How can I not help looking at other girls and thinking, “I wanted a daughter to grow up into something like that”?
How can I not help looking at babies that are the same age as Isabella and think, “she should be doing those things by now.”
How can I not help but look at younger babies and see how developmentally far ahead they are?
How can I not help but look at other pregnant women, and think, “Maybe she will have a special baby too?”
How can I not help but to feel shame upon admission of some of things that pop in my head, such as knowing that I LOVE ISABELLA, but, I am not completely over the disappointment (not her fault, I’m not blaming her, there is no one to blame really), and therefore I find myself that I am not head over heels in love with my very own daughter just yet.
How can I not help but to compare sometimes, to feel envy sometimes, to still feel pity for myself sometimes?
How can I not help but to feel a pinch in my heart for the inquiries of the many doctors we’ve met, or with things that should fell neutral like filling out forms and checking boxes at a doctor’s clinic?
How can I not but sometimes help to have to put on another persona when I do IEP meetings and remember to conduct it as a teacher and to keep it professional and feel that detachment to how close I really am to that whole IEP process?
How can I not but help to feel a sting when I work on my daughter’s scrapbook and scrounge for something to write about the things she can do month per month when she has not gone pass the 0 to 3 mo developmental range and her skill gains she has made are only for the “well-trained eye”?
How can I not but help to be cynical about the neutral well meaning comments and inquiries of people that know about my daughter? Or when you see someone approaching and they have that look and you just have to be ready to dodge the questions because you’re just sure that they are coming.
How can I not find it sarcastically funny that I have become a familiar face at the pharmacy, or having my voice being heard on the other end of the line at a doctor’s clinic?
How can I not but help to keep trying to use humor as a coping mechanism trying to find the funny in every situation, and yet catching myself sometimes go "hahahhahaha, well, wait a minute, that's not really supposed to be funny?" and then I laugh again.
How can I not but help to sometimes feel sadness come over me whenever we pass through the girl’s clothes section at the mall? That there is this aching in my chest just looking at baby girl clothes.
How can I not but help to feel guilt every time I need to lie to a stranger about my daughter’s real age when they ask? And to try to make sure that I have not told that person that my daughter is 3 months old for the past 3 months, such as the lady at the grocery store, who started wondering because she gave me that quizzical look?
How can I not but help to feel alone sometimes…. To feel that nobody understands, to feel that I do not get the emotional support that I need, even when I am already “screaming” for it? Or to feel alone and yet not wanting to be helped or supported?
How can I not but help to try and work through all this uncertainty and the not knowing what to do?
How can I not help but to go through waves of grief, even if they further spaced apart, less intense and more brief?
How can I not but help to shed some tears as I type this down?
How can I not but have to force to help myself every time I hit walls of moments like this?
How can I not but help to just keep on holding on to hope, love and faith and praying to god to help me through this, because god is really all I have… my refuge, my strength, my deliverer.
And although, I have come this far, when 11 months ago I thought id never ever bring myself to get to smile genuinely ever again, I know there is still a long way to go, how can I not help but to sometimes doubt if I am in a way making progress in this whole things taking time, things being a process, things coming in stages, taking things one day at a time deal?
How can I not help but to sometimes just put a mask on, feign being fine, and drown myself with busy work, so I don’t wallow in that dark pool that I have most challengingly brought myself to emerge from several months back? Because it seems that it works and I actually catch myself, hey I’ve been feeling alright this past couple of months.
How can I not help but to give in sometimes to the many complex emotions, such as right now, just to feel that cathartic release.
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4 comments:
How can I not help but cry as I read your blog, knowing that I too often feel every single emotion you just expressed?
How can I not help but sigh with a sense of honest guilt that, like you, there are days when I am just waiting to feel that unconditional feeling of love for my daughter? Rid myself of my anger over the diagnosis of the syndrome? See other little girls and not want to cry?
How can I not help but want to fly across the country right now to give you a big hug, tell you that it will be all right...that our girls are going to be alright...and reassure you that you are not alone?
How can I not help but want to tell you that I love you, my friend, and we will survive this journey...TOGETHER! xo
You are not alone...
http://www.wolfhirschhorn.org/
((((((((hugs)))))))))
Beautiful, tear-jerking post. You are not alone, Madonna! Time heals some things, but brings new problems. More healing than problems, though, for sure. It takes a LONG time to adjust your sense of reality to being the mother of a baby with such a complicated syndrome and you don't have to rush that. Getting her diagnosis so young is harder (we didn't have one until 2, so I can't relate) since you're thinking about delays and problems instead of having time to just bond with your baby. but don't feel like you have to be positive all the time. This is so, so hard. There are so many joys, but perpetual newborn-hood takes its toll, that's for sure. You don't owe anyone any particular attitude, just be true to yourself. If you've been feeling pretty good lately, you're doing something right.
((((((((hugs)))))))))
Beautiful, tear-jerking post. You are not alone, Madonna! Time heals some things, but brings new problems. More healing than problems, though, for sure. It takes a LONG time to adjust your sense of reality to being the mother of a baby with such a complicated syndrome and you don't have to rush that. Getting her diagnosis so young is harder (we didn't have one until 2, so I can't relate) since you're thinking about delays and problems instead of having time to just bond with your baby. but don't feel like you have to be positive all the time. This is so, so hard. There are so many joys, but perpetual newborn-hood takes its toll, that's for sure. You don't owe anyone any particular attitude, just be true to yourself. If you've been feeling pretty good lately, you're doing something right.
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