I have had a couple of conversations tonight that have reminded of all the changes in our lives the past year. A year ago I was overwhelmed, fearful, sad, angry and completely heartbroken that my two sweet babies had selective IgA deficiency. Add into that mix the penicillin allergy, food allergies, random crazy allergies and of course the asthma. It was insane and I had 50 million questions. How we were going to do this? What did this all mean exactly? Could my kids be happy and healthy with this? How do I help them, support them or parent them? What do I need to do so this doesn't define them? Are they going to be sick all the time? Can they die from an infection? How sick can they get? Do I pull them closer or let them go? How do I protect them from a world filled with germs?.....
Those are only a sampling of the things that flew through my mind at any given moment. I spent so many days sick to my stomach and with tears in my eyes. I beat myself up for mistakes or allowing myself to feel bad. There were many more people who had it worse or whose kids were much sicker. I should suck it up and find my silver lining. I read everything and searched for all the answers I could. I drove our immunologist crazy with all my questions and fears. I was my kids' advocate and there was no way in hell I was going to let them down.
I was listening to a friend share an experience tonight and it took me right back to that place. In those moments I was determined to find all the information and make it okay for Maggie and Ricks. I was spinning the wheels to make sure I did it all and perfectly. My kids now had a chronic condition which would affect their whole lives. They weren't just sick for a day, a week or a winter. I couldn't keep them home for a time until the germs passed. I had to learn and teach them how to exist in the world. I was determined and stubborn.
Within a couple months I burned out and broke down. I was doing all the right things and my kids were thriving. We had our infections, etc. but overall it was better than expected. The doctor even gave me a pat on the back for how well they were doing. The only problem is I hadn't grieved for the situation that had thrust its way into our lives. Maybe I am a bit crazy, dramatic or emotional. Or maybe it is just how I had to process the whole thing. In the end, I had to take time out to allow myself to walk through the stages of grief.
I started to take this walk. I was angry and screamed in a journal how it sucked that my kids had to bear this burden. I cried in the tub when the sadness took over. I bargained with God that I would do anything for this not to be the reality. I even denied that this condition was that bad or serious. I told myself that it was pretty common, others were sicker and so it shouldn't be that big a deal. My faith held me strong and gave me hope. No matter how I felt I always came back to my foundation of silver linings and strength.
Now to my second conversation, I talked tonight online to a friend I met in a support group room. This woman is someone who before January I probably wouldn't mix with and might have even judged. But she has become one of my strongest allies in this war with PI. I look forward to "talking" to her and search her out for wisdom and support. When she comments or "likes" my posts, it warms my heart b/c I can feel her reach out over the computer.
Tonight we were discussing what I just shared about my beginnings and where I am now. PI is truly becoming just a part of who this family is. We can't run from it or deny it. We have embraced the deficiency and all that comes with it. There are moments I am still angry and moments that break my heart more than I ever thought it could break. But there are bright shining moments like Maggie sharing with her class about PI and being highlighted in the PI magazine. I am so grateful for the friendships I have been blessed with and the deepening of my faith. During my conversation with my online friend, I realized that one of the biggest blessings that has happened is my walk of grief has turned into a journey of self-discovery. It has opened windows, closed some doors and truly taught me about who I am at the core. I believe that I have changed from the bottom of my soul in so many ways. This has rocked some relationships in my life. It has changed them for good and bad. But in the end, PI has become not the curse I felt a year ago but a blessing that sometimes still breaks my heart and can always scare the heck out of me.
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