To the Mama Raising an At Risk Kid in A Pandemic: I See You

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Dear Mama:

You never imagined that you would be here, juggling your child’s health and a global pandemic. This is the stuff of dystopian novels, and somehow it has also become your life.

I want you to know that I see you and that you’re not alone.

I see you as the world opens back up and your friends and extended family head out, but you’re still home in a perpetual waiting game. No matter the phase or stage the governor declares, you can’t go out, because the person you have been entrusted with depends on you being home.  

I want you to know I see you as you wrestle with impossible decisions about keeping your child safe while still providing for them.

I want you to know I see you as you turn down the invitations to family dinners, weddings, and parties.  I see you as you wonder if people will remember you when this is over.  I see you as you juggle the needs of your other children while caring for your vulnerable one.

I want you to know that I see you as you search the internet for your child’s medical condition and COVID, reading articles and medical journals, searching for answers that google can never provide, because what you really want to know is if your baby will be alright.

I want you to know I see you as you wrestle with the risk of a million tiny decisions that suddenly seem monumental, from running into the store for milk to getting your teeth cleaned. Suddenly every choice carries the weight of life and death, and that is a lot to carry when you just need some bread.

I want you to know I see you as strangers comment on this virus “only” impacting the elderly and medically fragile and your heart breaks because that medically fragile person is your baby.

Mama, I see you.

There is no use in pretending this time is anything less than terrible, and there’s no cute saying or advice that is going to change that reality. You have already heard enough of that business, and the fact that you didn’t commit a crime in response is cause for a medal.

I wish I could pour you a cup of (socially distanced) tea and listen while you tell me the whole story. I would remind you that you are impossibly strong and that you are going to make it, but also, you probably need a good cry. I would encourage you to make everything else about your life easier because what you are juggling is enough. 

This is a time for cereal for dinner and too much TV. It’s time to take deep breaths at every available opportunity and to move as slowly as possible. It’s a time to look deep into the eyes of these people you love so much, who are worth all you are sacrificing, and know that your family sees that love too, and they are going to forever be marked by the love they see in you.

Mama, I see you.

 

52 COMMENTS

  1. Thank you for sharing this. My son has a heart condition, and I AM LIVING with lung cancer. We have had to balance social distancing with carefully chosen social activities. He started going to a very small Montessori camp for his mental health. He goes 1 day a week. They have a lot of animals to play with , and less than 6 kids. He has had 1 friend over a couple of times. It’s definitely been difficult. It makes it even more difficult when family and friends, although they know your situation, tell you to stay home if you’re that scared. Thank you for understanding and giving us a pass.

    • My daughter is 14 yrs old and was born with a Congenital Diaphragmatic Hernia. She wasn’t supposed to survive and fought for years to get her lungs to work properly. I have tears in my eyes as I read this article. Thank you for writing this. I can’t even begin to express myself but you did it for me.

      • My grandson, also. He will be 9 in August and this is exactly how my daughter feels. CDH is scary, but we have survivors! Thank you Ursula for saying what we felt but couldn’t formulate into words.

    • Thank you very much Ursula for your article.
      It is the most wonderful thing I have read, I have a 21-month-old baby who has 3p deletion Syndrome and I live every situation you describe I get very excited until I cry there is little empathy in this world for families who have children with special conditions at home who live one day at the same time and we try to make our little ones happy despite the difficulties.
      Sorry my expression I do not speak or write English only Spanish but I use a google translator it is not very accurate but I can communicate ❤??
      A hug from Colombia.

  2. Thank you so much for writing every single detail of how I’m feeling pretty much every day of life right now. I have 4 yr old twins one of which has a rare vascular disorder that requires chemotherapy. I’m a single full time mom and am just trying to come up for air most days. I really appreciated your article. It brought tears to my eyes ❤️

  3. This broke me. It is everything I have been trying to put into words for months. Thank you for being a voice for all the moms in this situation. Thank you.

  4. what a read for our family! My daughter had a son, our first grandson, with Cystic Fibrosis and these past months have been tough, more for her than anyone I think. God Bless You!

    • Margaret,

      That is so much for your daughter to adjust to. Saying a prayer for her now. Glad she has a mom who cares and supports her – that’s a huge deal!

    • Thanks for this. One of my kids has a serious heart condition. I have never appreciated my yard as much as I have in the last few months. I tried not to freak out when it rained this weekend It’s hard explaining why we can’t go to a museum, or the library, or the trampoline park, or the indoor playground. It’s a good thing she loves the beach, and likes wearing a mask in stores (though I have to stop her from pretending to be a ninja).

      I’m also an essential worker, so I can’t stay home. I work in a nursing home, and we haven’t had a Covid case yet, but there’s the chance I could bring it home.

