There can be so much beauty when a dream dies.
You don’t get the job. A relationship doesn’t work out. The future you planned doesn’t come true.
So often I’ve found that, after the grieving passes, a new future, one so much better, actually unfolds.
Our baby has Down Syndrome.
It’s been 5 months since we found out; and, honestly, it is still hard to say the words.
Because it wasn’t the future we’d planned.
Yet even though some dreams have died, others have changed and, when we can see past the tears, we see the world anew. We see new dreams. And, in them, there is just so much more.
And we are learning, one step at a time, to move forward.
how knightly is doing
His heart beats.
He is eating.
He is growing.
He is ours – our own beautiful baby.
The people we’ve met along the way – who face so many hardships with so much more grace and wisdom, have broken the mold of what we thought life was supposed to be like, of what happiness, real joy, and contentment look like. And they have challenged us to not just be better parents, but better people.
Knightly was measured by one criterion after another for how delayed he might be. The interviewer measured his gross motor, fine motor, cognitive, communication, attention, tracking, and feeding skills.
…at just 6 weeks old.
I can’t believe you can measure “delay” at such a young age. I thought babies were all marshmallowy blobs (albeit adorable marshmallowy blobs) that just need to be fed and cuddled. What developments could they possibly measure?
During that first meeting with the Regional Center, I want to say I was a strong rock of a mother.
But honestly I was struggling hard and desperately praying that this was all a big mistake, the test results were wrong, and my baby didn’t need any of this.
In the end, we were so thankful we made that appointment.
…because that’s when Knightly’s therapies began. And that is how we came to meet some of the most amazing people – walking answers to prayer.
Knightly began therapy twice a week.
They kept referring to it as early education. But, seriously, what kind of education and therapy can you really do with a baby?
Apparently, a LOT
Every week at ICEC, we meet a large group of other parents and 0-1 year old babies facing all sorts of challenges from Down Syndrome, Cerebral Palsy, Spinal Bifida, to name a few.
For three hours, we rotate various stations with a team of volunteer professional therapists to work on gross motor, fine motor, cognitive, music, feeding, and communication skills.
Knightly gets a WORKOUT.
Exposure to different environments/stimuli
From sign language to vestibular exercises, we’ve even been able to learn infant massage techniques to help stimulate his muscles.
After each session, the sweetest grandmothers from the Assistance League of Laguna Beach come to rock the babies to sleep for an hour each week so that us parents can meet together for the parent support group time. The Assistance League have also contributed immensely to giving the building and lots of resources and toys for the babies to use.
The parent support group has also been invaluable. To hear their stories and look at the hard journeys they’ve all been through, these parents have become our comforters, our heroes.
And most of all at ICEC, the therapists have been just gifts, invaluable fountains of information and encouragement.
1 on 1 therapy
Every week Knightly also gets to have an in-home 1 on 1 session thanks to UCP.
It reinforces everything he learns in his group therapies but concentrates on what he specifically needs.
The teacher poured feathers on him during Thanksgiving week to help him get used to the different textures.
And we couldn’t believe it but, at just a few months old, Knightly already made his first painting.
Next art project – photography perhaps?
Every week, we leave each session with homework – exercises that David and I incorporate to Knightly’s daily playtime routine. So everyday several times a day, we reinforce what he learns.
It helps to know we can help our son grow.
It helps us feel that we’ll be able to face the challenges that come.
With these amazing professionals and kindhearted people, we learn SO much. It’s been an unbelievable experience watching our baby grow and reach new milestones every week.
Knightly rolling over for the first time
With all our hearts, thank you to the amazing people at ICEC and UCP! You have helped turn our tears of desperation into tears of celebration, of hope, of joy.
how can you help?
These organizations contribute SO much despite the surmounting budget cuts they face. They run mostly from kind donations (whether it be money or even toys or resources that can be used during therapy).
- Please consider donating financially to ICEC here or UCP here
- Shop or donate your gently used clothing, toys, and perhaps (ahem) unwanted Christmas gifts at the Assistance League of Laguna Beach thrift store
What you give goes a very long way.
hear more of our story
‘Til next time!
“After all that I’d been through, after all that I’d learned and all that I’d been given, I was going to do what I had been doing every day for the last few years now: just show up and do the best that I could do with whatever lay in front of me.”
– MICHAEL J. FOX
With our love,