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Children's birthdays are generally a time of celebration. Another year of life to be celebrated. A party with friends and family. Recognition of all the milestones they have met. Anticipation of what the next year will bring.

Our son's 5th birthday is fast approaching. My mind is racing with thoughts and emotions.

These days are so bittersweet when your child has special needs. For us, a birthday is a celebration of a year we were not sure our son would survive. A party commemorating that our son survived beyond his prognosis. Celebrating that he is beating statistical odds.

But we also see how far behind he is developmentally compared to his peers. It is also a reminder of all the things he cannot do. We attend well-check appointments and have to fill out the questionnaires asking if our son can complete skills we could only dream of him doing. It is a time of having to set up educational plans with the schools and trying to figure out how he will fit in with "typical" children that are his same age.

We have our son with us, which I am so thankful for every day, but I do still grieve what could have been.

I do often think about what our older children were doing at age 5. They were just finishing up preschool. They had amazing teachers, and small classes. We invited their entire classes over for their first "friend" birthday parties. 

Our son is in a different situation. He is nonverbal. He just started preschool this year and hasn't had a chance to make close friends. In addition, his class is large making it harder to form those close relationships.

I fear severe illness. I fear his death. Every single day, I fear his death. I fear this will be his last birthday. I fear sending out invitations to a party and then having to make phone calls to cancel because something horrible happens.

There are many times when it would be easy to give into those bitter feelings, those grief feelings, those fears. And sometimes I do let myself recognize they are there. But when it all comes down to it, what power do those feelings have?

They make me feel powerless. They make our son look less-than. They make me lose sight of what is important and the amazing blessing we have been given. They are the deep black within me.

The fact is we have been given almost 5 years with our son. That is 5 more than we ever dreamed we would get. That is 5 more than doctors predicted. That is 5 years of him teaching our family the power of love, the importance of not taking life for granted, and how important the small things are. It is 5 years of miracles. His birthday is a true celebration of life!

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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