I DIDN’T KNOW
| Seventeen and naive, |
| I wouldn’t have believed, |
| A decision – whatever |
| Would affect me forever. |
| My 17-year-old brain |
| Knew nothing of fatigue, |
| Autism, blindness, |
| Nor special needs. |
| Eighteen-years-old |
| Already a mama. |
| I wouldn’t have thought |
| There would be such drama. |
| My 18-year-old brain, |
| It didn’t know, |
| A tiny baby girl |
| Would lead the way to go. |
| At the hospital, |
| In a small room we waited, |
| While my tiny baby girl |
| Was heavily sedated. |
| Surgery was needed |
| On my baby girl’s brain. |
| I really didn’t know |
| Life would never be the same. |
| For the next few years |
| In our home we learned much. |
| Early Intervention goals, |
| Therapy and such. |
| When I was twenty |
| The day I married, |
| This sweet little girl |
| Down the aisle was carried. |
| My 20-year-old brain, |
| Oh, I didn’t know, |
| How profound it would be, |
| How deep it would go. |
| I didn’t know |
| Even way back then, |
| We would be carrying this girl |
| Until who knows when. |
| Then at twenty-two, |
| A baby boy blessing. |
| Life still seemed simple, |
| I was not stressing. |
| Almost twenty-four, |
| Another baby girl blessing. |
| The days became busy, |
| Each one kept us guessing. |
| I did not know, |
| The impact on siblings. |
| Blindness and autism, |
| Focus never-ending. |
| How do you choose, |
| Whose needs come first? |
| Which at each moment |
| Needs you the worst. |
| One blind, one chronic illness, |
| One not thriving. |
| How did the days become |
| Just about surviving. |
| Years of each day, |
| Living moment to moment, |
| Failing to meet all needs. |
| Only, I didn’t know it. |
| All through each day, |
| Looking forward to bed, |
| I still didn’t know |
| The lifetime stress to dread. |
| At thirty-six-years-old |
| The kids were all teens. |
| Life was still a challenge, |
| And I had no dreams. |
| After devoting those years, |
| To everyone else, |
| I was empty, I broke, |
| And had to find myself. |
| At thirty-seven-years-old, |
| A family divide. |
| My own house and college, |
| A new life I tried. |
| But I still had to focus, |
| On that first baby girl. |
| The one whose sweet head |
| Is still full of curls. |
| Intense planning, |
| Meetings and evaluations, |
| Endless ideas were discussed. |
| She needed vocation. |
| The light at the end of the tunnel, |
| Just one more transition. |
| Aging out was inevitable, |
| It was soon graduation. |
| I didn’t see, |
| It all wouldn’t matter. |
| I would end up carrying this girl |
| For ever after. |
| I hadn’t known, |
| What giving up meant. |
| And now that I do |
| My life feels spent. |
| I didn’t know, |
| ‘Alone’ would be theme. |
| How swallowed by this life |
| Each day would seem. |
| What I do know is |
| Three blessings I was given, |
| All gifts from God, |
| My own pieces of heaven. |
| And I haven’t forgotten, |
| Endless smiles, joy, and laughter, |
| Unconditional love, |
| And Happiness ever after. |
| Autistic Interpretations |
shortlink: https://wp.me/p5DUsf-1vP
So beautiful! We are on your Instagram (Kaysia’s mom with Brownie!) and I was also young… 22, no idea Kaysia would have Down syndrome and almost die in the NICU until after she was born. She’s now almost in middle school and to this day our only child, all we know. People don’t realize that our kids don’t go off and live their lives after 18. We are parents and caregivers until the day WE can no longer do it! Big hugs Mama! Beautiful poem.
Wow, this brought tears to my eyes. Heartbreaking yet beautiful writing. Such a burden and such a joy. Hugs x
❤️
Thank you for sharing apart of yourself with the world~ you can’t imagine how it touches us all, especially us special needs moms!
Thank you! ❤️