves me feeling tired and kind of crappy, and have to go get iron by IV every 2-3 weeks potentially forever.

I have a pretty good amount of perspective, and what I am dealing with now is absolutely nothing compared to the kind of daily agony I was in a few years ago.  And I guess I know that my body does not, and will not ever function like that of someone with all their organs.  And I have to learn to deal with that- but I feel I have a right to be a little pissy about it now and then.

And sometimes it makes me really angry, or really sad. Last Tuesday, I had just talked to the doctor and started crying when we got off the phone.  I could not stop but I had to go get the kids from summer camp.  So I walked into their school crying, and signed them out crying, and buckled them into the car crying, and then got home and put on Annie and watched it with them until I cried myself out and passed out on the couch.

At least my girls are growing up knowing that mom has feelings too. When they asked why I was crying I just said “because I’m really sad. You know how when you are sad you cry?” And they accepted that answer and gave me hugs and cuddles and  didn’t fight while I slept next to them.

But through all this I do see how lucky I am.  Lucky that I have friends who call me and offer to watch my kids after they see me crying uncontrollably at school pick-up.  Lucky that my girls have amazing emotional intelligence for their young age and are able to be gentle with me when I need it.  Lucky that I have a husband who will let me sob in his arms even when I don’t have the words to explain what feels so deeply wrong.

So what does all this have to do with Finding Dory?  Her mantra, one that was present in the first movie but gets a meaningful explanation in the sequel is “Just Keep Swimming.”  Whenever things get bad for her, when she forgets and is terrified, she always goes back to a little song she sings to herself, “Just keep swimming, swimming, swimming…” And every time, if she can just calm down enough to keep swimming something will happen that will lead her to a better place.

I’m adopting this as my motto too.  Because I have been through a lot, like A LOT, and when people ask how I got through it I usually answer, “I just decided to keep going.” or “I got out of bed every day (well most days) and prayed that there would be another day and that it would be better.”  But Dory’s line is simple and effective.  The opposite of swimming is drowning and that is something I refuse to do.

So when I make myself so busy that I don’t have time to think, I’m swimming.  When my body is so fatigued that I can’t make it through a day without napping and yet I still decide to create an entire summer camp program in just a few weeks [seriously check out Camp Kindness, it is really cool!]- that’s me swimming.  And sometimes if I don’t return your call or email or text, it’s not because I don’t appreciate the love you are showing me, it’s because at that moment I am unable to discuss what is going on in my life without missing a few strokes.

Some days I am barely keeping my head above water with a frantic doggie-paddle, and some times I am gliding gracefully and joyfully through the water with ease.  But no matter where I am on the about-to-loose it scale that day, I will trust that I am not alone, and that I am having a tough time right now, but there will be an easier season eventually if I just keep swimming.

 

 

 

 

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Hope

There are days when I look at the world, and see a place that has gone totally off the rails. A place where the blatant discrimination and racism and cruelty that we see every day makes me want to scream.  To give up.  To weep for the future that will be left to my children. To think that I can’t possibly make a difference when everything around me seems so broken.

When I wrote Survivor, I thought I was prepared for anything.  I felt confident enough in who I am that I believed I could handle any criticism that came my way.  What I did not expect though, was the overwhelming kindness with which I was met.  So many people, some of whom I hardly know, wrote, or messaged, or texted, or emailed, or commented about my post with words of encouragement, and solidarity, and support.  I had multiple women privately share with me that they too are rape survivors who had kept it to themselves for far too long.  I had friends and relatives I have not spoken to in years reach out to me to compliment my bravery and show me love.  And I did not have any negativity directed towards me.  None.

And that was truly a blessing for the scared little girl inside me who wrote those brave words but still worried about what people would think.  If I would be forever changed in the eyes of those who knew my secret.  I wish I could share the hundreds of messages of support that I received with every rape survivor who is afraid to tell her story or who feels alone.  That secret held a remarkable amount of power over me, and now that I am not clinging so tightly to it, trying to keep it in and stuff it down, I can actually let it go.

I feel so unbelievably free.  Light and joyful and full of hope.  And I feel this way in spite of the fact that this has been a tough week.

