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| Ella playing by herself in the basement |
The small sticky pads that sit under Ella's eyes, covering and protecting her skin from the straps of the bi-pap mask, had one large drop of moisture on each of them. The moisture came from tears streaming down her face, being absorbed by the protective pads. The tears a result of fear.
Fear of being alone.
Ella has developed this fear as of late; not wanting mommy or daddy to venture too far from her; wanting to sit on our laps more often; not wanting Ava to climb up into the top bunk...out of sight. She simply doesn't want to be alone.
We know that this fear is something that most kids go through. The timing, however, promises to make things a bit more challenging. We are set to close on our new house in late April. Once that happens the kids will each have their own bedroom. They know this. Ava, being six years old, is looking forward to having her own space; Henry has had his own room for quite some time now and quite honestly is looking forward to everyone having their own space so he doesn't feel so isolated from the girls. Ella, on the other hand, seems to be approaching this transition with trepidation.
The other night, when I went into her room as she was crying about being alone, I couldn't help but think about what it must be like for her. There she sat, on her bed with her fears. Without the ability to move herself; to seek out a person to cuddle with, to take it upon herself to solve her issue in a way that most kids can and do. She was just sitting there, in the same position that Lindsay had placed her moments before, with tears rolling down her cheeks and being absorbed by her sticky pads. All the while saying she doesn't want to be alone.
It's hard for Ava and Henry, too. For they are mobile under their own power and move freely about the house without a second thought. Lindsay and I find ourselves telling them not to leave Ella by herself. In essence we are telling them that they, too have to remain in a certain place because of SMA. They often oblige, yet sometimes resist...we understand and adjust accordingly.
We know this fear will dissipate. We know it might take a bit longer to do so simply because Ella's ability to confront her fear and then do something about it in terms of physical space is hindered by SMA. As so many parts of her life it will just take longer, look a little different, require extra help from us, and work itself out.
As we go through this with Ella we hold fast to our promise that, "We are not here to save her, we're here to take care of her and keep her alive until they find cure."
