The Diagnosis

A friend and educator from another state is updating a "new parents packet" that is given out in her community. When she was given this task she was surprised to see that there was not anything to address parents of special needs children or adopted children so she set about to change that. In addition to collecting resources to include she asked that I write a bit about our initial response to Wil's diagnosis. Because I get occasional feedback from new parents of children with Down syndrome I thought I would also share this here.

From the moment you get a positive on the home pregnancy test (and maybe before) your thoughts begin to swirl with the dreams and images of things “baby.” The sweet fragrance and soft skin, the cuddles, the coos, the clothes, the nursery. You start making your birth plan as your belly grows. You form all sorts of ideas about what your life will look like once baby is on the scene. If baby is not your first you begin preparing sibling/s for the changes that will come with baby in the family. It is an exciting time. It should be.

What you do not plan for is the phone call from your doctor asking you to come in to discuss some test results that are “a bit concerning,” or the uncomfortably quiet 20 week ultrasound followed by “we would like to do some follow-up testing,” or a premature birth that leads to a diagnosis that is a complete surprise to you. There are countless ways the news of a special needs child comes. For many it is on the heels of a very typical pregnancy and delivery, making it all the more shocking. It is never ever easy. It is not what you hoped for. No one I know prayed that the child they were carrying would come to them with medical or special needs. (though I must insert here that I now know many people that, having been blessed with such children, have gone on to pray that special needs kids would be placed in their home through adoption – amazing!)

Yet here you are. The day you have been planning for has arrived, though it is not at all what you thought it would be. There is medical jargon flying around, your baby has been whisked off to another room for testing, the air feels thick around you. You hear the sounds of laughter and joy in the rooms around you but there are no congratulations being offered in your room. Why does it feel more like a funeral than a birth? Every time a doctor comes in the room they bring more news. It may or may not clarify things for you.

For my husband and me the initial adjustment was to NICU. Our second son spent the first month of his life there. We did not get a diagnosis right away; that took some time. What we did know was that many of his numbers were not what they should be and those things needed to be investigated. As a result we could not hold him, our older son who was 2.5 at the time could not visit him, and we had to go home without our baby. That is when our new reality began. By the time our son left the hospital weeks later we had an official diagnosis of Trisomy 21 (Down syndrome) and Congenital Heart Failure as a result of three heart defects that would require open heart surgery at five months of age.

So we now live a reality that is different than we ever imagined. It is filled with challenges and struggles to be sure. It is also filled with a joy and fulfillment unlike anything we have known. It is funny how these things – pain and joy, struggle and fulfillment - intermingle, how they rub up against each other and remind us of what is really important. Our son with special needs, who is now the middle of three boys, is vibrant and determined. He is confident and stubborn. He gets what he wants by giving out hugs. He is motivated and trying hard to be independent even though his physical weaknesses limit him. He is precocious and clever. He is adored by his brothers. We already get glimpses of the long term impact they will have on each other. He fits perfectly into our family.
We are thankful our lives are not what we would have designed. Parenting is not about having perfect children. It is about providing the children that you do have with what they need. You will find that in the process of healing and grieving in the weeks and months following the birth of your child with special needs that a tenacious love for him/her creeps in. And that initial sinking feeling that you had after the diagnosis, that your life would never be the same? That feeling is not so heavy anymore. Actually you find that you embrace the fact that your life will never be the same again. Because you are learning it will be better!

*Thanks Holli for making a difference for families who don't start off in the typical manner!


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