On #kidneybaby

My worst days with Brennan will always beat my best days without or before him. 

Our worst days probably look a little different than yours but that’s okay; that’s our cross, handpicked for us by Christ Himself. Complaining does nothing, but saying nothing is no better. We’ve gotten a lot of questions & comments about our #kidneybaby that I wanted to take a moment to address, to give you all a peak of this angry-Catholic heart. 

What’s different about Brennan now? 

Thankfully not much! By looking at him, you’d never suspect any problems, but he has three holes in his lower abdomen area, two of which urine come out of. To combat this, we cloth diaper which is a little out of the norm I suppose.

What will be different about his future?

After next year, when the stomas (holes) are reversed, Brennan should be able to lead a relatively typical life. So far he has no dietary restrictions and he’s working on gaining weight. But usually kidney kids need to stay away from sodium, carbonated drinks and large amounts of protein. He has decent gross motor skills, but development will always be an uphill battle.

Doctors predict that he will need a transplant in about 10 years due to the likelihood that he will get very tall very quick like his daddy. If a kidney is not available, he will go on dialysis (not sure which type yet) until one is available.

What’s changed for your family?

Day to day care for Brennan involves keeping his stomas covered (or else he’s a leaky babe) and washed during our nightly bath. Now that he’s more active he loves to grab at them so we have the additional challenge of keeping his hands occupied during diaper changes & bath time. He is not allowed in any sort of day care and we try to be vigilant about who is around him. We need to get his hearing rechecked since the ears and kidneys develop the same time in utero and even a slight issue could throw his speech off.

Long term we are optimistic and hopeful that are daily life be “typical” as if any of our lives are normal, haha. But we are constantly mapping out any trips to the nearest children’s hospital. I am more open to home schooling if his care ever requires him to miss long periods of school (and something Liam & I are actively praying about anyways).

As parents it’s a little difficult for us to day dream about future weddings or graduations and much easier to see a future in a dialysis center or transplant hospital. I just told a friend today that I never thought 23 year old me would be pondering a life of chronic medical care. But here we are.

Is his care expensive?

Right now we have Tricare so no, his care is covered. Knowing how much this has saved our family makes weeks or months without Liam seem a bit more bearable.

 Do you want more kids?

We want as many children as God will trust into our care. Preference? 5 or 6

Did you really want to get pregnant while having “a kid like Brennan?”

*This was a question no one has had the guts to ask us outright. It’s been danced around by shocked looks and pity-filled voices, but the question itself has been asked to my friends & parents.

I will begin by stating that a repeat of Brennan’s condition is approximately 1 in 2 billion. But his kidney problems do not make him ‘a kid like’, rather, he just simply IS Brennan. The baby who made me a mom and Liam a dad.

Is there fear of another high risk pregnancy or baby complications? Yes. It makes me physically ill to think of repeating those months with another baby. But if having ‘sick’ children is all I ever know, that’s okay too. Because they are and always will be more than their medical labels and social media hashtags. (I doubt Brennan will always love being #kidneybaby). 

 Brennan should not be denied the chance of sibling because of a non-genetic medical condition. Even if it was genetic, who are we to play judge to say who is worthy to have a family or siblings?  This question or the assumption that our current pregnancy couldn’t have been planned due to Brennan’s condition is hurtful and insulting. For the record, we WERE trying for baby #2 and our prayers were answered! How awesome is that?

I hope this satiates some curiosity but I am pretty much an open book for comments or emails. If you or someone you know has a chronically ill child, please reach out- if not , me then to another mom who can understand how deep the words I write truly go. If you are that mom (or dad!) Know there is a community of us praying, crying, and carrying our crosses right there next to you. 

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