Preparing for normal in an unpredictable life 

I believe I have taken about 3 pictures to document this baby girl #2 of mine. And it happens right before bed with tired eyes and bad lighting. At this point in my pregnancy with Jane (I am now almost 25 wks along), I think I had approximately 87 pictures of my “bump”. Oh sweet, second child, I promise I love you.

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While it was not our motivation in conceiving, I think I had the notion that a second child would “normalize” our lives. That God and fate would know that life must be easy for a pregnant mama. Therefore, Jane would get healthier, appointments for her would become more sparce, and I would have an unending supply of super strength and energy to get me through to D-day. And delivery would probably consist of Enya music playing in the background while a midwife brushes my forehead with golden feathers in the comfort of my spa-esque million dollar home. Hilarity.

A few weeks ago, upon finishing my 1st trimester with Baby #2, we noticed Jane’s infantile spasms multiplying from the manageable number they currently were. To add insult to injury, our already underweight Janie started sporadically, and unexplainably, throwing up her meals.  We travelled to Orange County (7 hrs from us) to hear that we should either admit her unexpectedly that evening or plan on returning 4 weeks later for a long term EEG. We chose the latter. At 23 weeks pregnant I journeyed with my mom and my very cranky child back to the Children’s Hospital to see what our next step should be. I was up every 2-3 hrs due to hospital noises and maternal instinct, and had wild Braxton-Hicks most likely due to stress and the super duper comfy hospital cot they let you sleep on.

After 3 days we were sent home on an additional seizure med for Jane, and a plan to get her on a gastro-intestinal feeding tube to aid in her weight gain. A follow up EEG looms for sometime next month. Meanwhile, evaluations, a temporary nose feeding tube and minor surgery for the real deal will all hopefully happen before the holidays.

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Countless appointments, thousands of miles, 4 medications for Baby #1 and approximately 16 weeks until Baby #2 is here. Sometimes you just have to laugh 🙂

With all that said, on top of caring for an immobile toddler with my increasing belly weight and an ornery sciatic nerve, it becomes more obvious that our journey is not so normal. I wish my biggest concern for my pregnancy was avoiding sushi and sleeping on my side. But that’s just not the case. Thankfully I have seen many a mom and dad go before us, caring for an ailing child, dealing with special needs, and still carrying a healthy subsequent child and rocking out life.

Every day is a battle of emotions, choosing trust over fear, finding rest amongst chaos, and knowing when to fight and when to let go. In hopes that a parent in a similar situation needs this one day, there’s a few things I try to make room for in preparation for this very unexpected journey.

1. Jesus. Faith. Knowing His promises. Believing that they are for me and they are real and true.

2. Thankfulness. There are so many potential worries for our future. I’m doing my best to maintain an attitude of thankfulness for what I currently have, not what could potentially go wrong.

3. Marriage. My husband and I recently started marriage counseling. We don’t want a divorce. We love each other, laugh at each others jokes and find one another very attractive 🙂 However, when you live an unpredictable life (think hour to hour of unpredictability), it’s important to major on what matters. And for us, that’s our marriage. It’s an honor to grow closer to him when a situation like ours may tear others apart.

4. Healthy diet. So hard. All I want is chips. And biscuits and gravy. And chow mein. And cheese fries. And a mochachinno chocolate fountain of life blast. BUT instead… I prioritize fresh food, and fresh juice, and lemon water, and organic options, and limited amounts of sugar. Not because I’m super trendy and organic (although I wouldn’t argue with you if you said I was), but because I would like to be ready in all seasons for anything. And unfortunately an animal style cheeseburger doesn’t exactly get me ready for game day. (But if you know of an organic/healthy one that does, PLEASE let me know!)

5. Yoga. I’m not a “yogi” ( I only think I know what that means), and I don’t know the proper names for poses, but I do know that during pregnancy I can’t do much of anything without some crazy nerve or muscle screaming at me for sweet mercy. I got some wild hips ya’ll, and yoga seems to do the trick. It’s relaxing (cue singing angels) (Autocorrect offered to make “angels” into “bagels” and now that’s all I want).. Oh yea yoga. It’s relaxing, builds strength, aids in mental focus and and gives you a nice stretch. Hallelujah.

6. Friendship. I didn’t intend to make this one last. I’m definitely that friend who is in need right now. So I really need friends. Being humble and expressing my needs and letting people help carry my burden and lift my spirits is healing and energizing and sometimes all you need. Staying shut up and sad is easy, but letting friends in, while it requires more work, is a much better pay off.

Please add on to this list every other thing a pregnant woman “should” be doing. Aka drinking water, getting rest, not riding Space Mountain, etc.

Heres to fighting and another leg of the journey!

 

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3 thoughts on “Preparing for normal in an unpredictable life 

  1. I absolutely love reading your updates. Keep them coming. And know that you have people who are constantly lifting you, your husband, and your precious girls to the Father. He hears every prayer.

    Oh and I watched Gilmore Girls when I was pregnant with my first 11 years ago and when he was able to crawl anytime he heard the theme song he’s crawl over to the T.V. and would watch the whole theme song intro and then when it was over he’d crawl back to where he was playing. To this day every time I hear the theme song I smile because of those memories.

  2. I love you and your honesty Hilary! I’m always here for you to call and chat with. Not because I’m in the exact situation but because I’m a mom and I’ve felt very similar. Remember I struggled with asking for help too, being a single mom with seizures .
    I felt I had to prove to God that I could trust him and only depend on him. And I had a hard time asking for help cuz of my past. I love you and always praying for you and Jane

  3. You are amazing. It is so challenging sheparding your child and family through the battle with epilepsy. I am so proud and inspired by your proactive approach. Know I am here for you always. Jane is blessed to have you as a mommy and I know she is your hero too. Lots of love and blessings!

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