A few days ago I was sitting in the ICU waiting room with my mother waiting for my dad to get out of an emergency appendectomy.  He is doing great now, but at the time I was getting a little nervous because his surgery was taking much longer than the doctor said that it was going to.  Then we started flipping channels and Shawshank Redemption came on – this is the new Walnut Hill Medical Center place and there are flat screens everywhere and the biggest hospital rooms I have ever seen. I seriously had hospital room envy that my dad had a palace for his few hours there and I had to spend twelve days in a drab shoebox, but I digress…

So it was the part where Andy says, “Hope is a good thing, maybe the best of things, and no good thing ever dies.”  And I was reminded just how incredibly important hope is.  I realized that the greatest gift I have ever been given is resiliency of spirit.  After everything I have been through I still have hope.

Thank you to everyone who helped me re-affirm my faith in humanity this week by going out of your way to reach out to me and offer a kind word or a message of support, or a hug. I know a lot of you are going through your own struggles, so tonight I spent a few moments in meditation and prayer for those I know who are having a tough time right now.

I have this little candle that I bought as part of a youth fundraiser at my church; it is a tea light covered in tissue paper with the word “Hope” written on it and I lit it for the first time tonight.

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I wish for you that when everything is at it’s worst you can see the glimmer of that tiny scrappy little candle- held together with Elmer’s glue and tissue paper.  It may not be much, but just a little bit can change everything.  Hope.

 

 

 

Grace

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This year I am giving up self-criticism for Lent.  I mean, it can’t be caffeine, wine is obviously out of the question, and my Jamberry addiction is really just in it’s infancy, so I have to find something…

I thought maybe I could use this season as a jump start to a new mental space where I give myself a bit of a break.  In my last post I wrote about how I don’t care what other people think of me anymore, and that’s true.  But I am still pretty harsh in what I think of myself.

I hold myself to ridiculous standards.  Clearly not when it comes to keeping my house clean or washing my hair more than once a week.  But I ruthlessly criticize myself for not being able to truly appreciate every moment with my kids while they are little and adorable, I mean I should be grateful that I am alive to be a part of their childhoods and frustrated at myself when I don’t feel that loving glow every second of the day.  I project forward to when they are pain-in-the ass teenagers and I have turned into Beverly Goldberg and am clinging to them demanding “snuggies” and that I will regret that I didn’t cherish this time more. And if I slip and snap at one of the kids when I have asked them the same f-ing question 37 times and they still refuse to answer me, or if I yell “I don’t care, just figure it out” through the bathroom door while two three year olds are screaming that they need me, I beat myself up pretty badly about that later.

And it’s funny because my absolute favorite about being a Christian (yes, I’m out of the closet now, I love me some Jesus) is the concept of Grace.  That you do nothing to earn it and there is no way to loose it. That is some pretty amazing stuff. Haha Amazing Grace, I totally wrote that not intending the pun but I’m gonna leave it here anyway.

And I am really good, like really good, at giving Grace.  I don’t just give second or third, but 27th chances.  I am able to look at someone who is being a total asshole and give him the benefit of the doubt that maybe his dog just died or he has some chronic pain that is not visible to the eye but eating away at his patience.  Because I have been there, I have been someone who fell to pieces when my husband asked me to make a reservation because “it was all just too much!!!!”  So I am very generous in my ability to forgive.

Except when it comes to me.  I hold grudges against myself for things I did in the third grade.  I’m not kidding.  I obsess over the hurtful comments I made years ago that the person I hurt probably doesn’t even remember. These are things that I would easily forgive in another person, but refuse to do so for myself.

So that’s what I’m giving up this Lent.  I am giving up (or going to try to give up) judging myself so harshly.  I mean, I’m pretty great.  I made it through the past four years when life kept dealing me blow after blow.  And I survived.  And I thrived.  I still have hope, and optimism, and more faith than I ever did.  And grace.  So I am going to start using a little bit of that on myself.

My “Bad” Day

It could have been a bad day. For most people it would probably qualify in the seriously crappy day category…I even planned it that way.

See, I knew that I needed to have a wart frozen off/dug out at the dermatologist, and a filling, and an iron infusion before the end of the year. The iron infusions involve several hours, blood work, an iv, and inevitable abdominal cramping for the rest of the day- I know because I get them every month.

So I just decided eff it, I’m gonna have my supernanny take the kids and plan for a crap-tastic day of doctors and dentists and generally unpleasant and painful procedures.

I figured that if I planned for the day to be terrible then I wouldn’t be disappointed when it turned out that way.

And yes- the wart thing hurt, and the doctor had to apologize for having to dig so deep in my skin. But she was really nice about it!

And at the dentist he decided the cavity was shallow enough that he wouldn’t numb me. We discovered he was wrong when he touched a nerve with the drill and my whole body jumped. But he numbed me up after that and I got through it fine.

And that’s all just life. Those are normal people problems.

