I had been on a journey as a special needs mom for 16 years when that journey took a left-hand turn and fell off the rails. Throughout Oli’s life I have learned so many things, but nothing I learned could have prepared me for what would happen to her in November 2023.
Being a mom to a child with extra needs, or at least the kind of extra needs that Oli had “before”, is nothing like being a mom to a child who is medically fragile or a child with a chronic illness. There is no comparison. Basically, I knew that Oli was different and needed extra help, but I would always describe her as having extra needs but being 100% healthy. I always included that last statement and felt true gratitude for that fact. I knew that she/we were lucky that she had no medical issues. But that was “before”.
Now life is defined as “before” and “after”. Life with Oli has kind of always been defined as “before” or “after” ever since she was born. There was my life before Oli, and my life after Oli. Now there is life before November 2023 and life after November 2023. Although life before and after Oli was certainly difficult at first and we faced many, many challenges, I feel like almost all those challenges lead to beautiful growth and development for me personally. I changed so much after Oli and although not all of it was positive in the moment, it always turned into something positive. I find this experience to be similar.
Our first journey, after she was born but before Nov 2023, was a road paved with uncertainty and the unknown and a small measure of fear. I didn’t know anything at all about blindness and I didn’t know then that she would have developmental delays. I learned though and we grew together, me leading the way and stumbling but always remaining upright and able to carry Oli through difficult patches. The fear turned to confidence, and I became more and more secure in my abilities to help and care for her as the years passed.
“Before” I never worried about losing her.
The small measure of fear that I felt before now has grown into a magnificent, all-consuming giant monster who is crushing my body and sucking the air from my lungs. The terms chronic illness, medically complex, and medically fragile now pepper my language when describing my girl in her current state. She is no longer healthy. She is sick and she is in pain, and she is suffering. That is my truth, no matter how much I don’t want it to be. However positive I try to be, however I try to spin what is happening to her, the truth is, she is suffering. There is no denying that anymore.
She is in and out of the hospital so frequently now that it feels like the hospital is her primary residence. It’s much rarer to have her at home. And every time she comes in, she leaves a little bit worse for wear. She comes in and gets examined, poked, prodded, x rayed, Cat scanned, turned, rolled, lifted, and leaves with new battle scars, a new diagnosis, a new symptom, a new medication, a new medical device… and new trauma.
Now a touch on her forearm and the feel of a rubber band elicits an immediate increase in heart rate and a quick intake of breath as she has learned exactly what this means.
Pain.
The sound of the portable Xray machine rumbling down the hall causes her to visibly shake.
Rubber gloves pushing on her abdomen immediately brings her knees to her chest. She tries her very best to protect herself in the only way she knows how because in some cruel twist of fate she was not given verbal words of protest to speak into existence. However, in that cold, sterile room those unspoken words are heard by me in a way that only a mother can hear. I feel them in my soul, and it rips me to pieces as I grip the side rail of the bed lest I physically push away the offender.
Stop hurting her!
Another silent protest and unspoken words that never leave my lips because what I know, and I’m not certain that she does, is that they are trying to help her.
Unfortunately, we know in the medical field that most “help” comes with a measure of pain. For Oli most, if not all, of her help has included a lot of pain.
I thought this last hospital stay was going to be it for a while. She was so happy and comfortable when we got to leave here the last time. She was smiling. She was smiling a lot. A week later those smiles gave way to tears. And those tears became more and more frequent. Eventually all she wanted to do was lay down almost completely flat in the bed. She would no longer even sit in her reclining chair.
I thought that when we came in here again they would try to find the source of her discomfort. One Xray and one Cat scan later and the mission was abandoned, and her pain was dismissed. A partial bowel obstruction that was found this time no longer elicited the same measure of urgency or attention. New lesions on her liver that were never there before, were first brushed off as “incidental findings” until I pointed out that they were not seen on the previous 7 CT scans. Not able to do an MRI because of her spinal fusion rods, the search for answers for that too was just abandoned. Now I guess we’re just supposed to accept that not only can Oli no longer eat or drink but now her new normal also consists of the inability to sit up without pain.
Why is this ok? If Oli could speak or look them in the eye, do you think this would be the case?
I hate the thought, but I have this feeling in my heart that she may be thought of as less than a person because she cannot voice her complaints, cuss someone out or get up and leave.
I’ve had this feeling ever since she got sick. It’s like, yes, she’s sick, but she’s a special needs child so there’s a feeling of complacency and missing a sense of urgency and importance. Sometimes I get that feeling with other people too. Non-medical people. It’s almost like special needs=illness or medical complexity. I’m here to tell you that it doesn’t.
I was in no way prepared for Oli to become ill. I don’t think any parent could prepare themselves for something like this. My kids weren’t prepared either. Keely, who is 7, has continued to ask me if Oli is going to be okay or if she is going to die. I’ve always reassured her that Oli is going to be fine but as time passes and she continues to decline I’m no longer comfortable saying that. The new conversations may have to include the fact that I just don’t know. I don’t know if Oli is going to be okay. I can’t even type those words without tears streaming down my face. How am I ever going to look my children in the eye and say those words?
Urgency from the medical team or not, I will continue to fight for my girl. I will advocate and be loud and pushy and questioning. I will also be a team player and despite numerous medical errors, one of which she is dealing with right now, I will continue to try and have faith in a medical system that I am severely disillusioned with. I understand that I must watch everything, I must question everything. I must double check and verify. And when something goes wrong, I will take the blame for it because I should have been paying better attention. I should have known. I now take on this responsibility and I take it on willingly because despite my lack of faith in the overall healthcare system, I have the utmost faith in myself. I have that faith because I’ve seen how the last 6 months has changed me. I never knew how strong I could be until I stepped into these new shoes that were way too big 6 months ago but now are beginning to fit just fine.
I'm fine, but my mommy has issues! 