This past Saturday, I was fortunate and blessed to be able to work at the local special needs expo. I was able to leave Kerstin in the comforts of home with her aunt Regina watching her for the day. So, not only was I working, I was able to get a little respite, much needed. As always, when Kerstin is with her aunts, I check in to see how things are going with my little boss. Regina kept me abreast on what was going on throughout the day. When the day was done, I called to chat with them and see if anything was needed. During our conversation, Regina told me that being there all day with Kerstin showed her how busy a single day can be. This was not the first time she's spent the day with Kerstin somehow, she really felt the love of being Kerstin's full time caregiver. She said it felt almost nonstop at times, by the time she prepped food, got the Kangaroo bag filled and pump ready then the medicines, it was time do something else. Keep in mind, Kerstin's medicines are staggered throughout the day with her having to take some every four hours. She said keeping Kerstin on schedule while doing laundry and other things, it felt like she would sit for a few minutes and have to go do something else.
"I get it, Mattisa!", to hear those words seemed exhilarating, because, someone took the load off me for a while and knew I needed it off! I cannot explain to you how overwhelming it was to hear those words. As parents of a child with extra care and needs, we often hear how special we are, how special our children are, and how it must be so hard. Or, can you recall the looks of pity, "Aww, bless her/your heart!"? It is welcome relief when it is gotten. It is understood. We are in no way looking for pity, Kerstin is as bossy as they come! In fact, she was paid for having to be cared for and not the other way around. How bossy is that? I had never heard of the "babysitter" having to pay to provide a service! Kerstin, setting another trend. Let a family member or friend know that you really get it. "How can I help?" May not be answered because I rarely answer when it is asked of me, just know that understanding the flow of a single day and jumping in without disrupting that goes an extremely long way! I'm thankful for the supportive circle around us, when things seem heavy, they load is quickly lightened. More to come...
Some people just don't understand! Remember DJ Jazzy Jeff and The Fresh Prince's "Parent Just Don't Understand"? In the song from 1988, Will (The Fresh Prince) talks about how parents are all the same, all across the land...they just don't understand their kids. He goes on and on about how his mom made, in his opinion bad choices about the style of clothes and many other things parents and their children did not agree on.
This post isn't about parents misunderstanding their children or vice versa. Like the subject states, "Some People Just Don't Understand". As we all are pretty much aware, the very arrogant Kanye West went on a rant at one of his recent concerts and basically demanded that everyone in the audience stand in his honor. He apparently became offended when some patrons did NOT stand, not because they didn't want to but because they couldn't! This fact had to be verified by his (Kanye's) handlers. Shameful! No national outrage of this man's ignorance. This story didn't make it's rounds on the evening news. However, parents of children with disabilities and adults living with disabilities were very much outraged! I know I was and still am! My daughter loves music and I know, if she could she would be dancing and singing to her favorite tunes! The actions Kanye showed at his concert and the blatant arrogance he showed after the fact is often expressed by many, in more subtle ways. So many people say things that shows that they have no full understanding of what it is like to live with a disability or to care for a person with one. When you factor that in, it is, as a presenter said at a conference I recently attended, ignorance. Ignorance is when there is a lack of knowledge. We have all been ignorant to many things in life. You have no knowledge of something until you learn about it. So, why was Kanye still ignorant on the entire audience standing? That was both ignorance and arrogance. What do you call it when you're in church(es) and you hear things like "you're not blessed" or "if the Lord's done anything, you should stand..."? I'm not sure, and I don't care what the world thinks the Lord has or hasn't done for me. I will continue to sit with and beside my daughter and many others that cannot stand in the face of those that just don't understand or just don't care! So, Kanye and preachers and church folk around the world, the little music lover in the picture below, isn't able to stand on her own right now, she is beyond blessed and loved. Her mom (me) is her biggest fan and number one supporter...I sit with her and stand for her and I am a voice for her!
I know there are some that may not be aware of many of the lyrics of now deceased rapper, Tupac Shakur given the image and reputation he had while alive. However, he had songs that inspired many and seemed to have spoke about their lives during that time. One of his songs with the same title of this post, "It Ain't Easy" seems so relevant to my life right now. It ain't easy...proper grammar, it's not easy, being me! That is the hard truth! It is so hard sometimes to get out of bed to start a day that is not much different than the day before. Sometimes we dread the unpredictable moments that disturb our days. It may seem weird to actually want that. My smartphone dings as reminders every few hours. I know that my daughter has to have a certain medicine at a certain time. Along with that, it alerts me every three hours that it is time to give her a bolus. If you know her schedule, you know exactly what I'm doing at a certain time. It ain't easy, to get the day started when I have to work with her spastic muscles and at times a very strong case of asymmetrical tonic neck reflex (ATNR) while attempting to dress her. How about on a cold winter morning and it takes over 7 minutes just to get a long sleeve shirt on her. The tug of war comes again when putting her in her safety belts once in the vehicle. You should see me standing there sometimes, rubbing her arm and singing to her just waiting and hoping she will relax soon. The resistance is so strong. So, to all the doctors, teachers, annoying school administrators, therapists, whomever, understand it is NEVER intentional for us to be excessively late, it just happens that way. It ain't easy raising a child with special needs! It may appear controlled, if you only knew the half. It ain't easy, but we do what we have to do because there is no other way! Just have a little patience with us!
