Loneliness

Definition of Loneliness:

4: producing a feeling of bleakness or desolation

This isn’t the most common definition for loneliness, but it is fitting for my situation. I have great friends and family and people that care, I just don’t have anyone who is in my shoes, with me, to understand just how hard life is at this moment. Life definitely feels bleak and desolate. A tad draumatic? Maybe. The way that I feel? Absolutely.

I had a little breakdown last week with Cameron and the one word that I kept going back to was loneliness. I feel so alone these days in coping and dealing with Sydney and her “issues”. I am full of anxiety (as my fingers would show bloodied and battered by my constant biting along with my lips that are disgusting and puffy). I am sick from lack of sleep (due to both girls) and I am at a loss of what to do. How to help. I have Cameron yes, but he sees the tantrums very seldom compared to that of my typical day. When I speak to people about Syds sleeping issues, her tantrums, etc, it is very common to hear, “well that doesn't happen for me”, or “that is just so strange, I don’t get it, she is such a sweet little girl”. Yes she is sweet, but there is so much more to her that nobody else sees. I know everyone’s heart is in the right place, and anyone would help if they knew how, but they don’t. It is impossible to help if you can’t understand the situation. George Orwell put it well in his book 1984 when he wrote, “Perhaps one did not want to be loved so much as to be understood.” Lack of understanding = loneliness to me. I am not even just talking about other people’s understanding, but also mine own. I can’t understand what is going on with Syd so I can’t even help myself. I can’t figure out what is going on with my child…does anyone understand how completely awful that feeling is to a mother? I am sick of this feeling and I wish more than anything that it could change. 3 years in this is getting quite old. Not to mention that the loneliness turns into pity and self deprecation for bad mothering. I am over it.

We took Sydney into the hostpital for more tests a few weeks back for concerns about her seizures returning. We thought she was having absent seizures as her teachers pointed out. We are unsure at this time what the “episodes” were, but for now we are not putting her back on meds until we see more activity. Along with these tests we received a call from her therapist and teachers at school who are very discouraged at her progress. We have decided to look further into autism which all of her Dr’s have said they had no concerns over, but again…they are not in my shoes and see what I see. I have been researching every day, calling teachers, therapists, and friends asking for advice, but when all is said and done, it is on me. IT IS ON ME. Talk about responsibility! Talk about feeling alone.

We know that Syd does not meet criteria for Autism or Asperger’s in their most common form, but Cameron is pretty sure she has PDDNOS. It a very high functioning form of Autism but with autistic tendencies such as speech problems, sleep problems, tantrums, etc. As has been pointed out by a few professionals, because of how high functioning she is, getting “labeled” might actually hinder her at this point. They assured us that even if she did have this diagnosis, there is nothing else that we can do that we aren’t already doing…so that is actually comforting. That’s something. She is and has been (for about 2 years now) getting extra help through different therapists, so at least I know that I have done everything in my power to help her with outside therapists and such.

Anyway, I am not really sure why I decided to write this tonight. A good friend of mine wrote me the other night about how she appreciated my honesty on my blog and how it helped her through her trials. Maybe I write because of her, and because of anyone else out there that might feel this terrible loneliness. Maybe it’s just selfish and that I just needed to ask for just a little more understanding from people. I don’t know. I do know that one NEVER knows what another person is going through. You never know how purely exposed their emotions are. How TIRED, Overwhelmed, or inadequate they feel. You can’t judge…because you can’t understand. You also cannot help half the time (even though you might think you can), but, you CAN try to be a bit more understanding. You can try and just be supportive and show more love. I do want advice, I do want ideas, but I don’t want it in the form of judgment and ridicule for what I have and have not done. I am not saying that anyone is actually doing this, I am just saying that in the fragile state that I know I have been in for months, a lot of the advice that I am getting just makes me more confused because it’s coming from people who don’t understand. Those who think they do, who think they are experts on the matter. They know what they think they know but not actually what is going on…so its more confusing. I can’t explain, I just am lonely and tired of being in this place. I want answers…but I don’t see a lot of change happening in that department. In Sydney’s case it just takes time to find out anything. And time is all that I have. It’s the indefinite time that makes me feel so desolate and bleak.

Sydney, I love you. I wish that I could understand what is going on inside of that little head of yours so that I could help you and unleash this little (big) person that is inside. I wish that I could understand you, and your thoughts. I hope and pray that you do not feel this same lonliness that I feel. In time you will be able to express yourself. I truly believe that. But for now, I promise to do my best to be more understanding of you and your needs and be more patient with this “space of time” that we are in. I love you forever baby girl!