I'm Not Okay

Tuesday, September 30, 2014

Debbie Altman visiting us and she actually put Everly to sleep!

I had a visit from my pastor's wife a couple of weeks ago. During our time together she said she felt like she needed to tell me that it is okay to not be "okay" and that being a believer and having faith didn't exempt me from the emotions that go along with our circumstances. I'm not sure why but just hearing that somehow gave me permission to open up a bit more. So, here I sit, vulnerable and ready to let you in.

I'm not doing okay. I mean really not okay. Sometimes.

Some days the reality of Everly's health overtakes me. Some days the heaviness of it all consumes me. The emotional toll that it takes wears me down until I have no mental energy left. My mind has been laden with worry, my body sleep-deprived, I'm not thinking as clearly as I once did. The mental fatigue that has been building since the day of the diagnosis some 200+ days ago eventually catches up. (Even longer honestly if you go back to our prenatal story at the beginning.)

This is where it gets hard. From the outside, it looks like Everly is doing well...she's "healthy" and growing and thriving. And she is.

At the pumpkin patch on a nice 70 degree day in FL

But it's the other stuff that takes its toll. I have withheld discussing this for the most part because she IS here, she IS with me. I feel so incredibly guilty for that when other mamas have had to say goodbye to their precious angels. How can I possibly even verbalize my feelings when I sit holding my daughter?

I have no superhero strength. No special power to shield me from the pain. I feel it. I feel it everyday. I hurt for my daughter. I fear for her because I can't protect her. I worry because I don't know what the end will look like. I'm sad because she's uncomfortable. I'm depressed because our time may be short. I'm angry because the world doesn't stop to marvel at how far she's come. I'm confused because there's so many decisions to make for her, about her and concerning her. Are they right ones? Is the doctor telling us from the perspective of what he/she would recommend for a typical child or is it because of this label of T18 that seems to have legs and a body of its own? In this foreign world of medicine and physicians, I feel abundantly inadequate, not sure what questions to ask and what answers to accept. The emotions, feelings and strain that go hand in hand with living with this diagnosis overwhelm and consume me 24 hours a day.

Her 7 month birthday trip to the zoo.

Yes, I'm a believer and I trust in His sovereign plan. Yes, my faith lies in knowing that there's a better place, one that we can't even begin to imagine. I get comfort and peace from that.

But, here in my mortal, earthly body, I'm not okay. Sometimes.

The dichotomy of being joyful and celebrating the moment while mourning the reality of what is to come is excruciating.


Living with this prolonged grief has taken its toll. I'm scattered. I'm forgetful. I'm all over the place. I start one task and then within a matter of time, I have three going simultaneously of which none get completed. I walk into a room completely not remembering the purpose. (Truth be told, I did this even before.) Food is my friend again. I lean on it when my heart hurts and I can't turn off the scary thoughts that find their way in. I'm completely disorganized. (A terrible pet peeve but one at this juncture seems to have no fix.) It takes every ounce of mental brainpower to pack what we need (which is plentiful) to head to a doctor's appointment or an outing, keep up with due dates and other things relating to the boys, then all the extra other stuff that, in all honesty, I can't even remember right now. This new me is not the norm. Or maybe it is the new norm?

Little bro playing with Everly

I live in two worlds. Thoughts of joy and happiness are just as present as those of sadness and despair. Smiles and cheers are common. But just as common are those thoughts of what is to come. Maybe not now, maybe not next year, but there is no escaping the damage done by the extra 18th chromosome. Thoughts of how she struggles and her severe and life-threatening reflux which is so awful to watch. The color changes that happen as her body convulses and tries to control the inevitable choking. Thoughts of how cardio has told us how the end will be if her heart/lung balance changes. Thoughts of liquid flooding her lungs. Thoughts of living life without her. I try, I try, to keep my thoughts on the positive, on the here and now, but everyday challenges are a stark reminder of what Trisomy 18 does to a body. How can I not think of it? I see it manifest itself in Everly day in and day out. But, alas, I must continue to try to win this turmoil of good over evil in my mind.

It does not take much for me to be brought to my knees in a puddle of tears. For some odd reason last week when I was getting my teeth cleaned (finally after skipping my 6 month visit in the spring), the minute Dr. K walked in and asked how I was doing, it nearly brought the tears on the verge of pouring over the rim. Reading other families blogs, families who have already lived an unimaginable journey, write about their life and their beloved child. Learning about the experiences of others in our small Trisomy world, yes, but also now I've been made aware of other conditions that are just as horrible. Reading about their strength, yes, but also their heartache and pain. It is real and so raw. It shakes me to the core.

How can I live without my daughter? Is it even possible? See, I haven't written or spoken about it because I know that she's still here. I thank God a million times over for that so it seems not right to contemplate the what ifs.

But, I cannot escape the reminders that every doctor visit brings, the wear on Everly's little body, the eventual outcome of Trisomy 18. I am reminded every single time hospice is at our door. It is brought to the forefront with each tube insertion, echo, EKG, therapy session. It is there. So, you see, while I live in the day to day, I am unable to escape the reality of Trisomy 18.

I need my faith. I need my friends. I need my parents. I need fun times. I need stuff that I don't even know I need.

I've found a few simple things that I have realized I "need": playing dress-up with Everly in fancy clothes, swimsuits, etc., matching headbands to outfits, taking her picture, spending time laughing with the boys, homeschooling, meeting with friends, taking Everly outside for walks, "new to us" clothes and toys off our local swap, writing on here, Everly's Facebook page, checking things off her bucket list. These are so mundane really but have been lifesavers for me. I need them like I need air. Like I need Everly.

I had a moment (well, it actually turned into an all day moment but still) a few weeks ago where I "lost" a particular Christmas sleeper on our local swap to someone else. Long story short, it sent me into a tail spin of tears and anxiety I can't even begin to explain. I feel like I need to make this Oct/Nov/Dec just crazy special in all the ways I would over time if not in this current situation. But I need to do it at an accelerated pace. And somehow losing this article would preclude a special time from occurring. Did it make any logical sense? Of course not. But, logical or not, it was very real to me in that moment. (Thank you, friend, for talking me off the ledge that day AND heroically getting that sleeper!)

I'm really not okay. Sometimes.

I'm so thankful to have my faith. I know that God has Everly and our family in His hands. I do rely on Him and I do cry out to Him. Please know that while I am "not okay" sometimes, I always have Him and His promises to never forsake me.

What is the takeaway from all of this? I guess it's to remember those in a season of prolonged grief. That just because things look okay from the outside, doesn't mean they are and most likely, they aren't okay. At least sometimes. Love on them. Call them. Message them. Spend time with them. Give them grace. They have much on their mind that others simply can't grasp. Know that they won't be able at this time to offer much in return. Be understanding. Be flexible. Be compassionate. Really, just love them.

Oh, and by the way, I will be okay.

John 3:16 - For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life.

With love and appreciation,


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