So I've had a little lesson in remembering to be joyful. I get so bogged down sometimes and feel like I live in a constant state of fear - will my babies eat today? will they gain weight? will Zoe come home? will Zoe be able to learn to communicate? are there any hidden health concerns or development delays that we have yet to find out? And of course there is the guilt that follows - I didn't lay down enough while on modified bedrest, I didn't eat enough protein, I didn't relax enough, I didn't carry them long enough...and so on and so forth. I'm told that many parents of preemies live in a state of fear for the first couple of years. There aren't many "What to expect the first year" - type books for preemies. The books we have are few and far between and most all of them say "every baby is different" or "here are milestones for a term baby, but don't worry if your baby doesn't do these things based on their adjusted age, preemies are wired differently" and most preemie moms I've spoken with say "go with your instinct it's all you've got, if you feel something is wrong or not quite right with your baby, get a therapist - speech, feeding, physical, occupational, whatever it takes. Be an advocate for your child.
I spoke recently with the woman who runs Parents Partnered for Preemies - a support network for NICU parents at Northside - she has a very touching and heartwrenching story herself and thus really understands what it's like - not to mention that this is what she does every day - she supports moms like me. She spent nearly two hours with me at Zoe's bedside telling me her story, listening to me talk, not telling me what to do, but giving me hope. She reminded me that our babies are unique - they came into this world early and developed outside the womb in a very negative environment - being poked and stuck and suctioned when in a perfect world they would have been swimming in the warmth of my womb. We talked all about feeding issues and bringing babies home with "equipment" and that as a parent somehow you dig deep and you deal with it. She told me of the numerous times her son would have bradycardiac episodes in which she would have to bag him to bring him back...this woman is incredible and true inspiration to me. She went through all of this about 14 years ago, unfortunately her son did not make it past the age of 4, but she spoke of the tremendous amount of joy her son gave them in those four years.
As she spoke of those four years I just had these running thoughts in my head, that she must have been a basketcase, so filled with anxiety every day but she said "No, I didn't live in fear. I enjoyed every moment of every day with him." She told me it was okay to have a pity party for myself every now and then, that I have to grieve for the "normal" pregnancy that didn't happen and the "normal" birth that didn't happen and the "normal" infancy of my babies that didn't happen. But the ultimate message I took away from my time with her, which she didn't say outright, was what a true gift of joy all children are to their parents. I often look at our three little girls (now all weighing over 12 pounds!) and I am awestruck by the sheer beauty and innocence in their eyes. Their skin is so perfect and soft, their eyes just sparkle with life and discovery and the joy they exhibit daily in their huge gummy smiles, and in the shrieks of happiness when we play - I am overcome with love and amazement.
It is so much fun to watch these little people grow and develop each day. Each day they learn something new or they'll do something and then stop, look at me for my reaction, of course receive accolades for their achievements, and then smile and look quite pleased with themselves! And they are each so different in personality - A is our observer, she's quiet, unless something is really bothering her, she'll talk and babble and even tried to giggle the other day - but when she looks at something, wow, the concentration in this tiny body is incredible. L, is kind of in her own little world and she lets you in when it's convenient for her - she is very vocal and is most often the first one awake. No soft cooing from her - she's a yeller! She has this cute laugh/cry she does when she's not sure if she's happy or not - it starts like a cry but crescendos in a huge smile and loud sigh. When you walk into the room, she may or may not look at you - that is if the toy in front of her is more exciting or eye catching. But when she does decide to take notice - her whole face lights up. Z - she can see into your soul with her huge, smoke grey, almond shaped eyes. She is very visual and has a pretty long attention span to just be content looking into your eyes and listening to you talk or sing to her. Sometimes I'm almost scared of her, it's like I can't hide my insecurities with her, I can't pretend around her, she knows me too well.
So, each day I will wake up and find the joy in my life by looking to the right at the incredible man in my life - how I got so lucky to have him AND three beautiful little girls is beyond me! I can not imagine going through this without him - his seemingly endless capacity for love and compassion has gotten me through these last 7+ months. And the devotion he has for these girls is palpable! And then I will look to my left at the crib that is still beside our bed and I will see those little swaddled bodies squirming around ready to start the day and I will look at the picture on my bedside table of my little Z who is fighting her hardest to get home - and I will feel joy.