Because I planned for it, I wasn’t annoyed by all the stuff I knew was going to suck about the day. So I had space to not loose my mind when my three and a half year old decided it would be a great day to cut her own bangs and spread her hair out all over the floor.

And I was actually in a fantastic mood all day. When the nurse told me I didn’t have to do blood work this time, I almost high-fived her. It’s a good thing I stopped myself because as anyone who knows me well can attest, I am an extremely awkward high-fiver.

And then I sat down to get my iron and struck up a conversation with the woman getting chemo next to me. She asked how often I am in there and I told her “once a month, probably forever.” She said that she was just getting maintenance too- because she was past the point of a cure. I told her how sorry I was and she said, “You just decide to keep on going.”

Yep. That’s it exactly. So many people have asked me how I got through the past few years with everything I have been through. And I usually make some sort of joke abut Xanax. But she summed it up perfectly, you just decide to keep on going. And then you do. You do whatever you can that day, and then the next day, and then the next. She made me realize how lucky I truly am that my story is on an upswing. We laughed and cried together and I left there feeling grateful. For Life.

For this messy, painful, beautiful, awesome, whirlwind that is my life.

And if yesterday was what “bad” looks like to me now, then bring it on. Because I’ve learned something about myself; that no matter what happens, every day I will make that choice to keep on going.

Mitzvah Therapy

Yesterday was an amazing day.  A Hallelujah, sing in the car, have a super-cool dance party with the hubs and kids sort of a day.  Yesterday I got some incredible news- my Osteoporosis has not only stopped getting worse, it may actually be reversing itself!!!!  I also had a great meeting with the wonderful folks at Cancer Support Community of North Texas.  The work they do for people affected by and living with cancer is unbelievable.  If you or anyone you know are dealing with cancer, please check them out as a resource.  They have support groups, informational meetings, kid’s nights, social workers, counselors- you name it, all FREE to members (but that actually cost a lot of money, so if you have some extra cash laying around you might want to throw it their way!)

At this meeting I got invaluable ideas and support for Mommies In Need, and I also came away from it with my favorite new term: “Mitzvah Therapy”

When I explained the whole backstory of Mommies In Need coming from my struggles and said that it has really been a huge source of comfort and joy to me in my recovery, one of the women in the meeting said that was an example of Mitzvah Therapy.  In its casual usage a “Mitzvah” is an act of kindness that you do for a person without expecting anything in return.

When I got home I googled the term and found this video:

http://storiesofchangeandpossibility.com/tag/mitzvah-therapy/

The story told here made me cry in it’s simplicity and beauty.  In it, Bill O’Hanlon describes what the late Dr. Sol Gordon coined “Mitzvah Therapy” and tells a lovely story about how it changed one woman’s life.  Now, I am all for psychotherapy- I’m not canceling those appointments anytime soon!  But as he says in the video, psychotherapy is all about you and Mitzvah Therapy is all about giving.

And I have a confession to make here, I have kind of become a giving junkie.  Seriously, I am always looking around for my next fix.  I actually keep some of it a secret (I guess until now) from my family because it seems a little crazy- well, crazier than usual.  If I have extra cash I pay for the parking of the person behind me whenever I leave the hospital lot- someone did that for me once and it made me smile on a not-so-good diagnosis day!  I have blessing bags in my car with protein bars, tissues, soap, etc. to give to any homeless people I see.  We did a diaper drive for the twins birthday and I got a huge high when the woman picking up the donations was so excited about everything she was loading in the car to distribute to underserved families.  I even carry around $5 gift cards to Starbucks that I sometimes give to random moms when I see them carting 3 kids through Target or dealing with a toddler having a stage 5 meltdown.  I hand it over with just a few words, “One mom to another, you probably need to treat yourself” and walk away.

I tell you this, but please don’t go on about how awesome I am or anything like that.  I mean, I’m pretty cool, don’t get me wrong, but I am not writing this for compliments!  See for me, those acts are actually pretty selfish, because I get such a huge boost of happiness and even self-confidence from doing those things.  When I walk away from that mom who has a little light of hope in her eyes that someone gets what she is going through, I feel pretty darn good about myself.  And that feeling, really helps me get through the day sometimes.  I have been forced to deal with a lot in the past few years- see A Brief Timeline of Crazy.  And there are days when I can get pretty depressed or anxious or just plain mad that all of those crazy and terrible things happened to me.

