Ben has been home for a little more than a week now and everything is working out beautifully!

Dan still loves his baby brother (most of the time); Ben is eating well, responding well, and sleeping well (YEA)!

He had his two week checkup last week (a little early) and the doctor was very impressed with his muscle tone. (In fact, there are several occasions when Ben has lifted his head up!) This is very good news as this can be a struggle in people with DS.

We also got a call letting us know how the chromosome analysis went. It is confirmed that Ben has “Trisomy 21” (Down syndrome). The good news is that (1)it is not a kind that is inherited, so future children possibilities (this is not an announcement or endorsement that we will/will not have other children!) are not more inclined to have Down syndrome as well and (2)it is “straight Trisomy 21” and not “translocation” (where the extra chromosome “translocates” and attaches itself to another gene) or “mosaicism” (some cells in the body have 46 chromosomes and others have 47, making a “mosaic”, if you will). Upwards of 95% of those with Down syndrome have straight Trisomy 21. – This is good news.

A question that has been asked of us (and indeed, that we have asked) is “how severe is Ben’s case of Down syndrome?” – In other words, how severely will Ben be affected? How much impairment will there be? etc.

Answer: We don’t know. This is something we will have to “wait and see”. But whatever the severity, we love him so much and will work with him through it and God will supply the strength. It will be a time for us to slow down and “stop and smell the roses” in this busy world, even while spending it with our beloved children. – How can this not be a blessing?

It should also be noted that, whereas, in the past, a child with Down syndrome was institutionalized and never thought to have a chance of a normal life because s/he would be severely mentally retarded and impaired, it is now known that most people with Down syndrome either have “mild to moderate” learning disabilities and, when worked with early through interventions, exercises, and special techniques, many can be in some (or all) mainstream classes. Many will live in a “group home” with shared responsibilities, but there are more and more cases of Down syndrome people living a “normal” life than ever before. — Some even marry and have children! (It should be noted that almost all males with Down syndrome are sterile but many females with Down syndrome can have children.)

Anyway, I guess that is enough for now. I’ll try to keep this up.

Blessings in our Awesome God,
Scott, Jen, Dan, & Ben

Author: Scott Heitshusen

Lutheran (LC-MS) pastor in Sealy, Texas. Amazing wife, Jennifer, since 1991. Two sons, Daniel (b.1999) and Ben (b.2001). Ben has Down syndrome. Wonderful daughter-in-law, Rachel, since 2020. Jesus. Family. Others. Passionate about abolishing sex trafficking.

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