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How I Approach Life Differently Since Parenting a Medically Complex Child

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The past year has been one of reflection, especially as a parent to a medically complex child. I often think about where we were a year ago, two years ago, three years ago, etc. A year ago we were celebrating a holiday season without hospitalizations. Two years ago we had just gotten out of the hospital and we were scheduling a whole batch of procedures (which landed us in the hospital for a few days). Three years ago we had the first inklings that something “might be up” with the baby I was carrying, and I was getting ready to undergo a whole battery of tests (after which they told me everything was fine).

While reflecting on the journey our family has been on is useful and healing, it’s not the whole picture for me. I have also been reflecting on how I have changed as a person. I often think about how parenthood has changed me, and how being a parent to a child with a disability has truly altered my perspective on many things.

1. I am less judgmental of other parents.

Before becoming a parent, my list of “I would never do that” was long. I had strong views on how to feed kids, how to handle sleep, and how to deal with other behavioral issues. Yes, I chuckle at this now. I find it funny too. I have spent unreasonable amounts of money on food because she seemed to like them one time, only to have her never eat it again.  While I was (and still kind of am) a believer in the “cry it out” method for sleep training, I still rock Lyra to sleep. I am much more willing to recognize that sometimes you have to meet your child where they are. Sometimes sticking to a certain method will do more harm than good for a certain child.

Luckily we haven’t had too many challenges when it comes to behavior, but I have met so many parents where that is their primary obstacle. These are good, well-meaning, hard-working, loving, tough, parents. They do everything they can to prevent meltdowns in public. They have worked with professionals and are doing their best. Sometimes the parents might not be at their best in that exact moment, but no one is perfect every minute of the day. Before Lyra, I would have judged the parents when a child is acting out. Now, I see the fear (of judgment), exasperation, frustration, and sometimes sadness in their eyes. I feel compassion for them and for their child now, and just want to give them a hug.

2. I’m tougher.

Before having Lyra, I was a bit of a “pushover” and often called a drama queen. On day 10 of Lyra’s life, I learned how to “push back.” Watching your newborn turn blue because no one would listen to you will do that. I learned the difference between being a drama queen and being an advocate. I also learned that when my life was truly in crisis, I was able to calmly and rationally make very tough decisions very quickly. Sure, I fell apart from time to time. All of my close friends and family members have received tearful phone calls at some point. But when it mattered, I was calm. I knew that freaking out and melting down wouldn’t help anyone, especially my daughter.

3. Sometimes, I am less tolerant.

Now, I am not sure this is a positive quality, but it’s an honest assessment. I often say that since having Lyra, I need people either “step up, or step out.” I’m OK with whatever people have decided, but I don’t have time to deal with people who can’t step up, especially since my child has a disability. While I have always had little patience with incompetence, I now have zero patience for it. If you can’t do your job, or if you can’t help me, I need to move on to someone who can. In regards to friendships, I happily make time for those who make time for me, even if it is just a simple text. However, if you don’t have time, that’s fine. I feel little loss for the people who have drifted away since having my daughter. For those who have embraced us and our journey, your presence in our lives has made it so much richer and we are so grateful.

I also don’t have time for people who don’t try to understand Lyra and the journey that we are on. Anyone who reads what I write, or knows me, understands that I try to educate and explain things all of the time. I am open to questions and I happily answer them. However, when people don’t take the time to listen to my explanations, or simply refuse to accept that Lyra will never be an “average kid,” I don’t have the time for that. If you can’t enjoy her for who she is, if you can’t get over the fact that she has mental and physical disabilities, if you can’t accept that no leap of science will ever “fix” her, I in turn, don’t have time or energy for you.

4. I have learned where to look for joy.

My whole life I felt a little unsettled. I was always looking for a time or place where I felt, “this is perfect and I am truly happy.” I didn’t always know where to look for joy in my life. This is probably part of the reason why I moved so frequently. I always thought somewhere else might be better. However, I have learned that joy is a little spark that flares brightly, like a firefly. Little moments stand out the most, and if you focus on it, it will be the thing you carry with you the longest. If you aren’t looking for it, you’ll miss it. It will fly right past you.

Lyra’s first year was really tough, but if you ask me what I remember most about that year, the negative things aren’t what I will state first. The little moments of joy and laughter are what always stand out to me. It’s Lyra snuggled up with her grandma, or the look on her aunt’s face the first time she visited. It’s laughing with family over a beer they snuck into the hospital room, or watching Lyra run around the halls of the 8th floor in her new walker. Even though life was harder than it has ever been, I remember so many little moments of joy. While this life is not the one I had initially envisioned as a parent, it’s a good life.

5. I am learning to embrace who I am physically.

I have never been all that comfortable in my own skin. I always wanted to be thinner, taller and prettier. I have spent decades hating my appearance when I looked in the mirror or looked at pictures of myself. Between sleep deprivation, doctor’s appointments, therapy appointments, and just managing Lyra’s care, consistency in working out and self-care has been a struggle.

Six months ago where I decided I didn’t have the energy to hate myself anymore. I am very overweight. This shift in how I view and value myself is import for me, my daughter, and other young women around me. The last thing I want is for any of them to look in the mirror, and make a judgment about their worth as a person based on their reflection. I don’t want Lyra to ever be ashamed of her feeding tube button or her surgery scars. Those things saved her life and made her strong. They are not “something wrong;” they gave her an opportunity.

I knew becoming a parent would change me. I had no idea how dramatic that change would be. Have all of the changes been positive? Maybe not. But I feel the positive changes far outweigh the negative ones.

Parenthood is a long road and epic journey for all of us, and I don’t think it ever goes to plan. But without a doubt, it’s worth it.

This story originally appeared on [Learning to Thrive]

Originally published: August 30, 2018
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