Fear Not

I don’t remember where I was, but I do remember the rush of water going into my face, and in my mouth. It prevented me from breathing and I could feel my heartbeat in my chest while I was sleeping, which thankfully woke me up. Unfortunately, as I fell back to sleep I went right back to the water rushing in on me. I could see it and feel it overpowering me, so much so, that I once again couldn’t breathe, and thankfully this time I woke up for good.

I wondered for the first hour of the day what the hell that was about, but as the nerves started to set in about Eli’s appointment with the surgeon today it became evident that so many things have been smothering me lately and at times I have felt it hard to just breathe through them. I’m drowning.

For the last few months Eli has been going deeper than he ever has with his feelings, emotions and questions. It’s so much more than asking if God will heal him, although that is still a question on his heart. It’s those questions that you hope don’t come but when they do, you really have no answer for. You try to be gentle, yet honest without crushing a dream or a vision. I’m drowning.

Eli recently downloaded the driving permit app on his phone because he wants his permit… of course he does. The kids he was once friends with drive, his brothers drive and he wants to drive. We talked about this being a slim possibility but not wanting to rain on his parade, I left it at that. I mean what else can I say. We know he will never drive BUT is there anything wrong with him learning the rules of the road? I say no! I’m drowning.

Recently someone talked about their loved one being in assisted living, a place that you can go when and if you get older, if you need the kind help that family might not be able to provide on a daily basis. It can be great, but it can also be scary. Now imagine thinking of the future, for your own kids, which I don’t like to do. What happens after high school? There is no thought of college like their peers, and the worry about what kind of job they can get (without you being by their side) is overwhelming. Thinking of what will happen to your TWO special needs children when the day comes that you will no longer be here, or how will you survive if they go first. Which one is better, not that you even want to think of that possibility, but these are the things that you think about. Neither one is easy and I feel like I’m drowning.

Now today we had Eli’s one year post op and I woke with a sick feeling. Not knowing if some of the things we see, or don’t see are because we aren’t working with him enough, because of the atrophy in his legs or simply because of MLD and how it continues to affect him. After some X-Rays and a nice long chat with the doctor, we learned that Eli’s legs are still straight, the titanium is still holding him together and orthopedic wise, he is good to go!!

Unfortunately, some of the issues, I don’t know if they will ever change. Maybe I was naïve, my vision so great that I didn’t want to let anything get in the way of that . Maybe I believed in a miracle that he deserved more than anyone I know. I don’t know what the answer is, but I do know that we will keep working, praying and believing that things can still get better. The thought of wondering if we did the right thing scares me and when I think about it too much I feel like I am drowning.

I think I know the message of my dream now that I have had time to think about it. It is just what it felt like in those wee hours of the morning when not feeling like I was able to breathe woke me up. I’m drowning in the darkness of my thoughts, and the only way out is through.

It’s off to Italy in a little over a week. The last visit of the trial. Lots of tests and hopefully lots of answers. Knowledge is power and no matter what we learn, we can use it going forward to help keep us from another reason to feel like we are drowning, because it’s not always water that makes us feel this way but lack of control.

I refuse to succumb to all these things that weigh me down because I BELIEVE in Gods plan, and as one of my favorite quotes says “ when you feel like you are drowning, don’t worry, your (MY) lifeguard walks on water.

~ by Rebecca on April 5, 2023.

Posted in Along the way, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, anxiety, believe, challenge, changes, day by day, drowning, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, God, God is my lifeguard, gratitude, Hero, hope, journey, joy, learning, life, lifeguard, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, sadness, scared Jesus, sobriety, sorrow, special needs, strength, trust, warriors, water