So we’ve been in the hospital for a week with our newborn son. (Here’s an update on what’s going on with our family.)
This last week has been, for obvious reasons, the worst of my life. And it sounds as though even worse days are likely in store for us. But at the same time, these tragic days have also revealed to me the stunning beauty of community and the breathtaking goodness of the human soul.
In no particular order, here are the things that are making my life right now an absolute nightmare, and the things that are bringing me to my knees in gratitude.
What sucks so badly that I can’t even think about or else I just sob uncontrollably:
- Not being able to see or care for Lydia. I miss her charming, goofy personality and I hate the fact that I can’t be her mom right now. I went from spending every moment of every day with her for the last 3 years to only getting visits on the weekend. I ache to be with her.
- Felix can’t see our faces. For the next several months, he will only know his mama as the woman behind the mask.
- I can’t breastfeed. That was one of the first and worst things they told me upon admittance to the hospital: no more breast milk. I could pass along a pathogen. We have to feed him formula. I almost fainted when they told me. Breastfeeding is SO IMPORTANT to me. It kills me that I can’t share that intimacy with him, or all the health benefits of breast milk. (For now I am still pumping, with the hopes that maybe we can resume some day.)
- Lydia can’t even see her brother. She is forbidden from entering his room when she visits. She will not know him at all by the time he is discharged. By the time she can see him again he will be a whole different baby. And she looooooved being able to snuggle him.
- This is not at all the infancy we had in mind for him. Obviously, no one plans for an infancy in the hospital; but we’re about the crunchiest, hippyest parents you can imagine, and this life is as far from that as possible. We started out breastfeeding on demand, bed-sharing, cloth-diapering/Ec-ing, babywearing, and doing lots of skin-to-skin. Now we’re formula-feeding and counting every ounce; he sleeps in a little steel white cage across the room; we’re using disposable diapers and weighing every ounce of poop/pee; and I can’t even go near him without putting on a gown, mask, and gloves. I won’t be able to touch his skin for months. We’re covering him in creams and oils with ingredients I wouldn’t dream of bringing home, squeezing sweetened/flavoured/dyed medicines in his mouth, and pumping his body with antibiotics. I worry that we’re destroying him as we try to save him.
- Having to hear him scream through all the awful tests. He’s constantly being poked and prodded – in one week he’s had a spinal tap, innumerable blood tests, several catheters, IV’s, two X-rays, ultrasounds, lung swabs . . . he can never catch a break. And I can’t do anything to help him. It’s agony.
- We’re amongst so many suffering families. I can’t even bring myself to look into the other parents’ eyes or gaze too long at the tiny cancer patients in the halls. The baby next to us screams all day and all night. Just so much pain.
- The fact that we won’t be home for Christmas. I won’t be baking Christmas cookies with Lydia or lighting the Advent candles every evening. We never even put up our tree. It kills me.
- All my eco-consciousness has to be thrown out the window. We make more trash in half a day than we made in a week back home. Everything is disposable. I toss out 20 pairs of gloves and 20 masks a day, and send out 10 gowns to be washed every day. We’re using disposable diapers and wipes and chucking a dozen half-full bottles of formula with disposable nipples every day. Then there’s the disposable medicine tubes, breast pump sterilization packets, etc. I feel awful.
What’s so amazing I can’t help but sob with gratitude and awe:
- All of you people. Honestly, it’s breathtaking. The love and support that has been pouring in has me stupefied. From the monetary donations flooding in from friends, family, and complete strangers; to the prayers people are saying on our behalf; to the encouraging notes and emails I receive on a constant basis. It’s just too much. I know that my friends are organizing a big fundraiser to help us out financially and they’re pouring their precious time and energy into it. Then there are the volunteers at the Ronald McDonald House, preparing our meals and maintaining the beautiful house; and the wonderful nurses who go out of their way to make us comfortable. We are being so well taken care of. I am dumbfounded by the generosity and kindness. I cannot believe you would all go to such lengths to help us when we’ve never done anything for anybody.
- That we caught the disease so early. One of the doctors here has been working in the field for 16 years and has overseen 11 SCID patients. In every other case, the disease was caught because the child was already sick (which typically happens at three or four months of age.) Felix was the first one caught via newborn screening, at two weeks, before he showed signs of being seriously sick. (Screening for this disease is very new, and only practiced in some states and provinces.) Hopefully catching it early will mean an earlier and easier recovery. I guess that’s sort of a miracle.
- That Lydia has two sets of wonderful grandparents, as well as aunts and uncles, to care for her while we’re dealing with this. I know that she is being well taken care of. I don’t have to worry at all. I just miss her.
- The Ronald McDonald House across the street. For only $10 a day, we get comfortable lodgings and delicious home-cooked dinners every night. They’ve got play areas and TV’s and sitting rooms. It’s a lovely place full of lovely people. Such a blessing.
- That we live in Canada, and all of Felix’s care and treatment (so far) comes at no cost to us. Unbelievable. The only real financial difficulty comes from our complete lack of income during this time, but our amazing community is helping take care of that through fundraising. Incredible.
- So far, Felix isn’t really suffering. Like I said, the disease was caught before he showed any symptoms. As of now, he has a mild cough and bladder infection which are being closely monitored and treated, to keep them from escalating into something life-threatening. Otherwise, he’s a generally content baby, sleeping lots, showing little sign of discomfort aside from all the testing and probing.
- We can be with him. Sure, we have to be covered from head to toe to see him. But we can spend as much time in his room as we want, talk to him, and hold him. A lot of parents with critically ill children can’t do that.
- His condition is treatable, possibly curable. If he has a successful bone marrow transplant, he will be cured and should be able to live a mostly normal life. If that doesn’t work there are other treatments available to keep him healthy, hopefully for a long and happy life.
- I have an amazing partner to go through this with. He stays hopeful when I lose faith. He takes care of me when I lose my mind. He’s a loving father to this tiny, fragile baby. I couldn’t ask for better.