Watching people come and then go home with their newborns has been very hard and now having to leave the hospital without my daughter has been even harder. No parent should ever have to leave the hospital without their child. It is so hard not to have a feeling of distance between us because of the isolation, separation, and visiting hours. Add to that our fear, anxiousness, nervousness and you have an emotional hot mess.
As parents, we want to be loving and nurturing Sydney, not subjecting her to painful tests. Having Sydney in NICU was not part of the dream I had envisioned, but I trust that God will even use the pain and torment I am feeling to better His kingdom. I have already been taking this opportunity to minister to other people who have children in the NICU. Some families have had their children in there since October and had birth weights of two pounds or less. There is such a mix of emotions I am feeling because I feel guilty there is nothing else I can do but make decisions that will hopefully help Sydney get better. Signing the consent to do the spinal tap was the saddest thing I have ever had to do and it was impossible to keep the tears from running down my face. This entire ordeal has created such a bond between us that is hard to even begin to describe. She is mine and I am hers and I would do anything for her and not being able to make her get better is such a powerless feeling.
As long as I stay focused on my God who is mighty to save, I keep it together, but when I don’t, my guilt turns into panic, anxiety, fear, denial, apathy, and loneliness. In these times, I must remind myself that at my weakest and most vulnerable, my Savior is at His strongest. It has definitely been an emotional roller coaster and I am doing the best I can to keep it together and to stay well informed on what is going on with her condition, while doing everything I can for my wife. It is an enormous burden to bear, but I know with Christ all things are possible and I trust in Him alone and I know He has an awesome future for this little angel filled with hope and blessings and this is just part of His master plan!