I’ve written about Temen’s kidney/bladder issues many times on this blog, but never from a grateful heart. But the truth is, I am grateful for Temen’s health issues. In the spirit of Thanksgiving season, I’m here to tell you why.
No, it is not ideal. Yes, it is hard. Of course, it is heartbreaking. But, I am thankful for every bit of it. I don’t have any other choice.
When I was pregnant, I was terrified. The anxiety was so debilitating that I would frequently need to leave my office to use my at-home fetal heart rate monitor – convinced that she had died and there wouldn’t be a heartbeat. In fact, we found out her sex when I was sixteen weeks pregnant because I had a bad day at work and convinced myself that something was wrong. We shelled out $200 to go to a boutique to see her and find out the gender that night. It was not normal. But I was so worried that this miracle would be ripped away from me, and I was afraid to be excited and I was afraid to accept it.
My pregnancy anthem quickly became Oceans by Hillsong UNITED. It was the only song I felt connected to, the only song that made me feel seen, the only thing that gave me even an ounce of relief. I listened to it every day. I would drive to work with it as loud as I could, singing along in tears. I even listened to it on repeat as I gave birth. It was my prayer, it was my hope. Here are some of the lyrics:
You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will standAnd I will call upon Your name
And keep my eyes above the waves
When oceans rise, my soul will rest in Your embrace
For I am Yours and You are mineYour grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start nowSpirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
For me, this song is about trusting God in the unknown. But it isn’t just about trusting God while you are in the thick of things – the lyrics that kill me today are:
Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
Lead me, wherever You would call me. This bridge is repeated over and over again in the song. I prayed these lyrics every day. I asked to be led through the unknown every day. And today, I feel like God has done just that. He has lead me through the hardest experience of my life, and with a grateful heart.
Is it weird that I say I am thankful for my daughter’s illness? Probably, to some people. It might make you uncomfortable, but I can be thankful, I can be positive, and I can look at the bright side of things in the middle of the storm – It doesn’t mean I like the storm. It doesn’t mean our lives wouldn’t be easier without the storm. It doesn’t mean I don’t love my daughter or feel an ache deep in my bones every time she’s in pain. It certainly doesn’t mean I didn’t spend some nights in bed silently crying, scared of the unknown, wondering when we’ll finally be on the other side of it all. No, it just means I made the decision to accept where we are and find the good in it. Because, what other option is there?
My gratitude does not preclude any anger or sorrow I may have. It makes it bearable.
My heart breaks for Temen, for our family, for what could have been. Temen doesn’t deserve to be poked. I wish hospitals weren’t a regular part of her first two years of life. I wish she didn’t have to take medicine every day. I wish that every time Temen got a fever we didn’t panic. I wish I didn’t spend probably an unreasonable amount of time smelling her diapers wondering if her urine smells off. These are things I could do without. But my heart jumps for joy when I consider the gifts her health issues have brought us and others.
It’s given us perspective.
Our daughter is not and was never terminal by any means, her chronic illness will end at some point, and honestly for the most part she is okay on a day to day basis. If she were to have any chronic illness, this would probably be like one of the top five to have. But she has these “flare-ups” of infections, hospital stays, and surgeries. We feel like we’re in a middle, grey area when it comes to her health and how people understand it – and chronic illnesses in general. There’s no pattern, and on the scale of illnesses, hydronephrosis/ureteroceles/tract issues are pretty low on people’s totem pole. I want to speak about her health issues openly and honestly, but without seeming fraudulent or like I’m cheapening the experiences of others who have it much worse than we do. And I feel this way, and have this sensitivity because I’ve sat in the hospital and watched a mother walk her daughter down the hallway – head shaven, recovering from brain surgery.
That being said, holding your daughter while she’s so sick her body is limp or holding your daughter while the nurse talks about the possibility of sepsis – that gives you perspective. It’s not a side of the world many people get to see. It’s gut-wrenching but beautiful all at the same time, and makes us count our blessings and do our best to not sweat the small stuff.
It has shaped us.
