I just don’t understand why bad things happen. I don’t think I ever will.
I’m still so sad about Miss Annaleigh. I never expected to become so “involved” with a blog. Is that weird? I came back every day hoping for an update on the miracle that was those babies. I’ll continue to read, of course, for as long as the blog remains. I cried when I read they were born… I cried when I read about the little milestones they were stepping on. The minor weight gains, eating 2ml, being able to breathe better, kangarooing – it all affected me so greatly. I went first thing in the morning/last thing at night to check for an update. I thrived on knowing the babies were doing well and growing; I said as many prayers when they were well as I did on the days things seemed to go awry. I’ve cried so many times this week over Annaleigh and for Joe and Brooke and Charlie and Lily. I don’t even “know” these people.
And yet, I do. They are parents just like me. They are a family, just like mine. Although all of my babies have been big surprises – they tried and tried and tried again until they were blessed with three. I wasn’t trying, they were trying – we’re parents just the same. We know the joy of seeing our babies for the first time. We know the heartache of being told there is something wrong. I don’t know the heartache of having to give my child back to God – but they do. It hurts me when I know that other parents know that pain. I can only imagine there is no worse hurt. The pain of losing the people in my life that I have lost is always with me. It’s strong. On bad days, I lament my losses endlessly until I fall asleep, puffy-faced and tear stained. On good days, I am able to laugh when I think of random memories. On bad and good days, I feel them around me and know that I’m never alone. Even for a moment.
I don’t know personally the pain of losing a child to God. I only know the pain of loss…. I am adopted. I’m the oldest of six adopted children. There were several times we had to give a baby back because a birthmother changed her mind or a birthfather wouldn’t sign the papers. As a child, giving back those babies… the pain of losing my new brother or sister – has stayed with me all these years. I still wonder about them. I don’t know the pain of losing a child to God. I only know the pain of loss. If God had taken my brothers and sisters away, they’d still be here with me.
I was very scared we would lose Magnolia after she was born. I was practically convinced we would. Before she was born, she was diagnosed with hydronephrosis in her right kidney as well as likely having reflux issues with said kidney. Her other kidney (the left one) never developed properly we were told, so after she was born we should expect it to disappear.
She was born and put immediately on antibiotics as a precaution. An ultrasound was performed on her kidney and it turned out to look pretty bad. Surgery was probable. We would visit the specialist two weeks after she came home. Being born at 35 weeks 5 days, we were very lucky that the girls only had to spend an extra day (than me) in the hospital. No NICU time. We were blessed. I cried all night the day they stayed in the hospital and I went home. We went back to the hospital at 11pm to visit them. I felt so bad leaving my precious babies behind. I felt like I was losing time with them.
And here are parents (not just the DiGiuseppes) but other parents I know (and blog-stalk, not in a creepy way I promise) who have had to leave their babies in NICUs for weeks, months, etc. How do they do it? Here I was worried about ONE night. God never gives us more than we can handle, so I can only think these parents must be really, really, really freakin’ strong. And God just likes to throw me on the edge for a minute before pulling me back. He knows I can’t handle the edge.
Two weeks after she was born, we went to the kidney specialist. He reviewed her ultrasound and the tests performed at the hospital and basically told us that we need to wait. She would need surgery before she was five years old. It was best to put surgery off for as long as possible, providing no big issues creeped up. We needed to make sure she was making pee-pee diapers and things were “working” okay. He said to call if we had any concerns, if it seemed like things weren’t working, etc. And come back in a year.
And so we waited. We changed diapers religiously to ward off the chance of infection. We went every two weeks to pick up the new Rx (the medicine lasted only 14 days every time it was made). We freaked out when we missed a dose – often waking her up in the middle of the night to make sure she got her “pink mo” (mo-mo is what we call milk in our house; so ‘pink mo’ is what we called the pink medicine – yes, we’re strange. we know it.) I was crazy about people washing hands before they touched her and I nearly washed my hands off (seriously) trying to keep a germ-free-no-cross-contamination zone in my house….. I didn’t let anyone (ANYONE – except for grandmas, grandpas, and my siblings (hubby is an only-child)) in our house for a whole month. We actually held the girls up the window for people to see them. Seriously, like monkeys behind glass in a zoo. I was mildly psychotic. I’ve yelled at old women in church for touching my daughters, and I’ve smacked strangers hands away. Call me crazy. (I don’t care if you do.)
