How Epilepsy, Autism, Rare Disease have Changed us All
Special Saturday post of the week
Many families have dealt with the same diagnoses we have–epilepsy, autism, Axenfeld-Rieger Syndrome, and all–but when you pull them all together in one family it can become a different kind of life-changing, family-changing, experience. Any diagnosis will change the family dynamic, because you are dealing with more than a word – you’re dealing with the loss of a dream in some ways–yours, the dreams for your child, the ones you had about your family.
The special needs family begins without diagnosis, but with love
When Jim and I met each other, eighteen years ago, we hit it off immediately, it was definitely an opposites-attract kind of thing. Why? Because where I love to meet people and make connections, where I enjoy being around lots of different people … Jim can’t stand it. Undiagnosed at the time, Jim is today diagnosed with Aspergers, which explains some of the severe social phobias we dealt with in those early years.
The thing is, I didn’t fall in love with him because he was shy and quiet, I fell in love with him because he is so sensitive and he truly cared about me. I met him after a particularly hard time and he helped me heal. I called him my angel–he made the bad things slip away for a while.
And then we got married, and we suddenly were expecting our first baby, and we had all these soft, late night conversations as we thought about what our kid would look like, what kind of future we wanted him (I think Jim always wanted a boy first, I never admitted it but I wanted a girl) to have, and how we were going to prepare for that future.
We were full of grand plans and hopeful dreams. And then, within moments of delivery, our world changed. We were no longer looking at a distant future and planning on dreams of that future–we were looking at it.
Diagnosis is never fun – the Rare Disease Roller Coaster
Within moments of Bobby’s birth, the room was way too quiet as I heard one nurse tell another that there was something wrong with my baby’s eyes. I always remember that moment as the life-changer. Never had we been more concerned with the here and now, never had we forgotten so many of the future hopes and dreams, as we did during that first month of Bobby’s life.
My first time holding my baby, my sweet and beautiful baby boy with the head full of hair and soft, fine skin, I wasn’t counting the fingers and toes, I was watching for him to open those eyes so I could see what was wrong with them. And when he finally scrunched his little face up and those eyes opened a little further I could see … something. His eyes were almost completely white across the iris (the colored part of the eye).
I remember that first month as a frantic whirlwind of appointments and disappointments. No one could tell us why our baby was virtually blind. After almost a month to the day, we walked into the specialist’s office and sat down, thinking it would be like the many visits before. But it wasn’t.
You see, that day we received our first diagnosis. Our son had a rare disease, disorder, syndrome, something. Something was wrong with him, and we weren’t expecting that. We were expecting surgery, and even preparing for blindness, but a rare disorder? A genetic one? How … why … the answers to questions I couldn’t even formulate would begin keeping me up nights, anxious to find answers.
Fast Forward – Diagnosis through the years
I used to think it wasn’t possible for one family to experience so many diagnoses. I found out, over the years, that it is indeed possible.
Child by child, we added more diagnoses, answers to developmental delays and vision problems, eating difficulties, muscle tone … answers that ended in some diagnoses, and more questions. Instead of enjoying those early years, spending time learning to be a mother, I was learning how to be a therapist, caregiver, nurse, wife, and mother all in one. Instead of simply being a daddy, Jim was dealing with the same, added to the guilt of carrying the genetic condition linking the boys’ various conditions together.
To give you an idea, here is a list of all the different diagnoses we have seen for our children:
|Axenfeld-Rieger Syndrome||Axenfeld-Rieger Syndrome||Axenfeld-Rieger Syndrome|
|Autism||Autism (high functioning)||Autism|
|Epilepsy||Epilepsy (5+yrs seizure free)||Epilepsy|
|Frontal Lobe Syndrome||Peri-ventricular Leukamalacia||Cerebral Palsy – Ataxic|
|Severe Visual Impairment||Dyslexia||Visual Impairment|
|Brain Bleed in utero|
|*Preemie, 33 weeker||*Preemie, 33 weeker (IUGR)|
Epilepsy, Autism, rare disease … oh my!
But, really … What do so many diagnoses mean? What have they meant for our family? Do you want to gut-wrenching, keep-me-up-at-night truth or do you want an inspiring song-and-dance?
The easy answer:
The many diagnoses our children have, the many different special needs that they share, don’t define them, and are both a blessing and a challenge at the best of times. They’ve made me appreciate the little things in life so much more. I’m so blessed.
The gut-wrenching, keep-me-up-at-night truth
While the easy answer is truthful, it isn’t all the truth. Why? Because the truth isn’t easy. It isn’t pretty. It’s downright painful sometimes.
- The truth? Is that I worry, endlessly, about whether I’m a good enough mother, if I’m good enough to be their mother, would someone else (someone w/more money, more energy, more time) be able to help them more?
- The truth? Is that Jim and I have struggled, sometimes daily, to keep our marriage alive. Those differences that drew us together make running this kind of special needs household difficult. Jim’s severe shyness means I do most of the specialist appointments and advocacy. While he is supportive, he can’t handle it. My issues with depression and fibromyalgia mean that some days I nap, or I go through the day in pain.
- The truth? Is that our house is a minefield of doors torn off hinges (Logan), bathrooms I am NOT wanting a guest to ever lay eyes on (Bobby, visual impairment, need I say more?), and housework that never gets done (who has the time?)
- The truth? We have billing agreements with folks who know us better than some acquaintances … or we at least talk to them more often (I kid you not! Totally true *grin*). Bills? Are never-ending and hard to pay when you can’t work outside the home (Jim’s disabled and I always end up losing my jobs to one emergency or another)
- The truth? We live from one crisis to the next, whether that’s a seizure or a meltdown or learning issues …
But we don’t talk about these things most of the time. This is what multiple diagnoses do to a family, how it affects a special needs family to constantly be in a state of stress and flux … but we don’t talk about it. Because the truth is, that it isn’t that simple either. Why?
It’s all a matter of perspective. If I take the time to tell you all the above, and I fail to mention that there really are good days, even weeks … then I have missed an important part of the puzzle. It shouldn’t be easy to define what a special needs family is … what the additional needs of our children have done to us all.
Because there are some benefits, blessings, and joys that come from having children with special needs as well.
- True appreciation for every little smile or action, milestone and step
- An understanding of the fragility of life
- The smile or laughter on the face of a child you were told wouldn’t laugh
- The first step of a child you were told would never walk
- The first time your severely autistic little boy tried to hug you in his own special way (we call them “Bobby hugs”)
- That second after a seizure has ended and your child takes their first breath, all over again
- Snuggles that are rare but filled with giggles and sunshine
Having children with special needs has made this family tougher, stronger, and harder to beat. But it has also shown us that the world isn’t always out to get us. We’ve experienced incredible moments of true giving, blessings in the form of gifts, favors, food … empathy. Our world is different, of course, because we’ve had three kids with special needs.
But different can be a beautiful thing sometimes. And that’s something our amazingly awesome kids have taught us too.
What about you? Do you have a child, or children, with special needs? Have you found that the truth isn’t so easy to define in your house either? Have you dealt with epilepsy, autism, rare disease, or something else?