Monumental Milestones

Milestones are moments in our child’s life that mark accomplishments in their development. Most children meet them at or about the same rate as their peers. When a milestone is not reached as fast or with ease additional assistance might be needed to reach those milestones. Many parents of special needs children, like myself, find themselves in this position. It is these great struggles that make us appreciate smaller accomplishments and make our kid’s milestones seem monumental.

Ten years ago there were moments I didn’t even know if we would make it to this point. The uncertainty that came with my daughters diagnosis seemed overwhelming and stifling at times. When you hear the words “That is the second most dangerous tumor I’ve seen” come out of the mouth of the Doctor, your head starts to spin. Suddenly this life you have planned for your beautiful 18 month old daughter is changing course.

For 10 months I grew this child inside me. I read parenting books. I visited the doctor. I made changes in my life so that she would be perfect. And she was. She is. She just isn’t what I planned her to be. She’s different. She’s better.

After the diagnosis we were whisked off to another city were she would endure an 8 hour surgery. For recovery, she would have to start from the beginning. She would have to re-accomplish all the milestones she had already met and fight to reach the next ones.

First she would have to learn to eat again. We would be introduced to a life with speech therapists and nutritionists for assistance in this area. Second, she would need to learn to walk again. Welcome a long string of physical therapists for this step. Third, we would learn that the surgery caused some mini strokes leaving her with left sided weakness. That’s how we added our occupational therapists. Then if that wasn’t enough, years later the news of vision loss would be the invitation for a Vision teacher, a braillist, and an Orientation and Mobility therapist.

With each new obstacle we added a team member, a family member. It was if she was gathering an army to aid her in this war. In a way it was a war. She was fighting to reach the next milestone. Our little girl was a fighter and she knew she needed help so she happily took all that she could get but gave all that she had. She was proving she could meet those milestones. She was winning this war.

This year our daughter will participate in the fifth grade walk. On the last day of school all of the fifth grade kids will walk out of their classrooms and parade down the hall in front of each preceding grade level. The children from those grades will stand, lining the halls throwing confetti and applauding in celebration of this class of kids heading off to the next step in their educations.

My daughter will be one of those kids celebrated. This will be a BIG milestone.

To many parents, it will be an emotional day as they watch their child take part of such a significant display. For me though, the tears that will flow, the laughs that will happen, and the pride that will shine through my cheek burning smile will come from a different place.

I will watch my daughter in the shower of tiny paper shreds as she makes her way through the crowd and I will know how hard she fought to earn this right of passage. I will be taken back to the day we celebrated her sitting up, how her father carried her ever so gently to physical therapy so she could learn to walk again, and how she was dubbed the “Million dollar baby” because she had a mean right hook. I will have flashbacks of sitting in the ophthalmologist office, witnessing my daughter unable to read letters the size equal to those used on billboards. Memories of every time we heard the tumor was growing again will start to make their way into my thoughts along with all the other struggles this sweet precious child overcame.

Oh this is, and will be, a special day for all involved, and I do not discount any other accomplishments the other children made along the way either. I just know as a mother of a child with special needs, a child who has both a physical impairment and some cognitive delays, this day will hold an entirely different meaning for me as any milestone does. I will know that this tiny fighter wearing headphones to keep the noise out never gave up through all her struggles just so she could walk down this hall on this day. So if you see a mom clicking photos of a little strawberry blond swinging her “seeing eye” cane don’t mind me, I am probably just documenting a monumental moment.