I will preface this entry by saying that as I've mentioned before, I am usually, in all honesty, just winging it as I go. That's just my own personal style and what works best for my own Uniquely busy life! So, you may notice that I can be long winded, full of many words, and a tendency to ramble on. I am literally writing what I'm thinking at the very moment I'm writing it, and going whatever direction my thoughts begin to lead me. I am,in the very true sense, sharing my very thoughts and feelings out loud as I go. It's one of the reasons writing is in its own way always been a therapeutic outlet for me. I'm not one to often discuss my struggles out loud. I usually reason them out with myself, in my own head, give myself a pep talk and continue on with no one really being much the wiser. It's just my way. Don't get me wrong, I am an open book if one should start asking me about my life. I never mind sharing information that may in any way help those on a similar journey as my family or discussing how we have dealt with the negative aspects. It's just that I dont typically like to dwell on the negative aspects of our situation myself because as is quoted above, I do my very best to focus on the positive and not let myself get caught up in the things that are beyond my control. Those things are just small, though sometimes unpleasant, minor details that I refuse to let take control of my overall story. It doesn't mean they don't get me down at times, or that I never have moments of feeling completely overwhelmed , but I do my best to take a breath, refocus and remember that one bad moment doesn't have to mean a bad day and one bad day doesn't make a bad week, and some bad times dont make a bad life.
However, that being said, I am going to relay some details about a recent day, not necessarily all that uncommon,or even all that rough in comaprison to others, in effort to help drive home my point of how my unique journey has made those above quoted words so strong in me. I apologize for the unpleasant details I am about to share, but if I'm going to be completely raw, honest, and REAL....well, this is my life....some days, not all! 😜
Last week, we will say Tuesday, though my brain has issues keeping days straight so who knows! Anyhow, Tuesday was just an ordinary day, with ordinary plans of breakfast, schoolwork, cleaning and play, nothing major. I woke up late because for some reason I've been having insomnia last couple weeks. It was fairly quiet when I awoke, which I chose to enjoy instead of dragging myself out of bed to go get the kids and start our day right away. This plan often backfires on me, and I should've known better ....really I did, but I chose to ignore it! My oldest daughter, as many of my readers already know has complex special needs due to diagnosis of Angelman Syndrome which has meant that many many skills and milestones have been extremely delayed due to motor control, balance and coordination, and processing issues in addition to being non verbal and dealing with difficult to treat seizures. This includes a delay in self help skills such as toileting. One of the largest victories our choice to begin homeschooling has brought is in that exact area.....3yrs ago we said goodbye to daytime pull ups finally at the age of 7, and now only use nighttime pull ups for sleep because that unfortunately is a little ways off still..... though we WILL get there! Well, all this now explained, back to Tuesday morning
....I woke up late, and while having made huge progress, I'm aware that my daughter is still prone to some issues with "holding it" and this is especially true in the late morning as she requires me to come and get her out of her room and assist her downstairs. Well, basically upon my arrival at her bedroom door, I instantly knew it was one of those mornings, an accident had occurred and let's just delicately say that it was not all "contained." Sorry again, but that's our reality some days. Anyhow, this isn't all too uncommon or new to me after many, many occurrences during younger years,although it is becoming much more infrequent,dare I even say very rare. I simply grabbed the sheet and blankets surrounding her (thanks to one of my Mom tricks of double layering the bed for such happenings)wrapped them around her and carried her downstairs to the tub where I unwrapped , threw the sheet and blankets into washer and quickly sprayed her down in the shower before letting her unwind and
relax herself (she is obviously uncomfortable when this occurs& I do me best to not embarrass her or make her feel guilt when she cannot always control it) in her most favorite Bubble bath! I washed myself up, and continued on as usual....onto breakfast making! The morning went by uneventfully as I got completely caught up in cleaning and organizing the kids rooms upstairs as they played. I should've been paying more attention to my daughters non verbal signals, but I was so distracted I didn't. I should've realized how much time had passed and made myself stop what I was doing and bring her to the bathroom regardless, but I didn't. (Looking back in retrospect, she had been subtly signaling me, but I thought she was just trying to trick me into stopping what I was doing and bring her downstairs to eat, as she does this often. It was not her fault, and I apologized profusely to her later on! ) So, much to my dismay I was called into my middle daughters room who had an idea what had occurred, and discovered that another "accident" had happened and shall I just say the carpet was slightly affected this time. (Again, I'm sorry to share these unpleasant details, but I'm doing so to express my point which I will soon share.) My cleaning project had to be put on hold for this new one, and I again simply carried her downstairs, into the bath for her and into the washer for the clothes. As for the carpet, nothing some detergent, baking soda and a shop vac couldn't easily fix. (try it! For heavy soils, simply wash as usual and then coat the area with generous amount of baking soda and allow it to sit for a couple hours before vacuuming it up. It absorbs all the moisture and odor for a deep clean!) The house at this point was full of a bunch of half finished cleaning projects as well as
