Baggage of a Special Needs Mom with a New Baby

As I imagine most first time parents are, when Cyrus was first born I was a nervous wreck. I remember being discharged from the hospital with a four-day-old baby and just getting slammed with the horrifying thought that I was completely responsible for this helpless child. 

I remember being so anxious much of the time. I’m certain that sleep deprivation and crashing hormones contributed. I had nightmares of discovering him not breathing, I would start awake and rush to his bassinet or crib, and mostly succeeded only in ruining his or my husband’s sleep.

The first time I was driving with him in the car, I saw all the other cars on the road as potential assassins! I constantly evaluated how I would maneuver the vehicle in the event of a collision to minimize the impact to the rear and side of my car to protect my infant son. 

I worried that he wasn’t eating enough, and then when he started spitting up constantly, that I was feeding him too much in my anxiety that he might not be getting enough.

Eventually, as the days passed without major incident (and the hormones leveled out), and the intense anxiety gradually lifted, I learned to integrate the motherhood roll into my being and function as a regular person again.

Now with Eliana, I have found that my post partem fears have taken a different form. Her movement is often jerky and random, often with her hands floating out in strange patterns in front of her face. And it looks so familiar – it looks exactly like how Cyrus moves his hands and arms randomly at times. And I have to remind myself, no, your daughter doesn’t have chorea. Your son has chorea, which makes him move like an infant. Your infant daughter is supposed to move that way. It will fade as her basal ganglia develops.

And if you move her too quickly, both her arms will extend outward dramatically all at once. And without thinking, my mind instantly jumps to infantile spasms! No, your daughter is not having the infantile spasm seizures. This motion is called a startle reflex. It happened because you startled her. And it’s rather adorable. So calm down. 

Her lower lip starts to tremble or quiver at times. That’s not a seizure is it? And it really doesn’t look like one, and if anyone would be able to recognize a seizure, it’s me right? Like I’ve learned to identify any and all of them (except absence seizures. Those are tricky!) because Cyrus has had all of them at one time or another. But it’s like I simply can’t help going there!

I have been asked a few times if she’s healthy, both before she was born and since. I’m not sure if this is a common question – I don’t remember being asked this when I was pregnant with Cyrus – or if it’s a reaction to the fact that they know I have a son with special needs. I always hedge in answering the question. I tell them that she doesn’t have ADSL and that she has no chromosomal abnormalities. I can never bring myself to say, “yes, she is healthy” because I don't know and I can't promise that.

But I still look for reassurances myself. She’s ten days old and already has better head control than Cyrus. She is loud and is incredibly quick to communicate her displeasure and needs, whereas Cyrus has always been remarkably (maybe impossibly) calm and chill. These are signs that she is developing normally and is healthy. 

But I also know better than most what it’s like to be the one in a million with the disorder, and that there are absolutely no guarantees. I want to say that she is healthy. By all standard observations and standards, she is! But I can’t truly know. 

I can only love her.

General Update: 

Eliana and myself made it home exactly a week ago on Friday. She is currently ten days old. She is really good at eating – she brought in my mild supply so fast and started putting on weight even before we left the hospital, which we were told was uncommon. She is also good at sleeping, sometimes giving mom a whole four hours in a row of respite. I think the plentiful milk supply may have something to do with that. She initially hated being burped (it interrupts her feeding!), but has since learned to trust that the process actually makes her feel better. Diaper changes are the absolute end of the world apparently. I especially enjoy watching her right after she has eaten and stays awake because her eyes are open and actively taking in everything around her. She seems positively riveted. And the awe in her face is just amazing to watch. 

Cyrus came home from the hospital the day after we did. His pneumonia has mostly cleared as far as we can tell, though we’re still doing breathing treatments at home. He has returned to all normal activities, including attending school, and he has been in the best of moods overall. I think being trapped in a hospital bed when he was starting to feel better made him restless and angry. When he gets floor time now, he is smiles and giggles most of the time! He apparently is also a great sleeper and has amazingly not been disturbed at all by his sister’s night time meltdowns. His seizures have been kind’ve all over the place without a pattern where one day he’ll have none and the next he’ll have five pretty significant events. I hope it will settle soon.

Mom and dad are both sleep deprived, but it feels like we’ve turned a major corner. Kyle says that “Today? I am human again.” And I personally feel less like I was hit by a truck, and more like I just ran a marathon. I have gained a lot of my mobility back, and most of my pain is in my breasts from too much nursing and less in my surgery incision, which is starting to just feel sore. We have felt remarkably supported by family and friends who came to keep Cyrus company in the hospital, or afterwards to take care of me or help with the children in these first few days of recovery.

We know we’re on a rollercoaster as we settle into our new routines. But it’s a rollercoaster that we are excited to be on.