And I need my psychotherapy to work on the root of that depression and anxiety and anger, it’s not something that just goes away when you ignore it- believe me, I tried that and wound up with panic attacks (which I really don’t recommend!) But for me, when I get in a dark place, being alone and thinking about myself is a surefire way to go even darker.  And the quickest fix? A little Mitzvah Therapy!

So maybe I have taken this to an extreme by starting my own non-profit, but seriously, try to insert a little random kindness into the days you are feeling like crap.  It’s hard to be grumpy when you are giving joy to someone else.  Even just holding the door open for someone with a genuine smile on your face, rather than grudgingly doing it with no eye contact can brighten a person’s day just a bit.

Ugh, sorry if this whole post is a little Pollyanna, but I am coasting on a major high right now.  Mommies In Need has officially accepted TWO new families to help!  I am overwhelmed by the amount of support that this cause has gotten in such a short amount of time.  Don’t get me wrong, my heart hurts for the women we are helping.  I have been in situations like theirs and I know the kind of rough road they are going down.  But I am filled with joy knowing that Mommies In Need is taking a huge burden off of them by making sure their children are well taken care of.

If you feel like doing a little Mitzvah Therapy of your own today, please consider donating to our campaign to support these Mommies in their journeys through cancer.

The kids of the first Mommies In Need family.  Knowing we helped them have stability while their mom was sick is the ultimate Mitzvah Therapy!
The kids of the first Mommies In Need family. Knowing we helped them have stability while their mom was sick is the ultimate Mitzvah Therapy!

Lucky to be Annoyed

I’m in the middle of a 24 hour urine test today for my Osteoporosis. It will help give a progress report to my Mineral Metabolism specialist about how much calcium I am losing and what course of treatment we should pursue.  I’m hoping for a “just keep doing what we’re doing” response since all of the Osteoporosis drugs have some pretty serious side effects, especially for someone as young as me.  (Thank you Prednisone for giving me Grandma bones at 35!)

And this test is super annoying, because I have to collect all my urine for 24 hours and store it in a jar in my fridge.  Then I have to bring it into the clinic tomorrow after fasting for 12 hours (that means no coffee in the morning- I may be a danger on the roads) and get huge amounts of bloodwork.  So if you are someone like me who pees every 5 seconds, you basically can’t leave the house unless you want to carry a little mini pee jar around in your purse.  Plus my in-laws are in town so I had to be all “please don’t touch the orange jug in the fridge, it’s full of pee.”

Flopsy has pink eye and ANOTHER ear infection.  My Uncle, who usually takes our dog to play with his during the days, has been recovering from surgery- so my dog’s constant barking is driving me up the proverbial wall. My to-do list seems to be multiplying on it’s own and no matter how many things I cross off, it just keeps getting longer.  And we are transitioning the twins to big girl beds, which means they are crappy sleepers again and it takes roughly 800 hours to get them to go to sleep each night.

I was pouring my pee into a jar for the fifth time today and feeling extremely annoyed when I stopped and laughed and realized for a moment just how lucky I am.  I am so happy to be at a place in my recovery when my treatments, symptoms, and diagnostic tests are merely annoying to me.  This time last year I barely noticed when I had to do the urine test because I was so sick and in so much pain that I wasn’t leaving the house anyway.  And I wasn’t frustrated with my dog or my kids or my to-do list because I was completely incapable of doing anything.  I was in survival mode: trying to manage my pain, discomfort, and depression just to get through the day.

Even though I still have rough days where I am clutching my heating pad with wretched cramps for 6 hours because I accidentally ate a vegetable, if I step back and look at it I am truly grateful.  Because now I am in a place when every day is not full of pain anymore.  Life is not always easy, but it is livable.  And I have hope that it will continue getting better.  I get extremely frustrated with setbacks in my health, and even though I understand rationally that I have to be patient with my body because healing (especially from as much trauma as I have been through) is not a linear process, I don’t wanna.  I am so over being sick and just want to be “normal” again.  I am working on being kind to myself and coming to terms with the fact that like it or not I am missing 3 major organs now and my body will never function the way it did before I got sick.  Fundamentally I don’t trust my body anymore because so much has gone wrong with it in such a short time. 

But I am working on that too.  I am just starting to have a glimmer of confidence that eventually I will figure out this body and become comfortable  with my new normal.  It might not be on my timeline but I think it will eventually happen, and that’s a far cry from the days when I could not see any sign that I would ever feel good again. 

