On and off during our long in-patient stays at Children’s the last 3 years there was a parent breakfast “hour” on Tuesday mornings with Panera cinnamon rolls and muffins (Duh- that’s for sure a reason to go). It was a chance to get out of your child’s room, meet other parents, introduce yourself, ask questions, maybe just take a breath, and EAT. I went to a few of them and always enjoyed getting to know the other parents. It is beyond difficult to plan on a parent meeting or anything at all, for ANYONE on 7 as shit comes up fast. Tuesday? 10 am? No problem. Next thing you know…it’s next week or last Thursday. Time moves at a snails pace or as fast as my boyfriends F1 race (Carlos Sainz Jr.).

Last May, exactly 21 days post transplant for Luke, Fatoumata walked into the parent random Tuesday gathering. She had a rolling robot translator and a social worker with her. She immediately caught my eye because I could see the pain and fear in her face. It was clear she was in a foreign place not able to understand most of which that was surrounding her. I remember finishing whatever conversation I was in and and intentionally trying to communicate with her. I started talking to her, through her translator (via a screen). I only speak English, Italian, and Spanglish. Fatoumata is from South Africa and speaks French and I have no idea what other dialects. It was very difficult to communicate and I wish I could remember all I learned during our interaction that time. She had been at Children’s with her son for a couple of weeks. She had traveled to Denver to see one of her daughters graduate from University of Denver. She was also seeking better medical care for one of her sons (17 years old) and one of her daughters (I think around 6 years old) that traveled with her. They both have sickle-cell. I learned that Fatoumata is a mother of 9 children, all with the same father. 

*2 had died from sickle cell

*2 with sickle cell were with her seeking medical help

*4 others with sickle cell who are still in South Africa

*one daughter that just graduated from University of Denver who does not have sickle cell

(I still question whether or not I got that all straight, but again the communication has been difficult)

I got back to Luke’s room and immediately felt moved to write her a note. I had to do something. My heart was absolutely crushed at the profound journey of her life that I had only just begun to understand. I’ll never understand it. 

Side note: I’m sure I’ll get shit for this. Bring it on. I get how many people would immediately question how or why she had 9 kids (makes my uterus hurt indeed). Why continue to have children after so many had been ill? How she came to the US.  How our healthcare system is now “responsible” for her precious children. I don’t know those details and right now, I care, but I really don’t. If you have a smidge of a soul and saw this Mama and her kiddos, you would feel moved, just like I did and still do. Besides my Luke, I have never met a braver individual. I am just beginning to understand my roles in this life. One of them is to not be in judgement of others. One of them is to SAY SOMEthing. DO SOMEthing. When you feel that heart tug, that sinking feeling in your gut, evaluate it. Is what I want to do going to be helpful or hurtful? I mean, there are LOTS of times I want to throat punch someone. But, let’s focus on the other times that you WISH you would have told someone or said something that could have helped you… better yet made a positive influence on someone OTHER than yourself?  

Back to Fatoumata. I returned to Luke’s room and typed up a quick note. A little bird printed it for me. Then I had a little mouse deliver it for me. They were on 7 west and we were on 7 east so we never saw each other in the hallways or kitchen. Many hand washing, buzzing in, door codes away, yet right across the hall from us. I didn’t mention my new friend to Luke that day or night. I remember taking a cinnamon roll back to his room to maybe see if he would consider taking a bite. He didn’t. It was a brutal, brutal, time in transplant for him. I had zero intention of hearing anything back from my new friend. But I did…

Here is the note and google translate I printed and had delivered to Fatoumata. 

My new friend,

May 16, 2023

I met you this morning at the 7^th floor parent coffee.  I also got to see your beautiful daughter.  Having a critically ill child or children is the absolute worst thing that can ever happen to a mother. I would imagine it is even more scary and lonely in a place that isn’t familiar to you with language barriers.  I want you to know that you are not alone.  No matter what a person looks like or the language they speak, the universal pain going through something like this is the same.  It is simply awful. 

I do know that there is much hope.  There is lots of faith to grab onto.  Grab onto it and stay positive.  Continue to fight for a long life your children.  Children’s Colorado is the BEST in the world.  I sure wouldn’t be here if it were not.  The people are loving, caring, and the smartest people you will ever meet.  Your children will receive the best care.

I am so very sorry to hear of the loss of two of your children.  My heart aches for you.  I could see the tears in your eyes this morning when you spoke of their loss.  You are a warrior for coming here to seek a cure for two of your other children.  I do hope the other 4 with sickle-cell will someday have the same opportunity for advanced medical care. 

My son is being treated for acute myeloid leukemia.  He is 19 years old and is a freshman in college.  Today marks +21 days since his transplant to cure him.  I was so very fortunate to be selected to be his donor.  It has been a series of ups and downs but the only way to look, is up. 

I just wanted to write you a quick note in hopes of making you feel less lonely and afraid.  I am happy to talk or cry with an interpreter if you ever feel the need.  Keep going.  You can do this!

Much love,

Suz Karel (7 east)

16 Mai 2023,

Mon nouvel ami,

Je t’ai rencontré ce matin au café des parents du 7e étage. J’ai aussi pu voir votre belle fille. Avoir un enfant ou des enfants gravement malades est la pire chose qui puisse arriver à une mère. J’imagine que c’est encore plus effrayant et solitaire dans un endroit qui ne vous est pas familier avec les barrières linguistiques. Je veux que tu saches que tu n’es pas seul. Peu importe à quoi ressemble une personne ou la langue qu’elle parle, la douleur universelle qui traverse quelque chose comme ça est la même. C’est tout simplement horrible.

Je sais qu’il y a beaucoup d’espoir. Il y a beaucoup de foi à saisir. Accrochez-vous et restez positif. Continuez à vous battre pour une longue vie à vos enfants. Le Colorado pour enfants est le MEILLEUR au monde. Je ne serais certainement pas ici si ce n’était pas le cas. Les gens sont aimants, attentionnés et les personnes les plus intelligentes que vous rencontrerez jamais. Vos enfants recevront les meilleurs soins.

Je suis tellement désolée d’apprendre la perte de deux de vos enfants. Mon cœur souffre pour vous. J’ai pu voir les larmes dans vos yeux ce matin quand vous avez parlé de leur perte. Vous êtes un guerrier pour être venu ici chercher un remède pour deux de vos autres enfants. J’espère que les 4 autres drépanocytaires auront un jour la même opportunité de soins médicaux avancés.

Mon fils est traité pour une leucémie aiguë myéloïde. Il a 19 ans et est en première année à l’université. Aujourd’hui marque +21 jours depuis sa greffe pour le guérir. J’ai eu tellement de chance d’être choisi pour être son donateur. Cela a été une série de hauts et de bas, mais la seule façon de regarder, c’est vers le haut.

Je voulais juste vous écrire un petit mot dans l’espoir de vous faire sentir moins seul et moins effrayé. Je suis heureuse de parler ou de pleurer avec un interprète si jamais vous en ressentez le besoin. Continuer. Tu peux le faire!

Beaucoup d’amour,

Suz Karel (7 est)

There is more to this adventure, I am thankful to say.

Buckets of gratitude to Lionel Richie radio on Spotify,

Suz

The day after I met Fatoumata:)