Family, Inspirational, Mom Life, Parenting

Am I A Special Needs Mom?

Am I?

This is a question that I have struggled with since discovering Scarlett’s conditions. Am I a “special needs” momma? Part of me has always said yes, but another part of me says no. So what’s the answer?

Merriam-Webster defines Special Needs as: “any of various difficulties (such as a physical, emotional, behavioral, or learning disability or impairment) that causes an individual to require additional or specialized services or accommodations (such as in education or recreation)”.

Per this definition, I am and so are many other mommas that may not feel that they are because their child’s condition is not one that is normally seen as special needs. With Scarlett’s condition of Persistent Hyperplastic Primary Vitreous (now more commonly known as Persistent Fetal Vasculature), we are still, four months in, learning exactly what it is. Our pediatrician, who has been in practice at least 30 years had never heard of her condition! So if a trained medical professional has not heard of it, why would it be one of the more mainstream conditions that are labeled special needs. Scarlett not only will require a prosthetic to help her eye orbit to grow properly, but down the road may need other therapy to help with depth perception. People with monovision can struggle with depth perception and right now we are not sure what will happen down the road as we live in the right now.

Special Needs Moms = Super Hero Moms

I know many moms reading this are thinking that all moms are super. Although this is true, Special Needs Moms have to educate themselves, their family and extended family about their child’s condition. It is a constant learning process. We have spent every day since Scarlett’s diagnosis learning about ocular prosthetics, possible complications if her orbit doesn’t grow correctly, and many other facts that I never would have thought I would have needed to know.

Special Needs Moms eat, breathe, and sleep their child’s condition and treatment. In addition to that, if they have more than one child, they are also trying to make sure that their other children understand why momma may not be able to spend as much time with them as they want her too. You have to find ways to carve out time just for your other children while making sure that whoever is taking care of your special needs child understands exactly what it takes to care for them whether they have autism, cystic fibrosis, or a prosthetic. I don’t know how to fully explain exactly how hard it can be at times if you have not been in this position. There are also different degrees of being a special needs mom depending upon your child’s exact condition.

In the end, I’ve learned that it can be lonely. There are times that all you want to talk about is your child, their condition, and what all you have to do for them. Other times, you just want to be alone and rest. This is not always possible, especially if you have other children. I have taken the role of being Scarlett’s advocate straight on and full force. I started this journey I am on, because it was hard for us to find information on her condition. I did this to help keep this momma sane. Both my husband and I feel that we were given this medically special child because God knew we would take the best care of her we possibly could. My granny, also, says that God gives special babies to special parents for a reason.

Shout out to all momma’s… especially those of special needs children… you have my love, respect, and understanding.

6 thoughts on “Am I A Special Needs Mom?”

  1. As a special educator, I applaud you for your determination to advocate for your child. I have no doubt that you will be able to nurture and help your child reach her full potential. I would suggest that you try to form a support group of other special needs parents to help you through the challenges that may come.

    Like

    1. Thank you so much for the kind, encouraging words! I was able to find 2 Facebook groups for 2 of her conditions. They have been an amazing resource. I also have a parent I connected with early on whose little one is 1 month ahead of my girl with the exact same congenital defects. Then I now have had 2 parents just starting their journey contact me through our IG page! I am fulfilling my purpose of creating the blog already and it is amazing!

      Like

  2. My son was diagnosed on the autism spectrum at age one. He’s five now and I’ve never called myself a special needs mom. I think, because motherhood is lonely and grueling enough without another distinction. At the time, the diagnosis felt so heavy (and scary!) to me. I didn’t want to be associated with it at all. He has made strides, thanks to therapy. I like to think avoiding the label helped, but who cares now? Anyway, stay strong mom. The road ahead is a long one, but you’ve got this!

    Liked by 1 person

    1. Normally, I hate labels and you are right motherhood is hard enough without them. But it was more of a change of definition for me. I don’t go around calling myself a special needs mom any more than I walk around announcing I’m bipolar 😁 I’m happy your son has made strides. It’s amazing the therapies that have been developed over the last 20 years for autism ❤

      Like

  3. Gentle, gentle, ease and grace, my darling. Labels aside, you know you are on a very sacred journey of embracing Love, right? You (and Your family) are called to be The One(s) to watch over this sweet soul. I am seeing all your needs provided for in God’s right and perfect time as you embrace your path. I am keeping you all in my prayers knowing that all is conspiring for your heart’s awakening … and Love bigger than you can imagine <3. Blessings, Evelyn, PathofPresence.com

    Liked by 1 person

  4. This is a great eye opener for me who doesn’t know what it is to walk in your shoes. Thank you for sharing this and opening your heart. So much love to you and your beautiful family

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s