new messes that had been made as I was attempting to finish the others, but it was lunch time by now so I made something quick for the kids, swept up beneath my daughter for probably the 5th or 6th time already that day as she leaves a trail of crumbs everywhere she goes. She still uses mainly her hands to self feed and I often allow her to roam about while doing so as it keeps her busy while I am busy! That's what brooms are for anyway right!? Since I'd been cleaning all morning, I decided we should probably get some school work done, so the half done projects had to wait a little longer, and we moved into our classroom to grab our books. My middle daughter sat and did whatever pages she could manage without my help, and my youngest sat tracing his letters, meanwhile I decided to try a fairly complicated multi step Math word problem with my oldest just to assess where she may be with that. Homeschooling has been an absolutely amazing, eye opening discovery for us when it comes to my daughters abilities and we are constantly left in awe and shock as we continue to discover how much is going on inside her brain all these years. I'm only just beginning to scratch the surface and find ways to let her finally show us , which will be an entirely seperate blog post of its own in the future. We have learned that she has processing issues and requires much more
time than an average person to sort through her thoughts and then control her body enough to express them. Well, fast forward probably half an hour after I read her the math problem aloud and explained what it was asking, I sat her back down with the same problem in front of her, and took out her iPad and pulled up the page on her communication app with numbers. I asked her to go ahead and answer if she knew it. I will leave the details of how this works for another time....the fact of the matter is she answered it! It was correct! At that moment the chaotic, mess filled day and feelings of disappointment and set back completely disappeared! That one single moment made the day amazing, awesome, worthy of celebration, and cause for joy!
What does any of this rambling about my day have to do with you and your life or with anything really !? It's all back to that quote at the beginning " take life day by day, and be grateful for the little things. Don't get caught up on what you can't control. Focus on the positive." That's it. THAT is exactly what my Unique journey with my daughter has taught me. No, life is most definitely NOT
always easy, or pleasant, and it can be messy, chaotic, disorganized, disruptive and catch you off guard at times. Sometimes I'll admit these moments and days get the best of me and I feel
overwhelmed with setbacks and it seems as if everything Id been working on is lost and we have taken a giant step backwards. Often times the pressure of knowing I am the main one in charge of the teaching and caretaking can begin to weigh on me. But, the thing is if stop and think about it for a moment I realize that
had we not come so far forward, we wouldn't have had any backwards steps to take in the first place would we!? Sometimes when days seem full of complaints, and rightfully so most times, I remind myself that the very things I am complaining about are among the very same things that I once only hoped for. In my case, it may be complaining and being upset over the "accidents" that occurred after so long without any. I stop and I remind myself that just a few years ago an occasional "accident" seemed like a dream and my daughter doing Math of any sort would've been met with complete disbelief and doubt. If I were to only focus on the setbacks and the cant's and the bad moments scattered amongst all the wonderful ones, then I'd miss just that. I'd miss all the wonderful beautiful and amazing moments. Those moments are the moments that matter and the only ones that count in the end. I realize that sometimes the tough moments and set backs are not within my control. Often times they are not even within my daughters control as she deals with a body and brain that do not always cooperate together and seizures and medications that can sometimes impair her ability to think as clearly on certain days. My heart breaks for her for those reasons, but I do my best to teach her by example that it's quite alright to make mistakes and have a bad day,and to just move on and enjoy the good times! After all she is the very one who has taught me just that! The moments I am ever so grateful for. To be honest, if not for the difficult moments I might not be as grateful for all the others, and for that lesson learned I am thankful. I know, after having gone through what we have been through with our daughter, that an accident to clean, or a messy house, or a chaotic day of appointments,or even weeks full of setbacks, out of sorts children,cranky days, and the like are nothing in the big picture. They are in fact a far cry from even being counted among the worst times. Trust me, as cliche as it may sound, I am well aware that "it could always be worse." I've had worse! Yet even then I realize it still could've been worse. We have had many scares over the years, and because of them I appreciate just how much worse things could be, and how quickly it can happen. Its because of this that I know the value of taking things a day at a time, enjoying the good moments within each day, and taking a deep breath and refocusing during the bad moments.
