This Little Light of Mine

18: 𝐌𝐲 𝐁𝐚𝐛𝐲'𝐬 𝐇𝐚𝐝 𝐀𝐥𝐥 𝐒𝐡𝐞 𝐂𝐚𝐧 𝐓𝐚𝐤𝐞

November 23rd, 2031

Bennett had officially made it a few months past the one year mark after her diagnosis. Tim and Lucy felt as if they were the luckiest parents on the planet, getting these extra months with her. Opting to forego any further treatment options was a tough decision for them to make, but now, they were fully confident that they had made the right choice for their daughter.

However, it was evident that things were changing for the six year old. She was significantly weaker than she had ever been, and they could see it. Her hearing had weakened immensely, and her walking has gotten significantly worse. Her parents knew that DIPG was slowly stealing their baby girl from them, and there was nothing that they could do anymore.

Over the following few days, they could simply watch as their six year old worsened and weakened. While her coordination and balance had been off, it was only getting worse. Of course, they expected this, but no one wants to watch their child worsen and practically deteriorate in front of their eyes. Headaches were a daily occurrence for Bennett, and sometimes it seemed as if Tim and Lucy couldn't get the pain medication to work for her. But, Max snuggling with her and keeping her company would typically take her mind off of it, as much as it could.

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November 26th, 2031

A few days passed, and Bennett had fully lost the ability to walk. She now had to be carried and rolled in her wheelchair everywhere they went, and it wasn't just her personal choice any longer. Then, Lucy and Tim had to make another difficult decision in their daughter's care. With her worsening over time, they had officially made the choice to put Bennett on hospice. That was never anything they wanted to do, but they knew that it was the best choice for their little girl. The hospice nurse that was assigned to them was one of the kindest ladies they had ever met. She was very thorough and descriptive, and walked Bennett's parents through each step of what she was going to do or bring to help keep Bennett comfortable.

The visits from the hospice nurse involved the typical checks a doctor would do. She would get to the house, check in with Tim and Lucy, and ask how Bennett was the night, or day, before she was there. Then, she would do the standard checks on the six year olds vitals, charting each one. She would listen to the girl's lungs, and make sure she could still breathe fine.

That specific day, the nurse did her normal checks, before she popped a small smile up to Tim and Lucy. "Well, she sounds great. Her lungs and breathing still sound really good, which is great for this stage." She told the parents, as Tim and Lucy each let out a sigh of relief. "Oh that's great!" Lucy said. "But, I know last night was a little rough for her, so I want to go ahead and get her settled with oxygen. We won't start it super high, since she's doing fine for now, but it'll be good to get her accustomed to it before we need it all the time." She told them, as both of the parents agreed.

That visit also gave Bennett's parents some extra equipment they may use if they need to, but they were never required to. It was just so they would have it, should Bennett need it, or they choose to utilize it.

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December 2nd, 2031

December rolled around and Bennett had been doing about the same. There hadn't been many changes with her, until now. Of course, she had her high moments and her low moments, but she had been having plenty of days where she tended to have more energy in the mornings, back to how she used to be.

Now, though, things were different. Tim and Lucy had gone almost four days since Bennett had that type of energy. And now, her voice was hardly there. Tim and Lucy noted that they could speak to her, and that their daughter could "talk" to them, but there would be no voice that followed her lip movements. They were truly missing Bennett's voice, always noting she had the sweetest voice they had ever heard.

They had also been forced to increase Bennett's oxygen. She had been doing fine, but now, she was having more trouble exchanging air the way that she should. On top of that, she was barely able to eat and drink, another thing DIPG was slowly stealing from their little girl. They were, however, thankful for the few crooked smiles they could get from her, and treasured each one.

Every moment of every day, Max was with his girl. He would only part from her to eat or go outside. Apart from that, he would remain posted by his girl wherever she was, and neither Tim or Lucy could coax him away from her.

Lucy was thankful for one extra positive thing. That day, she was able to wash Bennett's beautiful hair and braid it. By this point, Bennett's head was extremely sensitive, and the little girl would put up a fight to simply have it brushed. So, her mother gently washed, brushed, and braided the six year old's hair, thankful for such a good moment, in the midst of all the bad ones.

December 15th, 2031

Bennett had made it almost eighteen months past her diagnosis. For a child with DIPG, this was monumental. Her doctor had originally slated her to survive no more than twelve months, and she had defied the odds of that. However, Tim and Lucy could see the struggle. Everything was practically impossible for Bennett now. They knew she was tired, but they also knew she was continuing to fight, as she always did.

She was still able to move her mouth, but at this point, it wasn't even enough to form words. She made little to no noise, and eating something as simple as yogurt was a huge challenge.

On top of that, her heart rate was continuously dropping, and Tim and Lucy could tell that she was tired. When the hospice nurse would visit, she would note that Bennett's vitals were okay, other than her heart rate.

Tim and Lucy knew they were nearing the end of Bennett's journey. It pained them to even think about it, but they knew the reality they were facing. They had hoped for one more Christmas with her, though by now, they weren't sure they were going to see that through.

The rest of their day involved them snuggling close to their little girl, telling her how much they loved her and cared for her, and they would continue to do just that for however long they had her there.