It’s no secret that my daughters declined health has been the cause of a great sadness in my life, having a child with special needs is HARD. I try to be strong, to keep my self together so I can balance my life but recently I began to realize fear had begun to consume me.
This past week Sophie began showing signs that her sinus infection was getting into her lungs; she woke up one day last week burning up with 103 fever and completely limp. I stripped her down to her diaper and took her out to the living room where the fan was running. She was coughing and fighting the need to vomit the phlegm that was rising up from her lungs. It took about an hour but the fever broke. When I got her to see the doctor my fears were confirmed, her lungs did not sound good, once again the onset of pneumonia. She was treated with the usual, rocephin injections for several days, steroids and follow-up antibiotics. She will see her ENT this week to evaluate if she needs to be put back on the levaquin.
During the visit with our pediatrician Dr. Nieves, I could not hold back my tears; my fear has begun to ger the better of me . And I asked her a question I already know the answer to, I asked her, “if now that we know why Sophie’s body does not filter out bacteria (PCD) and her immune system continues to be compromised are the risks of losing her greater now?”. She just hugged me.
Dr. Nieves went back in time and spoke about Sophie’s first two years of life, all the infections and moments with difficult decisions. Then she told me something I never knew from her, she told me that she did not think that Sophie would survive this long. Watching such a small human being overcoming so much sickness is only something you see by the Grace of God. That a child could live through what Sophie has lived through and is still here to see another day is truly a miracle. Sophie is our miracle.
She then began to tell me that when God is ready to take Sophie he will take her whether she is sick or healthy.; that Sophie is only borrowed. And if it happens and God decides to take her that I must let go and know that I did everything I could to give her the best quality of life possible. Dr. Nieves believes there is a deeper purpose for Sophie’s existence and I also believe that.
Dr. Nieves has been the only doctor who could be brutally honest with me but in a comforting way. Maybe it’s the love we share for my girl that unites us. Maybe Sophie has just touched her in a deeper way than I understand but for what ever the reason I am grateful to have Dr. Nieves in our lives.
Lately, the fear of losing Sophie has left me emotional scared. I can’t talk about Sophie’s health without breaking down. There are triggers everywhere. I’ve allowed the fears to consume me so much that I am not enjoying my family, my daughter or my life. That has to change just as Dr. Nieves told me…she said “you must let go of this fear or you will miss out on all the wonderful moments you have with Sophie right now”. And she is right.
I must face my truth. I have a child who is sick. I have a child who can be taken from me at any time. I must move forward and continue to live without thinking about it every second of everyday. The time we have now is what matters. As Dr. Nieves said, “She could live for five more years or forty but only God knows; the important thing is to enjoy every moment we have with her”.