That's that! My wisdom for today, my pep talk to myself mainly, but if sharing it aloud can help anyone else...than why not! Really, even though I applied it mainly to my journey of raising a child with special needs, it can be adapted to apply to any situation in life and not just for Moms, but for Dads, and even those without children. Regardless of what difficult moment you may be going through, always remember to take it a day at a time. Find beauty in each day. Focus on the positive and try hard not to worry too much about the things that are not within your control. There is nothing you can do to change some things, and worrying over them will only stop you from enjoying what you can!
....I woke up late, and while having made huge progress, I'm aware that my daughter is still prone to some issues with "holding it" and this is especially true in the late morning as she requires me to come and get her out of her room and assist her downstairs. Well, basically upon my arrival at her bedroom door, I instantly knew it was one of those mornings, an accident had occurred and let's just delicately say that it was not all "contained." Sorry again, but that's our reality some days. Anyhow, this isn't all too uncommon or new to me after many, many occurrences during younger years,although it is becoming much more infrequent,dare I even say very rare. I simply grabbed the sheet and blankets surrounding her (thanks to one of my Mom tricks of double layering the bed for such happenings)wrapped them around her and carried her downstairs to the tub where I unwrapped , threw the sheet and blankets into washer and quickly sprayed her down in the shower before letting her unwind and
relax herself (she is obviously uncomfortable when this occurs& I do me best to not embarrass her or make her feel guilt when she cannot always control it) in her most favorite Bubble bath! I washed myself up, and continued on as usual....onto breakfast making! The morning went by uneventfully as I got completely caught up in cleaning and organizing the kids rooms upstairs as they played. I should've been paying more attention to my daughters non verbal signals, but I was so distracted I didn't. I should've realized how much time had passed and made myself stop what I was doing and bring her to the bathroom regardless, but I didn't. (Looking back in retrospect, she had been subtly signaling me, but I thought she was just trying to trick me into stopping what I was doing and bring her downstairs to eat, as she does this often. It was not her fault, and I apologized profusely to her later on! ) So, much to my dismay I was called into my middle daughters room who had an idea what had occurred, and discovered that another "accident" had happened and shall I just say the carpet was slightly affected this time. (Again, I'm sorry to share these unpleasant details, but I'm doing so to express my point which I will soon share.) My cleaning project had to be put on hold for this new one, and I again simply carried her downstairs, into the bath for her and into the washer for the clothes. As for the carpet, nothing some detergent, baking soda and a shop vac couldn't easily fix. (try it! For heavy soils, simply wash as usual and then coat the area with generous amount of baking soda and allow it to sit for a couple hours before vacuuming it up. It absorbs all the moisture and odor for a deep clean!) The house at this point was full of a bunch of half finished cleaning projects as well as
new messes that had been made as I was attempting to finish the others, but it was lunch time by now so I made something quick for the kids, swept up beneath my daughter for probably the 5th or 6th time already that day as she leaves a trail of crumbs everywhere she goes. She still uses mainly her hands to self feed and I often allow her to roam about while doing so as it keeps her busy while I am busy! That's what brooms are for anyway right!? Since I'd been cleaning all morning, I decided we should probably get some school work done, so the half done projects had to wait a little longer, and we moved into our classroom to grab our books. My middle daughter sat and did whatever pages she could manage without my help, and my youngest sat tracing his letters, meanwhile I decided to try a fairly complicated multi step Math word problem with my oldest just to assess where she may be with that. Homeschooling has been an absolutely amazing, eye opening discovery for us when it comes to my daughters abilities and we are constantly left in awe and shock as we continue to discover how much is going on inside her brain all these years. I'm only just beginning to scratch the surface and find ways to let her finally show us , which will be an entirely seperate blog post of its own in the future. We have learned that she has processing issues and requires much more
time than an average person to sort through her thoughts and then control her body enough to express them. Well, fast forward probably half an hour after I read her the math problem aloud and explained what it was asking, I sat her back down with the same problem in front of her, and took out her iPad and pulled up the page on her communication app with numbers. I asked her to go ahead and answer if she knew it. I will leave the details of how this works for another time....the fact of the matter is she answered it! It was correct! At that moment the chaotic, mess filled day and feelings of disappointment and set back completely disappeared! That one single moment made the day amazing, awesome, worthy of celebration, and cause for joy!
