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How I Manage

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“I could never do what you do.” “How do you manage?”  Yes, having a severely disabled child has its challenges, but they are your child and you love and do everything possible to help your children. His needs are just different. My life may be more difficult than others’ in some ways… weekly specialist appointments and multiple therapies, fighting for services, insurance coverage, and resources, spoon feeding my three-year-old all of his meals and holding a cup to his lips for every sip, and having to helplessly watch my child suffer from seizures daily. Bennett’s communication is very minimal and only his father and I truly understand his sounds enough to know his needs, but even then we are left guessing, and I’m always feeling like I’m not doing enough for him if I’m not engaging him in some kind of therapy all day long, every day of his life. However, my life is also simpler than others’ may be who have two children, ages 3 and 5. Bennett can and will nap anywhere at any time! He lov…

What They Don’t Tell You

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After Bennett was diagnosed with a rare, neurodevelopmental disorder called CDKL5 Deficiency Disorder at 11 months old, I was told that the future was unknown for him, that he would “write his own story.” That was the most positive thing we heard. Then we were given some websites to visit and we read about the statistics for a child like Bennett and it was grim, to say the least. The neurologist and the geneticist chose their words carefully, careful not to be too devastating and careful not to be too positive, in case we were to become disillusioned about our son’s condition. We were also told to call our regional center to seek an assessment and services as soon as possible. What they didn’t tell us was how we were in for the fight of our lives… for services, for medical equipment, for the best care possible for our child. The fight for services… the fight for medical coverage…the fight for the safest and most effective anti-epileptic meds… the fight for medical equipment…the fight f…

Bennett’s Story: Birth to Diagnosis

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When you find out you’re pregnant for the second time, you are fairly confident that everything will go routinely. You’ve been through this before, you don’t have time to worry about the “what if’s” and you figure that the chances are you’ll have a healthy pregnancy and baby. My pregnancy with Bennett went fairly smoothly, nothing too concerning or abnormal. After he was born, he was slightly smaller than we anticipated, but again, nothing too concerning. His first few months he struggled to gain weight, but so did his older brother, so we weren’t too worried. At about 3 months, I was looking back at pictures of my oldest at that age and realized he was holding his head up and tracking with his eyes better than Bennett was, so I mentioned it to the pediatrician at his check-up. She agreed that he needed to work on head control, so we started physical therapy by 4 months. At our 6-month check-up, I was growing more concerned because Bennett still wasn’t tracking, responding to his name,…
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It’s almost that time. The time I have been anticipating, and dreading, since Bennett’s diagnosis of CDKL5 Deficiency Disorder. The time when strangers will know instantly that he’s disabled. The time when the stares, comments, and judgements will start. Up until now, Bennett is “just an adorable, sleepy baby” to the average person he meets. We get “Oh, isn’t he adorable!” comments from passerby mixed with big, smitten smiles. I’ve grown away from my feelings of insecurity and scrutiny when he was an infant and now we merrily go about our day, not giving a care in the world what other people may think or say. It’s almost that time to get a wheelchair. I knew it was coming. His therapist has been mentioning it for months. Every time I thought about it, I would feel a mixture of excitement for my baby boy to have the support he needs, and a feeling of pure devastation that this is WHAT HE NEEDS. I have a child with a lifelong, severe disability. He is most likely to never walk, talk, or f…

Undiagnosed

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The unknown is terrifying. The anxious, helpless feeling of not having a diagnosis is debilitating. You have no control. You have no power.
You walk by a giggling baby saying, “Mama” at the grocery store. With a punch in the gut, you are reminded that you haven’t seen your baby smile in three weeks. The clerk asks how your day is. You briefly debate mentioning that you were holding your crying, seizing baby in your arms just that morning, feeling powerless and decide, instead, to say, “Great! How’s yours?” You then wait until you’re in your car to let the sobs escape and the tears stream down your face. Any “little” thing is a trigger- a tipsy toddler walking about, a friend’s nine-month-old saying their first words, a monthly milestone birthday, a friend’s social media post announcing one of her baby’s many firsts, brand-new and hand-me-down baby toys that are collecting dust in the garage… You know there’s something terribly wrong with your baby, but you don’t know what exa…