Tessa turned 5 in January, and while time has flown by, there are moments that seem like a million years ago. I have many moments I regret, and some I wish I could have a do-over.
I am going to be brutally honest, because I feel many parents that have a child with a disability aren't often. I don't fault them, because often we are judged unfairly & harshly by either other parents, or by people who don't have a child with a disability.
I love Tessa just as much as my boys. I love her smile, her funny sense of humor, her tiny feet & hands, her beautiful blue eyes, with the amazing brushfield spots, her amazing zest for life, and her sweet kisses & hugs. I wouldn't change a thing about her, including her extra chromosome.
But, I do have days I wished she didn't have to work so hard for the simple things that come so easy for her peers, that she didn't have to be frustrated when people don't understand her, when she is unable to communicate her needs & wants as easily.
There are days I hate that Tessa has Down syndrome!! There are days I hate that when trying to advocate for her, I become so overwhelmed I cry. I hate that I am not sure if what I'm doing is what is really best for her or is what she would have chosen for herself.
One thing I do know, is I can say I am trying my best, I am doing the research, I'm asking for advice from those that have been on this journey longer.
We are about to start a new chapter of her life, and while it's exciting, it's equally as terrifying too. Tessa will finally graduate from preschool next month, and she will be off to Kindergarten. It is hard to believe we are at this stage already, and yet it makes me sad to think time is only going to go much faster. Tessa has been in preschool since she was 2 1/2, including 6 weeks during the summers, before that she had therapy every week from 6 weeks to 2 1/2 yrs. Tessa has not known a time without someone messing with her, trying to teacher her something in someway.
This summer she will have ZERO school or therapy!! She gets to be a typical 5 yr old, playing, laughing, experiencing life without a having everything being a therapy.
All too soon summer will be over, and the learning begins again. I feel good about my choice for her kindergarten. She will attend the same school the boys attended, its a small school, and it's perfect for her. She will have 2 amazing teachers, who can't wait for her to come, she has a great case manager/special ed teacher, who also is excited for her to come. Tessa will be fully included in kindergarten. She will be in a class of kindergartners and 1st graders. She will learn so much from her peers, and they will learn so much from her too. I hope she makes friends, and I hope they are patient & kind with her. She will still get Speech, OT, and PT. She will eat lunch at school, she will experience gym, music, art class. I am excited & can't wait to see her blossom during the year.
She is behind her peers, but she will be given the same work, only modified. Will she know simple addition/subtraction, how to read sight words, write her name by the end of the year? We have no clue, will her peers? Yes! But she will be given the same opportunities as her peers to learn those things, and someday, in her own time she will reach her full potential.
So when I look back on her first 5 yrs, I wish I could go back to that day in the Dr's office when I was told she had "soft marker" for DS, and tell myself it's going to be OK. I wish I could go back to the day she was born & I was alone in a dark hospital room crying myself to sleep after seeing her laying in the NICU and tell myself that it was going to be OK. I wish I could go back to my week in the hospital after having her, and tell myself to pick her up, love her, don't be scared she just wants to be loved & she is going to be OK.
I wish for the first few months I could have seen past her diagnosis, and seen how amazing she was, how much those around us embraced her & loved her.
I will never regret fighting every battle with family, friends, doctors, therapists & teachers over what I wanted for her, what she deserved. I will never regret fighting for her.
So here I am with the most amazing 5 yr old ever, and some days I can't believe I get to be her mom. I get to wake up to her sweet smile. I get to cuddle with her every night, kiss her, tell her I love her very much. I get to watch her drift off to sleep, and I know she knows happiness & love.
There will be many more battles, many more sad, and tough moments in the future, but there will also be so many more happy moments, laughter, kisses & milestones.
I can not wait to see what the next 5 yrs hold!!
