Monthly Archives: September 2016

Our Anniversary 

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On this day three years ago I married my husband for the second and the third time. At that point I thought I had a true partner and team mate in life.

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I knew nothing.

I knew nothing of the quality of man I had truly married. At our first anniversary I was sick as a dog with morning sickness. He would go to the grocery store almost every day in the hopes of finding something I might keep down.

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We spent our first anniversary in Mexico

Once our daughter was born, the shit hit the fan and he and I were repeatedly faced with making stressful medical decision after stressful medical decision.   We always made them together, even if we didn’t always agree at first. Every option sucked, to be frank, but it was a discussion. In the end we both stood behind each and every decision we made as a team.

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Lyra in the NICU at Children’s National

By our second anniversary we had moved states. Our daughter had just had a major surgery and very stressful hospitalization (yes, some are more stressful than others), and he was now the sole breadwinner. Things were still rough with our baby girls, but he stood next me the whole time. And again, we problem solved together.

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So here we are, at our third anniversary. Things are much better. Lyra is more stable and learning new skills almost daily. Her little personality has exploded into a huge personality. And there is my husband, enjoying every second of it. He is still the sole breadwinner and works East Coast hours while living a Mountain Standard life. After long days he takes one on one time with Lyra to give me a break. And at night, when she is up, I always tell him to go back to sleep, but I know he doesn’t. He listens to see if I need help. He loves doing bath time and gets her dressed for bed most nights. He insists on being the one to brush her hair and would rock her to sleep if she would let him.

He is my partner in every way. Our family would be missing a key piece without him.

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What to do at 2 am

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As my high school biology teacher used to put it: Adapt, Migrate, or Die…. I am am choosing to adapt.

For those of you who follow me on Facebook, you know that the whole sleeping thing has not been going well for awhile now. I posted about this not long ago, and since then things have not improved.  I think it has been about 2 months of broken sleep. Now, not every night has been a bad night.  I think I normally have about 5-6 “bad” nights a week. The thing is, they have become so frequent that they really have become my new normal and I have learned to adapt. Before I go into the crazy stuff that I do at 2 am, let me talk about what I have learned:

  • Going in and patting her back, or trying to rock her back to sleep will only make me really frustrated. She is awake and playing. Normally with her feet. No amount of patting or rocking is going to make her go to sleep faster.  It’s better if I just watch her on the monitor.
  • SLEEP IN!!!! After one of these nights she typically sleeps in.  Therefore, so do I. I just prep everything to start her daytime feed and Mark starts it when he gets up to work.
  • Stay busy. I have monitor her on our video monitor due to her tube when she is up. While I would love to lay down, it just ends up being crazy broken and light sleep that leaves me feeling more exhausted.
  • When emailing your child’s doctors at 2 am, take a deep breath and re-read things before hitting send. Luckily I haven’t embarrassed myself yet, but I have been quite desperate in a few emails.

So, what do I do when I am up for 2.5-4 hours in the middle of the night? Here is a list!

  • Exercise! – One of the first things to go from my daytime activities when all of this started was exercise. Given, I can’t get a good cardio workout it, but I can do some basic strength training. I have found this works better than coffee to wake me up.
  • Laundry – I fold laundry….. lots of laundry.  I can’t put it away in the middle of the night, but at least the first step it done.
  • Write in my blog – This is another activity I don’t normally have time for during daylight hours. If I did work on this during the day while she sat in her crib for hours, it would be child neglect. At night, it’s sleep training!
  • Work of projects – I work on my needlepoint, the family calendar and any other silent creative project.
  • Watch trashy tv shows (very quietly) – This is something I can’t do during the day and something my husband does NOT enjoy watching with me. So, I can do it in the middle of the night in peace.

Normally by the time I get through a couple of the activities on this list, Lyra has drifted back to sleep. There really isn’t anything else I can do to make her go back to sleep.  Trust me, I have been working on it with her doctors and therapists. So, I just have to adapt and hope she grows out of this phase soon. Until then, I have already exercised and written in my blog tonight.  I guess now it is time to fold laundry!

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We took this picture to send to a friend back in DC as a way to say “hi”. It’s one of my favorites.

Bad Moms…. Special Needs Edition

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For those of you who have not seen the recent movie “Bad Moms” you have two options: Stop reading this post and go see it, or just accept that some of it is going to be spoiled for you.

