Our sweet little daughter was only 3 days old when it was discovered that her head circumference was measuring too small for her age and birth weight. To us, she seemed entirely fine and healthy. However, it began a journey of doctor visits, specialists, tests tests tests and more tests, and a lot of waiting.
It was very very hard.
It was determined that she has (what we think is...) primary microcephaly, a very rare condition that affects the size of brain growth. While all the necessary components are present and function properly, one can expect development delays and learning disabilities as part of the prognosis.
Over the past number of years, we've become familiar with a lot of lingo that we never thought we'd use. We've met many therapists who've been very helpful, waded through the waters of waiting, tests and information, and really forged our own path through this.
Now, almost 5 years into this journey, we are thankful for the growth, and humbled by the gift of this life. We navigate the challenges of motor skill and speech delays. We adapt as we need to, but continue to press ahead to overcome what areas we can.
And I say "we" because we're in it together as a family. We have three little girls, all of whom are an integral part of this adventure. All are teachers, all are learners. My husband Jon, and I, work as a team, problem-solving, supporting and encouraging each other as we can.
It's not always easy. Though (at present) medical issues are not a part of our story, development issues can carry with them a certain kind of tension and stress that is not always easy to carry. Our friend-and-family supports have been very helpful with this.
It is not always easy to explain the situation, or to express the myriad of emotions that we still wrestle with. But it is a journey that we embrace and want to live to the fullest.
