Monday, July 2

a month down the road

so here we are, one month later. so here's an update on where i am currently. 

first, i am thankful. i am thankful for the love and support of friends and family. i am thankful, as i hear stories of people who have lived their life this way for years without knowing, that we do have answers. i am thankful that we such easy access to services that will help hiba and our family. i am thankful that God has a plan and that He has let me see some of it so i am not so stressed out.

and then, i'm overwhelmed. a month down this road, i am realizing that it is a loooooong road. and i am realizing that we are at the very beginning. we have filled out the paperwork. we have gotten hiba signed up for pre-school and therapies. which is a great start, but that's it - it's just a start. immediately, we've got intake meetings, plans to write, assessments to do. and that's just for this year. then we've got this first year of pre-school, therapy, groups. and then we've got next year. and the year after. and this year isn't going to fix everything for those next years. hopefully this year will help build good habits, ease anxiety, etc., etc., etc., but - this thing is forever. and a month into the journey, that is starting to really sink in.

a lot of times i feel like i'm living someone elses life. as much as i talk about this diagnosis or blog about it or whatever, anytime that i am actually doing something with it - like filling out paperwork, reading about high functioning autism, setting up therapy, making phone calls - it's like i am someone else talking about someone else. surely this is not me and my daughter, right?

oh, but it is. and that realization is getting harder to swallow as time goes on, i think. maybe it's finally just becoming real. either way, it's a very odd feeling when i am actively doing things to help hiba.  

i don't know if hiba's particularities have increased in the last month, or if i am just more aware of them. i don't know if she knows what is going on and is almost "living up to our expectations", or if i'm just more aware of the fits she throws. i don't know if she is all of a sudden a much pickier eater, or if i am just making all the wrong foods. but either way, this month has been exhausting. jason pointed out that one thing he was not prepared for as far as parenting goes is how every single thing is such a big deal. like we say to hiba or matthias "go get your shoes", and instead of just doing it, it is either really exciting or really annoying or something. just a big reaction. and everything, from the kids perspective, is really dramatic (or so it seems to us).

well, that's kind of how i have felt this month. every time i tell hiba something and she doesn't respond calmly, i cringe and get ready for a fight. every time she throws a fit about something, it's emotionally trying to me because i am trying to a) get her to stop throwing a fit, b) keep myself from throwing a fit, and c) figure out if her fit is her being a four-year-old or her being a four-year-old with high functioning autism. and i'm trying to do all those things in about 3.2 seconds. every time i try to make a plan, whether it's an outing, errands, dinner, whatever - i ask myself how this is going to go for hiba, what things do i need to think about to minimize stress for her. and that is getting so. very. exhausting.

i'm also seeing my shortcomings - a lot. and i don't say this so that people will tell me what a great mom i am or how i'm perfect for hiba or anything like that. (but you can go ahead and say those things anyway. ha.) i just have seen how short my temper is, how selfish i am with my time and my desires, how much i really want things to go my way, how i have not been as kind to hiba as i should have at times even when i thought there might be something different about her, how i don't have the energy to love both my kids as much as they should be loved, how i don't have energy to love my husband as much as he should be loved. and i know that is a bit dramatic - but, i have seen bits of all of those shortcomings over the last month, more than i have seen them in the past. i think part of it is coupled with being overwhelmed and part of it is coupled with this being a new forever, a new reality of the way our life will be. i have seen how much patience and intentionality it will take parent hiba, and frankly, some moments i just do not think i have that.

and then i've seen a lot of grace. i see how God is gracious in the amount of love he has given hiba, matthias, and jason. i see how things have and are continuing to work out for us. i see our friends loving us and loving her. i see how God gives me the strength when i need it and the rest that i need as well, as long as i remember to ask for it. last saturday was a hard day. i can't exactly put my finger on it, but it was just tough. jason was working in the afternoon and i was absolutely dreading the evening. but then, hiba, matthias, and i all took naps till about 4:30 p.m., had a great time at dinner at chick-fil-a, the kids ran around and played nicely on the play set till after 7, and then were super sweet and cooperative for baths and bedtime. and there's been a lot of times like that - where i'm just at the end of my rope and then i look up and grace is right in front of me.

as far as day to day life goes, it's really about the same as it was a month ago. the kids are still in daycare. i'm still working. jason is still working. we still go to the pool. jason still plays rugby. we still go to church. i still go out with friends. the kids still love having playdates. life just goes on. we're kind of stalled as far as services go - we have signed up for what we need and are just waiting for august to get here, which is when hiba will start at easter seals. so we haven't really started doing anything differently. in the meantime, we're just waiting and living life. looking at us from the outside, we probably don't look much different than we did on may 30. and in a lot of ways, life is just the same. hiba is still herself, we are still our family, day-to-day life goes relatively the same. i keep saying the only thing that has changed is that now we just have a little more information. but, oh. how much that "little" piece of information has made such a big difference.

1 comment:

Dorr Admin said...

I'm praying for you, Sarah, and your beautiful family.