taking care of me

Are there any other moms or dads out there that are consistently putting themselves last? I’ve noticed since having Henry over three years ago that like any parent I have less and less time for myself, but I’ve also stopped taking good care of myself in general.

Henry was a challenging baby. He rarely slept more than an hour straight until he was about eight months old. He suffered from severe reflux and food allergies and until we had that figured out he was uncomfortable most of the time. He cried… a lot. I slept very little, I was on an elimination diet so I could breast feed him allergen free (so I was hungry all the time) and I think I was running on pure adrenaline… and crazy love for my little guy.

It’s amazing how quickly time passes. I always would say to myself, “once we get this under control I’m going to start working out”, or “after the holidays I’m going to get that manicure I received a gift card for”, “I’m going to find time to hang out with my friends…eat right” etc etc etc. You get the idea. Well, my manicure gift card has since expired, so that tells you how I’m doing!

It’s natural and necessary to put your little ones first, and I would do anything for Henry. What I am learning, however, is that saying to yourself that you are going to do something for yourself down the road, when you go over a hurdle or reach some sort of milestone, is really just a very complicated form of procrastination. In our situation, every time we seemed to get a handle on some condition of Henry’s (like reflux) another one popped up (like apraxia) and another (like hypotonia and sensory processing dysfunction). I really felt in these last months though that I could see the light at the end of the tunnel on this road called apraxia. We are beating it!  And during that brief respite from the intensity of advocation, research, therapy and overall worry, I took a good look at myself. Aside from my parenting abilities I wasn’t really liking what I was seeing. I looked about five years older, have gained over twenty pounds in the last two years, and it looks like I haven’t slept in as long as it took me to gain that weight. Aside from Henry I have been finding joy in very little. This is a big problem. There are some changes that need to happen that are obvious…like exercising, getting better sleep and taking time for myself. Other changes are ones where the answers don’t come so easily. I was really working on figuring this all out when another bomb was dropped in our laps.

Henry’s seizures and recent diagnosis of a brain tumor/cortical dysplasia and epilepsy have hit me harder than anything else thus far. Mentally I am at a really low point even though I know things could be so much worse. I have been unable to motivate myself to start exercising or going out and having fun and all of the other things I know would make me happier and a better mom. I feel like a deer in headlights, frozen and unable to clearly think what my next step should be. I don’t really feel like I have the time or the luxury to be in this “mood”. I need to get my shit together, pardon my french. I spend half my time with Henry marveling at his amazing personality, progress and overall cuteness, soaking up every drop of him. I spend the other half wondering if what I’m seeing his truly him or a by product of his “tumor”, is he slurring, is he sick, is he about to have a seizure, is his tumor growing right now…when is the other shoe going to drop? I can’t live this way. The uncertainty and enormity of everything is overwhelming me.

So how do I, amongst all of this, find the time to take care of myself too? How to I motivate to do all of these things I should be doing for me? It feels selfish somehow, yet necessary for my sanity. I just can’t seem to take the first step.


6 thoughts on “taking care of me

  1. I just read my own story in your words. My daughter is 5 & has Cortical Dysplasia. We still go through many of the same challenges you mentioned on a daily basis and are discovering new ones every day as we now are preparing to start school in the fall.
    I would like to encourage you by sharing some of the information Ive learned in the last 3 1/2 yrs. from my intensive research.
    Getting a diagnosis is a good thing. All the problems & symptoms you described prior to your recent diagnosis of CD wasnt your child having many different medical problems. They were ALL symptoms of his CD.
    So now that you know what the problem is…you can begin to adapt, basically your whole life.
    Once you figure out what works best for both of you (which takes a little while) it will become a “normal” day for you.
    I hope this helps you in some way. Feel free to contact me.
    Good luck
    (CD mom)
    I have a website although its a work in progress & I cant seem to find the time to work on it. Lol
    Also on Facebook: Seize Cortical Dysplasia
    My email address is seizecd@yahoo.com

    • Lisa, thank you very much for your comment and your support. I did email you from my personal email so I hope it doesn’t go in your junk folder :) thanks again Linda

    • Beautifully written, Linda. And you’re blogging more … good! Although I cannot even begin to understand what it must be like to think you’re making strides towards beating apraxia only to find out there is “more,” I can 100% relate to putting yourself last.

      Just to let you know you’re not alone … Since I got Jake’s diagnosis in September, I have put on 10 pounds, have stopped running on a regular basis, fun no-brainer fiction has been replaced with nonfiction & blogs, and quite often I don’t even wash my face at night and put on my “special” cream! I joke with my friends that I’m going through a self-destructive phase. I also said, “my heart’s just not into running right now,” b/c that is the truth. When I try, I’m just consumed with guilt and worry, feeling like there are so many other more productive things I could do be doing. When I went to the CASANA walk, I was actually on the lookout, wondering if other moms of apraxia kids were going through the same thing.

      But, I went to a friend’s father’s funeral this past Friday and I was embarrassed that all my old friends who I haven’t seen in a few months were still slim & trim in their dresses, while I was hiding behind black pants & a baggy white shirt. One friend said, “My new schedule is great! I drop the kids at school, then head to the gym, and go to work at 10:00.” She gets off at 5:00, but her husband gets off work early to pick the kids up & start dinner. Erghhh… I couldn’t help but feel jealous of her tidy life.

      Anyway. This was a wake up call for me. I have MY life and even if it is more difficult, I have to figure out how to not fall apart at the ripe old age of 38. I have been reading a book on autism, which has really inspired me to feed Jake ultra-healthy so I’ve put diet on the top of my priority list now, for both of us. It’s got to be. My summer clothes are all too tight and I will do anything to boost Jake’s speech.

      Last, if you are a Christian, I would highly recommend reading the book “Calm my Anxious Heart,” by Linda Dillow. I read one chapter a week back in the fall for a bible study and it helped me tremendously. Hang in there and best of luck to you-

  2. Hi Linda, I was going through some old blog entries of mine and came across one that you commented on last summer. I haven’t read your blog in a while but wanted to see how Henry has been doing. That’s amazing how you visited the Kaufman center and Nancy Kaufman herself. I hope you gained a lot from the trip. Audrey has been doing well, making strides in her speech. Not sure if you’ve read my blog recently, but we’re still working on the K and G sounds…it’s almost been a year of working on these. The K is coming, so hopefully the G will be soon. I can relate to your post completely. Audrey is my only child and despite her two biggest concerns are social/emotional delay and speech, I find myself in a rut often. I’m a worrier by heart so I know this doesn’t help! She starts pre-K this Fall and we’re hoping to qualify for a community teacher to help with her socialization. This would help her so much, but I’m sure there will be hold-ups and delays galore. We have a back-up plan in case we don’t qualify but it will be pricey. Chin up and hang in there! You are a wonderful mother and you are not alone. Even if it means just stopping for a second to take a deep breath or sitting down for a cup of coffee or tea, that may help. I used to do a Thankful Thursday weekly entry where I list 10 things I’m thankful for. I haven’t been good about keeping up with this Thursday blog, though, but need to get back in the habit. It helped put things in perspective. All the best to you and sweet Henry!

  3. Bebe Blogger, I can’t find your blog actually, I would love to catch up on it. Henry has been working on K’s and G’s what seems like forever too. It’s funny because those are the sounds (at least in the beginning position of the words) that has improved so much since our trip to Kaufman. We have been working on the word “go” for literally a year and a half and he finally got it! Yay! Who would have thought a two letter word could be so hard? But the motor planning for “g’s and “k”s and “c’s can be difficult. Can’t wait to read more about Audrey…thanks for the kind post~Linda

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