As much as I do not slow down, relax, or even sleep, I consider it a blessing in disguise. As much as I long for a day at a spa, or even going to get my hair done, I know exactly what will happen. I will think. I will dwell. And I will cry! As much as I would love a day just for me, I am thankful I never get that. As much as I would love for a friend to reach out and invite me somewhere, for a coffee or a nice cold beer, I would not enjoy it.
Being busy and overwhelmed, on high alert and full of constant worry and anxiety is by no means an enjoyable feeling. I hate it! But I hate sorrow more.
Oh but "everything happens for a reason". "God wouldnt give you anything more than you could handle". "God only gives special children to special people". "But Jaylyn looks normal, I cant even tell theres anything wrong with her". "She will turn out just fine, doctors are always wrong". Each of those phrases has been said to me on more than 1 occasion and each time I hear them, its like a knife in my heart. Until you live this, you will not understand and I wouldn't wish this on anyone. Its one thing to lose a loved one when they die. You grieve and mourn and the finality of it eventually settles in and with each day that goes by it becomes easier to cope and accept. When you have a child with special needs, you never want to fully accept the diagnosis, the prognosis, or the expectations and limitations your child will face. I admit I am still grieving and even though it took 8 months for the full shabang of diagnoses, I knew there was something seriously wrong. The "wait and see" approach did not sit well with me and I pushed for answers. Not the answers I wanted or expected, so it was as if I was not prepared at all to be hit with all of this at once.
I am very analytical by nature and am always looking for the "why". Why did this happen, what caused this, why me, why her, etc etc....not in a self pity "woah is me", attention seeking way. I just really need to know as if it would perhaps ease some of the pain. Another phrase I just LOVE to hear.... (analytical and sarcastic by the way) is that "it could be worse!" The only 2 people I do not get upset with for saying this to me is myself and Jay. Of course it could be worse! She could have suffered a great deal more than she already has, or not have made it at all! I think about that all the damn time, and I certainly do not need an outsider pointing that out when they do not comprehend in the slightest all we have been through and will continue to go through. We have a child that is essentially a ticking time bomb that has difficulty communicating her needs. Sometimes living in the now, seizing the moment and enjoying her while she is here is not the easiest thing to do when we are all exhausted from staying up with her, trying to guess what it is that she wants or needs. Whether or not she is in pain. Wondering if its her teeth cutting or something far more serious.
A few weeks ago, with 'the great ear infection fiasco of 2014' as I like to call it, I dont think anyone slept. The fevers, the crying, the temperature taking, the allergic reaction to antibiotics, 3 pediatrician visits and a trip to the ER. But I was too busy and exhausted to even think...thank goodness! The illness exacerbated Jaylyn's epilepsy, lowered her seizure threshold, she had a significant event and required a dosage increase of her seizure meds. Out of all of that, what upset me the most was an insensitive remark that the triage nurse had made when I had called about Jaylyn's allergic reaction to the 1st antibiotic she was put on. "Is JAQUELINE still pulling at her ears". 1st of all, the dopey bitch got my daughter's name wrong. And 2nd of all, Jaylyn has never in her 14 months on this earth been able, or made an attempt to pull at her ears. So after being on the defensive about that, a comment that the emergency room resident had made, definitely put things in perspective. She was admittedly shocked as she came in the room to see Jaylyn in a sitting position without support. The resident had said she was expecting to see a child with significantly more disabilities than Jaylyn presents with. Now THAT is a proud moment! Knowing Jaylyn has exceeded someones expectations! Knowing she doesnt have to be in the same box as other babies her age. No,she doesnt have to be on point with typical babies her age. The only problem with her not pulling at her ears due to pain is the fact that no we didnt know her ears were bothering her. Maybe they werent! Maybe she is like her mama or many other typical redheads and has a high tolerance for pain! Or maybe we will have to find other means to communicate. I have been on Early Intervention since day 1 about starting speech therapy. "Typically the state wont pay until after the age of 2" is what I am told every time I ask. Of course they switch it up and rephrase the same scripted answer but that doesnt stop me from getting my daughter the help she needs! I went a different route this time, addressing my concerns regarding the nutritional and medical aspects of further delaying her getting speech therapy. So....her PT is starting it and its incorporated into her treatment plan until Jaylyn is 2 and the state will pay for more intensive therapy. Hooray for multidisciplinary therapists! So maybe Jaylyn has blessed our lives for a reason. Maybe just maybe an invisible sky daddy gave her to us because we can handle it. But we are no more "special" than any other parent that loves their child.
No comments:
Post a Comment