I am exhausted.
I have wanted to write this blog for probably a couple of months now, and I have started approximately twenty times, but I never got any further than the start, and the start never felt right. It’s really difficult to express how you’re feeling when you’re feeling so many things at once; guilty, confused, helpless, angry and hopelessness amongst other things.
I am exhausted. It is the perfect beginning, because it is the most honest one.
I mentioned my daughter’s anxiety in my last post (Bullying, the Aftermath and an Anxious 8 Year Old), when talking about bullying and the effect it had on her. Since the birth of her baby brother a little over a year ago her anxiety has gone from manageable, although bad, to considerably worse. My daughter lost both a sister and her biological father at a very young age and the birth of her brother has brought emotions to the surface that are worse than we imagined they would be. The effect that this has had on her anxiety is quite extreme, and it is only in the last 6 months or so that the connection has been made between the two, as getting through to her, and getting her to talk about what is on her mind, has not been, nor is it still, the easiest.
The truth is, I’m nowhere near a perfect parent, I don’t think anyone who is truly honest with themselves believes they are. I cook homemade food because I want my family to eat well, I care about my children’s mental and physical wellbeing, I think education is extremely important and I encourage learning, but I also think creativity is an incredibly important lesson to learn if possible. I also occasionally reach my voice, I get frustrated and I voice those frustrations when I should keep them to myself, I let my daughter play too many videogames and watch too many YouTube video, I have let her witness arguments between my husband and myself even though I know that us arguing upsets her.
The truth is, when you have spent over three years going against the tide, trying to get help for a child that no one else seems to think sincerely need it, your level of patience is worn to the point of being essentially non-existent. My typical weekday over the last year and a half has consisted of spending three hours in the morning trying to calm my daughter down to the point where she can physically and mentally manage to go to school, and if possible convince her to eat something. At the moment she’s attending school at reduced hours, and when she goes to school she generally manages to stay there until it’s time to go home, however I still spend my days dreading any form of communication from the school telling me that she’s in pain and very upset and needs to come home. I dread it because I feel like I have failed because she cannot manage her school day, I dread it because I feel like the school might judge me because my daughter is ill, I dread it because of the unbearable guilt I get for sending her to school to begin with. Once I pick her up, we then go home, she will hopefully eat some lunch and then be able to do whichever work I have made up for her to do, which was either prepared late last night, or whilst she was at school that morning, because despite the fact that she attends reduced hours she still needs to see that the hours between 9am and 3.20pm are for school work. Then she’ll go and play in her room for a bit, unless I’ve promised her I will play Minecraft with her, by this point it’s generally almost 4pm and I have to start to make dinner, once dinner is made and eaten I have to get Aimee to bed, and that is the most exhausting part of the day. There’s a (generally very) strict no screens after 6pm rule, so she reads, or draws, generally in between having several conversations about things that worries or upsets her, she will also usually have something to eat and then try and get some sleep around 8pm. If I am lucky she’s asleep by 11,but if it is a normal night it can be anything up until 2am in the morning before she manages to switch off and go to sleep. That’s a bedtime routine that spans up to 8 hours, it shatters her, and it shatters me. Then if I am lucky I’ll manage to fall asleep within an hour of her being asleep, but more often than not it takes several hours, and a good night consists of getting more than two hours of sleep.
During such a day I also have to look after my 15 month old almost toddler, who hasn’t been still for a split second since he was about 6 months old, who needs feeding, stories, playtime with me and rescuing from the various situations an absolutely crazy and fearless little boy gets himself into. I must fit in cleaning, cooking, laundry as well as my poor dog who doesn’t get anywhere near the amount of attention he deserves. And throughout the day all I feel is exhaustion and guilt. I feel bad that I am not giving my son all the attention he needs to develop to his full potential, I feel guilty that my kitchen counter still has yesterday’s dishes on it, because I haven’t had the time or energy to clean them, and I feel guilty as hell that I cannot wave a magic wand and make my daughter feel better.
Three years of hell, and it’s only since switching my daughter’s doctor for the umpteenth time that someone actually took her illness seriously and referred her to a paediatrician, the same doctor has also made a referral to the Child and adolescent mental health services (CAMHS), which has been supported by the second paediatrician she saw in the hope that her referral will become more of a priority, and we’ll continue to ask for more referrals to be sent in the hopes that it will help, but unfortunately we have no idea how soon my daughter will be seen, never mind receive the help she needs.
In the meanwhile, I am stuck feeling like I am completely alone and like I continue to go against a tide, because every time things start to become better, something else happens that sets us back once again. At her last paediatrics appointment they made a request that she starts taking melatonin in the hopes that it will help her get to sleep easier, but as with most things, it makes some things better, other things worse. Starting on the suggested lowest dose my daughter went to sleep earlier, but she woke up screaming from horrible nightmares and couldn’t get back to sleep, and mentally this left her in an even worse state than before. So, I gave her a lower dose still and the nightmares became less, but it’s not as effective and It could be weeks, or worse months, of trial and error just to get her into a good pattern of sleep, without the terrifying nightmares.
After doing really well with her school attendance, Aimee had another dip in the last few weeks as she became worse, and unfortunately it feels like the school does not see things from a mother’s perspective, or even the perspective of what’s best for Aimee a lot of the time, it feels like to a lot of people the only thing that matters is to be able to tick her attendance off in a way that positively adds to their statics. So then I worry about what the school will do to make her attend, possibly hurting her and our family in the process. I worry because even though the school has done so much better this school year than in prior ones, it is so incredibly difficult to trust an institution that have been letting you down for years, especially when you feel like they could never understand the severity of the situation.
I find it really difficult to express to anyone just how hard it has been, and how soul destroying it has been to watch my daughter become as ill as she has, because anxiety is indeed an illness, and it affects every aspect of your health. At times I find it difficult to explain to anyone, including the school and the doctors just how bad it is, because I break down in tears, and I am not someone who cries easily. In fact I spent a considerable majority of my life not crying at hardly anything, and I have experienced some pretty shitty things. However the complete and utter level of hopelessness that comes from three years of watching your child being mentally torn to shreds hurts you on a level that is inexplainable unless you have had it happen to you. Begging for help for said child and being told things like “She’s too young to benefit from therapy”, “She’s probably autistic, it won’t be anxiety” or my absolute favourite of “If giving her this high of a dosage of these pills don’t work, there’s nothing else we can do” has left me trusting doctor’s even less than I did before and with an amount of guilt so great that I don’t think it can ever go away.
The truth is, as much as I am exhausted from dealing with everything, and despite how angry I have been with her school, doctors, bullies and the entire world that we live in, all of that combined cannot come close to the anger directed towards myself. I will never stop blaming myself, because I will never stop feeling like I couldn’t have done more. I’m physically sick from the exhaustion, I am mentally drained from the strain my daughter’s illness has put on us, and every night I lay in bed making my way through an extensive psychological maze filled with guilt and exhaustion, desperately searching for something that might actually make a difference, something that we haven’t already thought of and tried. Then I finally allow myself to wonder what tomorrow will be like and then I want to go to sleep even less than before, because that means I will soon wake up and find out.