“Bad Moms” has a couple of themes:

  • Moms are very critical and judgy of other moms
  • Trying to appear to be the perfect mom is exhausting
  • It is impossible to be a perfect mom all of the time
  • Sometimes being a “bad” mom actually makes you a good one

One group of moms that was not portrayed in the movie was special needs moms.  This is NOT a criticism. I totally get it and would have made the same judgement call.

But here is a little secret from the special needs community…. we aren’t one group of super hero moms that band together. We are just as bad. I love the support groups that I am part of, but let me give some examples from the tubie community:

  • Regular Mom Type: Granola or Organic Mom = Tubie Translation: The Blended Diet Mom
    • This mom thinks that all formulas and meal replacements are EVIL and anyone who gives it to their child is a horrible parent. They frequently refer to formula as “poison” and can’t understand why anyone would ever give it to their child. They have never gone as far as to call it child abuse, but it wouldn’t surprise me if they secretly think it. Oh, also, they think that it solves all tubie problems.
      • Vomiting? BLENDED DIET
      • Constipation? BLENDED DIET
      • Diahhrea (we are a fun bunch)? BLENDED DIET
      • Child not sleeping? BLENDED DIET
      • Child sleeping too much (do really people experience this)? BLENDED DIET
    • Don’t get me wrong, I am 100% in favor of a blended diet for tube fed kids. It makes total sense to me and I even gave it a whirl with Lyra. For Lyra it didn’t work. She simply could not tolerate the volume necessary to get proper nutrition and fluids. These moms fail to recognize that, along with everything else, nothing work for every child. And if you call them out on that…. like I did this morning after only a few hours of sleep…. they get ugly. Oops.
  • Regular Mom Type: Breastfeeding Nazi = Tubie Translation: I Will Pump Until my Boobs are Inverted Mom
    • Now, I know that breastmilk is best…. in most cases. But these are moms who take it to the extreme. Like pumping for 18+ months extreme. They normally turn into Blended Diet Moms when their child turns 1 or their boobs shrivel and dry up. They too believe that formula is evil.
    • Now, I did pump for months. This meant that I never slept and, in the end, it turned out that my milk was part of the problem. Changing my diet wasn’t going to solve it either. To put it simply, formula saved Lyra’s life. Without it, she wouldn’t be here. I know many other kids like her.
  • Regular Mom Type: The Over Scheduler = Tubie Translation: 20 Appointments a Week Mom
    • Sometimes having a 5-10 appointments in a week in unavoidable. I wish I was exaggerating, but I am not. However, what I am talking about it the mom who runs their kid to every kind of therapy under the sun running herself, and probably her child, ragged. No joke, there are parents who 3-4 types of therapy with their kids multiple times a week. Therapy is hard work for our kiddos, even if it just looks like play. Sometimes you need balance. Right now Lyra has OT and PT once a week (that is 2 appointments). We were supposed to add speech, but with other life going on, we just can’t swing it right now. She is still really young and we have plenty of time. It’s okay.
  • Regular Mom: The Germaphobe = Tubie Translation: Nothing is Sterile Enough Mom
    • Understand, we do have to be much more careful with our kiddos. Many are medically fragile. However, these are the moms who could look at a surgical suite and question if it is clean enough. These moms use sterile water to make formula, fill the balloon in the button, and have every piece of sterilizing equipment you can buy commercially.
    • Now, we are careful with Lyra. Immunizations are required to be be around her. When cold and flu season hits, everyone has to have a flu shot. Getting something like the flu can have tragic consequences for our kid, so we have to be careful.  However, these moms take it too far.
  • Regular Mom: The Hypochondriac = Tubie Translation: ______________
    • There is no tubie mom equivalent for this one unfortunately. If we think something is wrong, something is wrong. We all have many “I told you so” stories when it comes to doctors doubting us.

All joking aside, what is the point of this? Even with special needs moms it’s okay to be a “bad” mom. We are not perfect and we are not a homogenous group. We give our kids formula, have them watch TV to get through a feed, use therapists as babysitters (PT is my lunch time), and sleep on the floor while our kiddos play around us. We take our kids to the park instead of to a therapy appointment. We cancel appointments for them so we can go to the dentist for the first time in 2 years. We do the best we can. We aren’t super heros and we aren’t perfect. Sometimes we are “bad moms”, and that is okay.

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Using the cousins as distractions so mommy can play on her phone

#BadMom