It’s been a very long time since I wrote a post about my daughter, Tatiana on this blog or on the blog I maintain just about her, Designer Diva: Handcrafted by God and I’ve got the genes to prove it. It is very difficult maintaining one blog never mind multiple ones but that is not the main reason I stopped writing, truthfully I found that after her toddler years, there wasn’t much to say about her and her development that was revolutionary. There still isn’t really but I was reading a blog about another little girl with Down syndrome and the challenges her mother faces raising her. It brought tears to my eyes when I read the story of her losing her daughter for a few moments. I know the terror she faced when she realized her precious child was gone because I have felt it as well.
For those who don’t know, let me bring you up to speed. I have a 6 year old daughter who was born with Down syndrome. She is the joy of my life! She is a typical child in respect to other children… she is happy, intelligent, curious, demanding, all the things that most children are. But she also has developmental delays that are significant, namely in her verbal skills. She does not have the vocabulary of a typical 6 year old. She can make her wants and needs known however it is not because of her speech. Tatiana is extremely strong willed and will find a way to make herself clear about what she wants…AT. ALL. COSTS!. Overall she is healthy but has overcome a few challenges with her health such as being born with a hole in her heart which required surgical closure as well as several surgeries over the past 6 years to remove or correct some type of defect.
My girl has made great strides and we look forward to seeing even greater however there is one area that remains to be a “thorn in my side”, her desire to be free which takes form in the shape of being what is known as a “runner’. Whenever Tatiana is given any opportunity to be outside, not restrained by either someone holding her hand or her being wheeled around in a wagon, she bolts as if someone is chasing her and her life depends on getting away. I’m not talking about a little trot, we are talking about Olympic track star running, the girl is going for the gold. It is frustrating (putting it mildly) that her sprinting skills rival that of a professional. I have learned that heels are never an option when we are out unless I have someone with me who can help (and by help I mean run), NEVER and I mean never let go of her hand for a second and find the nearest place that has a cart, stroller, buggy that she can be safely buckled into.
Last Saturday I violated my own rules by deciding to stop at Walmart for a quick run in for some candles. I figured even though I had a small heel on, we could make it in and out without incident. How wrong was I? I tried to grab a box of candles so I let go of her hand for a second to pick them up and before I could grab it back, she took off running. At first I called out to her to stop running from me thinking I could lure her back by threatening her. But when it became obvious that she was not in the mood to care as well as she picked up speed and I could not match it, I did what any parent under the circumstances would do. I yelled for help! I saw a man who was walking by with a young girl so I screamed to them to please catch her. Thankfully the young girl ran after her and caught her, she had turned a corner and I could not see her any longer. Talk about frightening. I was dying inside. I didn’t want to waste time trying to unstrap my shoes so I kept chasing her but the gap between us was growing wider and I had to do something. Yes I looked and sounded crazy but who cares, I needed help and closed mouths do not get fed. Once I had her back in my possession I held her tightly then I attempted once again to explain to her how dangerous that is for her to do. As usual she felt ashamed and refused to look me in the eyes. I don’t want to shame her, I want her to understand how precious she is to me and I am terrified of losing her.
The blog post I was reading told a tale of a similar incident with her daughter which has prompted me to begin writing again about the joys and yes the disappointments of raising a child with Down syndrome. I have always been a bit hesitant to write about the not so fun stuff of dealing with a child who has special needs but today I realized that to not share the good and the bad does a disservice to those who truly need to know the truth. So I will be resuming Tatiana’s blog effective today but it will be integrated with this one as a separate tab. I think it will be easier for me to maintain this way.