Meds, Moods and Mom

westofgrey.comHaving a newborn with Lissencephaly is like sending your child out across a mine field every day in order to keep them safe. In the moment, nothing is really wrong. You have a newborn. He struggles to keep his head straight, he sleeps, he poops. But every day you send him out across that field. Some day the bomb will go off. Probably not today. But you know it will. And you have to learn every day to come to acceptance of that reality. So you try with everything in you to welcome that child home every evening and re-memorize their face in case tomorrow is the day that it all goes to hell.

I’m not implying that we expect to lose Oliver suddenly. But we know that we have a strange future ahead and the days are counting down until that becomes…more true than it is now.

Oliver’s seizures are controlled by his medications and keep him down to 0-2 per day. This seems pretty good, except the neurologists want ZERO. Period. And he’s growing so fast (my 11-wk-old is wearing 12 month clothes) that his med dosage can’t keep up. We have to raise it every couple weeks. And the last time we talked to the doctor, it sounded like if his current dose doesn’t work (it doesn’t), we may have to go to adding a second medication. He also said that this only gives him about a 15% better chance at stopping them than being on just one drug.

The other problem is that any seizure med comes with side effects which can range from lethargy to digestive problems to aches or irritation. So as we raise his dosage to control the seizures, we also raise his likelihood for the side effects, which are already showing up.

The Tennessee Early Intervention Services is getting him into their program, making any recommended therapies free to us, but it might be several more weeks before the state gets us fully processed. And while I’m able to still be home for another few weeks thanks to an amazing group of coworkers who donated PTO from their own banks, we still need somewhere for him to go every day. And instead of worrying about simply which daycare we like best, we now have to worry about which one can handle monitoring him for increased seizure activity and keeping really detailed watch on his developmental milestones. We have appointments to tour the two main special needs daycares this week, but I don’t think they have openings.

He’s an incredibly good-spirited little man, despite everything. He rarely cries. He smiles and coos at the people he recognizes most when he’s really awake. I even posted a video of him singing with me today on my Facebook page. And maybe one of my greatest happinesses is that he really seems to like his room. He smiles and looks around so intently. He even coos at his mobile when I tap it for him. There was a moment after his diagnosis when it struck me that he might not ever recognize any of the things we so lovingly chose for his special room and it tore me open all over again. Now I know that he probably won’t ever be able to tell me so or roughhouse in his teepee, but he notices.

Meanwhile, I struggle daily to be even remotely the mom that I used to be to Margot. She’s three. Seriously three. And I’m sleep-deprived. It’s not a good combination. If we can come out of this year still liking each other it will be a glorious act of God. But she makes us laugh. (Right now, we’re watching Monsters Ustaferstidy – or Monsters of the Ustity, depending on when you ask.) And we need to laugh.

westofgrey.comSo we go on. We have to go on. And I take comfort in the tons and tons of parents of special needs children who tell us that their child teaches them a different kind of love than they could ever experience otherwise. I want to learn to love better, deeper, more unconditionally. Maybe Oliver can teach us all.

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  • Lyn Gibbs ShepherdJune 3, 2014 - 2:39 pm

    Dear Daughter, (yes I know this is public), you are an amazing mom. Your courage and unconditional love bless me. Your children are lucky to have you. Oliver is such a blessing to our family. You know we all adore him. Margot will live to be a teen that will remind you of three so take notes now. Take each day. Count all the blessings. Then the other stuff will be counted as part of this life, but not permanent. Oh how I love you! MomReplyCancel

  • Danielle Hoskins MaynorJune 3, 2014 - 2:53 pm

    Thank you for sharing your journey, friend. You all are in my thoughts and prayers. I know your words will bless all who read them. Lots of love!ReplyCancel

  • Gayle TuckerJune 3, 2014 - 4:54 pm

    We love you guys so much and pray for you and Oliver every day. I know the Lord hears, and He loves you even more. Your mom is right…the bad stuff isn’t permanent, but the love certainly is.ReplyCancel

  • JessicaJune 3, 2014 - 5:00 pm

    Sweet Alysa, I am just learning about Oliver’s lissencephaly. Of course I’m so sorry for the extra challenges and fears you may be facing with your adorable baby boy. I love what you said about wanting to “…love better, deeper, more unconditionally…” I feel that way, too. It’s a mom-thing. Hugs and courage, my friend!ReplyCancel

    • AlysaJune 6, 2014 - 8:45 pm

      Thanks, Jess. I think I felt that way before Oliver, but there’s something about him – and his potential for remaining very infantile in nature, that makes me sad, yet inspired. If only we could all remain infantile in our innocence and pure intentions.ReplyCancel

  • Joey Lynn Norwood TolbertJune 3, 2014 - 6:05 pm

    Beautiful post. I hope to see you soon. We have you all on our prayer list at work. We pray for you at home too. ReplyCancel

    • AlysaJune 8, 2014 - 7:12 pm

      Thank you, friend. We need it.ReplyCancel

  • Saska SookraJune 3, 2014 - 8:16 pm

    Margot I had no idea that you and your family were going through this! Your parents Lynn and Mike are awesome people and I am sure their kids are not much different:) You and little Oliver are in my prayers for healing, strength, joy and peace as you go through this storm. I”m sure you have heard the song Oceans by Hillsong, if not please listen:)ReplyCancel

  • Saska SookraJune 3, 2014 - 8:28 pm

    I had no idea that you and your family were dealing with this….you have a beautiful family and I love your parents, they are awesome:) My prayers are with you and little Oliver that Oliver will be in health and prosper in all things in the powerful name of Jesus. Prayers for you that the Lord renews your hope and strength, that you will run and not be weary, walk and not be faint. If you haven’t heard the song Oceans by Hillsong, have a listen. ReplyCancel

    • AlysaJune 8, 2014 - 7:12 pm

      Thank you Saska. My parents are awesome. I hope I can do as well! And Oceans is a fantastic song and one that I listen to regularly.ReplyCancel

  • Linda LauterbachJune 4, 2014 - 12:31 am

    Praying for you all and your precious OliverReplyCancel

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