Calm Amongst the Chaos

It’s been a crappy day. It didn’t start that way. The kids are going on week 2 of spring break. I woke up at 7:30am and no one was up yet so I caught up on RHoOC then Andi Jane came in my room and said “good morning mama!” The perfect start to any day! Then she told me she didn’t pee in her undies (for the 3rd night in a row, a huge conquest!) and then I got out of bed to get the other two up, fed and dressed to take them all to open gym for a playgroup set up by our MOPs group. I was excited to take the kids there today, I thought it was a perfect outing and it was. It was fun watching Oli jump and play and Andi Jane had a great time. I even think Lily enjoyed me bouncing her on the soft mats. It was a grey rainy day and loading and unloading the kid’s sucks when it is raining, Lily just gets soaked going up and down on the slow lift. After the gym Andi Jane had her 6 year well check. Andi and Oli were fighting and yelling and absolutely out of control at the Dr. office. Like more than I have ever seen before in this type of place. It didn’t help that we were discussing Andi Jane and her ADHD diagnosis. It was embarrassing and exhausting. We aren’t medicating yet. I still need time to mill this over, but the diagnosis is pretty much set in stone now. We all filled out forms (Andrew and I separately and her teacher) and she scored highest in the attention deficit part but qualified enough to add the hyper activity as well. This bugs me. It bugs me a lot. I have heard people describe their ADHD kids as “special needs” kids and I would get so annoyed because comparing them to Lily was like comparing apples and steak. No comparison, but now honestly having a kid with this I get it, if I didn’t have Lily to compare her too, I think I would think I had it rough with Andi. I don’t think I’d ever call her special needs. High needs. Highly spirited. Out of control. Sure, but not special needs. But in all honestly she is special needs if you break down the word. The child is not typical. I know she isn’t. I never thought she was. But to actually hear that some of her actions are out of her control bothers me. Makes me sad. Makes me think I was too stressed with her while pregnant. Makes me think I should do more or less. I don’t know. I’m tired. I’m tired of worrying. I don’t want another kid with a brain/mood altering drug. I don’t want this. I love my kids so much and it is exhausting to stress so much about them. Now I need to look into if Andi needs an IEP. The pediatrician also suggested family counseling, to help us with behavior plans. To help her with self esteem issues. Not that she has any problems in that area, but he said it could come up later. Andrew and I just barely graduated marriage counseling, now we gotta do family? Sigh…
Oli has his hearing testing on Friday. I’m sure he is fine, but his lack of vocabulary is starting to worry me. And most likely he is fine, but finding out now is the best thing I can do for him. For us.
Lily is continuing to have her seizures. She had a big one on Saturday night. Freakishly big. She continues to be constipated. She continues to have her crabby spells.
So after this day I came home deflated. Sad. Just wanting to lie down. I had an insane head ache and I just wanted to rest. I decided to spend some time in a work book I’m doing and spend some time in prayer. Tears were flowing. Flowing from stress. From heart break. From the whole lot the past 6-8 months have brought. My head ache. Then I sucked it up and put my smile back on and went out to face my life, but then I got on facebook and read that a sweet little 4 year old in our CDKL5 family had lost her life on March 16th and it sucker punched me. I don’t know the details but I know a little girl with the same disorder as our Lily lost her life at only 4 years old. I’m shocked and feeling so guilty for pouting and whining about my day when I saw what another family is going through. Life always has a way of putting things in perspective. I love my family. I love my life. Yes it isn’t easy. Yes we got soaked in the rain. Yes one of my kids can’t control her self at times. Yes my 2 year old has the vocabulary of a 16 month old. Yes Lily has seizures. Yes she has constipation issues. Yes life is hard. But it’s our life and we have to live it every day like we don’t know what the next day will bring. So I finished my night playing a game with Andi. Giving Lily a bath and lotion rub down and singing and rocking Oli. Giving them all an extra moment of my time instead of counting the minutes until I put them down. Instead of saying we’ll play tomorrow. I did it tonight. And when I close down my laptop I will pray for the family that has to endure another day of not having their sweet daughter to care for and love. And that is what I will remember when I feel like getting the violin out and playing me another sad song.