What I Love About Being a DS Mom #24

Not Always Sunshine, Lollipops, and Rainbows

Despite the month-long string of perky blog posts and perspectives that tend to look on the bright side, having a child with Down Syndrome can be downright tough sometimes.  I mean, every child, no matter how many chromosomes, challenges a parent in ways that cannot be prepared for.  But having a child with special needs comes with obstacles that force you to go the extra mile, grow a thicker skin, and fight a little harder.

Finally coming home for the first time!

When Ty was born, despite our preparation for possible medical complications at birth, nothing could have prepared me to leave my baby in the Special Care Nursery for the first 6 days of his life.  Nothing quite tears at your heart like finally meeting the boy you had waited 9 long months to hold, and then leaving him alone in a hospital crib, while you go home to an empty nursery.  I missed his first bath, and first dirty diaper.  I wasn't the one to hold him for every feeding, or to comfort him when he had blood drawn.  Nearly 2 years later, it still breaks my heart that we weren't with him every second of his first week of life. 


The first few months of his life were filled with one doctor's appointment after another.  When you have a child with Down Syndrome, the hospital sends you home with a list of follow-up appointments to fill your calendar for the first month.  It's an endless parade of paperwork, exams, and medical testing.  You quickly develop a tough exterior as you listen to one doctor after another list off what is "wrong" with your child, and what may possibly go "wrong" in the future.  Ty was monitored closely by cardiology, neurology, and otolaryngology for his first seven months, until one day I looked at my calendar and realized that it was no longer filled with trips to the hospital.  He had finally graduated to the yearly check-up routine, and we could finally breathe.

For us personally though, the most difficult aspect of having a child with Down Syndrome has been to watch him struggle with respiratory congestion.  Being in daycare as an infant, Ty caught every cold germ that circulated the house.  At 2 1/2 months old, he caught his first cold, which very quickly settled in his chest.  Nervous at the sound of his breathing, I took him to his pediatrician, who administered several nebulizer treatments to no avail.  I walked around that small exam room for over two hours holding Ty's naked little body, listening to him gasp for breath.  In Ty's best interest, his doctor called an ambulance to bring him to the local children's hospital for a 48 hour stay.  I'll never forget watching my little peanut strapped into his carseat being rolled out of the doctor's office on a stretcher, with a smile on his face.  Our ambulance ride was uneventful, but the emergency room was another story.  As a routine procedure for patients being admitted to the hospital, two men came in to insert an IV into Ty's tiny, pudgy hand.  It was the first time I had ever seen my baby in pain, as it took the men four attempts to successfully get it in.  Ty fell asleep immediately afterward, with terribly bruised hands as remnants of his ordeal.  The remainder of our hospital stay was as diffcult as that first afternoon, and I quickly learned to stand up to nurses and doctors in the best interest of my son.  It was a tough lesson to learn that medical professionals do not always act as they should, and do not always know what is best for your child.  Though we have had other hospital visits since, this one was by far the roughest, and quickly inducted me into the club of being a special needs mom. 

I have watched my son have blood drawn numerous times, and have held his hand as he was put under general anesthesia.  My binder containing all of his medical records is overflowing, and I can recite to you the content of every one of the documents inside. 

Physical and speech therapy appointments are sprinkled throughout a typical week, and follow-up exercises are woven in to many of our daily activities.  I can tell you the typical age for any milestone to be reached, and am always aware of what the next goal will be.  Sometimes I wonder how my brain continues to function at all, with the roladex of knowledge that I am constantly adding to.

Even a play session is a chance to work on that core strength!

In spite of it all, I always come back to the same realization that the good far outweighs the bad.  I have written 23 days worth of things that I love about being a mom to a boy with Down Syndrome, but am already quickly running out of things that are tough.  For every challenge we overcome, we are that much stronger in the end, and I truly am grateful for that.  So no, being a parent of a child with special needs is not always easy, but then again, what parenting journey is easy???  I wouldn't trade this experience for anything.