Friday, August 29, 2014
Monday, August 18, 2014
Letting go and forgiveness
Its so easy for an outsider to judge, make a blanket statement, and give well meaning advice. I know it is not meant to be malicious or hurtful but some things sting none the less. As positive as I try to be, I also have to be realistic. Having unrealistic ideas and expectations will only lead to disappointment and heartache for all involved.
First of all the reality of schizencephaly and polymicrogyria is not always a good one. The fact that Jaylyn has both of these rare brain anomalies leaves me with so many questions and worries. There is very little research but I have read every single scholarly article and medical journal entry that I could find on both. I have joined support groups for both. I have spoke with parents of other children of both and a few that have both just like Jaylyn. I have educated myself more than most of the specialists Jaylyn has seen. Although Jaylyn is not presenting as the text book definition of either, and is making some promising progress she will not "get better". Her brain is severely malformed and nothing will change that. When we first got the news, the neurologist went through the MRI results slide by slide, explaining the images and the parts of her brain that were effected and what we can and cannot expect.
What I was least prepared for is the blame. I blamed myself. I blamed environmental exposures, I blamed inept care, I blamed anything and everything. I am so full of anger, hurt and confusion. Since Jaylyn's 1st birthday is fast approaching, its time for me to let go of those emotions, and stop blaming myself.
Theres no text book on parenting thats for damn sure but at least you have friends, family and Google to provide all the advice one would ever need. But special needs parenting? Someone that could relate to your specific situation?!? The chances of that are few and far between. I belong to 12 online support groups for the various diagnoses Jaylyn has. Some groups are for networking and others are for adaptive equipment ideas etc. Including the one I created and maintain myself in hopes of raising awareness. Awareness for 3 extremely rare diseases that even in my 15 years as a special needs pediatric nurse had never heard of. And believe me, I have worked in places where you would think you had seen and heard of it all! So what makes an outsider or a doctor whos only seen my child a few times such an expert on my child? What makes them such an expert on me? Who are they to tell me to cheer up and stay positive? Do I not have the right to grieve for the child we were expecting and planning for? Do I not have the right to cry when I want to cry? This by no means makes me a negative person. It makes me real. I look forward to the positives in my life. My children are my everything. They are my heart and soul. They are the 1 thing I know I did right! And I can say this with pride and without reservation because I get compliments on their manners and behavior all the time.
Tuesday, August 12, 2014
One less worry
Its an amazing feeling to have even just a little weight off my shoulders. Enough for me to get a little sleep in between work, appointments and the responsibility of having a special needs child at home. Since having Jaylyn, the typical mother roles had to be modified. Instead of chasing a toddling baby around, I support her while she goes through the mechanics of putting 1 foot in front of the other. Screeching with delight and pride as she makes her way from room to room. Although Im the one with the sore back from being hunched over, I am proud too. I will endure a little pain if it will bring Jaylyn joy. Today we had an appointment at Shriners Hospital's CP clinic. It wasn't as intensive as the one at CHOP but the end result is the same. My baby is getting orthotics to assist her in "walking". Due to the high deductible for durable medical equipment and out of pocket expense for 2 little pieces of plastic and some velcro, we were scrambling for ideas as to how we could afford them. Thats when we heard about Shriners. The burden and worry has been lifted. Any future orthopedic care will be followed by Shriners. If Jaylyn needs a gait trainer, walker or wheelchair they will help. I am continuing to fight the good fight. Petitioning, reaching out to the media, and appealing unjust decisions. This alone has consumed a lot of my time. It's draining, stressful, and a lonely road. A lot of it seems to fall on deaf ears, ignorant minds, and uncaring hearts. Yet I refuse to be discouraged. Someone has to care! Over 100 people cared enough to sign our petition. It was disappointing that more "friends" and "family" didnt care enough to bother but we couldnt be more grateful for those that did. And that is what we are trying to focus on. The positives, the good things and the little blessings scattered along a very bumpy road. We are facing the biggest bump in the road yet. Daddy will be getting major surgery. He has put his own health issues on hold long enough and unfortunately this is necessary. Thankfully we collectively have our own resourceful support team. Our children. Noone is going to come and save us so we are saving ourselves. Of course thinking over the details, waves of anxiety tend to wash over us but this is nothing we haven't gotten through before. I have faith that all will work out.
