This week, my son and I have been working on re-landscaping our front yard. We ripped out old rock beds and weeds, and restored our deck back to its original glory. This has been no small feat, but the results have been miraculous. The deck had not been stained in more than 4 years, it was quite weathered and worn. As we were powerwashing, cleaning, and sanding the deck in preparation for the stain, I got to thinking that I feel a lot like this deck. The last two years have left me weathered and worn out.
The last time I posted anything COVID had only been around for a few months. However, the world was already feeling the divisiveness that it ushered in. The pandemic was a far bigger concern to a parent of children with chronic health conditions than it was for the general population. It really changed the landscape of our lives. Some of the changes were wonderful. I went back to college full time to pursue a dream I had carried with me for over a decade. Unfortunately, some changes were heart wrenching and left me with immense grief. I know I am not alone in this, but it has been a very lonely period in my life.
On October 17th, 2021 our family was blindsided by a medical crisis that brought us to our knees. Our 14 year old daughter who has chronic lung issues went in for a routine lung biopsy on October 13th. We were told it would be one or two days in the hospital. Instead, each day her respiratory support needs increased until she went into full respiratory arrest. I am not sure I ever realized how much my own ability to breathe was affected by my children’s ability to breathe until the moment she stopped breathing. The air was sucked from my lungs as well, and nine months later I feel like I am just starting to catch my breath.
We could not have been in a better place at that moment. The ECMO team was right down the hall taking another child off ECMO at the exact minute she suddenly needed it. They went to work on her and literally saved her life. She is here today thanks to a God who hears our prayers and the hands that he had prepared to step in when she needed them.
The next 50 days were the longest of our lives. She needed a procedure that only Children’s Hospital of Philadelphia could provide, so once she was stable enough we made the trek out there so she could have a life changing procedure. Today her lungs are in better shape than the day she walked into the hospital for the lung biospy. Her overall recovery though has been slow. She is still regaining strength and needs to rest a LOT!
I have found that trying to find normal again has been extremely difficult. I desperately do not want our life to be defined by the trauma we have experienced in the last 9 months, but the truth is that it changed us. Even though she is alive and in the next room, I feel like my heart is full of grief that I do not know what to do with. Going through this experience during COVID made an unimaginable situation a THOUSAND times worse. Due to visitor restrictions we were forced to walk through it alone, with the exception of a couple faithful friends that would come with supplies and hugs once a week. The family was called in to say goodbye and were able to visit her (and us) until they thought she may actually have a chance of survival and then it was like no way, keep all of your germs away!!! We hugged more moms and dads of other children in the PICU than we did our children at home. It was so hard for us to be away from our kids and family and equally as hard for them not to be able to see us. I came home only three times in 50 days. We saw the decorations in the hospital change from Halloween to Thanksgiving to Christmas, and Valentines day before we were really home for an extended amount of time. The faces of the doctors, nurses and CSAs at Childrens became like family to us. We looked forward to the day when we could finally be home but even that was stressful as she had so many machines and medical needs that exhaustion was a constant companion. It was hard to think about what came next. Now I feel like we are living in the “then what” stage. What comes next? How do we just get back to normal? Will we ever feel “normal” again or will I always feel a little broken?
The hardest thing for me now is that when I crave normal, I go all the way back to what normal was before 2020 (our friends, our church, our life before this big weight took up residence in my heart). Like the layers of deck that we had to wash, strip and sand away to get to the beautiful wood underneath, to find anything that resembles life as we knew it I may have to endure a lot of sanding. That is neither pleasant nor possible. We cannot really have our pre-pandemic, pre-ECMO lives back. But I pray that as the layers of pain and trauma get stripped away, God will reveal a new normal for the new people we have become over the last two years. Restoration may look more like revival than replication. I just know I am ready!
“And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.” 1 Peter 5:10
