Saturday, February 22, 2014

How are you?

How are you? It's a question asked of me all the time. I'm fortunate enough that most are genuine and want to know how we are.

I’ve wondered so many times how to write this post. If I should write this post and if I should then what do I say? How do I encourage others to continue to adopt children with chronic needs and still be honest with those around me?

I’m not sure I have the answer to those questions. I’m not sure of most things these days. But I want to share with you my heart.

We adopted a little boy with Thalassemia, specifically beta major. It is listed as a chronic, life-threatening illness. It’s involved and complicated. Even with a biology background I get lost in the medical files and terms and medical trials and gene therapy.

I knew life would change. I knew that in my head, but it’s always different than living it day in and day out.  Let me be completely honest for a minute. It’s harder than I could have imagined to live this out in life. It’s beyond exhausting.

I’ve traded playdates for doctor’s appointments.
I’ve traded girl’s nights out for a good nights rest after a long day at the hospital.
I’ve traded my relaxing mornings or letting kids fend for themselves for getting up to make sure medicine is mixed properly, measured and taken in a timely manner.

Every  two weeks or so we sit in the hospital. This does not mean that I sit and crochet while the blood drips into my son’s veins and keeps him alive. It means I get up and get a slushy for the tenth time to keep him hydrated. It means I coax him to sleep and switch my Pandora to Chinese music to soothe him after the Benadryl gives him anxiety. I watch his big, scared eyes stare into me and I remind him that I will not leave him and he can fall asleep. It means that I wheel his IV cart into the bathroom with him and try not to die in the mess of cords while helping him since an entire arm is out of commission. It means I watch the movie Cars five times in one day.  It means I debate with doctors and nurses on how to treat this illness. It means I go home after 6-7 hours more tired than I can describe. And dinner still needs to be cooked and kids needs to go to bed.

We miss a lot more church these days. When your doctor says a simple virus may cause aplastic crisis you tend to stay home if you hear of colds flying around the kids at church.  You try not to worry when the kid behind you coughs in your face. 

Life changed faster than I thought it would. My family is different than the average family. Our needs are different.

I finally came through the fog of the adoption crisis, and the medical jargon. But I’m different. I feel the change. My life has been touched with the threat of the unknown. Friends talk to me about potty training and recipes and I think I tend to stare into the abyss trying to remember how to talk about normal things. How do I get my brain to stop computing and storing information about phenotyping and blood matching? How do I stop being the advocate, the momma bear, and go back to being the friend? I get lost in my roles.

I’ll never forget the day the Make-a-wish packet arrived. Life slammed me in the face. I was so happy for my son, but I held him closely that night and wiped silent tears with my sleeve. The seriousness wasn’t in my imagination. It was real. My boy was ill.

The day the doctor called us in to meet with us just to show us a chart of how ill my son is will be forever seared in my memory.

My kids are trying to understand that they will outlive their brother. My kids ask how long their brother will live. 

They are struggling to know how to talk to him appropriately about life in general.  Do they talk to him about having grandkids? When he says he’ll live to 100 they look at me with big eyes and I shake my head telling them to just let him talk. My oldest knows what it means that her brother was granted a wish. My youngest cries because he can’t have a wish. And I pray and thank God in my heart that he won’t. And I wonder is that selfish?

I am often asked what his life expectancy is. I’m a mother and I talk often about my son’s life expectancy. Let that soak in for a moment.  I talk about my son’s possible death frequently. I talk of possibilities and chances for life. Let that soak in.  After all at the end of the day I’m just a mom.

I say to them that some are living to 60 these days with a big smile on my face. I talk to them about the amazing advances being made.  I don’t mention that a 30 year old and a 40 year old in my circle just passed away.  I don’t mention that his medicine is currently not working. And then I go home and cry because I realize that if even he lives to 60 I’ll still be around.  I deal with the constant reality that I will more than likely bury my own son.  

Living with chronic illness means I laugh and I watch my son run and giggle and in the middle of the laugh my heart catches and I remember to hold these memories in my heart. I remember to thank God for today, for this carefree moment.

So, how am I? I'm different and that's okay. God called me to this road and we walk it with faith. Would I recommend this life? Absolutely. With every ounce of my being, I answer yes.
Maybe God won’t call you to it. Maybe He won’t ask this of you. Maybe He will ask you to travel a different road. But if this is the road He asks you to walk. Walk it, with great faith. Faith that knows God can move mountains. Faith that knows His way is best, always.

No regrets. After all I’m just a mother loving her son. Is it different because he is adopted?  No, no way, my heart hurts just as much. But he is my son and I have found a way to love this new way of life, because it brings me him.


  1. My heart hurts for you. The joy and the pain, the gratitude and the struggle against bitterness, the memories versus the anger and deep darkness waiting at each breath. Please know you are in my thoughts and prayers. Much love and prayer for you and your sweet family in your new normal.

  2. Love to you, Katie. What a gift for all of you that God has brought you together and is giving you the strength, day by day, to carry on and be the mommy that Simon needs. I ache for the weariness and sadness you feel and pray that things will turn a corner, the medicine will work, and there will be new medical advances, and that through it all, God will continue to knit your family together more and more tightly and weave the beauty through the pain.

  3. I have given this so much thought as we are adopting a child with Thal right now. I've wondered how long he will live and what that will mean for his future family. I can hope that changes in medicine will offer him better chances in the future, but I think about this.