feeling like a failure

My first baby

Because I am your mom, sometimes I feel like a failure. Before motherhood, I was a born fixer. I saw a problem, I drafted a solution, and usually I fixed the problem or at the very least, improved the situation. But that isn't the case anymore. Now, some days all I see are problems and I cannot even get to the point to draft a solution!

My sweet Molly, it breaks my heart watching you sink further and further inside yourself. I can see the storm firing inside your head, I can see you unable to stop yourself. It hurts watching you fighting a brain that won't listen. I want to research, I want to ask questions, I want to find you help. But I don't even know where to start or which questions to ask. Are you zoning out? Are you having silent seizures? Are you getting sick? Is this what your personal picture of autism is going to look like? Is this our new normal or just a cycle? Do you need medication? A test? Is there an answer for any of my questions and how do I find them?

I call a doctor, they tell me to call another doctor. They tell me to document, to wait, that we can try this test or that treatment. But what is the right answer? The behavior specialists think seizures, the seizure specialists think behavior and I do not know what the right answer is.

I feel like I have failed you Molly, because we've been in this cycle before. It's a downward spiral where the only thing that calms your body is holding an Ipad, and even then I am watching you mindlessly talking to that Ipad right now. You aren't acutely ill, but you aren't well. You respond to me, but your thoughts are nonsensical and mostly fantasy. It's so hard to watch, because it is not like this all the time. You can't focus, you can't stop moving. You stop mid thought or in the middle of reading a sentence and just stare off unsure of what happened. You're scared of everything. Loud noises, a move we aren't making, being in a show, of traffic and even of death. Some of your fears are fantasy laden and make no sense and some are so real, it's hard to calm you without tears in  my eyes. Before this cycle hit, you were still fixated on theater and plays, but you talked to me and we had conversations. Before this cycle hit you were able to focus long enough to read a story, or learn a new skill. But none of that is happening right now. I feel like you are slipping away from us and that scares me.

So what do we do? I know what we don't do - we don't give up!

I am not one to wallow and I don't let failure keep me down long. I absolutely hate this helpless feeling, so I will reach out to every contact I can think of, every doctor or educated individual and find out what we should do. Because even though I feel like a failure right now, it is also my job as your mom to be your champion. Although I may occasionally fall off the white horse you put me on, I promise to always be there to do everything I can to give you and your sisters the best of everything.

Please know, the best of everything does not mean designer clothes and wildly expensive gifts; it means love, happiness, and self-confidence. It means that if I know something is not right with your health, either physically or mentally, I won't rest until we get answers. It means that you will never know a world where you are not loved and cherished every minute of every day, even when I am banging my head against a wall in frustration.

Sweet Molly, you are my oldest. You have taught me the most and you have paved a path for your sisters to follow. And although I have many worries for your sisters, from Kennedy's behaviors and learning challenges to Zoey's various health and development questions; you are at the forefront of my mind this evening.

Because I am your mom,  I do feel like a failure sometimes. But then I look at your smiles, get a kiss or a hug, or hear you do something that warms my heart and I know I'm not a failure, I'm a Mom. It's my job to feel your pain and heartache and to share in your joy and triumph. So, I just need to keep working!

Because I am your mom, I promise to always love the three of you to pieces and to never give up!

Because I am your mom

I've been battling a case of writer's block. Whether it's fatigue, the desire to not sound like I'm complaining, the inability to focus my thoughts, or just not knowing where to start; one thing is for sure, it is not for a lack of something to say! So, I figured, I'd just start writing and see what happened. So, because I am your mom...

Because I am your mom, sometimes I have to make the difficult decisions. I have to decide when to stand up and fight, and when to let you fall. I have to decide what is good for you and what is bad. I have to decide where we go, what we do, who we see, and when we do it. I decide the paths we take together, but I do not control where those paths will lead.

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.