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Hitting a Rough Patch

Hitting a Rough Patch

I was keeping up with everything. The laundry was washed, blog posts were getting written, and the house was clean. Looking at my blog, you might think I vanished into thin air. Those who followed me regularly were left scratching their heads, “what happened in June 2017?” I never forgot about the blog, or all of my readers. In fact, I missed you dearly. It’s time to share what brought me to a place I couldn’t post for a year.

Our son was doing well. All of his medical appointments were three to six month follow ups and keeping up with the house just wasn’t a challenge any longer. We found a daycare about ten minutes away willing to take a child with a feeding tube for four hours three times a week. They reassured us they were comfortable running his tube feeds, they had done it before for other children, and that they were able to give him the attention he needed. We had a plan and it was as solid as such a plan could be. With that, I took a part time job close to home. The arrangement was I would be in the office while my son was in daycare and work from home for the rest. I couldn’t have asked for a more flexible work arrangement.

As often happens with children who haven’t been exposed to illness outside of their home, our son got sick. Each time he recovered we took him back to day care. I’ve never seen a kid catch so many colds. Some of the colds made him sniffle, others made him cough, and all of them gave him a fever. I started working from home a lot. It wasn’t ideal and it was significantly more stressful. I told myself to hang in there. This is normal, I thought, and once he worked his way through being exposed to so many other children he would settle in and enjoy day care.

Just like in early 2014 when this journey began, things did not work out as planned. Frankly, do they ever when kids with medical needs are involved? After six weeks of continuous illness, we took our son to the pediatrician for a variety of tests to make sure he hadn’t contracted something worse than five or six different rounds of the common cold. He hadn’t, and the pediatrician wasn’t certain why he didn’t feel well. A few months later we would receive a full explanation. I’ll spare you the waiting. This bout of illness kicked off an autoimmune reaction to our son’s blood platelets called Ideopathic Thrombocytic Purpora, or ITP for short. You know how people tell you that all those illnesses your children catch when they start school or daycare are just strengthening their immune system and won’t hurt them? The vast majority of the time this is absolutely true! This time we didn’t fall into the vast majority.

I held on for a few months through weekly hematology visits and lab draws. Other things came up also which I’ll cover in future posts. I resigned my job and went back to being a stay at home Mom. I’m glad I made the attempt. I hope to give it another go in the future if the opportunity presents itself. In the meantime, I’m making every effort to keep my feet under me this time around.

Keep an eye out for future posts to hear more about else what happened in the last year. I’m writing and publishing the story in pieces in case things come up along the way that prevent me from posting regularly.

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Mother’s Day

Mother’s Day

Mother’s Day is coming up. The normal hustle and bustle already started. Everyone’s clamoring to find the best gift. What the Mom in your life really needs isn’t more things (unless she’s asked for them of course, then please buy them for her)! She’ll appreciate the thought of these so much more.

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How to Decide if Working for Yourself is Right for You

How to Decide if Working for Yourself is Right for You

Working for yourself definitely sounds amazing. Everyone I’ve talked to about my new journey has thought the idea is wonderful. It’s easy to agree setting your own hours is a nice perk. I decide what projects to start, which projects to end, and what makes something “finished.” There are pros and cons to the whole process and some of the cons aren’t so obvious, so I thought it would be helpful to mention a few of each.

The benefits are most of what you hear people talk about when they say they work for or would like to work for themselves. The primary advantage is setting your own hours and deciding how much time to commit to each task. There’s no one telling you they need you to be available from 9 am to 5 pm. It’s likely you’ll find a lot of the things you need to do can be taken care of at 2 am just as well as 9 am. Your work can be accomplished in your pajamas… in front of a TV… with a glass of wine on the side table.

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Quitting My Job and Starting New

Quitting My Job and Starting New

I took a huge leap last week and put in my two weeks notice. My supervisor and I had both been putting off the decision hoping my son’s health would improve and I would be able to return to work. The kid has made tremendous progress but still falls short of where he would need to be to be placed in a childcare center with other kids his age.

I have mixed feelings about the whole thing. Keeping my job would have been my primary goal prior to having our son. Having a child didn’t change that significantly but there’s more to it than that. Now I have a child that REALLY needs me. It’s not a change of heart as much as it’s a change of circumstance. I didn’t know my son would have low muscle tone, a feeding tube, and feeding difficulties when we decided to have him. Now that I know, it simply doesn’t make sense to leave him unless there are no other alternatives.

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Big Plans for 2016

Big Plans for 2016

I recently dropped health, vision, and dental insurance at my job because they’re talking about switching me to a part time position. I asked them to wait until the end of the year and they were kind enough to do so, so I dropped insurance and my husband picked up insurance through his work during this year’s open season. In and of itself this wasn’t a big deal, but it’s put some things in motion that I wouldn’t have considered beforehand.

