If I Can Take A Moment To Be Real Honest

The last month or so have been a little rough for me emotionally. Between getting bronchitis, the stomach flu, all of Em's recent milestones, the highs and lows seem to sway from one extreme to the next. That paired with the fire hose that the holidays always are, I found myself going into January feeling pretty exhausted. New Years goals? Well I started Monday off great and everything went downhill from there... so, there's always next week. 


I want to talk about something that has been weighing really heavily on me the last few weeks though. It felt like such a heavy burden until I actually talked about it with Derek a few days after Christmas when we were running some errands in Idaho, and I realized the freeing power that comes from sharing our burdens with other people. Suddenly it felt like this weight that I'd been dealing with for over a month felt so much lighter when I was able to just get the courage to yell it out to the universe. 

The truth is, I'm deathly afraid of Em dying. Obviously the reality that her life may be shorter than others is something we've known for years. The oldest living person with HPE is 32, so we know that it's likely going to be terminal at some point, it's just a matter of when. 

I've gone the majority of her life with this knowledge in the back on my mind, but never really thought about it being a serious reality that I stressed over. The last month or so though, I've kept thinking that it's going to happen, and that it could be sometime soon. 

I remember a doctor telling us when she was born that there are a lot of things that the brain is expected to do around 18 months, and when those things start happening it can start to be too much for them and things start to go downhill at that point. So I think I find myself on the edge of my seat with each new milestone thinking, "this is a miracle, but is it going to be the thing that puts her over the edge?" 

Know how parents think when their kids sleep in, "they must have died", and as a parent you half think that for a few minutes, but then you hear them playing in their room so you know all is well? A few weeks ago I woke up panicked and really thought that Em had died in her sleep, and I sprinted in and barged through the door to find her ticked off that I woke her up. 

When we were in Idaho I went to buy something at the store, and on the way home I saw a house with a ton of Christmas lights and thought, "Em would really love those lights" as if she wasn't here to see them. I could have just gone home, got her in the car, and showed them to her. 

I find myself frequently lost in a day dream about how much I freaking love her. Yes. That's the best way I can describe a mother's love. I freaking love her. And I just want her here forever. And I should probably see a therapist. That's all for today folks. 

9 comments

  1. You are amazing and thank you for having the courage to be vulnerable with your feelings.

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  2. I know it's not remotely the same but my son has stage 4 cancer and my daughter has a genetic disorder that could be fatal. It's hard. So hard. I really have to focus just on each day as they come, knowing I have to make things matter. Have you been able to get the temple since you moved to Utah? That's on my list to help me right now.

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  3. Happy New Year!!
    May this New Year be special in every way ... bringing you the gift of love and excitement.
    I will introduce Japanese New Year's customs.
    In Japan, there is a New Year holiday where family and relatives get together.
    On New Year, Japanese children receive gifts of money known as "Otoshidama".
    Otoshidama is given to children by adult relatives such as uncles, aunts and grandparents.
    The amount of Otoshidama grows as the child older, for example, 1000 yen for children under 10, and 3000 yen for children over 10.
    Otoshidama is one of the exciting traditions of New Year, which children look forward to very much.
    Ryoma.

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  4. I think everyone should go to therapy and your concerns are valid and something anyone would have in your situation. You're awesome, you're a great Mom, and I'm glad that sharing has been able to help lift that burden!

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  5. I’m so sorry for your pain and fear. I know there is not much I can say that will lift your burden, but please know that far away in NY your old Visiting Teacher sends you love and prayers.

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  6. What a difficult thing to live with each day. We love our children, and knowing they have serious medical conditions is frightening. Sending prayers and peace your way.

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  7. As the saying goes, Love hurts. When you love so hard and deep, it can actually hurt whether it be from fear of the unknown, a feeling of no control, or just worry that really stems from anxiety. What I recommend is toss out any thoughts that bring you fear. Our thought process is the number one trigger of our fears to begin with. I hope this helps.

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  8. You are brsve. Hang in there. Our Savior will help you carry this burden. You are a good mom. ❤️

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  9. I know this is a bit late but I just wanted to say keep on mind that there are multiple people in their 30s with your daughter's more mild variant including one woman with advanced education in her 30s. I have a neural tube defect and while many people are still told their children will have limited life spans with Spina Bifida, with good medical care we have tons of adults in their 50s, 60s, and 70s. Your daughter may eventually start to experience life threatening issues but she may also have a full, long life with good medical care. I hope you can give her and yourself the gift of an open mind about the future and remember that some doctors are quite morbid with kids who have significant birth defects . *hugs*

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