      • Lisa,

        Working in healthcare and parenting a fragile kid is the ultimate tight rope act. I think you’re amazing and am wishing you sunny days that aren’t too hot.

  5. I see you Ursula, and what I see is wonderful. Thank you for this! I needed to read exactly this. Thank you for permission to be right where I am. We will get through this. Wishing you and your health and wellness!

    • Robin,

      We’re gonna need the good cries over the next months, I think. I’m so glad to know we’re a whole tribe of mamas and dads in this.

  6. How about single full-time dads raising at risk kids? Dads have even less social and emotional support from their community.

    • Absolutely!!!! I meant no disrespect to dads, this is just a mom blog. Single dads have an incredibly hard and often lonely job on a good day and covid + social distancing has made every harder.

  7. This. Thank you. As I sit here next to my 7 month old in the ICU. We have a very rare form of epilepsy, we are significantly immunocompromised… we celebrated our 3 year old’s birthday with 5 immediate family members, socially distant, yet ended up intubated with pneumonia. This is such an incredibly scary time. And I can’t even put into words how much I needed to read this today. Thank you. I see you. ❤️

  8. Can I ask a question because I’m honestly trying to listen and understand? No hidden agenda. I just don’t know. Ok. Do you have to be concerned during flu season that your child will catch and be harmed by the flu? With my limited understanding, it seems like someone who is immunocompromised, would also be at risk then, especially as the flu kills more children than Covid has at this point. Obviously, Covid has killed way more people overall than the flu, but it’s low impact on children is so interesting and perplexing. Anyway, I’m wondering why this is bigger for immunocompromised people than the flu. Thank you in advance for your time to answer.

    • Jessica,

      Great question. I can’t speak for all mamas. For my particular kiddos, the symptoms of COVID intersect in ways that are not good with current symptoms and one of my kids has a diagnosis that means a 16x higher risk of death from covid. The same is not true for the flu. It’s just a whole different world. I also can reduce my kids flu risk with the flu shot. That’s just my experience, but it is a lot different than a normal winter.

  9. Thank you for writing and sharing this! I will save it to my reading list so I can easily reread it when I need the gentle reminder that I am doing the best I can during these challenging days.
    Peace

  10. Thank you. We’re at 4 crushing months of self-quarantine because my daughter has a rare genetic disorder. As a teacher and a single mom, this is beyond stressful.

  11. Thank you! My son has Duchenne Muscular Dystrophy. I am a single mother solely caring for my children. The thing I struggle with is people not taking this serious and cannot see or refuses to see why I do the things I do to keep my son healthy through this. I feel for the moms going through these same struggles.

    • Absolutely, Jacob!!!!

      This is a mom blog, so it was written for moms, but I meant no disrespect to any dad walking this incredibly hard path. I’m married to a (great) dad for whom this is all just as real and as you say that I’m thinking he probably does get less support. Soooo, I see you too Jacob, and all the other dads out there walking this hard road.

  12. Thank you for seeing me. And thank you for wording this without bitterness, which is a constant temptation. It’s nice to know that at least one person out there gets it.

  13. I am weeping. My youngest, who is rocking an extra chromosome, was diagnosed with ALL last Thanksgiving. We finally got to come home from St Jude in March. Only to come back to a global pandemic. My husband, 3 kids and me have been in isolation now for 4 months. It is so hard to see friends and family gathering and knowing however much I want to be there, I want my son to live more. I just take it day by day. I have just said from the beginning of this mess, I dont see a pathway back for us. There isnt a way that things can go back the way they were for a long time. He still has 2 years of treatment left.
    But I shared your article. To give friends and family a glimpse of what it is like.
    Thank you so much for writing so articulately what I have been feeling.

    • Holly,

      Oh my goodness, that is so hard. I will be thinking of you and will remember you. Be good to yourself. You’re gonna make it.

  14. I couldn’t have said it better myself. I have an adult child daughter with DS, and we BOTH have fatal lung diseases. She has been on reverse isolation long before this pandemic even started, because she remains immune compromised. Not only have we been on lockdown since the end of February, but we also have a containment area in the front of our apt. Nothing can enter our home that hasn’t been sanitized and disinfected, and that includes food, mail, and even myself, just to name a few. Every single day we fight to keep going. It is exhausting!!! We are both on oxygen, every four hour nebs, and she is also on a CPT machine. Yes, there is much more, too much to explain. But, we know how blessed we are because we have each other, and we have a wonderful support system on the outside. Plus, we know how much worse this situation actually could be, and we’re grateful to still be alive!!!

    Your article touched the very core of my spirit, and I just has to say “THANKYOU”.

    We will see y’all on the other side of this pandemic. Stay well and stay safe.

    Blessings,
    ~Dar~Shontelle ~

    • Oh Dar,

      That is so so so much. Thank you for sharing your story and encouragement. Please know that I am praying for you and thinking of you.

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