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A Special Bond

A Special Bond

Mothers frequently have a unique bond with their children. Something about being “Mom,” or “Dad” where he’s the primary caregiver, creates a connection with your child which cannot be broken. Mothers who adopt have it as well, as does anyone who serves as a child’s primary caregiver. The unbreakable tie between you and your child becomes stronger when your child has medical difficulties or special needs.

It’s not that these caregivers love their children any more than anyone else. It’s a strengthening which increases the sensitivity of both Mom and the child to the connection itself. It’s as if you can feel your child’s presence through a sixth sense. Their emotions are as clear as day. Personally, I frequently become tired when my son gets tired even if he shows no outward signs of fatigue. If I take a nap while he’s sleeping, I wake up around the same time he does.

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Our Family, Gov’t Style (Silly)

Our Family, Gov’t Style (Silly)

We have three people in our home, Mom (Me), Dad, and the Toddler. I’ve realized lately how much our family function resembles the structure of the U.S. Gov’t. Weird I know, but allow me to explain. The Toddler is most definitely President of our family. I’m Congress, both branches (I do what I want, or so I tell myself). Dad is the Supreme Court.

Mr. Toddler has the astounding ability to veto each and every rule I attempt to issue. He didn’t use this power quite so frequently, but as we reach the terrible twos it’s an almost constant battle. Thankfully, I can override vetos since I’m the ENTIRETY of Congress all wrapped into one (take that, partisan brinksmanship). I do have to be a little careful because the Toddler is not very fond of having his vetos overridden, and doing it too frequently results in even more vetos (meltdown, yikes). Don’t even get me started on executive orders.

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10 Signs You’re a Parent of a Tubie

Thought some of you moms (and dads) would enjoy this. Please share it with others that need a smile.

  1. Some sounds will wake you out of a dead sleep and will probably continue to do so for a long long time, if not the rest of your life. The high pitched beeping of a medical grade pump, for instance.
  2. When you have to give medication to a child without a feeding tube, or they have a belly full of gas. You won’t really wish they have a feeding tube, but you’ll think for at least a brief moment you would be able to help them a lot more if they did.
  3. The idea of dropping your child off at daycare is foreign to you. If you leave your child with anyone, they’ve gone through at least several days of training to make sure the caregiver isn’t going to cause an emergency room visit.
  4. You don’t wait more than an hour to be seen in the emergency room, because if it’s not something the doctor would be willing to call ahead for you can take care of it yourself at home.
  5. You already know what’s wrong with your child when you take them to the hospital, but the hospital is the only place that can do the things you need done fast enough to prevent your child from developing complications.
  6. It’s no longer surprising when someone implies you’re a bad parent. “Obvious,” solutions for your child’s complex medical problem seem to flow from everywhere. Clearly all of the therapists and specialists you’ve been seeing for years are incompetent and have no idea what they’re doing. They couldn’t have possibly suggested these, “obvious,” solutions when you first started seeing them. It’s not like your child’s medical professionals have experience with these types of problems or anything.
  7. You know immediately whether or not a doctor or resident has read your child’s chart as soon as they walk in the room. They’d look a lot more terrified if they had.
  8. If an elective admission has to be pushed from June to July you ask to be called if there are any cancellations in June or to take care of it in September.
  9. By the end of the year, you haven’t had to pay out of pocket for medical services for at least three months, and for some as many as eleven.
  10. People tell you they don’t think they could ever handle the things you’ve been through with your child’s medical problems. You look at them like they’re crazy, because you can’t imagine anyone doing anything differently. There’s way too much love in your heart for that little angel to let them suffer a minute more than necessary.

The Difficulties of Breastfeeding, a Special Needs Perspective

In honor of breastfeeding support week, I would like to share this with all of you. I wrote it a good while ago and decided to shelf it indefinitely. I think I’ve come to a place where I’m finally comfortable sharing. Enjoy!

Let me start by saying, a lot of people in the previous two generations do not understand breastfeeding. They bought in to the sales pitch that formula is better for your child. They believe bottles are better than the breast. The first time your child seems to struggle (even if only a little) being breastfed, the overwhelming response is that shoving a bottle of formula in their mouth will make everything better.

In order to balance this out, others have gone to the extreme to claim breastfeeding is best in all cases. There is never a situation where formula needs to be given, and if you give your child formula you’re denying them the chance to bond with you fully. The truth is in between, as is usually the case. There are situations where children need to be fed formulas. I didn’t know this when we started on our journey with our son, but there are formulas designed to help children with medical needs such as difficulty digesting and unknown allergies.

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Deal with Tomorrow When it Comes

Deal with Tomorrow When it Comes

It’s difficult, when your child has medical difficulties, not to worry about what tomorrow brings. Good days take turns with bad ones. On good days you worry a bad day is next. On bad days you worry tomorrow will be worse. When bad days chain together it feels like it’ll never end. Our minds are talented at focusing on the negative. Bringing your thoughts toward the positive can bring a significant improvement to how you feel about your life.

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