Wednesday, January 23, 2013

Real and Raw- Special Needs

 I've really wanted to start blogging more about me personally on this page and not just the going ons in Alaska. It is my desire to reach out and connect personally, so I'm stepping out of my comfort zone and hoping to be embraced.

 If you don't already know, I have a daughter that is special needs. We call her Peanut. You can read about her miracle story. She has been diagnosed with microcephaly, which means small head, and cerebral palsy. Due to her brain trauma at birth, she has developmental delays. She is a tiny, fragile thing who puts up a fight.

 My youngest daughter is 2 years younger then Peanut, we call her Snugglebug. Snugglebug was born completely healthy. As she gained weight, I knew she would pass Peanut because Peanut didn't gain weight fast. Generally, Peanut was in the 3% for weight gain. That time has come. Snugglebug is a pound heavier then Peanut. That didn't bother me as much as I thought it was going to, but it still stung.

 The hard time I'm having now and I don't think I'm truly facing is that Snugglebug is going to pass Peanut developmentally and mentally. They play so well together right now. It's like they are on the same page. People constantly ask me if they are twins.

 A lot of "what ifs" cross my mind. What's going to happen when Snugglebug passes Peanut? Is Peanut going to be left behind? Or is it not going to bother me as much like the weight issue. I'm so sad when I see my Peanut having a hard time engaging other 4 year olds. No parent wants their child left out.

 What's going to happen when she is older? Will she have the life her brother and sister will have? Will she be able to engage other teenagers? Will she have friends that call her to talk? Will she have crushes? Will boys be interested in her? Will people find her as beautiful that I think she is? Will she be able to go to college? Will she be able to live on her own? Will she be able to get married and have a baby? All these questions bring pain to my heart because I don't know the answer. I'm afraid to know the answer.

 Parenting is hard. I don't have answers. All I can think about is what the neurologist told us, "peanut will tell and show you." The more I realize I don't have control of my life, the easier it is to let go and live. But it doesn't mean I don't have feelings through it. I'm sad and afraid for her. Then I look at her and how much she loves life. It brings gladness to my heart and I'm not as sad and afraid for her.


  1. Jamie, you have a heart many of us grasp for. Even though I have no kids; those questions are always going through my mind. I'm sure it goes through my parent's heads as well. Thank you for sharing your heart.

  2. My baby was born 4 months ago. She is God's best gift to my family. She is a healthy baby and yet I still wonder the same things you do. Peanut will have a happy life because she has you. God has a special plan for her. Trust Him. You are a strong woman and the best momma Peanut could have, that's why God sent her to you, so she would be in good hands =)
    Opening one's heart to others is never easy. I admire you already.
    God bless!
    Abi Nelson

    1. Thank you Abi for your kind words and congrats on your new sweet one.

  3. Bobbie -Anchorage Macaroni MomJanuary 26, 2013 at 9:39 PM

    I bet Peanut is going to grow up into amazing women with a mother like you. Just stand behind her and do YOUR best (your best is yours alone, and nobody else's!) and you'll be just fine. I commend you for surrendering her to God too. Sometimes we moms can be so hard on ourselves and with or without special needs we expect ourselves to be able to do it all, without getting tired. We can be good mothers and still be educated and challenged as time passes. We are beginning the process of getting our oldest screened for potential learning disabilities. Taking that leap was a huge journey for me . I know it's not the same at all but I get it- Thanks for sharing your heart . It's ok to have those feelings and give yourself permission to feel them. If you ever want to grab a coffee and chat ....I'll be a ear to listen.

  4. Our first baby was born and got sick early on ending up with severe CP. He is 5 now but in a wheel chair and doesnt talk but he has the most amazing smile and he's my everything. We have had two more kiddos both girls ages 1 and 3. I really struggled with everything you mention in the post because the first time our 3 year old starting hitting milestones we were blown away. I've come to terms that our little boys life wont be comparable to his sisters, but if we can keep him happy and smiling that really is enough for me.

    We havent updated his blog in a year but you can see his cute face here if you're interested

    Love the blog!