Let Me Explain Something…

Ok, I would like to just clarify something really fast.

Especially for all those new to the diagnosis of Down Syndrome.

I post in forums, “Levi means ‘Joined together in Harmony’ according to one source we found. The moment the geneticist told us that our coming baby boy had Down Syndrome she said, ‘He has Trisomy 21… From the moment the first two cells joined together, he had Down Syndrome.’ So we felt, ‘Joined together in Harmony,’ was the perfect description for our little man. From the moment he was conceived he was exactly what he was always meant to be. In Harmony with the world and exactly what was missing in our lives.”

But what I want to express is that this understanding did not come to us all at once.  When we were first given the diagnosis, we were completely devastated.  It is even possible that, for a moment, we considered that God had done this to us as punishment for our past transgressions.  It took an unexplainable Faith in God to lead us to a place quickly that accepted that things were as they should be, for whatever reason, even though we didn’t yet understand them.

I had always loved the name “Levi” and I had suggested it for our son Jayden.  We had already considered it as a forerunner before the diagnosis and then a couple of days later I discovered what it means in certain Hebrew translations.

We immediately accepted this as truth, but it was superficial.  It took time to really grasp the depth of what this meant.

Really, it took getting to meet and KNOW Levi.

Everyone will tell new parents, “Oh Down Syndrome is a blessing!” and “People with Down Syndrome are amazing, inspirational people and you’re life will be blessed by having them.”  Things I believe are all true.  But when I was struggling through the most difficult pregnancy I had ever heard of (to mention only one thing, I looked like OCTOMOM for only ONE baby…) and trying to survive the three months of NICU stay while we fought for his life, none of that mattered much to me.  All I can say is that I, without exaggeration, thank God everyday that I waited to get to meet Levi.  Levi the person.  Levi the boy.  Not Levi the Down Syndrome.

When that boy smiles at me, simply because he recognizes and loves me, the ENTIRE world seems brighter.  I know we have all heard the phrase, “Lights up the room with a smile”, but my boys, both Levi and Jayden, can light up the entire world!  Deadly tsunamis, hateful terrorists, global warming, suburbanite boredom, they all sparkle when those boys smile.

If someone you know has received a prenatal diagnosis and is debating abortion, ask them to meet the PERSON first.  For me that moment seems to have clearly happened right around four months but it may take longer for babies with more complications.  Adoption is always available.

Levi may have Down Syndrome, and that may affect every centimeter of who he is, but all I can tell you is that he is only almost 5 months old now and he is already one of the most amazing, fun, strong, magnificent people I have ever met.  He and my son Jayden are all of those things, and those two could conquer the world if they wanted to.

This is what any mother feels for her children when she finally gets to really meet them, get to know them.

For the first three months Levi was my baby.  Fighting for his life and sometimes very, very close to losing it.  In the few short weeks that I have had him home I have learned deeply, deeply in an indescribable way, that he is my SON!  Perfect and Imperfect, flawed and yet made exactly as he was meant to be, with struggles ahead and yet sooo many blessings yet to give… And I have discovered a truly deep feel-able understanding of what I’ve always believed:  In the end, Josh, Jayden, our families, friends and I are TRULY blessed by God to have been given such a fantastic little man to stir up our lives and make them intricate in an unimaginable way.

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10 Responses to Let Me Explain Something…

  1. Phyllis Koenig says:

    Wonderful post, Amanda! We just had a sermon yesterday on “Suffering Yet Joyful”. What a blessing when we can trust in His goodness and look past the difficulties to see the blessings! Levi is a special little guy with a great big brother….I can just see them getting into all kinds of adventures in a couple of years from now!

  2. Andrea says:

    I love this post and I love that you are willing to share your intimate insights with us, Amanda.

  3. Violet says:

    This post is beautiful, Thank You.

  4. Mom says:

    He does have SUCH a great smile! Another incredible post from the heart of Amanda!

  5. Sandie says:

    What an inspirational post…and an awesome legacy to leave to him for future discovery!

  6. Diane Miller says:

    Amanda, I have so enjoyed following your blog, even though I don’t know you. You are an amazing person & a very talented writer. Look forward to someday meeting you. Continue to pray for your family.

  7. Pro says:

    Hello love.

    You are truly a very talented writer – but I know that it’s because this all comes from your core, your heart…your very being. What a wonderful post 🙂

    I cannot wait to see the men that your boys are going to become!

    Miss you, love you.

  8. KYouell says:

    This is really nice to read. I have long thought that it would be much better for parents to get a copy of “Gifts” or “Roadmap to Holland” instead of the dry book that the geneticist gave us. Though I had never formed the thought into a sentence I was feeling the same as you: meet this person who is a whole person and not just their diagnosis.

    • Amanda says:

      Yeah our geneticist gave us a book from 1998 that said several times in the introduction “make sure you have the most recent information available” so I didn’t read the book at all. The geneticist told us that was the book was all they had because people so rarely keep the baby once diagnosed. Mile High Down Syndrome Association sent us Gifts 2 though and that was wonderful. I haven’t heard of “Roadmap to Holland”. Is that related to “Welcome to Holland”?

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