What does any of this rambling about my day have to do with you and your life or with anything really !? It's all back to that quote at the beginning " take life day by day, and be grateful for the little things. Don't get caught up on what you can't control. Focus on the positive." That's it. THAT is exactly what my Unique journey with my daughter has taught me. No, life is most definitely NOT
always easy, or pleasant, and it can be messy, chaotic, disorganized, disruptive and catch you off guard at times. Sometimes I'll admit these moments and days get the best of me and I feel
overwhelmed with setbacks and it seems as if everything Id been working on is lost and we have taken a giant step backwards. Often times the pressure of knowing I am the main one in charge of the teaching and caretaking can begin to weigh on me. But, the thing is if stop and think about it for a moment I realize that
had we not come so far forward, we wouldn't have had any backwards steps to take in the first place would we!? Sometimes when days seem full of complaints, and rightfully so most times, I remind myself that the very things I am complaining about are among the very same things that I once only hoped for. In my case, it may be complaining and being upset over the "accidents" that occurred after so long without any. I stop and I remind myself that just a few years ago an occasional "accident" seemed like a dream and my daughter doing Math of any sort would've been met with complete disbelief and doubt. If I were to only focus on the setbacks and the cant's and the bad moments scattered amongst all the wonderful ones, then I'd miss just that. I'd miss all the wonderful beautiful and amazing moments. Those moments are the moments that matter and the only ones that count in the end. I realize that sometimes the tough moments and set backs are not within my control. Often times they are not even within my daughters control as she deals with a body and brain that do not always cooperate together and seizures and medications that can sometimes impair her ability to think as clearly on certain days. My heart breaks for her for those reasons, but I do my best to teach her by example that it's quite alright to make mistakes and have a bad day,and to just move on and enjoy the good times! After all she is the very one who has taught me just that! The moments I am ever so grateful for. To be honest, if not for the difficult moments I might not be as grateful for all the others, and for that lesson learned I am thankful. I know, after having gone through what we have been through with our daughter, that an accident to clean, or a messy house, or a chaotic day of appointments,or even weeks full of setbacks, out of sorts children,cranky days, and the like are nothing in the big picture. They are in fact a far cry from even being counted among the worst times. Trust me, as cliche as it may sound, I am well aware that "it could always be worse." I've had worse! Yet even then I realize it still could've been worse. We have had many scares over the years, and because of them I appreciate just how much worse things could be, and how quickly it can happen. Its because of this that I know the value of taking things a day at a time, enjoying the good moments within each day, and taking a deep breath and refocusing during the bad moments.
That's that! My wisdom for today, my pep talk to myself mainly, but if sharing it aloud can help anyone else...than why not! Really, even though I applied it mainly to my journey of raising a child with special needs, it can be adapted to apply to any situation in life and not just for Moms, but for Dads, and even those without children. Regardless of what difficult moment you may be going through, always remember to take it a day at a time. Find beauty in each day. Focus on the positive and try hard not to worry too much about the things that are not within your control. There is nothing you can do to change some things, and worrying over them will only stop you from enjoying what you can!
No comments:
Post a Comment