But when the doctors start using terms like "incompatible with life," "severe retardation," and "significantly disabled" to describe your baby, all of the things you were looking forward to start to fade away. You begin to wonder if you will ever have those moments at all... or in what capacity you will have them.
When Avonlea was a few months old, her geneticist prepared us for the fact that her physical development would be extremely delayed. He said every Trisomy13 parent asks him when they can expect their child to meet certain milestones: sitting up, first words, walking etc... and he said that the answer varies so greatly from child to child, depending on their specific anomalies and the level of therapy they're receiving, that it's impossible to even guess. He said that some T13 kids learn to sit up around their first birthday, and others cannot sit up unassisted until well into toddler-hood, or even later.
When she was nowhere near ready to sit up as she turned 1 year old, we knew Avie's muscle-tone and neurological delays were probably more on the severe side, and began to adjust our expectations for her development. By her second birthday, when she still could not sit up unassisted, we taught ourselves to not to have any expectations for her at all. We told ourselves that her pace would be our pace.
Parenting a special-needs toddler (with the energy-level of any other 2-year-old, but no ability to exercise that energy) is exhausting. All babies are born needing their parents to do everything for them in order for them to survive. But normal, healthy babies outgrow the need for parents to do some of those things as they develop. They learn to ask for what they want in their own way, and then eventually learn to point, sign and use words. Avonlea had begun to point and sign before she had to have her G-tube placed... but with the incentive of food removed from her routine after switching to full-time tube-feeding, she has regressed to the occasional, meager sign and a lot of whining. Normal babies roll over, then crawl, then pull to stand, then cruise, and then walk, eliminating over time the parents' need to carry them everywhere around the house. Avonlea, at 2 years old, can roll over from front-to-back, and from back-to-front. She is trying to crawl, but has no upper-body strength to actually get anywhere. Normal babies learn to grasp and hold things, a skill which carries over into all different kinds of independence (feeding, playing etc...). Avonlea has very primitive fine motor skills, in that she can hold certain objects for short amounts of time before she drops them, and she can push large buttons if there's a reward (lights, music etc...). But she do little else with her hands.
All this to say, Avonlea needs us to carry all 24 lb. of her everywhere, hand her toys again and again as she drops them, tube-feed her 5x/day and, most of the time, just guess what she wants through her own little queues we've picked up (mostly body language and inflections in her vocalizations). It's exhausting. And as much as we're dying for her to progress in her development, we realized some time ago that setting our expectations for her at an unrealistic bar (and then constantly failing to see those expectations met) brings another whole level of exhaustion.
But then one day... one completely ordinary day... during physical therapy, Avonlea was having a particularly terrible day. She was unhappy, whiney, and unwilling to comply with the therapy exercises. Her therapist was at a loss as to what to do with her that would not cause a meltdown. The therapist sat Avie on her lap, and began working with her on standing up from a sitting position. As Avie stood her little body up that day, something amazing happened!
She took a small, deliberate step. And then she laughed at herself...
Her therapist stood up with her and, while supporting Avonlea's upper body, assisted her in a sweet little walk across the living room rug towards me. To catch her in my arms, with that proud smile on her little face as she realized what it was to move herself... it was a moment of sheer victory!
Since then, every time her physical therapist walks through our door, Avonlea gets SO excited to practice walking. Anytime she gets fussy throughout the average day, we can stand her up and help her walk a few steps, and she can't help but giggle with pride! She cannot even sit up on her own without support, but walking has become her new favorite thing.
Also since then, she has actually progressed greatly in her sitting up! She can now sit in the seat of a grocery cart, which is a huge milestone (at least for this momma). Until Violet was born, Avonlea was still in an infant car-seat. We would keep her in the infant seat anytime we took her into a grocery store. But when my water broke (4 weeks early) with Violet, we realized all of a sudden that Violet would need the infant seat, and that we needed to go ahead and get a toddler seat for Avonlea (size-wise, Avie was still small enough at the time to fit in the infant seat, but we knew she wouldn't be for long). We ordered the toddler seat from Amazon while we were waiting for my OB to come see me in triage after arriving at the hospital! LOL...
We didn't realize at the time, however, that Avonlea being in a toddler seat would mean that we wouldn't have the infant seat to support her in a cart at the grocery store. The first two months of grocery shopping after having Violet were brutal. But out of nowhere, towards the end of April, Avie began sitting very well in the grocery cart... and now it's no longer such a burden to take her to the store! She sits in that cart so nice and tall, swaying back and forth and laughing at all the people who tell her how cute she is (as I die from adorableness-overload, and also cringe from fear that all of the shoppers complimenting my toddler MUST be kidnappers, just waiting until my back is turned to steal her).
Very randomly today, Avonlea was playing on the floor and roller onto her stomach. Historically, when she does this, she often forgets that she can roll back onto her back, and she just lays there on her tummy, crying until someone comes and rescues her. But today, as I watched her roll and assumed I had T-minus 20 seconds to go and right her before she freaked out, she pushed her chest up off the floor into an upward-facing dog (yoga) position! I praised her loudly until she laughed and dropped herself back down. She did this little push-up several times! She has never had the upper-body strength to do this until now (today). It was such an encouragement that her arm muscles are developing and that crawling might realistically be in the foreseeable future!
Also, today, we took Avonlea back to see Dr. Wait, a neurosurgeon at Carolina Neurosurgery & Spine.
About 2 weeks ago, I noticed that the hemangioma that Avonlea has always had on her lower-back was getting larger and darker. This was something her pediatrician has always known about but has never been concerned about, but when we had to consult with Dr. Wait and his P.A. about Avonlea's craniosynostosis a few months ago, we asked them to look at the hemangioma and a small sacral dimple above her little booty-crack while we were there. Since both the hemangioma and dimple were along her spine, we just wanted to make sure they weren't causing any problems. We were told that neither were symptoms of anything concerning, but to keep an eye on them and if the hemangioma got larger, or if the dimple began secreting, to bring her back in.
Dr. Wait looked at these today and didn't seemed too concerned. He did recommend we do a lower-lumbar MRI to see if there's any tethering in Avonlea's spinal cord, as this could affect her ability to walk, talk and potty-train down the road!
Oh boy... More things.
I tell ya. It feels like it never ends sometimes. As soon as one victory surfaces, there's another "concern" waiting in the shallows to try and pull her back down. But if there's one thing we have realized, though, it's that Avonlea wants to move forward in her development. She sees Mommy and Daddy walking around, sitting on the floor with her, holding things in our hands... and she wants to do those things! She realizes there's more to life that she has not conquered, and she wants to kick those things in the behind. I absolutely love the fiery little spirit God gave her! His hand over her and that fierceness in her soul are what have brought her this far. She has overcome so many statistics and obstacles... I just can't imagine where so many other T13 and T18 kids would be if parents and doctors would give those kids the opportunities Avonlea has been given. She has always wanted to live... and now, she wants to live boldly ...and fully.
And I love her for that!