Looking Back. Seeing His Faithfulness.

If there is one thing I have learned about the special needs (physical/intellectual/emotional/behavioral/learning disabilities/differences- lots of way to phrase this) tribe, is that you upset one of us, you upset us all. Honestly, we try to breathe and let a few things slide, but it’s near impossible to do.

I have been having a bit of a need to go back and look through a notebook/journal that my mom kept for both my brother and I. She didn’t write something everyday, but she wrote the key points in our lives at the moment, and funny stories or things we said, our many doctors appointments and school meetings, things that were weighing on her heart for us, her prayers for us, trips we took, places my brother was invited to speak because of his learning differences- pretty awesome if you ask me, sick days, days that we got lost in playing, days that we were struggling. It’s fun to look back on these times and see what’s made me, me. The “bumps” in the road I have climbed on. It’s also fun to see how feisty she was (and is) in our school days. I remember some of this, but IEPs were just coming on scene when my brother was in elementary school, and I wish I could have been a fly on the wall! My parents had pretty much one teacher and one student that was willing to speak up, along with doctors, to say my brother was not getting the same education that the other kids were. And boy, oh boy, I can see my mom’s 1980s stirrup pants and bedazzled sweater marching into that school and not leaving until they had a meeting with the head of school.

Not only did they have to self-educate themselves on IEPs and learning disabilities, I also was constantly at the doctor’s office, or they were on the phone with them. In reading over this journal it prompted me to get my medical records just to see how much I could get, since it would all be “archived” because it was all documented by paper. And surprisingly, I was able to track down a good bit. And yet again, there was no backing down. They had questions that needed answers, and that was the bottom line. There was no google and even if there was, who can fully rely on the internet?!? We had Britannica Encyclopedias- I don’t remember them having to much on newborn reflux or asthma attacks.

This continues, you can’t stop caring when your kids are grown. You may have to ask Jesus to muzzle your mouth quicker, but it doesn’t end. I’m a witness to this. 😊 I still to this day watch my parents be concerned about our health. They try to hold back, but it’s in their eyes. It takes a lot of work to go from being caregiver, information consumer, medical record keeper, to not knowing anything except what we tell them.

I only have a tiny bit of a glimpse of this.

As I was growing up people always would say, “she is so shy or quiet.” This drove me nuts! And it HAD to drive my brother crazy, because I was anything but quiet or shy! We laugh now, because most people know now about my spunk, I guess that’s what we will call it. But even one set of grandparents didn’t really believe I was a fireball until I was asked last minute to speak at a banquet. I only had a few hours to prepare and for the most part winged the speech. It was fun to see the faces of all four of my grandparents- two who had experienced my spunkiness from birth, and two who just knew me as quiet and mannerly. I love all of them- but it all came down to who was I free and comfortable to be me around. After this speech, I was able to be me with all four! 😊 And when it came to speaking up in helping them in life and medical decisions and questions in their last few months of life- I was able to do this with confidence and with the advocacy I had learned from childhood.

I am not shy nor quiet. I am a thinker, but when something needs to be said or advocated for, I don’t hesitate. (if you didn’t already gather this info) So watching my parents push and advocate for my brother and I as kids, we were also being equipped to do this for ourselves and others. P.S. don’t get us both upset about the same thing at the same time- just a tip. 😉

This past week I have been reading through things I journaled while Lucy was in my arms. It’s bittersweet. It’s tough. It’s healing. It’s heart-breaking. It’s a mountain in our story. And good golly was I a spitfire, if I do say so myself. My mom has said of the time we were in the hospital with Lucy, and getting her diagnosis, that she thought the doctors and nurses didn’t really know what or how to respond to my firm decisions. But now that I have gone back and read what I wrote, I guess not! I was trained by the best, I give them 5 stars! But the honest truth is, it’s all to God’s Glory!

