From the very beginning of Sonzee's life, Sam and I have always been very open with her siblings about everything going on. It would have been extremely challenging to not be when from the start I did not come home the first week after she was born because the hospital allowed me to stay in an unused portion of the maternity ward while she remained in the NICU. Then just a few weeks later we found ourselves taking Sonzee to the pediatric hospital where her seizures were confirmed. The hospital staff made an adorable epilepsy bear, complete with the EEG leads, gauze, and colored string so that our then 5-year-old, 4-year-old, and 21.5-month-old would not be scared to see her when they came to visit. We did our best to answer their questions in age-appropriate ways and when they left us stumped or after I winged an answer, I would refer to child life to help me out and or let me know if I answered them appropriately.
During one of Sonzee's lengthy stays when she was 15 months old, her oldest sister did not want to visit her. We respected her decision but always gave her the option every day. It is a tough place to be as a parent because there is a fine line of reality and the black and white fact that any of the hospitalizations could be one way. I was so worried that Sonzee was not going to leave and then her sister (who is extremely close to her) would feel this unnecessary guilt for not visiting. But how exactly do you explain to a young child that her sister might not leave the hospital without causing nightmares and unnecessary fears? When you become a parent, who even thinks of this under their list of top 10 potential parenting dilemmas?
As Sonzee has gotten older, the hospitalizations have become so routine, her siblings get disappointed, more than anything else, that the family will be split until she returns home. They do not really understand or grasp the severity of what us taking Sonzee into the ER really means. I think I am okay with that in general, after all, her siblings are now only 9, 7, 5, and 1, they should remain children as LONG as they can be, as long as every other child does. But their life is not like that of every other child, there are just sad realities that come with this life. Even though our children see Sonzee's daily struggles and know there are children "like Sonzee" who have passed away and have even met siblings of those children, they are still very much children, and still very much innocent.
There is a part of me that is relieved this is the case, and then there is a part of me that hurts because at some point in their lives it will make reality more heartbreaking. On Sunday my oldest son asked how Sonzee would give herself medicine when she is older. I let him know that she would not be able to live alone and that someone would be doing her medicine for her. He took a second to process what I said and then inquisitively stated, "oh, she won't?". To which my oldest daughter happily replied that she is going to be taking care of her, and she will be living with her. My mind simultaneously gracious at the offer seriously wondered if I wanted her to put her life aside to even take that on. Then my middle daughter interrupted that thought to ask how Sonzee was going to have a baby, and I let her know that she would not be having a baby. My then oldest daughter paused for a second and with a surprised reaction said, "oh she isn't? well, then how is she going to be a mom?". I took a second to process where this conversation had just gone and simply replied that she will not be able to be one and then I asked them to make sure everything was cleaned up before we headed out to afternoon activities.
I texted two of my go-to's for these types of conversations and I mentioned that what broke me more than anything is that they really do not even comprehend what the most likely reality is going to be. I have honestly not even thought far enough ahead to have even considered Sonzee as an adult. I know there are many parents who might disagree with my thoughts, but at least once a month I post a prayer request for a family who has to bury their CHILD. It is a reality that accompanies our life. Whether I say it aloud or not, it does not change the facts of Sonzee being medically complex and that her body is unable to function in a typical fashion. Yet, to be brutally honest, the most challenging part of this reality for me to wrap my mind around, is how this eventual inevitable outcome will affect my other children.