So Knightly turned 2 and started calling me “Mama”
and me? Well, I turned the big 3-0.
It’s funny how, just after writing about finding more peace and being told that I no longer need therapy, I hit a wall.
Wrestling through the journey of:
on transitions with knightly
When Knightly turned two, I found myself on the floor sorting through his clothing, tossing the ones too small to the giveaway pile. It filled a whole bag.
Perhaps this is something every parent goes through, but I can’t believe how fast he’s growing.
How does it happen so quickly?
And when will I stop being so freakin’ emotional about it?!
knightly’s early intervention therapy
In his early intervention therapy (a center for 0-3 year olds with special needs), Knightly just graduated to the 2-3 year old group.
And in less than a year, he’ll leave early intervention for preschool.
It wrenches my heart to know I’ll be saying goodbye to them so soon.
When we first got Knightly’s diagnosis, we knew no one who had a child with Down Syndrome and felt alone. Thank God for the Regional Center where a coordinator got us to sign up ASAP for early intervention.
I remember when I first walked into early intervention holding Knightly (who was made of 100% marshmallow at the time) – nervously keeping him close to my heart, not knowing what to expect.
We sat with all the families around a rainbow-colored mat holding our babies in front of us. And I was struck by what I saw.
That may sound horrible but that was my honest reaction. AND…they were of every kind of walk of life, age, nationality, family situation. The babies came with varied diagnoses and some with no formal diagnosis, just showing some delays. The next two hours we were told we’d rotate with various specialists and it originally sounded so medical to me. But I was in awe…because these specialists greeted all of us and our babies with such love and care and tenderness and concern. They were teachers. Overtime, they became family.
After the first 2 hours, we were able to hand Knightly to a volunteer grandma who’d come and rock our child to sleep for an hour while we adults could have our own parent support group time – one hour/week that would become some of the most meaningful and healing moments we’d have in our first year parenting.
In that room, we were surrounded by parents who were able to remove the masks of “I’ve got it all together” and hear them open up, yell and cry about our fears for the future, frustrations with the present, and the grief of losing the “normal” child we were “supposed to have”. In many of them, I saw a mirror of me – someone desperately wanting to be strong but also struggling with being so broken and weak.
Over the past 2 years, we found more acceptance and understanding in this community than we could’ve ever imagined before being parents.
Last week, we graduated from the group of mostly crawling kiddos to the group of mostly walkers/runners/talkers. And in terms of early intervention and being around this family, we have one year left.
how to connect with early intervention/resources for special needs
If you have a loved one under 18 with special needs, I urge you to connect as soon as possible to your Regional Center (here is a link to CA’s) to find a local early intervention therapy group for your darling one.
knightly’s development | 2 years 1 month old
Knightly attends therapy 5x/week with two 3-hour group sessions and three separate 1-hour individual sessions for Physical Therapy, Occupational Therapy and Speech.
With the diagnosis of Down Syndrome, he is also scheduled to have regular check ups every 6 months for issues such as vision and hearing as there can be a growing weakness in those areas over time.
Next week, we’ll be checking up on his vision with his opthalmologist and see if the one remaining tube in his eye that he didn’t pull out has helped make a difference with his blocked tear duct. At the last visit, his astigmatism was no longer a concern and they said we could wait on the eyeglasses after all (thank God).
We’re working on walking over objects and climbing up ladders for slides. So we’ve been trying to visit the park playground often.
Knightly’s physical therapist has been concerned about his walking stance so next week we’re visiting Orthotics to fix the pronation of his feet as he walks.
Translation in my head: He may be getting a modern version of Forrest’s magic shoes.
It was hard to hear. I had been so proud of how much he was moving around so it hurt to hear of a medical concern that went along with that. But I have to remind myself this is only to help him get better. So SUCK IT UP, self!
Knightly was making such great strides right after TalkTools in speech but we’ve hit a long plateau and for a long while a general disinterest in his part to even utilize the speech functions he once did. Partly, I’m honestly not being consistent enough in applying the tools daily as we’ve learned (it’s intended to be used up to 10x/day…when things got busy and my panic attacks were at its worse I took a long break as it emotionally drained me).
Amusingly, Knightly’s decided his favorite form of speech is animal. I can only best describe his current language as parseltongue.
