This post was written by Kelly Arango who lives in Norwalk, CT and mom to Isabela who has Lennox-Gastaut Syndrome (LGS). Living Well With Epilepsy is grateful to Lundbeck, a Partnership Sponsor of the March 2017 Epilepsy Blog Relay.
1. YOUR ARE NOT ALONE.
When my daughter Isabela was diagnosed with Lennox-Gastaut syndrome (LGS) it was very overwhelming and scary. It’s not everyday your world is shattered into pieces when you learn your loved one has a condition with no cure. Finding others going through this can be a big help! When I found the LGS Foundation I felt part of a family that was able to understand my struggles. Knowing your not alone helps cushion this terrible roller coaster ride.
2. TAKE ONE DAY AT A TIME.
Sounds basic but trust me you will need reminders!! This is extremely important for your sanity. This roller coaster ride hast its ups and downs. Worrying about the future will add unnecessary stress to your life, when you have enough as it is. Never loose hope and never give up on your loved one with LGS.
3. YOU ARE YOUR DAUGHTER’S BEST ADVOCATE AND VOICE.
No matter what always know that you have the last say for medical, therapy and school decisions. You know your child best and therefore even if you lack a medial degree you are an expert when it comes to your loved one. You are more than qualified to make “the best” decision for your daughter with LGS. Always follow your instinct and weigh in quality of life in any decision you make. LGS is very complex and every case is different.
4. FIND YOUR NEW NORMAL.
Yes, it takes time to digest and embrace any diagnosis let alone an LGS one. You will need to make adjustments to your daily living. You will be learning all this nonsense jargon that doctors, health care providers and schools use, this will help you understand better when information is being shared with you. In the beginning it will be confusing but trust me “you got this”, you will become a pro at managing situations that a regular parent would think impossible and within this new normal never forget to enjoy life!
5. ENJOY THE ‘’INCHSTONES’’.
It was very hard for us when our Isabela never reached the typical child milestones. My heart quenched when I read those markers of what your child is supposed to be doing at points. This is why I came up with celebrating her “inchstones” any improvement IS improvement. We celebrate the little things like responding to her name, smiling, feeding herself finger foods and giving high fives! LGS has robbed us of many milestones but we gained and learned to appreciate her “inchstones”. Celebrating your loved one’s accomplishments is key during this tough road.
6. TAKE TIME FOR YOUR SELF.
“You can’t pour from an empty cup” take care of yourself first. I tell my self this pretty frequently. Life can get pretty busy when caring for a loved one with LGS. Between doctors appointments, therapy sessions and school meetings, you are pretty much left with not time for you, but “YOU HAVE TO MAKE TIME’’, even if its for a cup of coffee, a walk or reading a book. Trust me your body will thank you and you will feel refreshed.
7. EDUCATE AND BRING AWARENESS.
Educating family, friends and community its pivotal for success. Knowledge is power! I have found that Isabela is better understood after explaining what LGS is and how we deal with it on a daily basis. Being open and willing to educate and bring awareness will open many doors for you and your loved one with LGS. Knowing that my family and friends understand and cater to her needs at family gatherings and community activities has been a plus! If you educate about Lennox-Gastaut syndrome and epilepsy, you eliminate the stigma and make people more at ease!
The March 2017 Epilepsy Blog Relay™ was sponsored by Lundbeck – a global pharmaceutical company committed to improving the quality of life for those living with brain disorders, including epilepsy. Lundbeck connects people living with challenging seizures at www.LGSTogether.com and through the LGS Together Facebook page (www.facebook.com/LGSTogether).
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