Revelation 21:4 And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.
5 And he that sat upon the throne said, Behold, I make all things new. And he said unto me, Write: for these words are true and faithful.
I wait for the day when those terrible things have passed away. No more death, sorrow or pain. I say that not for my own personal benefit but for Larkin’s. A sweet little girl who has never harmed anyone or anything. I used to sing a song growing up and the final verse was that scripture. In the past 2 and half years I cling to it. Today I was exposed to another group of parents. Parents who walk the path of special needs. Parents whose Faith is in every word they write along with acceptance.
In reading their stories I was transported back to the very very dark days when Larkin first began to seizure. Fear is powerful and it wrapped it’s long arms around me and held on tight. Grief was right next to it only she has fingernails that dig in. In fighting for Larkins’s health and the hopeful return of our child I never really thought about time. Time has flown by. It’s been a tough journey BUT it’s gone so fast. Scary fast. Day after day we visited with doctors, read information, searched for answers or “cures” online, met with more parents, EEG’s and blood tests. We made a decision in August of 2007 after her diagnosis of Lennox-Gaustaut. I was talking with my mother-in-law just 2 days ago about LGS. She chuckled as we were struggling to get Larkin into a dress to try on for “family picture day” this coming Tuesday. She looked at me and said “I stopped reading after, Lennox-Gaustaut – catastrophic diagnosis.” This is a woman who with all of her might will push, shove and WILL Larkin into responding. She taught 3rd grade for many years. She knows and loves kids. She LOVES this little girl and she wants her to be all that she can be. Like all of her grandchildren, I just happen to have the only girl. 🙂 But reading the word “catastrophic” will bring anyone to their knees when it is associated with someone you dearly love.
We made a decision to begin a medication that could potentially – kill her BUT would help her. Quality vs Quantity. What’s a parent to do? We chose quality. Quantity is up to Him. I write this today to share the tremendous response Larkin had to her new drug. Within 6 hours we saw her smile. 12 hours later – we heard her laugh. People exposed to only typical children have NO idea what eye contact and noise means to those of us with special needs children. It’s the force that keeps a parent going on those long sleepless nights. It’s the payment for heartache, tears and worry. So if you are faced with a decision that makes you anxious, know that there are those children out here that responded, eventually stopped seizing and gave us reactions. Between the Ketogenic diet, Felbatol and Vigabatrin – little girl lost (as I have called her) is found and this morning gave me the most amazing giggles. Never lose hope. Never lose Faith.
He will wipe out every tear, no more pain, no more sorrow. True and Faithful words.
You will find a quick video of her giggles and love that we enjoy so much. We don’t take it for granted – we have lost it off and on and I hold my breath. We are not promised a tomorrow but for today – it’s all good. Video
wow. no comments here yet? Wow, A. How truly joyful to see such a responsive happy baby!