Wednesday, October 19, 2016

Crazy, hard days!

Hey Yall!

So...I almost titled this post "crazy, hard neutro days" but after thinking about it for half a second, I figured we all had crazy, hard days and they are likely caused by various reasons that are all equally hard and just equally suck.  For those who follow Team JoMi and our blog, you know that I post at random and there's really no rhyme or reason to my madness ha! That's pretty accurate of the rest of our life too. Lately we've had a decent amount of added "junk" to our schedule.  Bone marrow biopsies, broken arms complete with orthopedic appointments, DEXA scans, neupogen dose increases, new school....the list could go on.

We all have full lives and full schedules for the most part.  Our family also does softball and we are big into that.  You may have seen pictures and posts etc from our annual Team JoMi Co-Ed Tournament on facebook. That was a great success and we have been so blessed by our softball family and surrounding community, family, and friends with that event. The funds raised by that event have provided ways to cover co-pays, fuel, food, services not covered by insurance, and countless other things that come up concerning Mileigh and neutropenia.

Yesterday was Mileigh's DEXA scan. For those who aren't aware, that is a simple xray like scan they do to test the bone density and is necessary because one of the side effects of continued neupogen use is osteoperosis. Mileigh and I both take calcium supplements to assist in offsetting that side effect. Those results usually come back in a few weeks. I don't expect any problems there but it's good to stay on top of it just in case.  There's always a "just in case" right?!  Anyhow, after checking the girls out of school a little early and grabbing coffee for the hour and twenty minute drive to her appointment, we were in and out in no time. We grabbed supper on the way home because both girls had softball games at the same time! Thankfully, their games were at our local park and not scheduled in one of our participating neighboring city parks. After rushing through supper and after school chores the girls got dressed for their games and we were off. Chad helps coach Mileigh's team and they were on opposite sides of the park so he was with Mileigh and I was with Brelan.  Brelan got her first hit since her cast removal and Mileigh was crushing the ball. After both having the late game we rush home to showers and teeth and meds and the normal routine and jump into bed. Here comes the "hard day" part...

My alarm went off promptly at 5:30 this morning and I promptly hit snooze ha!  As usual, I hit the girls lights and tell them it's time to get up and to please put some pep in their step because we can't afford to be late for school due to missing so much that is out of our control. I remind them both that we all have a job to do in order to have a good morning so please get up with good attitudes and start on making their beds and making their way to the living room where their clothes, shoes, and backpacks and purses are already laid out.  I stumble to the coffee pot and eyeball the one button that controls the fate of my morning. I proceed to the laundry room while listening to my liquid energy pour into my cup and here comes Mileigh.  Her eyes are red and the good attitude I'd previously asked for is no where to be found.  I ask what's wrong and her response is "Mama, I just hurt everywhere ya know?"...have I told yall that neutro gets on my nerves?!  If not, there....IT DOES!  I asked her to explain in to me because I needed to know if it was typical neutro pain or bone pain or something else because who knows really. She told me it wasn't bone pain but that she just felt ill all over and hot on the outside and normal on the inside.  I pressed her sweet bed head to my cheek and she wasn't feverish but had been cuddled in bed so I knew the feeling. I gave her motrin and her snack that I'd just packed and she was on her way to getting ready for school. I never heard another complaint. She knew she was achy and needed meds and got them and went on to push through to get ready to do "her job" in our home. Both girls finished getting ready and while I was brushing Mileigh's hair into her top knot and trying to tame her curls I couldn't help but be thankful. We've had a really hard last couple of weeks with discipline and attitudes and everything that comes with parenting and being 8 and 10 years old. Several nights I'd sat in tears because I felt like I'd failed them after an afternoon of yelling and arguing and feeling like that crazy mama who's head is certain to spin around one last time before it bursts into flames and she becomes an instant you tube sensation! I was thankful that I didn't feel like that this morning. I kind of got lost brushing her hair and just kept brushing till Brelan said "Mama, I think ya got it"...lol...that girl truly saves me! She has a sense of humor like Chad. Very passive and quiet but when she's not, it's usually pretty funny. I could tell the motrin had worked for Mileigh and we were ready to leave, ON TIME! Write that down! No fussin, no cussin, no bursting into flames...just ready to go. It made me thankful for the hard days because Lord knows if I didn't have them I don't know that I'd have found that profound thankfulness while brushing my 8 year old's kank bed head! That might not be "profound" for yall...it definitely was for me.

I know there is going to come a day when I don't have to set my alarm, I don't have to wake them, I don't have to drive them, and I no longer have to tame the kank. I know there will come a day when "crazy, hard days" are defined in an entirely different way. So, for now, I will revel in Brelan's quick wit and Mileigh's kank. I will soak up the days that I turn into Madusa and melt into a puddle at the end of it all because I got it all wrong and said all the wrong things to the little girls that I'm trying so desperately to teach to be good, contributing citizens.  My prayer is that when times change and they are older they will look back and know that I tried my best and wasn't too big to say I'm sorry when I screwed up and said it all wrong or bursted into flames. I want them to appreciate their "crazy, hard days" because they give way to thankfulness and understanding of days that go right and days that come without extra pain etc.

For now, they are super busy with school and piano and softball and church and everything and anything else that they do and as hard as it all is, I absolutely LOVE that I get to be the one to stand on the side lines and be their biggest fan! Do I think it's fair that my Mileigh gives her all just to wake up many mornings and hurt all over? HECK NO! It is what it is though and it's my job to teach her to not be defined by anything other than who God has made her and to roll with the punches and use it to make her a good person and a good friend and to love big!

Maybe this post was super random..I don't know and don't rightly care...it's where we are and even on this "crazy, hard day", I wouldn't have it any other way and I love it!

SINGLOUD
-says the Mama you may one day see on youtube with a spinning head in flames lol!


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