I have been mostly open about my sweet, little Mackenzie. About her… differences.
I am a part of a Facebook mom’s group for babies born in December 2013. They are the most supporting, amazing and wonderful women and moms on the planet. All of our kids are wonderfully unique in their own way, but for the most part, all of their babies did MOST developmental things around the same time.
That’s when I started to worry. Why isn’t Mackenzie doing these things?
Since the time she was about 3 months old, we knew that Mackenzie was likely to have some challenges. We discovered vision issues in her left eye very early on (which is a rare discovery in a baby). However, it was unknown what the impact of these issues would imply. There was also the discovery of her skull ridge, lipoma in her tummy, a small hip joint and one leg longer than the other.
Put ALL of these things together and what do you get?
Overwhelmed, emotional parents of an 18 month old who is severely developmentally delayed.
But Mackenzie… she is special. She is happy. She is blissfully unaware that there is anything wrong with her. Of course, being parents, we want only the best care for her. We don’t want to keep her in the older infant room at her daycare anymore as she belongs with her toddler friends, learning toddler things.
I am sensitive to the fact that she isn’t doing what he is “supposed” to be doing at this age. I don’t go around doing the usual bragging that pretty much all mommies do, so most of my “friends” (speaking of those specifically on social media) are unaware that my daughter has any issues. My husband and I have chosen to keep Mackenzie’s developmental struggles in the family. It just feels too personal to make it a social “thing”. On the other hand – am I not giving my social media friends enough credit? Is the truth that I am worried about being judged?
For the most part, I have brilliant, smart, supportive and mostly Christian social media friends. They would pray for and cheer on Mackenzie as she learns at a year and half to crawl, sit up and pull herself to stand – most things that that the “average” 10-12 month old is already doing.
Mackenzie is very quickly practicing her mastery of pulling to stand. SO much so, that she did it last night from about 2:30 – 5am. With 2 paci’s over the side of the crib, 2 parents who are tired as hell, we finally gave up and let her “figure” it out. She fell asleep around 5am sitting up.
Quickly we learned that just because Mackenzie is delayed, doesn’t mean we aren’t going to go through ALL of the same things every other parent to a baby went through about 6 months earlier.
Yet – I kind of want to scream to the universe that she did this all night long. I’m so proud of her. Physical therapy is hard work for her – they push her to the baby brink and it is sometimes hard to watch. But nights like last night tell me that the hard work is paying off. She’s definitely doing what she’s supposed to be doing – even if she’s giving it her best go in the middle of the night.
I don’t think any parent ever anticipates having a child with special needs. I struggle with work-life balance. I struggle with my desire to succeed and provide as well as my deep need to be with her at therapy every week. I struggle with trusting her daycare to work with her on the exercises she needs to work on. I should be there.
Despite our struggles and setbacks, I love her with the fire of a thousand suns. I love her in a way that is different from anything I have ever known. Of course I love my son to the moon and back, because well… mama’s boy, but Mackenzie… oh Mackenzie and all of her special, unique qualities makes me love her and want to protect her in way that only I, her mama, can understand.