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Our world moves at such a fast pace at times. This is no different when having a child. We anticipate the day they will be born, say their first word, crawl, take their first steps, etc.

The day we found out that our unborn son would have Trisomy 18, this idea of thinking completely changed for us. We wanted time to stand still. At that moment in time, we knew he was alive and thriving inside of me. We feared his delivery. I feared going to sleep every night knowing I might wake up and never feel another one of his kicks.

This mentality did not change after he was born. I feared every moment of those beginning days that it could be my last moment with him. Thinking of even the next day brought fear and anxiety. To survive, I had to learn to live in the moment. This did not come naturally to me. I often found myself becoming anxious and having to take a deep breath and focus on what was happening at that time. I knew tomorrow might not come for our son, but in that moment, he was doing well. Staying focused on the present allowed me to be able to take in every ounce of him I could.

As he has grown into a 4-year-old little boy, this mentality has not changed. We have had to learn to celebrate him so differently than our other children. Our son might not ever walk independently, but we rejoiced the day he could bare any weight on his little legs.

We were told he would have no personality and never be able to communicate, so we threw a party the first day he smiled, and I find myself marveling at his noises and facial expressions. The first time he shook his head no at a therapist trying to get him to eat not only made me laugh at his stubbornness, but also cry that he was doing something "normal".

So often, we take for granted all of those small things. Babies quickly learn to roll, sit, crawl, and walk. We don't even think about all of the complex muscle movements it takes to do each task. That is until trying to teach a child that doesn't even know how to work muscles in the feet, back, hands, and other areas how to do each of these tasks.

Having a child with special needs has taught us how to celebrate the small stuff. Every eyebrow lift, every time he does something knew, I think about the four years of work we have gone through. I think about his "clinched hand" diagnosis at birth every time he grabs a toy with his right hand. I think about his "club foot", the months of doctor appointments, castings, braces, and second opinion appointments we have had every time I put on his shoes, help him into his walker, and watch him take a step. Every time he snarls at me and lifts one of his eyebrows while doing it, I think about the surgeries on his eyes and the therapy he has done to get him to do such a simple task.

Our son has given us such an appreciation for the "normal" things kids can do in addition to all the work he has done to learn to do what he can. He amazes me everyday. He teaches me everyday. He is my hero.

Terra Garst

Terra has lived in Omaha her entire life with her husband and four sons. She enjoys being a stay-at-home mom and driver for all her children's events. She is a nurse and uses creativity to get things done! Terra is Nebraska's state chapter chair for Support Organization for Trisomy 18, 13, and related disorders (SOFT) as well as their prenatal outreach contact. She also volunteers for Hope for Trisomy. ...

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