Knightly’s audiologist expressed concern with his hearing and we JUST came home from him being tested by the audiologist and a head neck surgeon to confirm whether or not he had muffled hearing. After anxiously driving over and building up worries in my head, I can only praise God and thank those who’ve prayed because they no longer see an issue with his hearing. Check up again in 6 months but we’re in the clear from an ear tube surgery for now.
I really struggle with these routine doctor visits worrying about how Knightly’s doing and what I may be doing wrong – it’s so easy to go straight to pessimistic thinking. What am I doing wrong? Why does there have to always be a check for something wrong? But I’m working on trusting in God and focusing on the positive. Here, Knightly’s being given tools to just get stronger, to get better. So no matter the outcome, no matter what the doctors find or may find in the future – they’re there to help. And thank God there are places that can help.
As I struggled with these worries (as is my talent), I was blessed to see Knightly do something for the first time ever just last week.
He said “Mama” and reached for me.
He’s said the word before but was babbling more than anything and enjoying the new consonant. But 3 times in a row, he reached out for me and said, “Mama”.
And yesterday, he went up to David and said, “Dada”.
We’ve been avid followers of Babywise and Baby Whisperer pretty much since Knightly was born and we had to have him sleep trained and fed on schedule because of his severe jaundice. It was definitely drive-me-crazy hard especially in the first 6 months (and every sleep regression since) lol. And Knightly’s decided to celebrate his two year birthday by jumping into a strange wonder week or sleep schedule of waking up 2 hours earlier than usual.
Lack of once predictable sleep can make any adult break down, cry and stop thinking rationally.
Then, add in the fact that you’re turning 30…
on turning 30
It feels more like jumping off a ledge than meeting a new milestone age.
This past year has been the roughest for me in battling with panic and anxiety attacks. Although my therapy has been completed and though I’ve found ways to cope without medication, I still struggle with it on a weekly and, at times, daily basis.
And, lately, seems like an hourly basis with all the work of learning to drop certain coping addictions and how to set boundaries with people I’ve been terrified to set boundaries with my whole life. It’s been a grieving process to let go and to finally accept my inability to change certain people, to get them to just like me or to be willing to communicate about unresolved issues. To wish things were different but to know I can’t magically make it different. And to let myself be okay with letting go…of people. I’m still deep in the water in this…but I can see the shoreline and I’m swimming straight for it.
And, meanwhile, I’m my own worst critic at my progress. Why?
Because I’m human. And it’s human to feel anxiety. But I guess I just don’t want to be human.
I’d rather be mutant.
(photo courtesy of Marvel)
I wish I could handle everything: cooking, cleaning, working, doing therapies from home, therapies at therapy, assertive and loving confrontations, letting go of what I need to while being a rock star mom and loving wife 24/7 and always-there-for-you-friend while looking good and feeling confident all at once.
Future realistic hardships?
And having an ability to move things with my mind?
*sigh* Wouldn’t that be nice?
Is that too much to ask?!
How did that freakin’ Proverbs 31 wife do it?!
Now hitting the big 3-0, I feel like the older I get, the more I realize I HAVE to just let go.
To let go of fixing other people’s pain
To letting go of trying to fix their hate and their anger
To let go of other’s view of my worth, my confidence, my ability, my direction, my value
From grades, school awards, work commendations, Facebook likes, Instagram followers, comments – there’s a CONSTANT stream of measurements that I’ve used to measure my worth – my value.
But only I can determine what I will believe my worth is.
My siblings and David surprised me with a trip to confront a long-time fear of mine:
I could feel the anxiety symptoms: trouble breathing, trembling, heart pounding, dizziness. I didn’t want to do it. But I wanted to.
I wanted to stop being afraid. I wanted to experience the thrill. I wanted to freakin’ face my fear.
So there I stood, on the ledge, trusting that these little straps would hold me somehow, and with no personal control in the direction of where I was going, I jumped.
Six ziplining courses + one last minute decision to try an extreme ziplining race course followed.
And…what a rush.
So. Worth. It.
Here’s to our leaps of faith in life, to letting go, to being our own measure of self-worth, and to growing up.
With all my love,
Drexelle (a now 30 year old! THIS YEAR’S GOING TO ROCK!)