I’m about to share my soul with you. This post was really, really hard to write. It’s about parenting a critically ill child. But I value honesty, and health, so here goes nothin’:
The Realities of Parenting a Critically Ill Child
I’ve started and stopped writing so many posts I’ve lost count. I’m sure that there are at least 100 posts partially drafted, just waiting for me to finish them by now. But somehow, I couldn’t bring myself to write about my failing attempts extremely slow postpartum weight loss or the fact that I have just started working out again regularly…until recently.
Quite frankly, I’ve felt guilty getting excited about anything for the past year. THE. PAST. YEAR.
See, Smalls (or Calvin, as some of you may now realize), was diagnosed with Severe Aplastic Anemia in April of 2014. Up to that point, life was blissfully normal.
Ish had just gotten a new job, we were moving (back home!) to Texas, which we love, and making all kinds of plans for the adventures we were going to have once we got there.
Friends! Zoo! THE BEACH!
We could go camping in the Fall without freezing! In fact, we could do all the fun festivals now that Smalls was older, and he could start Karate again, or maybe even gymnastics!
We searched for a good preschool or coop where he could make some new friends (because, really, a kid can never have too many friends!). We talked about going to see plays at Miller Outdoor Theatre…and then we noticed some bruises. Not a lot, but certainly not “normal”.
Bruises? Really?
I started to research “normal” bruising for a preschool boy and called the pediatrician. Smalls has a history of iron-deficiency anemia, so they recommended that we start an iron supplement. The bruises got better…for awhile. But then the nosebleeds started.
And we were moving. In days, not weeks. The house was packed, it snowed (yes, in April), and we left. All the while, with this nagging feeling in the back of our minds. As we drove toward Texas, the bruising and nosebleeds got worse. Smalls started to bleed underneath his fingernails if he pushed on them…it just didn’t feel right.
Finding Answers…Even If They Weren’t What We Wanted To Hear
I called our pediatrician and made an appointment…and then we were waiting. When we got home, I took Calvin to an Easter egg hunt with some local friends…and then we went to his appointment. They wouldn’t draw labs on a Friday afternoon, especially the Friday before a holiday. So we came back on Monday.
I held my son while the nurses tried to be gentle, but ended up blowing out every single vein in his arms and hands. By noon, Ish got a call that we needed to take Smalls to the hospital for admission RIGHT NOW.
They had a bed waiting. It was scary and very surreal. You know those moments where you are watching a train wreck and can’t look away? It was like that. I felt totally out of body, and at 8 months pregnant, I was really, really scared for my kids.
This Isn’t My Life
We found out how dangerously low his CBC (complete blood count) was, and thanked God that we followed our instincts and pushed for an appointment. I watched as they physically restrained my son so that they could put IVs in both his hands to make blood draws easier.
I held him as he screamed and begged, BEGGED the nursing staff to let him keep his blood. Then I listened to the doctor tell me that he suspected that Smalls had either leukemia or Severe Aplastic Anemia, or SAA. And he hoped it was SAA.
1 in 1,000,000
Wait. What? He hoped my child had an incredibly rare, one-in-a-million disease because at least it wouldn’t be leukemia. Ish brought me clean clothes, and let me go home to shower on Wednesday night. We couldn’t leave Smalls alone. I slept on a crappy, pull-out couch/bed hybrid that I’m sure was invented by someone who most certainly doesn’t have hip bones or elbows (or a very pregnant belly).
And then we got THE diagnosis. On Thursday, Smalls’ team confirmed that he had SAA, and we were given two options: ATG therapy (immune suppression therapy) or a bone marrow transplant. I completely lost it.
The Answer NO ONE Wants
My son, who is larger than life, and who runs, jumps and loves more than anyone I know had a life threatening disease. He had no cells to fight infection, so seeing friends or even family was terrifying.
My amazing friends banded together and ding-dong-ditched dinners for Ish at our house so that he wouldn’t forget to eat. I went to the hospital cafeteria three times a day. Cafeteria food is crappy and expensive, in case you’ve never had the pleasure of paying $15 for a greasy slice of pizza and a small salad with a 16-ounce bottle of water. I don’t recommend it.
Waking Up
Up to this point, I seriously hoped and prayed that they were wrong. The blood work got mixed up…this wasn’t actually happening…
…and then Smalls was transferred to Texas Children’s at our request, and we waited some more. We were told that our insurance was going to run out the DAY it terminated. Have I mentioned moving SUCKS?
I scrambled to get COBRA in place. I asked about financial aid and was told that because Smalls didn’t have cancer, there wasn’t a lot of help out there. I quit my job. Unceremoniously, tearfully, and prayed that I would be able to start up my business again someday.
A dear friend started a GoFundMe campaign for Smalls, and I received nasty emails and messages from people who wanted to know why we needed the money.
A Life-Threatening Diagnosis Is Expensive
I only saw Ish for two hours each week while we were inpatient when he came up on Friday night so I could go home and sleep (and shower) and when I relieved him Sunday morning. Hospital parking is expensive. Gas is expensive. Smalls needed LOTS of medications, and we quickly hit our maximum out of pocket, but we were paying for COBRA and had an 80/20 out of pocket once the maximum is reached.
