For the last seven years I have begun to understand the complexities of parenthood and how unique each situation is to those who are living it. I can read every parenting book and article out there. I can talk to experts and other parents until I am blue in the face, but they are not living my life and I am not living theirs. I try to glean whatever tidbits others have to offer that I think will apply, and store away those that I know have no place in this house. If I'm asked for advice, I try to say: this is what we do, but you need to make it your own. My world is one of ordered chaos. We have challenges for sure; but we have joy, love and happiness above everything. There are days when I want to wallow in the unfairness of life, where I want to cry because my child has to struggle with this or that. These are the days I am forced to stop myself and watch her struggle, because it is then I truly realize the amazing gift I have been given.
It happened yesterday. After staring at the clothing I picked out for a good ten minutes, something new happened, Molly got dressed. And the light in Molly's eyes when she realized that she put her pants on the right direction all by herself, even though it took five minutes to, was priceless. I could cry over the fact that it takes my seven year old five minutes to just put on her pants, and that I then have to go back and fix them; but instead I'm throwing a party because SHE FREAKING PUT ON HER OWN PANTS!!!! It may not happen again for another week, but she did it and I don't care!
If you know Molly, you know she's a sweet soul. You can't help but love her and you want to just hug her to pieces. I know, because this is how I feel about Molly. Yes, I get frustrated that I have to tell her the same exact thing 5 times in the same minute and then repeat it again. Yes, I get annoyed by the constant movement and running storyline that never seems to quit. And, yes I want to cry when I think about how many years we've been pursuing answers for her, and how many times we have been so close to understanding and how many times we've had setbacks. We're certainly in a setback right now. People, doctors, others will say; well is she currently having seizures. Our answer, we don't know? She isn't having convulsive seizures at this moment, as she did when she was younger. I am not convinced that she isn't having electrical discharges deeper then the EEG probes can read, and I am not convinced that she isn't having breakthrough seizures on occasion; but no, she is not actively seizing. But, the seizures are part of something bigger that we seem to be getting closer to discovering with the help of her doctors. It's not just autism, it's not just seizures, it's not just adhd, it's not just dysautonomia (which we are investigating), it's not just the sleep issues and the sleep apnea and whatever it is that causes her to violently slam against our shared bedroom wall, it's not just the learning issues, the speech issues, the motor issues, the asthma issues, and crappy immune system. It's all of it and trying to give my beautiful daughter the best and most fulfilled life she could ever ask for.
So yeah, I have to make the decision of which doctor do I turn to next. Do I call the doctor for this? or do I wait to see what happens next? Do I add a new medication? Do we try this treatment? This test? It is like a choose your own adventure book, but I have to choose for her and the path is never clear.
And then there are the other 2 to think of. It's becoming increasingly difficult as Kennedy gets older. Whatever issues Ked had as an infant and toddler seem to have resolved themselves with the exception of her lactose intolerance! She is outgoing, social, temperamental, stubborn, active and caring. She is a fire-ball and full of energy. She never misses a beat. She loves her sisters and just wants to play with them. She dresses herself every day, a comparison it's hard to ignore as she is 3 years her sister's minor. She is very independent and capable of so much. It's a delicate balance to allow Kennedy to live a "typical" existence while walking that tight-wire of helping Molly to achieve within her own abilities.
Oh and while we're adding to the mix, we decided it was a good idea to have a third?? I must vehemently state I DO NOT REGRET HAVING ZOEY! I love that little girl with all my heart, but I need a clone or some extra hours to handle what is being put on my already full plate! Zoey screamed her sweet little heart out from the day she was born until shortly after her 6 month birthday, unless she was being bounce-walked continuously. A milk-protein allergy, GERD, and a high maintenance baby with a super sensitive startle reflex and hypersensitive pain intolerance seem to be what that was all about. Now, just shy of her 9 month birthday she has qualified for services with some significant motor and cognition delays, and will be going for an MRI and Long-term Video EEG because of some very suspicious episodes among other clues. Again, this doesn't make her who she is, she's Zoey. My beautiful, bright-eyed, silly baby girl. I have no idea what her story will look like, but because I am her mom, it is my job to make it the best and beautiful story it can be.
As I prepare to kiss my 2 oldest girls to sleep, I do as I do every night and kiss them with a heart full of love. Molly, Kennedy and Zoey: Because I am your mom, I will never give up on you. I will fight for you with every ounce of strength I have. I will tell your stories, I will help you write your stories. I will listen, I will learn, I will be BRAVE. Because I am your mom, I am a better person. I love you.
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What an amazing blog! GO MOLLY!! So glad to hear that some of Ked's challenges have become a thing of the past! I am sure that this is often bittersweet as she catches up and even passes Molly!
ReplyDeleteZoey sounds like a true love as well as challenge into an already hectic and lovely home!! Hang in there with all that is on your overflowing plate! You are supermom who needs a cape and someone full-time to help!! They DO get bigger and easier!!