I have a friend who was recently diagnosed with breast cancer and my friend Annie has just finished her chemo and is in the middle of that intense healing process.  We are also opening up for applications for a new family to help with Mommies In Need.  So I am hearing from people who are in that really dark and difficult place where I was hanging out a year ago.  And my heart hurts for them.  Because being really sick sucks.  And it sucks for a long time.  But if I can do anything for the people that are in that place of intense suffering right now, maybe it is to be a little shred of hope that eventually it will get better.   

I am so grateful to be able to get down on the floor to play with my kids again. And I make an excellent sticker model!!
I am so grateful to be able to get down on the floor to play with my kids again. And I make an excellent sticker model!!

Maybe one day they will find themselves being annoyed by little daily tasks and laugh with joy because they realize that they are actually able to do those tasks again.  They will realize that annoyance is actually a blessing because it means they are past the point where being sick consumed their entire lives. That perhaps everything they went through lead them to a life they never thought they would have but are profoundly grateful for.

Now if you will excuse me I have to go pee into a jar.

Mommies In Need Update- Spoiler Alert It’s A Good One!

I just want to take a quick moment to say I am truly astounded by the outpouring of support I have gotten since my last blog post about starting Mommies In Need.  In a little over a week, we have more than doubled our original goal for helping Annie and her family!!!

I was not sure if I could really do this thing, or if I was just being an (even more) insane person.  But you guys are backing me up and giving me the courage to keep going.  The amount of people who have shared the link, donated, or offered to help in some other way is incredible.  I think it has spoken to a real need in society. I have heard over and over again when I explain the idea to people, “I never really thought about it, but I don’t know what my family would do if I got that sick.”  Mommies In Need is growing at the rate that it is because it offers a tangible and relatable service to people who are in an unthinkable situation.

So just to keep you in the loop here are just a few things that have actually happened in the last week:

We have the beginnings of the 501(c)(3) paperwork done.  This is an extremely tedious process but I am hoping to have at the very least the articles of incorporation submitted to the state by tomorrow.   Once that goes through, I can get the rest of the forms to the IRS in the next few weeks.

We have a Secretary and Treasurer for the Board.  We will be having board meetings and voting on measures and all sorts of official stuff!

We have a Mommies In Need bank account where all of your incredibly generous donations are going.  And by bank account, I mean real bank account, not a bag with a dollar sign on it under a loose floorboard.

We now have a PO Box.  Send us something!  I recommend a check made out to Mommies In Need, but you could also send Annie a letter or card of encouragement, a sonnet you write about how generally awesome I am, or whatever else you feel inspired to pass along.  Our new address is:  Mommies In Need, PO Box 601562 Dallas, Tx 75360.

And most importantly, we have raised enough money to fund a Nannie for Annie (sounds like a Dr. Seuss book) for over 2 months!!!  I am amazed and overwhelmed by the generosity and enthusiasm that everyone has shown.

So please continue to donate or have people send checks to our new address.  You can also send me an email at supercrazymommy@gmail.com if there is some other way you want to get involved or just want to be on the mailing list for any and all Mommies In Need info.

I am so excited that we are able to help Annie and hopefully many more mommies like her in the future.  Thank you to all of you for listening, supporting, and sharing! And for jumping on board this crazy train with me!

Jumping for joy!  I'm not currently on the Great Wall of China but you get the idea!
Jumping for joy! I’m not currently on the Great Wall of China but you get the idea!

I’m In To Hire- and You Should Be Too

Some of you may have heard of #ImInToHire.  For those of you who have no idea what I’m talking about you can click here.  Basically, Best Buddies is working on a program to get employers to pledge to hire people with intellectual and developmental disabilities (IDD.)  When I first heard of this I thought it sounded like a great idea, but now it has become a lot more important to me.  Why?

Because I made a new friend this weekend and her name is Annemarie and she is awesome and inspiring and an amazing writer.  And she has Down Syndrome.  I spent the whole day with her Saturday working on her speech for the Best Buddies Ambassador Program, where the Buddies learn public speaking so that they can help raise awareness for people with IDD by speaking at and attending events.  In essence to be an Ambassador for the program.  Hence the name…anyway…

I have written previously about another experience with Best Buddies that you can read here.  But today I want to really focus on just how much we as a society are missing when we don’t see all of the positive contributions that people with IDD can add to this world.  Part of the problem is that many of us don’t have any regular interactions with people like Annemarie.  Because 85% of people with developmental disabilities do not have a paid community job.  Let’s think about that for a moment.  85%.  And that is not because they are lazy or not looking.  I spoke to one very smart and articulate man who has been actively searching for a job for over a year.

