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It has officially been a year since my world was turned upside down – my daughter turned one this week! (AND we have survived the first year…a feat that hardly seemed possible as we viewed our new life from inside the walls of the NICU only 12 short months ago.)

In my very first blog post, I spoke about “embracing the unexpected” in regards to raising my special needs daughter. Admittedly, this is still a work in progress!

The range of emotions that consume me regularly continues to take me by surprise. The most unexpected is the loneliness – this one seems to be lurking around every corner and is the one I have the most difficulty overcoming.

I have been so fortunate to connect with families all over the world who are on the same journey with us. I am a member of several private Facebook groups for parents of children with the same syndromes as my daughter. The support provided by these groups amazes me on a daily basis! We are able to share our joys, concerns, frustrations, questions, and accomplishments with a family that we know has experienced the same feelings at one point or another and without judgment. These groups are my lifeline in so many ways!

Yet, as wonderful as my Facebook family is, “talking” with my tribe of special needs moms remotely across the United States, Turkey, or Spain, just doesn’t quite have the same impact as meeting a friend in flesh for lunch or coffee.

Several months ago, a fellow Facebook mom shared a story about a “first” for her as a special needs parent. She had a lunch/play date with a couple friends she had not seen since prior to having her child. Throughout the lunch, she came to the realization that living the life of a special needs parent had left her with very little in common with her former friends. She found herself frustrated more often than not and unable to relate to the daily challenges faced by these friends. Numerous other parents replied with messages of support, while sharing their own experiences of frustration and feelings of isolation.

At the time, I thought, “YES! I can totally relate!”  Don’t get me wrong…I have wonderful and extremely supportive friends. On the rare occasion that I am able to connect with these friends, I truly enjoy their company and the opportunity to catch up on our lives. I need these connections to maintain a sense of normalcy and because they are just great people!

We could never learn to brave and patient if there were only joy in the world.(3)

Yet, SOMETHING is still missing and I can’t even put into words what that SOMETHING is….all I know is that I have such a strong need for a tribe of special needs moms.

I NEED to be in the presence of people who are experiencing similar struggles and understand what it is like to walk in my shoes on a daily basis. I NEED to be able to sit across the table from someone and take a deep breath, while thinking to myself, “I am not alone.” I NEED to be able to be with another parent who knows what it’s like to feel like you are drowning among all the doctor appointments, therapy appointments, maintaining medical supplies, managing daily medical needs, the financial stressors of raising a special needs child, and the stress it puts on your relationships. I NEED to commiserate sometimes about how difficult it is to observe other typically developing children, while never knowing if your own child will master the same skills and the ensuing pressure to pack every waking moment of your child’s day with therapies to accomplish the milestones that are so difficult for him/her to achieve.

I’m still looking for my special needs mom tribe and hope that as time goes on and my daughter gets more involved, I will find new ways to connect with other families.

Any other local special needs parents out there who have struggled with this? How have you found ways to connect with other special needs moms?




  1. Annette April 21, 2016 at 6:44 am #

    I am not a special needs Mom but when we were at the Family Museum in Bettendorf, I saw a posting for a special needs night coming up. Maybe if you went there, it would give you a chance to connect??

    • Megan April 21, 2016 at 8:26 am #

      Thank you! I will definitely look into it!

  2. Sue N April 21, 2016 at 7:55 am #

    Hugs to you and your beautiful family Megan!

  3. Julaine April 21, 2016 at 8:59 am #

    I have a special needs daughter, our struggle is she does not look like she has special needs so people judge her and is as bad parents. There is a special needs of the quad cities on Facebook that is an excellent support group

    • Megan April 21, 2016 at 9:08 am #

      Thanks Julaine! I will check it out!

  4. Julaine April 21, 2016 at 8:59 am #

    I have a special needs daughter, our struggle is she does not look like she has special needs so people judge her and is as bad parents. There us a special needs of the quad cities on Facebook that is an excellent support group

  5. Jenn April 21, 2016 at 8:33 pm #

    Maybe an AEA has some resources for finding support groups?

    • Megan April 22, 2016 at 12:58 pm #

      I’ll look into that as well! Great idea!

  6. Rachel April 21, 2016 at 11:29 pm #

    Not sure what kind of special needs your daughter has or how common? Our daughter is Type 1 diabetic and I too felt like I wanted to connect in person with other moms, even though the facebook groups are great (where else could you message about a particular challenge at 3am and have dozesn of replies within minutes). A friend and I started a local support group of our own, advertised through drs offices, facebook, JDRF etc and although it started small it grew to a good size and we were able to meet several other families that faced similar challenges. These moms are often my lifeline. We also sent our daughter to special camp for diabetic children. Some camps have special weekends for families of younger children. It’s worth a drive to find one that fits your special needs. Here we met several families from the region we became close to. It makes all the difference. Good luck!

    • Megan April 22, 2016 at 12:59 pm #

      I have had several suggestions to develop my own support group! Maybe that will be a summer goal for me! 🙂

  7. Cassie April 22, 2016 at 12:16 pm #

    Me to! The struggle is real! I cannot find this Facebook group people are referencing?

    • Megan April 22, 2016 at 12:58 pm #

      Sometimes just knowing other people struggle with the same feelings helps! The FB group for the QC area is called Special Needs Families of the QCA.

      • Cassie April 25, 2016 at 8:22 pm #

        Thanks! Sounds like a great idea- I’m in!

  8. Monica April 29, 2016 at 8:28 pm #

    Thank you so much for writing this piece! I feel so guilty for having these same feelings. It’s comforting to know I’m not alone. Hoping we both find our tribe soon!

  9. Amanda May 3, 2016 at 1:47 pm #

    Is that a photo of your daughter? My daughter and I were born with a cleft and have a couple syndromes associated with that. I know quite a few support groups, as well!

  10. Annette January 12, 2017 at 2:12 pm #

    Hi Megan! I am also a special needs warrior mom 😉 My daughter is 8 and has a rare genetic disorder. I understand everything you are saying! It can. It can be so lonely sometimes. Like you said, some friends are accepting and still good friends then there are those that just “don’t get it”. It’s difficult and after 8 years and two more kids, I’m finding my way. I have a very small tribe but they are the ones I can count on when I have a bad day. I hope you find your tribe soon! Much love!


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