Every time Smalls needed surgery, the hospital called me and asked for our 20%. He has had 7 surgeries so far. He has another surgery next month to check his bone marrow. So yes, the GoFundMe helps. And yes, it’s necessary.
Everything helps, but it never seems like enough. There is always another bill or another expense. Many of Smalls medications were not covered by insurance, but he needed them to survive.
I’ve sold anything that isn’t nailed down. Baby’s cloth diapers went on the chopping block. Clothes, shoes, purses, all went to consignment or auction. I was able to make payment arrangements for some of his bills. NOT ALL.
And then we had the baby, which just added to the mountain. Why am I telling you this? Honestly, I don’t know. But I need to get it out. To all of those parents out there who have babies with cancer, or SAA, or other rare disorders…we get it. I get it. You are NOT alone, even though you may feel like you’re drowning.
The Slow Road To Our New Normal
We are incredibly blessed. Smalls SAA has gone “dormant”, which means that it’s not currently active. It can always come back. IT CAN COME BACK. So as my child is currently happy and relatively healthy a year later, we are watching and waiting. I’m sure that the longer he is “normal” life will become a little more normal.
But we still have to make a trip to the ER anytime he runs a fever over 100.4. The baby is growing, and we are able to get outside and play now. I’m able to hop on the elliptical for 30 minutes in the morning and do a workout video with Smalls while the baby naps.
We are able to take Smalls to the park, and play with friends, provided they haven’t been sick recently…. But it could all come to a screeching halt. So for now, we are going to enjoy this new “normal” and relish in once-a-month clinic visits instead of 3 times a week.
Thanks for listening.
Thank you, Brea, for sharing your heart. We are thankful Calvin is doing well and that you are all able to enjoy “normal” family life! We’ll keep you all in our prayers.
Thank you!!
Thank you for sharing your story. I’m glad to hear that your little guy’s aplastic anemia is dormant right now. May it stay that way forever!
My son David was diagnosed with SAA in August 2013. I shared his story on my blog, too.
If you’re interested, you can see those posts here: https://thesensiblemom.com/category/davids-story/
I hope you and your family have a wonderful holiday weekend! 🙂
Thank you so much for your kind words! I am headed over to check out David’s story now. Tell him “hi” from Calvin!
[…] a mom to two amazing little boys who are 4 years apart in age. My oldest son was diagnosed with Severe Aplastic Anemia when I was 8 months pregnant with the baby (who will be 1 next week!)-stressed does not begin to […]
Boy, do I get you on so many levels! My son was born with a rare syndrome and I know exaclty what its like. It’s a good thing to share, it can almost be therapeutic, and it can really put things into perspecive for others as well as create awareness for the illness. I don’t know you but I get you, I was in the same situation many times. And you think it could never happen to you, but it made you a mamma more fierce and you might not beleive it but you’ll be able to deal with pretty much anything – although I hope for all hope that he stays well and healthy and you never have to go through any of that again.
Thank you so much Lorinda!! It’s definitely taught me to not back down and appreciate the small things!!
Brea, I can really relate to parts of your story, so I understand what you feel. When our daughter was 10 months old she became very sick. It began with an ear infection but weeks later she’d lost weight, wouldn’t eat and lethargic. Her pediatrician insisted it was just an ear infection. Desperate we sought a second opinion and that doc sent us to the ER for tests. They drew blood (also with difficulty) and sent us home. The next day my daughter was almost unresponsive. We took her to the ER again and after a spinal tap and more tests they came back and said she had Type I diabetes, her sugar was 800 something. They said she was almost in a coma and that she could have died. She was so dehydrated they needed to do cut-downs on her ankles for her IV’s. She was in ICU for days and in that hospital for two weeks. One of us stayed with the entire time, alternating. After two weeks they could not control her sugar levels – she was the youngest patient they’d ever seen with diabetes (this was in 1981). So we requested to go to Joslin Clinic in Boston where they specialize in diabetes. We made the 3 1/2 hr trip and stayed there a week where they regulated Katie on two shots of insulin per day, taught us to do shots and blood tests and how to manage her diet. It was an expensive proposition but nothing like your experience. People do not understand what it’s like having a child with a chronic illness, and although diabetes can be life shortening and life threatening…..it in no way compares to your child’s illness. Yet it was scary, challenging, tiring, expensive and lonely. There were times I wanted to cry because we felt people didn’t get it. Grandparents wouldn’t babysit because they were afraid to do shots or finger sticks. We had to train every teacher, every school nurse. It made for some very challenging years, especially when at age 3 Katie was diagnosed with epilepsy. Now her low blood sugars had an even scarier result. Fast forward 34 years….Katie is a happy healthy young married woman who became an RN. Her diabetes still presents challenges, still worries us, and still sometimes leads her to bouts of depression. But thank God for modern medicine! I’m so happy Calvin is doing well. Prayers for his continued health and for your strength…..ain’t nothing that’ll make you as strong as having a sick child! God Bless you and thank you for sharing your story!