Do you know what Annemarie said was one of her biggest goals in life?  Independence.  She wants to be able to be a part of the community just like the rest of us.  Who provides a service and gets paid for her work.  But it’s difficult, because when a person with Down Syndrome or Autism or Cerebral Palsy goes in for an interview, they are competing against people who don’t have a disability.  Even if they are completely capable of doing that job, they are at an automatic disadvantage.  Maybe their speech is a little difficult to understand, or they don’t make eye contact the way others do, or they just look different.  And the person doing the interview thinks, well, it would just be easier to hire the person without an IDD.  It’s not automatic for most people, we need to make an active effort at inclusion.

That is what is so cool about the I’m In To Hire program.  Employers pledge to try and find job opportunities that would be appropriate for individuals with IDD.  One of the speeches I heard on Saturday was from a young man who works at a gym.  He said that he greets people and folds towels and that every day he feels proud because his friends can see him working.  He is really happy to have that job, it makes him feel accepted and like he is a full member of the community.  Helping someone find self confidence and pride in themselves is an amazing thing.

That gym employer could have chosen to hire a college student without IDD who maybe was doing this for a side job and didn’t really care too much about it.  But instead they hired an intelligent, friendly, outgoing young man who happens to have a disability.  And that job gives meaning to his life in a very profound way.

So if you have a company, maybe spend a minute thinking about what positions you have that would be well suited to someone with IDD.  And then perhaps reach out to an organization like Best Buddies and ask them to recommend a few candidates who are looking for jobs in your area and would be a good fit for your needs. Or talk to your HR department and see if you can help facilitate the program at your workplace.

People with IDD are just that, people.  With individual hopes and dreams, and so much to offer to this world.  Please join with me in trying to help make our society one that welcomes them and their unique abilities and enthusiasm. And Annemarie, when you graduate if you are looking for a job, I’m hoping Mommies In Need will grow to the point that I can bring you or someone like you on to help.  Because I can say loudly and with great pride that I’m In To Hire!

Me and my new Buddy Annemarie!
Me and my new Buddy Annemarie!

My Why

I have said on this blog before that I no longer believe that everything happens for a reason.  Some of you may have heard me articulate this as “I don’t believe that God gives us the bad stuff.”  I just can’t wrap my head around a world where the difficult path that I have been down was chosen for me, that I have suffered so much because I am uniquely strong enough to bear it.  I think we have a lot more choice than that, and sometimes shit just happens.  And it’s not fair, and it’s not because I deserved it, or because I needed it to grow as a person.  I am just someone who for a long time couldn’t catch a break.  And I went through a long string of crazy health problems and am just now coming out the other side of it.

What I do believe is that people who are dealt a rough hand have the option to bet on it anyway.  We don’t always have the ability to change the circumstances that come into our lives, but we can choose to keep going, to get out of bed every day (or most days) and hope for the best.  And if we are lucky, we can find a way to turn those things into something great.  And sometimes God, or The Universe, or Completely Random Chance (whatever you want to name it that makes sense to you) lets things line up in a way that all that crap makes sense and has a purpose and can be turned into something beautiful.

This is more philosophical than I usually get here, but I need to explain to everyone why all of the sudden I have become (even more of) a crazy person and decided to take on a huge project when I am not quite fully functional myself.  I started a charity.  Like yesterday.  With no real plan in place, just flying by the seat of my yoga pants and praying that it turns out ok.

I have actually been thinking about starting this since I first got sick.  Because I always knew how fortunate I was that with the help of our families we could afford to hire a nanny to get me through the worst of it.  And I found Wonder J– as I have written before she has been amazing for our family.  I always knew that I could focus on taking care of myself and be there for my girls as much as possible, but have confidence that if I hit a wall and had to go lay down, or got dizzy, or was about to poop my pants (sorry for the TMI but we are talking colon removal here!) Flopsy and Curly were in good hands.   I can’t even begin to describe how much I needed this help, I am not exaggerating when I say I am not sure I could have gotten through the last few years without a nanny.  Cause stay at home mommies don’t get sick days.  Ever.  Not if you have a cold and not if you have cancer.

I never thought I would get so sick I couldn't even lift ONE baby!
I never thought I would get so sick I couldn’t even lift ONE baby!

Stay at home mommies of young kids don’t have disability insurance and most of us don’t have any sort of childcare set up.  Maybe a MDO or a couple of hours of babysitting here and there.  Not enough to go to seven doctor’s appointments a week.  Or be in the hospital for 20 days in a year.  Or go through invasive treatments and surgeries that leave you feeling like warmed-up death.  And if you can’t afford to hire help than at best you have tons of different people volunteering a few hours here and there, having to explain your kids schedule to every person that helps you, feeling guilty that there is no consistency in the kids lives, and at worst have to miss vital appointments or treatments because you can’t find someone to watch your kid with strep.  Who, by the way, you shouldn’t even be near because you have a severely compromised immune system.  Not a great situation, huh?