Truly. I honestly don’t like telling this part of our story, because Lucy was in so much pain, but I have realized that it’s part of the miracle of this time with her. So the day that we went to the doctor, we shared the same primary care doctor, she checked Lucy for multiple things and made referrals while we were in her office, but I also was struggling with ear pain and losing my hearing in my left ear. I just had an inner ear infection- it hurt but my baby was hurting worse, so she gave me antibiotic drops to pick up at the pharmacy. As I am at the pharmacy and also getting her new formula to try, the doctor calls and tells me to go to the ER. (the rest of this story is in another post) Fast forward to the next morning, and “results are in” and a meeting is called, I officially cannot hear out of my left ear. Not only can I not hear, it is my left ear and any pain on my left side of my body triggers migraines.

Scene: My Lucy is laying in a full size hospital bed, because we have gotten it approved for her and I to sleep in the same bed (aka she voiced her thoughts through the night enough to get her point across that she was not satisfied). I’ve just been told by the palliative care team, who I had just met, that the doctors and the whole team wanted to meet with me in the conference room. The room was packed! At least 30 people. Fluorescent lights- my migraines favorite type of lighting- NOT! I can’t tell if my ear or heart is pounding the hardest. Things seem to be spinning and everything seems to be a blur. The neurologist starts talking and I can barely hear, holding my left ear tight. I hear the diagnosis. I hear brainstem and nothing more. I hear two weeks max. This whole room of people are looking at me and my parents… I still think about this moment, what were they expecting? Because they were not expecting me to excuse myself to be with my baby girl. They seemed shocked.

Here’s the things I remember after that: I remember crawling into the bed with her and weeping. I remember family and friends coming. I remember her cries of pain. I remember one of the palliative care doctors messaging my doctor about my symptoms getting worse and asking for more antibiotics- so kind. I remember, after a couple days, telling the palliative care team that I was for sure Lucy didn’t want her bottles anymore, not even with a syringe, and could be taking a risk of her aspirating on the formula. I asked them to remove the bottles of formula from the room, even though since they were placed in our room, and now were ours to keep- I couldn’t keep looking at them. I asked speech therapy and physical therapy to stop- there were other children that really needed them and my Lucy needed rest and relief from pain. I asked for time to get KidsPath set up to meet us at our house, before they discharged us. Which meant more days in the hospital, but I was not going to go home and not have a nurse on call when I needed them.

I remember making all these decisions with overwhelming peace. It’s crazy to say, but I never remember second guessing or questioning myself once. My parents who stayed with us the whole time, never doubted or questioned. And I believed my mom when she told me that she didn’t think the doctors and nurses knew how to react – but until I started reading over my journal this past week did I realize how adamant and persistent I was.

After six months in my arms, and two weeks of major soaking in every single bit of her, when the house got quiet, this role was a hard one to silence. And now that she is in the arms of Jesus, I find that my passion to advocate for those who aren’t being advocated for, is always on the tip of my tongue- which I have to ask Jesus to muzzle my mouth when things don’t need to be said. I try to hold back my words, my tears, my frustration. It’s instinct to be a researcher, caregiver, and medical record file keeper.

Truthfully, the bumps that life has provided, the valleys I have waded through, the longing of wanting to be a mommy all my life, and the waiting for her arrival- all prepared me for these moments. No question. No doubt – All Glory to God! I stand in awe! I am grateful for the feisty advocating spirit he wove in me- my prayer that I use it for His Glory and Good and not my own. And this lesson I also learned from the parents that I am so grateful he entrusted my brother and I to.

Think about it: What’s a life “mile-marker” or “bump” that has changed or pushed you?

Life book of the week: Household of Faith: Practicing Family in the Kingdom of God, by Emily Hunter McGowin. I just finished reading this book. And what I like about it is, it brings faith and family back to the basics- solid Biblical truths. The Bible doesn’t change- our culture and world does. That doesn’t mean we conform, but the call to care for “the least of these”, “talk about these things” in your home and to the generations, to rest. It seems so simple- but we have to slow down, make it a priority, choose Him as the center. Also, interestingly, there is not an outline of a “traditional family” as Americans would claim there is in the Bible- the Bible only defines the character and conduct of each individual in the family. I encourage you to take a look.