Wednesday, May 21, 2014

Because You Can't Plan Perfect

I am in super planner mode. I love this mode. It means I get to write lists and then cross the things off the lists, and make more lists, and then re-write the lists in fancy ways. It's fun, because that's the kind of fun I like to do.

I get in this mode when I am:

A) avoiding work
B) stressed about work
C) reality is staring at me in the face and not blinking
D) coping
E) overly excited about something that clearly needs to be planned

(Cough moving again cough)

And so, it should be said that when I was pregnant with my dearest and loveliest Grace Harriet, I did not plan for her arrival. I continued to work 40 hours a week; I pushed through my morning sickness the best I could [I had the best and most understanding employers ever-ever too]; and, honestly, I had the best time being married, while also going through three tough major life events with him.

I was strong for him and with him, and that felt good. It felt very married.

I love this picture - my perfect new baby!
We moved to New Orleans and I spent a majority of my time getting settled and unpacking, writing for my Story Sessions writing workshop, napping, binging on mystery shows of Netflix (specifically, Rosemary & Thyme, Poirot, and Monk if you need awesome show ideas), learning my way around New Orleans, getting my appetite back, swimming with Will, and more sleeping.

I channelled Will and decorated her nursery with our love. I tried to get really excited about meeting her. I daydreamed about what having a baby would be like.

Fast-forward to Grace Harriet's birth: awesome. Steady pace, epidural, no complications, and life-giving. I did not take any birthing classes beforehand (besides a free basics one at the hospital), and while it was mildly informative, I enjoyed seeing other pregnant woman and eating the complimentary cheese.

And I'm tearing up as I type this because I love Grace so much. She is my baby, and she is perfect. She is social and lovely and sassy. She smiles for almost all of my pictures, and we like to laugh together. I've never been so smitten. Grace has legitimately changed my life for the better.

Since Grace was three months, we've noticed that her right arm does not move as intentionally as her left, and she likes to keep her right hand fisted. In a possibly related note, her right leg is a bit weaker than her left. We've brought it up to her doctors, and by six months, we got the go ahead for physical therapy. Thus began a month-ish of interviews and multiple evaluations. Yes, a healthy pregnancy. No, nothing abnormal. Yes, she does have the most beautiful blue eyes.

My beach bum bebe
Finally, we met Grace's therapist - a vivacious woman who has been doing this for over 20 years, and has a young daughter with cerebral palsy. Ms. Lisa is an amazing resource of information. She is gentle and firm with Grace as she stretches her and helps her gain more muscle mass (needed for her fine motor skills as well as her gross), and teaches us how to ESTIM her, since we'll need to buy our own and do it twice (or more) a day to help Grace recognize and use those muscles more (she is responding so well to this treatment!). She'll get a tiny hand splint to help keep her right hand open more.

There are a lot of positives - whatever Grace has, with persistence and lots of therapy, she should do just fine. She has great range of motion, moves her arm and hand voluntarily, and is very flexible. She is able to withstand long PT sessions, and is generally in a good mood as we contort her body and during ESTIM sessions. We're seeing a specialist on Thursday - a physiologist who is triple board certified in pediatrics and sports medicine; the doctor himself also has cerebral palsy and a reputation for diagnosing hard cases.

Ms. Lisa working with GHB
But when Ms. Lisa and Will are talking during a session, and words like cerebral palsy and hemiparesis are being said towards Grace, I want to cry. They are not life-threatening conditions, and for that I am sososososo grateful. I suppose I am just in shock, of sorts - and it is the confirmation that my gut told me everytime someone said, Maybe she's just going to be a lefty.

No! It's something more. Something we did not plan on; or expect, for that matter.

At mass yesterday, I stopped feeling anxiety for Grace. It was temporary, and a good reminder to go to God. God, who loves perfectly. God, who gave his only Son. God, the Alpha and the Omega and the one who loves us and carries us and knows us each intimately. God has the best plans for Grace. I need to trust in him, and talk to him, and avoid the company of scary thoughts. It is Satan who plants doubts. Satan spreads sadness. Satan hates the hope Love gives me.

Mama Mary, full of Grace, guide me to be the best mother to GHB.
{statue at St. Patrick's on Camp Street, NOLA}
Grace is going to be okay. Struggle is okay. The most important things are to continue loving her wholly, doing PT with her, teaching her cheerfulness instead of shame, and continuing to praise and go to the God who made us, who knew each of us before the womb (Jeremiah 1:5). It's amazing to me how babies thrive in the love of their parents. I need to learn to thrive better in the light of God's love of me.

May I continue to be open to his plans, and plan along with God, the Great Creator.


  1. 1. Have I mentioned that I love the new blog design? Love.
    2. I like how you describe GHB as sassy because I totally see that in every picture and I can't wait to see her sass in real life someday!
    3. You are doing the best you can lady, getting your baby the help you can, and remember that no matter what, Gorgeous Gracie is going to be ok and is ok, and she has a great mama!