So when I heard that my friend Annie (who has two darling kids and not-so-cute colon cancer) was back in the hospital following surgical complications, and did not have and could not afford full time help to get her through the rest of her surgeries and chemo, I knew I HAD to do something.  See, a few years ago, I would have heard her story and thought, “Aww that sucks, she’s so nice, this is going to be really hard for her.”  But now I hear that story and say “NO!!! You can’t do this by yourself, if you can’t get help then I will get it for you.”  And then the real miracle happened.  Our previous nanny (who left only because she got a full time job, we loved her) texted me and said she was looking for a new family.  And I thought, “Hello, all I have to do is put these two together, raise a bunch of money, and I’m off.”  So Mommies In Need was born.

But can’t I just raise money for another charity that does this?  Nope.  If there is one, I couldn’t find it.  And my vision is very specific.  I want to not only fund the nannies for sick moms, but also provide them with someone who is vetted, background checked, and stamped with the SuperCrazy Mommy seal of approval (as in I have/would leave my own kids with them.)  Because when you are in pain is not the time to have to do interviews and reference checks and try to find the right person.  My long term goal is that if I get a call for a mommy who just got a diagnosis I can move fast and have a reliable nanny to her in a few days.

I know that there is a daunting amount of work ahead of me, I just opened the new bank account and am starting all the 501(c)(3) paperwork, and I actually do have “Grand Plans” for the future.  But already I am amazed at the people who have stepped forward and said they think this is important and want to be a part of it.   I am feeling grateful that everything came together at the right time for me to get off my ass and actually start this thing.  So is it crazy?  Yes.  Is it Super Crazy? Yes!  But I am doing this because I feel like I finally found the good that I can pull out of all the shit I have been through.  This non-profit is my silver lining, my reason for all my difficulties.  I actually have an answer now to the question that plagued me everytime I got hit with another diagnosis or huge crisis.

In Mommies In Need I found my “Why?”

 

*If this blog has ever spoken to you, or made you laugh, or given your day a little lift, please consider donating to MommiesInNeed.  If you can’t donate, please check out the fundraising page and share it on any media platform you can.  Plus as you will see on the campaign page, if you donate $100 or more I’ll Be Your Best Friend! You can also like me on Facebook for more updates on this project.

 

A Moment of Gratitude

I rant a little (or a lot) on this blog.  I talk about the crazy things that are going on in my life and how difficult it has been to deal with it all.  I have talked about my anxiety, my cancer, my miscarriage, my disordered eating, and my surgeries, in addition to the general insanity of raising twin toddlers.  If you want to get caught up quickly you can visit A Brief Timeline of Crazy.  And while I have just begun mining the things I want to vent about and get off my chest, I feel the need to pause for a minute and say that despite all of that I never forget that I have also been amazingly blessed.  I can’t say anymore that I believe that “everything happens for a reason,” but I do believe that if you try, you can take the bad that happens to you and make something beautiful out of it.  For me that something is a new appreciation of the good things in my life, as well as the ability to be there for others who are going through a difficult time.  So here is a list of 10 things for which I will be eternally grateful:

  1. Flopsy and Curly- more than anything else they have been my reason for getting out of bed and my motivation to keep going no matter how crappy I felt.  They are awesome and hilarious and they love tutus, purple, and sparkly things (just like mommy!)  They were the worst sleeping babies in the history of the world, but I am incredibly thankful that they are relatively even-tempered toddlers.  They play really well with each other about 75% of the time, which is pretty good for 2 1/2 and every single day they do something that stops me in my tracks because it is so cute, or sweet, or smart, or funny and I think, “I am the luckiest person in the world that I get to spend my days with these two amazing little people.”  Like when Curly put her hand on my cheek and looked into my eyes and said, “You’re my sweet girl.”  Or when Curly was getting frustrated with putting on her own shoes and Flopsy said, “I’ll help you” and then put Curly’s shoes on for her.  Or yesterday, when they were playing on the swings and taking turns sitting on each other’s lap and swinging together.  I seriously almost had a stroke from cuteness.
  2. Sebastian- My husband is incredible.  Truly, it makes me mad sometimes because I can’t even complain about him when I get together with a bunch of other moms.  He helps around the house, gets up in the middle of the night with the kids when I’m not feeling well, is a loving and devoted dad, encourages me to take “me” time or go out with friends when I can, and managed to pick up all the extra work I could not do this past year when I was really sick.    He also has to put up with much more of my crazy than anyone else and somehow still loves me.  The most annoying thing about him is that he is almost always right.  Please don’t tell him I said that!
  3. My Family- By this I mean my parents, siblings, grandparents, and also Sebastian’s family who have been wonderful through all of our turmoil.  I seriously don’t know how we would have survived the past few years without the family support we have had.  They have gathered around us like a giant protective hugging net that has kept us from falling- yes a hugging net, I don’t know what that is either but I’m sticking with it.
  4. My Friends- Even those who I have not talked to on a regular basis in the past years have come out of the woodwork to support me.  Especially since I started this blog and actually let people in to the realities of what was going on with my life, I have been showered with love from my friends.
  5. Wonder J (Our Nanny)- I have a whole post dedicated to her, but knowing that my kids are in such good hands has taken a ton of mommy guilt off my shoulders!
  6. Dr. Awesome (My Therapist)- she helps me keep the crazy at bay and gives me Xanax.  ‘Nuff Said.
  7. That I Had Twins- sure, having 2 babies at once was front loaded with difficulty, but when I got the scary news that my uterus had been removed to save my life, I was devastated, but not nearly as much as I would have been if I hadn’t had two darling babies to go home to.  I know that my family is perfect and complete.  Plus, I don’t get a period anymore- can’t say that I miss that!
  8. The Body Scan that Found my Cancer- it was horrible timing, but I do realize how lucky I am that a random scan before surgery found that lump and I was able to have it removed long before I ever showed symptoms.  Otherwise, that little ball of yuck could have kept growing for a long time and put me in a much worse situation.
  9. Our Financial Security- I am immensely grateful that we had good insurance and the ability to get through these years without the crippling debt that chronic illness and multiple surgeries can bring to a family.  Sure, I would much rather have taken an awesome vacation than spend 20 days in the hospital this year, but we didn’t have to choose between paying for my medicines and paying for food.  I do realize how very lucky I am for that.
  10. This Blog- I only go to therapy once a week, but I can write here whenever I want!  It has given me a sense of purpose, a way to express myself, and an outlet for the whirling dervish of thoughts that are constantly going in my head.  It has allowed me to be honest in a way I have never been before.  I am very good at putting up a front of being fine when I am actually far from it. It has been so helpful and freeing to me to have a place to let down my guard, to show the mess I have going on inside, and to advertise to the world how NOT perfect I am.

I started thinking that I needed to write this because I have several friends in crisis right now, and I constantly get people saying to me, “Well, I guess I shouldn’t complain.  It’s not as bad as what you’ve been through.”  I would like to state right now for the record- that is total BS.  If you are dealing with pain, difficulty, or trouble in your life, that is yours and you have every right to be upset about it.  A dear friend of mine who has been through cancer, the loss of her mom, and many other struggles said something to me that I will never forget.  I was saying essentially the same thing to her, that I shouldn’t complain because it could be much worse.  And she said, “If that helps you right now, then use it.  If it doesn’t, don’t!”  I love that thought.  Sometimes you need to wallow in your grief or pain or difficulty to get through it.  And sometimes you need to look at the big picture of the world and be amazed that in the scheme of things your life is actually pretty good.

Right now I feel the need to show my gratitude to the universe that let me get through this horrible time in my life with myself missing a few organs and a little bit of sanity, but mostly intact.  For the first time in a very long time I feel hope.  And that is so beautiful.  I want to say to those out there who are in the midst of a dip in your life when you feel like things will never get better… I have been there.  Like really there, in a pit, thinking that I would never be able to climb out.  And while I am not at the end of my journey of healing (so don’t be surprised when I have ranting posts later about Ulcerative Colitis, or surgeries, or other craziness) I can finally see that glimmer that things are going to be OK.  It is crazy how that snuck up on me.  I didn’t notice I was doing so much better until one day I realized that I could breathe a little easier, that I wasn’t in a constant state of tension waiting for the next of like 40,000 shoes to drop.  And for that spark of hope I am completely awash in gratitude.  Thank you to everyone reading, commenting on, and messaging me about this blog.  You have all helped me to find that spark, thanks for being part of my therapy.  But don’t worry Dr. Awesome, I still need to come to you for my Xanax!

How can I not be grateful for getting to see this?!
How can I not be grateful for getting to see this?!