I never thought early on I would be writing about the joys of special needs parenting. As I sit here almost six years later, I am so thankful for things I wish I could have seen early on in this journey, and I know I should make more time to reflect on them as opposed to the negative. So I thought it was only fitting to write a post!
There is so much hardship out there that special needs parents are dealt in addition to normal, everyday life that you can be consumed and sucked into the vacuum of “life is not fair” or “why me?” The reality of it is if we fill our minds with the negative, we will become that.
I have been there and honestly just got through a BIG hump of feeling sorry for myself, and my heart was hardened. I can go there pretty easily if I don’t focus on the good that has come out of this journey. Thankfully, there are so many people and influences in my life to help me pull up my big girl pants and strive to be joyful with life — in all things of life, not just the good and the easy but the hard and challenging bumps in the road, too. With that, I thought it would be good for me to reflect on my five joys.
1. Ability to see life with gratitude, not entitlement.
Being part of a special needs family, we realize that a certain standard of life is not guaranteed nor are we entitled to life or the expectations for motherhood. Everything is put into perspective when you really take time to think about it. If I start feeling sorry for myself or have a pity party on those challenging days, I pray for a heart change and try to reflect on how life can always be worse and can change in a heartbeat.
2. Access to a whole other village of supports as a mother.
You often hear the saying, “It takes a village to raise a child.” It is beyond true for the development and health of a special needs child. I am so thankful for the doctors, NICU nurses, speech, OT and physical therapists, ABA therapists, psychologists, counselors, special needs moms, etc. who have walked alongside me and educated me on caring for my son. I feel the knowledge I have gained is not only for my son’s benefit but for all the children whom I have the chance to be around. You don’t have to be the best or have all the knowledge. There are supports and resources out there to teach you, and all that pressure is off of your shoulders, sweet mama.
3. Growth and special bond with spouse.
Yes, I put this on here. It certainly wasn’t our original strength to connect over our son’s diagnosis and daily challenges. We were headed in the direction of living two separate lives like the other 80% of families that statistically end in divorce when faced with a special needs child. Over the years I am thankful for the above supports in counselors, friends, pastors, and trust in God that have helped us learn to communicate, share our feelings, and live sacrificially with each other as we face the challenges. We do share a bond that no one else understands. Whether it’s our best friends or our families, you can’t possibly get it unless you live it daily; and thank you to my husband who wants to get it and has the heart to live this life with me.
4. Courage and strength you never knew you had.
Every aspect of motherhood is different and unnatural. But with that you learn so much about yourself and what YOU can do that you never thought was possible. It is a forced way into truly understanding what sacrifice is and that the journey has nothing to do with you but with what is best for your child. I am a better person because of my son and forever thankful for him teaching me what true strength and passion for life really is. Nothing about this journey is easy, and your growth as a mom, person, wife, friend, etc. will benefit from the strength and courage you acquire throughout the journey.
5. Celebrating the little things.
We learned to celebrate when the G-Tube came out and our baby was able to feed on his own. I have an entire book celebrating the little things in life that most infants are thankfully never challenged with. One of the smallest, most memorable celebrations for me is when my son could go out in public after the first winter was over and RSV season was at its end. I could finally take my seven-month-old out in public and show him off (and when I mean public it was to show him off to people I worked with and the grocery store — he never left grandma’s or our house until he was seven months old)! Looking back on all those moments just brings me so much joy and thankfulness. If I ever feel poopy, that’s definitely my go-to for inspiration to keep pressing on.
I really feel in my heart that my son needs me to be the positive light in his life that doesn’t crumble when life doesn’t go smoothly. A special needs child is going to face so many challenges in life already. Instead of him picking up on the negativity in my voice and heart, I want him to be able to see and remember my actions or attitude when overcoming hardships with love and strength.