In the Down syndrome blogging community, something called a “blog hop” is happening this summer, hosted by Meriah, the author of the blog A Little Moxie. The point of said blog hop? To get bloggers, such as myself, to write posts specific to issues surrounding disability. To get us thinking, to get us reflecting, to get us capturing thoughts, feelings, and emotions surrounding disability in a tangible form. Here are my thoughts for the fifth writing prompt, which is:
Comforts and Connections
Honestly? I think there are too many comforts and connections within this world of disability to adequately be able to write about all of them, or properly show appreciation for all of them.
The day we found out Jake had Trisomy 21 was not an easy day. I remember sitting on my hospital bed, doubled over in part from the physical pain of surgery I had undergone the day before, and in part from the emotional pain I was wrenched with. I recall weeping into my husband’s shoulder, clutching at him as though I were trying to save myself from falling over a precipice and into oblivion. Through the tears, I heard myself sob “no one is going to want to come to his birthday party”. I. Could. Not. Have. Been. More. Wrong.
The comforts and connections we have made on this journey so far have been so far beyond my hopes and expectations. Blessings like:
* Family who support us unconditionally
* Friends who don’t see the disability, but rather see Jake
* A “club” of other peeps who are walking the same journey, whether in person or online
* PREP staff (this is the organization we have done a lot of our Early Learning Intervention through. they are amazeballs. we love them)
* A health care system that can support our child through the medical issues, specialists who are proactive and preventative, and government systems set in place to provide assistance (okay, nothing is perfect, but we are still thankful for what support there is!)
* The normalcy of life. We still live our lives the same way we would have without a Down syndrome diagnosis. Sometimes we have to modify a little, but we are living life with three kids 3 and under to the fullest!
At the end of the day, however, the biggest comfort I take is found in Jake himself.
Comfort in every milestone hit, no matter how early or how late.
Comfort in every advance, every plateau, every valley.
Comfort in the little things. Like every night when he sits by his door and yells “mommy, mommy, mommy” under the crack in the door until I come in. With a smile on his face that would melt the coldest heart, he reaches up, takes my hand, and leads me over to his bed, where he proceeds to push me until I lay down beside him. Seeing that I am going to lay with him, his face erupts into the biggest grin and he lets out a belly laugh of glee, and then snuggles into me, playing with my hair and kissing my face repeatedly.
Comfort in knowing that Jake is who he was meant to be, that his life has meaning and purpose, that he loves and is loved.
Oh, and everyone who knows Jake wants to party with him!