One Year

We're coming up on the one year anniversary of that fateful day when we were given Regina's heart defect and probably Down syndrome diagnosis. The one year anniversary of the toughest year of my life, with the lowest lows and the highest highs. Scott and I have been through the refining fire, but we most certainly haven't come out the other side yet.

We have been privileged to enjoy Regina's company for seven months now. She is a little firecracker. She doesn't care that she just had open heart surgery a mere two and a half months ago and low muscle tone, she is rolling over both ways and holding her head up high and steady while on her belly anyway. She is very close to sitting independently. Every one of these milestones for this baby in particular isn't mundane, it is a marvel. She doesn't make consonant sounds yet, but she is trying and she coos up a storm. She loves snuggling and hates afternoon naps. I love the way she gets so excited when she sees me and starts kicking her feet and reaching for me with her roly poly little arms, all the while giving me the most dazzling smile that lights up her whole face. She loves giggling with her older sisters and grabbing their hair when it tickles her face.

She still won't eat by mouth. She vomits solid food and lets milk dribble out of the sides of her mouth or actively spits it out. I am still soldiering on with trying to get her to latch every day, but she just munches and never sucks. Somewhere along the way, she has completely lost her suck. Meanwhile, my supply is slowly dwindling to nothing. I feel like a complete failure.

It's been a hell of a ride. Scott and I have weathered this storm together. He has been unwavering in his support and advocacy for this baby. He has helped with billing and insurance while I negotiated with medical personnel and schlepped Regina and all of her feeding tube paraphernalia from doctor's appointments to therapies to hospitals and back home again. Some of my worst case scenarios have come true, while others never manifested themselves. I have a newfound awe for mothers of children with special needs. They somehow muster up the time and energy to assume the duties of  homecare nurses, transportation, case managers, medical records keepers, insurance advocates, medical advocates, home pharmacists, researchers, medical supply managers, physical therapists, speech therapists, feeding therapists, and more! Oh yeah, and then they have to do all of the typical mom stuff on top of that. It is inhuman the things I've seen these mothers achieve. They are the real superheroes.

I think one of the things I have struggled with this past year (other than the obvious) was comparison. Comparison is the thief of joy. Every time a healthy, typical baby was born, every time I saw any baby happily sucking on a pacifier or nursing or bottle feeding, I felt the deadly stab of envy. I felt guilty for never appreciating with my other four children the simple gift of a baby that eats. A baby that wouldn't die of starvation without a feeding tube. I felt guilty for never fully appreciating the gift of a baby with a healthy heart. A baby who would never know heart failure or open heart surgery. I agonized over these feelings of envy and went to Confession often. I confided in my mom, who always has words of wisdom for me. "Sylvia," she said, "nobody is having or feeding healthy babies at you!" That gave me pause. We are all on our own journeys. Nobody is breastfeeding their baby at me. She is just breastfeeding her baby. Breastfeeding a baby is a gift. A baby without health complications is a gift. A baby with health complications is a gift, just in a different way. I am not owed anything. I was not owed a healthy baby. I was not owed a breastfeeding experience with said baby. Everything I have is a gift, including Regina. This jealousy was the result of my own pride. I felt like I was owed a healthy child who ate like the other children, and in not having that, I was robbed of something. You cannot be robbed of something you never possessed.

No individual among you must become filled with his own importance and make comparisons, to another's detriment. Who made you so important? What have you got that was not given to you? And if it was given to you, why are you boasting as though it were your own?

1 Corinthians 4:6-7

I still feel a twinge of hurt when I see happily feeding children these days, but I try to no longer let it consume me. I cannot stop my emotions from happening, but I can keep them from festering. The saying goes, you can't stop birds from flying around your head, but you can stop them from making a nest in your hair. I try to consider everything a gift, even the suffering. Because you cannot take anything for granted if your child is medically complex, even if you wanted to. My dear friend and neighbor has a daughter Regina's age who is in need of a liver transplant. When she brought her daughter over so that I could check her daughter's NG tube placement (I've become somewhat of an expert in that these past seven months), she saw Regina and exclaimed, "she is so pink!" Likewise, I took one look at her daughter sucking away on a paci and exclaimed, "she has such a wonderful suck!" And then, we looked at each other and burst into laughter at our absurd situations where we would marvel at such ordinary things that before we had always taken for granted.

If we didn't laugh we'd cry.

10 thoughts on “One Year

  1. Becky D

    Thank you! I have a 30 yr old daughter with epilepsy. Her seizures were nicely controlled for 7 yrs. This past year not so much. Besides our 2 adult age daughters we adopted twice in our 40s. Our current 10 yr old ended up in the children’s ER last week. I’ve been a bit crazy this week. She might have asthma. This is a little girl who survived a very traumatic 19 months before she became our foster baby then daughter. I will admit I was having conversations with God on 4 times inhaler added in to the seizure worry of my other daughter etc was too much. I mentioned the oldest last seizure to my husband several days after the fact. I was like the other daughter not having oxygen saturation trumped a partial seizure.

    1. Post author

      I know, when people tell me God doesn’t give you anything you can’t handle, I can’t disagree more. He most certainly does, which is why you need to surrender to His Will and beg Him for all the graces you need to bear it. Praying for you and yours, mama.

  2. beverley baggett

    The picture you put up now of all 5 of your precious girls is soo pretty. You have so much to be thankful for. You have a wonderful family!!

  3. storiesofourboys

    Beautiful post. My sister was born with a hole in the top of her spinal cord, so every single delivery where my baby could walk, talk, see, and have potential to laugh and play, I was thankful for. Still, when one of my sons developed a seizure disorder and had to repeat 3rd grade, it still hurt. We all walk a different path, but we serve the same Lord. I love what you wrote here about God. You are doing a wonderful job.

  4. Christine

    Beautifully written! You have a gift with words. Those superheroes? YOU are one of them! I’m in awe of you!

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