Really hard

Some days are harder than others, some weeks are harder than others, some months are harder than others, some years are harder than others, etc. January is coming to an end, and it has been a hard month. A really hard month.

I have been reflective this past week, on the challenges God has blessed us with. Sometimes it is hard to see through the forest, and to see the challenges as a blessing. Really hard. But when I sit back, spend some time in his word, I am able to see the blessings. I don't see them all, yet. I know that He has some more to reveal to me that I am not yet ready for.

I know that sometimes I may seem whiney or negative on my blog- but that is mostly due to my commitment to be honest and open about our life living with a FASD. And during all of the challenges, which are in the 100's every day lately, I need to keep reminding myself that Akila did not ask for this, nor deserve this. When I start to get overwhelmed, and feeling really bad for myself for all that I have to put up with, I try to step back and feel what it would be like to be her. Sometimes, this is hard. Really hard.

I think of what my body physically feels like when I am angry. Honestly, this has happened very few times in my life. Where I am truly angry, yelling, and agitated. As a matter of fact, as an adult, I can't remember every feeling as angry as Akila is on a daily basis. I am a very laid back and calm person. But when I am angry or stressed, my body does not respond well. I get lower back pain, headaches and just feel yucky overall. When Akila is home, lately, she is angry at least 50% of the time, and I think it might be higher than that.

This morning, right before the bus came, Akila asked if I could drive her to school. She did not ask nicely either. I was in the last few minutes of my countdown to when she would leave. Not a good feeling, but it is where we are at in life right now. I told her I couldn't. She got mad and demanded to know why. I told her because I needed to shower and get to a meeting. She pushed me and yelled, "you should have told me that!!" I wanted to say, "I just did!!", but I did not respond.

Right before that, she wanted some gum. The OT says that anytime she can chew gum, is a good thing and the bigger the better. Double Bubble, Bubble Yum, that kind of gum. So I let her have some each morning to bring to school. I was out of the certain flavor that she was craving today, and she went crazy yelling at me about this. Smacked me a few times and pushed me as well. Then, when the bus finally came, she told me to eff off as she went out the door. I bit my tongue as I had several things that I wanted to respond with. I just closed the door, breathed a sigh of relief and sat down to reflect.

Her life is not easy. She has not one friend. I think she tries so hard the entire school day, to be "normal", to fit in, to abide by the rules, that all the rest of her time, she is a total mess. That is not to say, that on days when there is no school, she is great during the daytime. Normally, the daytime is her best time, thanks to some help from meds. But lately, when she is at home, even during the day, she is horrible. She wants so hard to look "normal", yet she doesn't all the time. She has a hard time caring for her hair, and also allowing me to help with her hair. She wants me to do it, but won't let me help care for it each day. A few weeks ago, she came home from somewhere with a sample of fingernails that were glued on to a nail file. I think she stole them from a respite provider who does nails. She used her nail glue, and applied them to her nails. They were the long, skanky looking kind (sorry for the judgement, but that's my opinion). Each one was a different color, and had a number on them. Tell me that didn't look totally goofy. Imagine, being in the position of telling your daughter to take off those nails which are glued to hers. What would you have done? I let it go. Least of my concerns lately. Do I sound defeated? A little. I am picking my battles more carefully than ever.

This is my daughter who eats alone at lunch. They have tried to have other kids sit with her, sometimes she has lunch mates. Most often not I think. And Akila is actually fine with this, it doesn't seem to bother her too much. It breaks my heart. It is a reminder of how hard her life is.

I think of her future, and how hard it is going to be, and I don't mean for me. For her. It is going to be hard. Really hard. As parents, we try so hard to make life "easy" for our kids. We don't want them to make some of the mistakes we made, so we try to teach them the "right way" to do things. When I was newer to this parenting thing, and more naive perhaps, I use to pray that things would go smoothly for my kids, and that they are able to enjoy the Lord's plans for them. But the truth is, that we don't know what He has planned for them. I would never have guessed in a million years when I was 10, 17 or 27 that He had this life planned for me. I know He has a reason for choosing this life for me, many reasons actually.

Now, I pray that he equips each of them for the easy and the hard. The really hard. I pray more often for Him to give them (and me) grace as we swim through the tumultuous waters, rough waters yet to be revealed (I know it is going to get more challenging with Akila, not easier). I pray for the Lord to give me the wisdom to teach and guide them through this current situation, which is taking a tole on all four of our kids. I pray that He uses this to make all of us stronger in our faith, and as a reminder of our need to rely solely on Him. When I start to think about how hard this is for Akila, or for me, I think of how hard it must have been for Him to sacrifice His only son. To watch him die on the cross. It must have been hard. Really hard.