Oh Gail! I’m in tears over here! You are such an inspiration! That has to be absolutely terrifying. I cannot imagine. It’s so true that having a sick child tests your mettle like nothing else! Hugs to you and Katie!!
Thank you so much for sharing your heart! What a strong boy you have and what a strong mother you are! 🙂
Thank you, Brittany! He’s pretty amazing!
Oh, Brea… I just can’t imagine… actually, I guess I could, and that’s why I had tears rushing down my cheeks as I read this. I see that this post is several months old, so I hope that your little guy is still doing well, but my gosh how scary that must have been! It’s strange how we can only protect them from so much… big hugs, lady.
He’s currently doing great! His levels are normal for the first time in 18 months. Definitely not out of the woods (he will never be, really), but he gets to just be a kid, which I am so incredibly thankful for!
Oh Brea. Thank you for sharing your life and your son’s life. I have no words for the pain that you all have walked through. But as a mom of a son with a special need – I see you. And I am so very sorry you have ever had to explain yourself to anyone.
Thank you, Ashley. I’m sure that as a special needs mama you’ve had to explain yourself even when you should not have to. Hugs!
damn brea… i’m sitting here in tears….
i’m so sorry that you guys have had to go through this but i’m so happy that he’s in remission. *hugs*
Thank you ❤️
Oh, Brea, this was a wonderful, heartfelt post that can really help open some eyes. I am so happy to hear that y’all see a light at the end of the tunnel and things are beginning to lighten up. I can’t imagine your experience and I sincerely hope others can open their hearts to be kind instead of judgmental (and I’m so sorry people felt the need to be judgmental instead of just helping). I can’t wait to meet the superboy Smalls!! 🙂
Thank you!! He can’t wait to meet you either!
Wow, thank you so much for being vulnerable and baring your soul! You are one brave, strong mama, and you should have never felt like you had to justify your decisions or actions while you went through everything with your son. I can only imagine how scary it must have been and STILL IS. Just know, you always have a friend here who will be praying for you and your family for the days, months, and years ahead!
Thank you, Marielle! I am bowled over by the amazing support the blogging community has shown for my family. We are so, so blessed!
Every month I feature Inspiring parents. I really love this story and I would love to feature you if you are interested. You are such a strong mom in a really crappy situation. Money is my number one stress and anxiety trigger so its nice to hear about that side of illness if only to help me understand what would happened if we ever found ourselves in that circumstance. Please email me at Glaze.jess@gmail.com if you are interested in helping me out.
I would love to! I’ll shoot you an email today.
I couldn’t even imagine all that you have gone through! Always on edge, wondering if tomorrow will be “normal” or will you relive another hospital experience.
It is so incredibly brave of you to post about this. I hate how people have used GoFundMe’s for frivolous items that when someone really is in dire need, people get angry and question!
I pray that his SAA does stay dormant. That he has the chance to grow up and enjoy life. I pray for your comfort.
Thank you for sharing {hugs}.
Thank you so much for your prayers! We need them!
every mom’s worst nightmare, you are so strong mama! You and your family are in my prayers, thank you for sharing and being so vulnerable!
Thank you ❤️
You are such a strong mommy! Thank you for sharing your story. I can’t imagine being in your shoes but I’m so glad to hear your son is doing better! You guys will be in my prayers tonight and I hope your “new normal” stays “normal” for as long as possible.
Thank you❤️
I’m so sorry to hear about this. My daughter had some health challenges as a newborn that ended up being short term but it was the most awful time. Also, don’t feel you have to apologize for the Go Fund Me! That makes me so sad that you have to justify it. When your child is sick you’re entitled to not have to stress over money!
Thank you!
wow…I cannot even imagine! Prayers for your sweet family and your continued strength!
Thank you!
i am so sorry your son and your family had to go through that! Praying it stays inactive! You are so strong, mama. Much love
Thank you!
Brea, I honestly can only imagine how gut-wrenching this was and still is for you and your husband. I truly send you and Smalls all of my love, prayers and virtual hugs…and I am so happy he is doing so much better. (I’m ugly crying)
Thank you so much for sharing all about this. It is so appreciated when parents open their heart, and are so honest. It means that others out there may find the courage to share too.
I hope so!
You are an amazing mom!!
Thank you ?
Your story makes me so thankful to live in Canada just because of the medical costs.. But I cannot imagine dealing with any of it, the very least being financial. I am so sorry. I’m happy he is dormant right now and I hope he remains so. Always here if you need anything xox
Thank you beautiful!! Much love ❤️
your strength, courage to share, and love is an inspiration to us all. Smalls sounds like a fighter and my wish is that he has lots of healthy days ahead! hugs!
Thank you, Sylvie! He’s an amazing kid!
Wow! Can’t imagine what that must have been like to walk through all of that. We have had our son in the NICU when he was first born for 2 weeks and then admitted a few more times for severe asthma. It’s so hard to watch them and feel helpless. But so glad to hear he is healthy right now and pray that will continue! xox
It was insane-and it’s so far from over. This month his numbers have dropped significantly, so we’re back to packing our “bug out” hospital bag and watching every fall, every bruise, every potential bloody nose. Thank you for the prayers!