Her illness started shaping us before she was even born. We knew there was something we had to look out for, something we needed to be on alert for, an extra layer of parental responsibility. But after her first infection, it really changed us. And it continued to change us. It has been hard, but all in all it has brought us closer together as a family. It’s changed my marriage – it brought it to a deeper place just by virtue of the fact that we are the only people who are in this and understand this odd “middle” feeling. It’s shaped our relationship with Temen. We are so incredibly grateful for her. I’m sure every parent is grateful for their child, you don’t need health issues to feel gratitude for your family. But, there’s a certain level of appreciation, of patience, and care that comes after dealing with health issues like ours. We’re more in tune with her moods and her overall health, which makes us that much closer overall.
It has shaped Temen.
This is the one that makes me the most emotional. I hate that she’s had to go through what she has for the sake of becoming the little person she is today and will be tomorrow. Regardless, I am thankful. Because it has made her who she is. It’s changed how we’ve treated her in many ways, even if we’ve tried not to, I’m sure we have. It’s changed her perception of certain things. Today, Temen is the kindest, most intuitive little person I have ever known. She is a bad ass. She is a bright light even in the darkest of moments. I have no doubt that if none of this happened she would still be a wonderful little girl, but again, I can’t help but have this nagging feeling that her illness has just made everything deeper. She loves deeper. Her joy is deeper. She feels pain deeper. We all do.
We’ve been convicted to give back.
Children’s Hospital has given us more than we ever could have expected. The doctors, nurses, medical students, chaplains, family life team, they give patients and their families everything they have and more. They showed up with things we didn’t know we needed. I don’t think I will ever forget the nurse who showed up for me while I held my baby and cried alone in a hospital room, she came with snacks and water and patted my back, without saying anything. She was there. The nurse who was there for me when I handed my daughter to the anesthesiologist for the first time. She knew. The chaplain who prayed with me. I will never forget these moments, and will forever be thankful for them. Because of them, we feel convicted to give back to Children’s and show up for them the way that they’ve showed up for Temen. This last Christmas we worked with Temen’s daycare to do a toy drive for Children’s. On Christmas Day, every child at both the Minneapolis and St. Paul Hospital had a gift to open. We hope to continue to give back financially and with gifts for the kids. I’m looking forward to a time when Temen can pick out gifts for the kids herself – I never want her to forget this part of her life.
It’s shown us who in our lives are worth investment.
People who show up. People who ask. That’s all we need. Those are the people who are worthy of our time and energy.
It’s made us resilient.
There is nothing quite like living with this “middle chronic illness” that will make you resilient. We have to adapt, we have to cope, we have to keep moving. For her and for us. Her “flare-ups” give us a real opportunity to spiral, to lose any hope for normalcy, and check out. But we cope, we accept where we’re at, we have our emotions but our emotions don’t have us, and we take the opportunity to flourish and handle this speed bump better than we did last time. We’re flexing that resiliency muscle.
This isn’t to say we don’t get down. It’s not to say I don’t cry or worry or panic, but I accept it all for what it is. I let myself have my feelings without them controlling me.
It taught us gratitude.
We are so thankful for the small things. Every month without an infection is noted. Any time we think she has a fever, but she doesn’t, we celebrate. (I mean, happy dance and tell T “You’re perfect!!!”) We celebrate the mundane. We notice the little things. The family walks, her relationship with Lola, every new word, it’s all worthy of our gratitude and celebration. Her illness has just highlighted it for us.
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So you see, I’m thankful. I’ve decided to look on the bright side, because this is our reality right now and there’s nothing I can do to change it. As small as it may be compared to others dealing with more serious illnesses and diseases, we could let this completely shatter us. We could sit back and let it destroy our spirits, our hope, and our lives. My belief system leads me to believe that there are actual forces hoping that we would do just that, give up, roll over, and break.
(I initially wrote this right before her last ultrasound. I was anxious and worried for what we’d be told. But instead of spinning, I decided to document how thankful I am. Take that.)
xxoo,
Samm
I Love you all so much! “Ampa”