I'm not going to mince words. I am discouraged. I am beyond discouraged. You may wonder why I haven't updated for awhile--it's been so hard to even think about putting into words how hard this all can be. I am usually a very optimistic person. I don't like to focus on how stinkin' hard it is sometimes to parent a special needs child. I am good at feeling pure, unconditional love and finding the joy in each moment. Not now. How is that for being real? (:
The last couple of months have overall NOT been good for Elli. It seemed to start when she went off track from her preschool program. She was a fussy, ornery mess for a week. We decided she must be missing school, and we couldn't wait until she went back on track. Though it's only 2 hours a day, I think she really needs the structure and attention she gets there. It's such a fabulous classroom. Well, school started back up, but after only going a few days, Elli got what I thought was just a bad cold. We kept her home (so much for being excited for school) and it seemed she was getting better until one awful night, where she screamed pretty much the entire night. By four or five in the morning I had lost patience and left her crying so I could get some sleep. Jeremy ended up getting up with her and gave her a blessing, after which she finally fell asleep. When I went to get her out of bed the next morning at 9 am, I noticed there was dried blood around her ear, and blood coming out of her nose. YIKES. I felt awful, thinking of the pain she must have been in. When I took her to the pediatrician, he couldn't even tell if her eardrum was ruptured because he couldn't see back that far through all the infection in her ear. Poor girl.
I thought that surely things would get better after being on meds, but for the most part, it hasn't. She definitely FEELS better, I can tell that. But she has almost completely stopped talking, and instead does this yelling, grunting thing about every five seconds. My ears have had enough. It's driving me crazy. You might be wondering if her ear is still bothering her... I really don't think so, but I will take her in tomorrow for a follow-up. She's hearing fine, as evidenced by her bolting out of her chair the second she hears a word that has anything to do with sugar. That's our Elli.
I think, rather, that Elli is in one of her "slumps." Her life has seemed to have a pattern since she joined our family two years ago. She will progress, then regress. She will learn something new, then it will just disappear for months. I was so hoping that we were done with this pattern, but that doesn't seem the case. This time seems even more pronounced, because she was doing so well. Now, our cheerful, talkative Elli has turned into a uncooperative, grunting (and that word doesn't do it justice) demanding little girl. I was doing ok with that until the last couple of days (admittedly, there have been some happy times with her interspersed with the trials). However, today I had just had it. After trying repeatedly (I'm talking for the thousandth time) to get her to say a word, any word, only to have her scream in my tired ears again, I felt like there was just no hope. No hope.
Interestingly enough, I came onto her website for the first time in weeks and was lifted just a little (I mean the tiniest bit) when I saw that my last post was titled "Hope." Surely if I had felt it then, I could feel it again. Right? I was so yearning for something to hold onto.
Anyway, today I went to church late (following Elli dumping a leftover bowl of cereal/milk all over her dress, being changed, then spitting out a mouthful of chewed up food on her new outift) and was not in the right spirit, if you know what I mean. The first speaker was very good, but I will admit, I listened cynically as she talked about the wonderful role we have as mothers. Then there was a special musical number. A man stood up and sang a beautiful arrangement of "Consider the Lilies." As soon as he began to sing, a peace washed over me. I felt changed. Surely, if the Lord cares about the lilies of the field, he is aware of Elli.
Because really, I have not been the most loving mother toward her lately, and I needed to know that He was aware of that and still loved me.
There is a verse in the song that is as follows:
"Consider the sweet tender children who must suffer on this earth.
The pains of all of them he carried from the day of his birth.
He clothes the lilies of the field. He feeds the lambs of his fold
and He will heal those who trust Him and make their hearts as gold."
As that verse was sung, I reached down and kissed Elli on the head and felt that love for her that I have been longing to feel, but that has been smothered due to frustration and discouragement. And for a moment, I again had hope.
I am therefore finally taking the time to write again-- to remind myself of that brief moment where I felt the love the Savior has for my sweet Elli. It was almost forgotten as I came home to more grunts and screams and defiance. In fact, I took off by myself to the cemetery to put flowers on Jake and Emmy's graves-- I couldn't handle taking Elli with me--and once again, was not feeling very loving toward her. I turned the radio on in the car to hear, you guessed it, "Consider the Lilies."
Deep, deep down I know that this will all be ok in the end, but right now I am CLINGING to the words of this song, just desperately trying to hope.
P.S. I couldn't get the song on my playlist, but I've added it to the sidebar if you would like to hear it.