December 18th, 2016…

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I think 2016 saw only 1 post made here on this little family blog of ours. Facebook and Instagram, have been my primary source of updating this year since it’s just a really quick and easy thing to do. However, this morning I saw a really lovely comment here from a lady named Ann, who I’ve never met. She said that her 8 month old son had just recently received a similar diagnosis and she’d spent the last 2 hours reading our journey with Foster. I can  totally remember being in her shoes. Diligently searching google for hours, looking for other families in similar situations. As the blogger, sometimes I think it’s only important to update when something big is happening. Like I should post an update if he’s in the ICU because all of our family and friends want to know what’s going on. But if I think back to when I was searching, as a new medical mamma, I think I really just wanted to see normalcy. I wanted to see that it was possible to have happy moments and a happy life, in the midst of all the chaos that can be raising a very medically complex child. I just wanted to know that we wouldn’t be living in the hospital forever, that we’d find our groove and be well supported at home. And I think that’s a place where we’re at now. So maybe it’s important for me to share the normal boring day to day events too; since I’m so incredibly blessed to have them.

So for all the Anns of the world, I want to say that raising Foster the last 3 years, has been one of the absolute best blessings of my life. He teaches us profound lessons on a daily basis. He radiates love and happiness more then anyone I’ve ever met; despite the hardships he faces in his life. He is the definition of pure innocence. He literally can do no wrong. I shared recently on Instagram a little snippet about Foster, regarding his baby brother Fletcher, learning to crawl. But I’ll share it again here because I just think this little story, is absolutely the best description of Foster and how he faces life.

“One of the many joys of special needs parenting, mixed emotions. Sometimes I don’t know whether to laugh or cry. Like tonight, while Clay, Foster and I sat on the edge of Foster’s bed, with Foster sitting up on my lap, leaning against my body to support his head. I had his little left hand in my left hand and his little right hand in my right hand, as I helped him clap and cheer on his baby brother, as Fletcher took his first good attempt at crawling. I root on Fletcher, all while silently reminded of the milestones never met. Feeling a little sad for Foster, I look down at him sitting on my lap, as we clap and he’s smiling. This little boy is such a perfect human in so many ways, he never compares himself or feels sorry for himself and his lack of mobility and movement, doesn’t stop him from feeling the joy of being included in cheering on his little brother. I am constantly reminded of how much I have to learn from a little boy with no words to speak.”

With that said, our life is certainly not without chaos. At best, we still spend about three days a week at the children’s hospital, for regularly scheduled appointments and treatments. Foster is followed by the Neurology clinic, Endocrinology clinic, Nephrology and Urology clinics, Pulmonary clinic, Cardiology clinic, G.I. clinic, he see’s a Pediatrician, a Physiatrist and physio, occupational and speech and language therapists. He has routine, regularly scheduled tests such as EEG’s, ECG’s, 24 hour holter monitoring, oximetry tests, blood and urine lab work and spends full days each month in medical day treatment receiving IVIG and Pamidronate infusions. This is our best case scenario. Then you can tack on the monthly (maybe every other month) episodes of status epilepticus resulting in hospital admissions to stop the uncontrollable seizing (that was this week for us).

I remember when Foster was first diagnosed, watching documentaries on TV. Foster was diagnosed at about the same time that medical cannabis started getting a lot of media attention in pediatric epilepsy. So there were a lot of TV segments available about kiddos with seizure disorders. Anyway, I’d see these documentaries on kids having hundreds of seizures a day and I can remember just literally being in shock. Like I just didn’t know that was possible. I didn’t know these conditions existed and I remember just feeling blown away by these stories. And the interesting thing now, is that by the time Foster started experiencing periods with hundreds of seizures in a day, I had become so desensitized to seizures, that I sometimes don’t even feel like our journey is worth sharing. Then something will bring me back to the beginning, before I became so desensitized to it all and I can vividly remember how profound those initial stories felt to me.

I’ve also found that I kinda hate being associated with the diagnosis of epilepsy. I mean technically Foster has a very rare condition, caused by a genetic mutation to his SCN8A gene but the larger umbrella diagnosis is Epilepsy. And the reason I cringe at that diagnosis is because, I feel like the word epilepsy in no way answers anyone’s questions about Foster. If a stranger in a store sees Foster in his wheelchair, with his feeding pump and his oxygen and asks about his condition and I say “oh he has epilepsy” they’re just left thinking, so why can’t he move? or talk? or eat? Probably the main reason though, why I hate the diagnosis of epilepsy, is because I feel like it totally discredits everything he’s had to endure in his life and our life. Realistically, most people think Epilepsy is 100% controllable. If you meet someone and they learn that your child has cancer, that person automatically understands the threat that disease poses to your child’s life and they can assume the emotional tole that diagnosis takes on the parents. If you meet someone and they learn that your child has epilepsy, it does not have that same impact. And yet, there are terminal and life threatening variations of epilepsy, some even claiming that as many as 50% of the kids diagnosed with these forms, will pass before the age of 2! But nobody knows about it. Anyway the point of the story is, I’ve just decided that if the reason I hate the association with epilepsy so much, is because of the lack of knowledge out there, then that just means I need to do more to make it known. I have to remember the profound impact that Foster’s daily life has to someone hearing for the first time ever, that there are children suffering through hundreds of seizures in a day.

Most importantly I want to take the opportunity to show people the light the lives inside of Foster, the twinkle in his eye, the joy that radiates from him on his good days. Because I know most people don’t have the amazing opportunity that we have to experience a deep and intimate relationship with  someone like Foster. And then lastly, I hope that our life can shed some hope to those new families out there just getting their diagnosis; that you can experience happy moments and grief at the same time. There is a cloud of anticipatory grief that comes with a life threatening diagnosis but we try our hardest not to live there. Clayton and Fletcher don’t know it but they have huge roles in offering Foster the fullest life experience. I really want to post more frequently (then once a year haha) so that the new families in our shoes, can see that it’s possible to lead a really normal and happy life despite all of this. Because that’s really what I needed to see back then. I wanted to see what the future might hold for Foster and I wanted to see that it was going to be okay even if it wasn’t as I’d envisioned it to be. Clayton and Fletcher are going to get some more attention on here as well since their such huge contributors in achieving our normalcy as a family and balancing out the sad moments with happy ones too.

So now for the family members following on here that don’t use Facebook. Here’s a little recap of 2016 in photo’s; since I haven’t posted anything really this year 🙂

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One thought on “December 18th, 2016…

  1. Thank you for this! ❤ And it's so lovely to see your family thriving. What you say is true… people want you to think positively and assume my baby will get better because of a lack of real understanding of the disorder. I know they mean well, but awareness and education will go a long way. Wishing your family a wonderful holiday season… you are such a great mama to all of your kids!

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