Sighs...

I have had a series of okay days wherein I feel like I’m moving forward, but today was quite a little different… sigh…

Perhaps it’s the finding myself moving forward and realizing that these emotions I’m feeling right now is making me make backward steps… will I find myself making backward steps every now and then… sigh…

Perhaps it was because of the girl who is a 5th grader who helped me open my classroom door. When we smiled at each other and made eye contact, all I could think about was the daughter that will never grow up to be like her… sigh…

Perhaps because I overheard a co-worker talk about how she is having a hard time with her teenage daughter and all I could think about was wanting to trade places with her and be able to fight with my daughter too when she becomes this difficult and egocentric teenager…sigh…

Perhaps it was when I was opening the mail about my son’s college fund and realized that I do not need to get one for my daughter because, realistically, she’s not going to college… sigh…

Perhaps it was because instead of getting my daughter Isabella a college fund, I thought of getting her a child life insurance that she can cash out (all contributions only) if she does not die when she reaches 18… but if she dies we get some money, but that would almost seem like I was wishing/thinking she’d be dead before she reaches 18… sigh…

Perhaps its because I saw her christening gown hanging in the closet… the 4month sized christening gown that will still be too big for her even when she becomes a half a year old… sigh…

Perhaps its because a dark thought crossed my mind that she might get to wear this christening gown on her funeral… sigh…

Perhaps because I’m constantly scared that God will take her away from me anytime and that I find myself paranoid, or just waiting, or constantly being on the look out for the day that it will happen…. sigh…

Perhaps its because I feel restless thinking that more bad news about her condition will be coming our way… sigh…

Perhaps its because I constantly need to dodge queries about how the baby is doing or how I’m doing because avoiding this discussion seems to be the more emotionally healthier option for me… sigh…

Perhaps because I caught myself thinking that she’s almost three months old now and although she is gaining some skills, I also know that she already is behind in her developmental milestones, and although the skill discrepancy is not yet that wide, I know for sure that it will get wider…sigh…

Perhaps its because I already know, and research literature supports it, that speech and language will be a challenge for WHS children, but with my daughter having hearing loss, all the more that this very important developmental area becomes compromised… sigh…

Perhaps its also because I already know, and research and literature supports it, that mental retardation is expected with 100% of the WHS cases, but with my daughter having partial agenesis of the corpus callosum, then her cognitive development is all the more significantly impaired… sigh…

Perhaps it’s the constant worry of what the big unknown future will be like for her, for our family… sigh…

Perhaps it’s my impatient anticipation to have my tears of grief and worry be replaced by tears of joy… sigh…

Perhaps it’s the constant reassuring of myself that things will be okay, that she will be whoever she is going to be and she’s going to be fine… sigh…

Perhaps it’s the constant letting go of things that are considered the “norm”…. this constant “letting go” can get tiring, because once I find myself in a state of rhythm, a new worry comes along… and yes I need to let go of that too… sigh…

Perhaps its because I’m just trying to get by day by day putting on a smile, faking the happiness, feigning strength… because maybe by faking it I can eventually make it… sigh…

Perhaps its because I love Isabella so much, but this love isn’t enough to make the syndrome, and all the complications that come with it, go away… sigh…