  2. This touched my heart today Julie. My 2yo almost 3yo is still non verbal besides screaming and some babbling and "daddy". He can't tell me what he wants or when and it stresses us both out. Lots of people tell us that they know someone who didn't say a word until they were 4 and then spoke in complete sentences. I hope for that but there is something more. We're starting the eval process for autism and I'm scared and I know that God knows all and I need to trust Him but it is hard. I spend a lot of time crying about this lately. Last night I mentioned to my husband what if Christopher stays nonverbal and has to use other means to communicate and he said " so we figure it out and he does ". That's it. So simple.

    Thank you for writing this today Julie. You are doing great for pushing and getting therapy started. :) that she does well with ESTIM is amazing... I'm a grown up and I hate it!

  3. I like and relate to what you said about struggle is okay. I never understand that so much until getting married and dealing with certain things in our marriage...hope Gracie's therapy continues help her go strong!

  4. Oh my gosh. Beautifully written. I had no idea Grace was going through this! Just remember that "cerebral palsy" and whatever the other thing you mentioned are just words -- they don't really tell you much if anything at all about your cute little GHB. Seriously, she is just such a doll! And she is perfect as far as I'm concerned. I love what you said - a little struggle is a good thing. It will teach her character. <3 so many hugs for you, friend

  5. Oh Julie, I miss you, and my heart and prayers go out to you. Grace is a beautiful baby, and brightens my day every time I see your pictures. Whatever is going on, you are right that struggle is ok. God has had to teach me through health struggles of my own, particularly in college, and now I can see how it taught me the importance of relying on him.

  6. Julie,

    I was there at 11 months with an ASD diagnosis. Little R is almost six and doing beautifully. Life can throw you anything at any moment, and whenever I was down a bit and felt like the situation was unfair, I would run into a parent with a teenaged child with a drug problem, or with a twenty-something child with cancer, or with a forty-something child struggling with a strained marriage and fertility issues. It was even hard for my sixty-something mother to see me in pain over the diagnosis. That's when I think, well, I had to do some extra work in these early years, but that's okay, and frankly it blessed me with a closer relationship with my son than I might otherwise have had. I'm also reminded that I'm extremely lucky to have had the knowledge to get the early diagnosis and intervene for the best prognosis possible. As are you. Good mama! It was so hard to hear people tell me these things at the beginning of the whole journey, but at the same time it was so helpful to hear people tell me that they had been in that same scary place, and once there was some distance between that scary place and progress made in therapy, the fear largely subsided, because the child was happy, loving, and living life quite fully. And that has been true in our case. We are doing great, in spite of uncertainty, because we would have uncertainty under any circumstances - every parent has that, and I can think of one particular mother who accepted extreme uncertainty for I guess about 9 months and then 33 years. And learning to deal with uncertainty when your child is very young is, in many ways, a gift, especially if that uncertainty involves a situation where you actually have the power to help your child! That has been the most empowering experience of my life. No, I wish ASD didn't exist, but at the same time, I wouldn't want to "cure" him, as a student once asked me, because if I did that, he might be a great kid, but he wouldn't be Little R, and I might be a calmer, more Martha Stewart-esque mother, but I wouldn't have made the progress I have made as a person. I don't think God "did" this to us, but I am so very grateful that since it did happen, I was given the gift of grace to work through it and come out a better person. And you literally have a gift of Grace! So while we all pray for the best prognosis possible (and just guessing from our experience with OT - Little R has low muscle tone and trouble with coordination and crossing the midline - Little G is going to be golden with her continued therapy), we also say a prayer of thanks that you have that gift of grace/Grace!

  7. ETA: I should have mentioned the blessing of learning to live in the moment. We can't do anything about the past - to be honest, we never asked ourselves if something could have been done differently - ASD is way too complicated for that, and we were busy helping him! We can't do anything about the future. The three of us could fall into a sinkhole tonight and never be seen again. What we can do is be completely in the moment right now - and that is something you have to be when you have a spectrum kid, because his world is all about right here, right now. And right now, he is doing just dandy. He is happy and healthy. The three of us are together. We love each other. The future could hold a lot of things, some ASD-related, some akin to late night B movie disaster flicks. Do not think one more minute about the past, and do not think too far into the future just yet - other than being ready for anything. Today Grace is happy, right? Loved? Enjoying life? Today she is doing great = just plain she is doing great. If you want to worry about something in the future, you might worry about whether children's fashion will be less risque by the time she starts middle school. I am so glad I do not have to worry about arguing with Little R over whether leggings constitute pants (I have been this close to putting in my syllabus: LEGGINGS ARE NOT PANTS).

  8. Aww she is so precious! <3 I love your point about Satan being the one who plants doubt and God who *is* Love gives us grace to handle whatever comes. I need that message… who doesn't?? Thanks for sharing this. Best of luck with the PT; I'm glad Ms Lisa is gentle with your little one!

  9. Praying for you guys! Felicity actually doe this too with the one hand open and the other kept balled up. She reaches with her left (non balled up) hand only. Thanks for sharing this info so I know to mention it; otherwise I don't know that I would have thought much of it!

    Also, Grace and Felicity are twinsies with their cover ups and swim suits :).

  10. Just one photo of your daughter, and I could see the sass! The way you describe her, she has a great personality... the kind made for getting through a little struggle!