But I HAD to be so protective. This was my daughter. If I wasn’t SO protective, I would lose her. I was sure of this.
We went back to the doctor six months later to the specialist who did a reflux test and checked her now nearly disappeared left kidney. The reflux came back a 5/5. A 5 being the worst it could be. He told us to continue the antibiotics and that sometimes these things correct themselves. At 5/5 we shouldn’t expect it to correct itself but he still wanted to wait to do the surgery. He said basically “the longer we can push off the surgery, the better for her”. I knew my daughter would need surgery. I just hoped we could push it off until she was four or five. That was the age the doctor said would be best. We prayed. We prayed a lot. We just wanted her to get better. We wanted there to be no problems this year. The pink mo would help keep infections away & I would continue on with my protective mothering.
A year later we returned. Magnolia was now a year and a half. Thriving. Running, jumping, biting her sister, trying to talk, and had gotten very used to taking her pink mo. We had no issues during the last year. Pee-pee diapers were plentiful. Some days she’d wake up dry, some days she’d wake up with the pee-pee-est diaper ever. But nothing major had creeped up on us.
The first reflux test was difficult; she was only six months old. They had trouble with the catheter insertion… she cried a lot… but she was still a baby-baby. She didn’t have the ability to really comprehend or be scared. (I think?) She was more aware this time of what was happening to her. She did not approve of all the hands touching her, nor did she approve of the catheter for the reflux test. That was very hard. “Daddy, daddy, daddy” she kept screaming. I was of no use to her. Her Daddy would protect her, this she knew. I would have protected her, too… but in a way, it’s nice that she knew her big strong Daddy could “fight off her offenders and protect her honor”. Mommy would just tell her everything would be okay and that Mommy was proud of her. (She also couldn’t say Mommy yet…)
Her left kidney is gone. Disappeared. Vanished. “Reabsorbed into her body” which sounds super sci-fi. The reflux test went well, apparently, as we were told by the specialist that her kidney had corrected itself. There was no more reflux… a 0/5… she didn’t have to have surgery… she could stop taking the pink mo… I needed him to repeat all of this twice because I didn’t really aborb it. It was surreal in a way. I was confused. My husband had tears in his eyes, I hardly showed an emotion. I think I was shocked? I’m not even sure now why I… acted that way. I suppose… I don’t know, I guess I was so surprised that everything had changed. In an instant.
I had been so sure that I would need to prepare myself for a goodbye. A forever goodbye with my precious Magnolia. My daughter. A piece of me. A piece of my husband, too, but a piece of me I had carried with me for my entire life. Only at her conception did she fully become My Magnolia – but until then, she was there with me. The whole time, just waiting for Daddy to come and give her his part.
I still worry now that something will happen to her even though the doctor gave her the all-clear to live life… And I count myself blessed every day that I wake up and she’s babbling (or crying) with her sister in their room. I still worry we’ll wake up and she’ll be gone. I’ll probably never stop worrying about this. I am blessed, I know. I have been given a gift that some other parents have not been given. I have been dipped into the waters of loss… And because of this gift, I am able to empathize with the hardships and trials others are given.
I can’t wait to read more about Lily & Charlie and how well they’re doing. They have a long way to go from here. But they also have their sister, Annaleigh, watching out for them from Heaven, her hands on their shoulders as they pass through life helping to guide and protect them. She’s always going to be there for them and for her Mommy and Daddy.
Brooke & Joe – I am so very sorry for your loss. I’ve prayed for you and your family for a long time and will continue to do so. I hope you are able to find comfort for the rest of your life through Charlie & Lily and the memories you were able to make with Annaleigh. You are blessed in an infinate number of ways. Even though it’s not in the best or happiest way possible, Annaleigh will always be there with you. Thank you for sharing your story with me.