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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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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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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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Managing Your Stress, Part Three: New Normal

Getting settled into a new routine after a emergency or crisis is one of the hardest things I’ve had to handle as a mother of a special needs child. One of the tricky things about not having a diagnosis is that you never know if you’re looking at a new illness (virus, infection, etc.) or a new feature of the undiagnosed syndrome. It’s happened several times that the new problem has turned out to be another clue to the underlying syndrome and we’ve had to adjust what we’re doing to accommodate. So, that’s all well and good, but how do you do that?

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Managing Your Stress, Part One: Crisis vs. New Normal

This post is part of a three day series about how to handle stress when you’re bouncing back and forth between crisis and calm. I hope you find it helpful. I would love to hear about things YOU are doing to manage your stress.

There are two situations mothers of special needs children find themselves in more often than we would like to admit. The first is crisis situations. Many, although not all, of these land us in the hospital with our already struggling child. Once there, we fight fiercely to protect them from catching something even worse than what brought them in in the first place and engage in a constant power struggle with the hospital staff to let our children sleep. The second is what I call the, “new normal.” This frequently, though not always, comes after a crisis. Something has changed in our child’s condition and it’s changed the way that they and we have to live our lives. Identifying which of these two situations you’re in is key to properly handling your stress level.

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5 Ways I Cope with Being Home Most of the Time

5 Ways I Cope with Being Home Most of the Time

I’m not a loner. I like being around other people. I LOVE being around other people that are interested in what I have to say. I’m that person at work that volunteers to present. I enjoy networking and it’s not something I consider a chore. So, when I started home I wanted to go right back to the workplace. God had other things in mind for me, because I couldn’t go back. My son’s medical needs prevented me from leaving him with your run of the mill child care center.

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Learning to be a Stay at Home Mom, Part One: Acceptance

I didn’t plan to stay home with my son. I thought I would give birth, spend a couple weeks snuggling him, and then place him in a daycare close to my work where I could visit him during the day if I chose to do so. My husband and I had always evenly split the chores. With both of us working, we figured we could hire someone to come in and help once a week. It was a great plan for us and we were ready to execute it over a month before our son was even born.

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