When we were blessed with our baby boy, our life took on a new direction that changed us forever. Most times infinitely better…but sometimes heartbreakingly worse. In those times we are lost, and we cannot control our journey. It’s hard to ask for help, it’s hard to tell others how we feel, it’s hard to tell our wonderful friends and family how lost we are.
Words do not come easily. Words cannot ever describe the heartache we go through every single time we have to ring emergency services and every single hospital admission we face with our baby Einstein. We stay positive and calm for our children, our baby boy, and ourselves, but the fear of realistic outcomes is always there.
How do we tell our loved ones or even ourselves?
Our thoughts shout at us, “Is this going to be the last time our baby boy is home? Have we already had the last time we hear his giggles, the last time we have seen his smile, or felt his scrumptious cuddles? Has he already been to school for the last time, have we already given him his last bath, have we already read him his last story? Is this going to be the time no matter what we do, we can’t save him?”
All our memories of previous experiences come flooding back, and the thoughts of all the possible scenarios come crashing in. Knots so big and tangled blocking our throats, crushing our chests. Is this time going to be the last time?
We hold all this back, we stay calm on the outside, often numb or screaming on the inside. We have to be the “experts” in his medical needs; we have to pass on all the necessary vast amounts of information the professionals need to help him. We have to practically help all the amazing paramedics, consultants, and nurses to medically support him, and we have to help to hold him down whilst they painfully poke and prod our baby necessarily.
We do this whilst also trying to reassure him everything will be OK. He looks at us crying and asking us to save him, to cuddle him, to make everything better, to take him home, to stop it hurting, to save him. We can’t, we must use our heads, we must medically support his breathing and airway with ventilation, oxygen, suctioning…the list goes on. We must monitor and support his potassium levels so he doesn’t go into cardiac arrest; we must listen to all the alarms screaming at us telling us he needs help. We know. We are trying our best.
We do all this and much more every single time. We do all this because he needs us, too. We do this because there is no one else here trained to. We do this because we love him.
BUT then the moment comes — OMG that moment — that time we have been so desperately waiting for. It may have taken hours or days or weeks, but it’s here. The time that is indescribable by words in this world. Absolutely nothing can compare to it; it’s the pure joy of that elusive corner being turned. The moment you know everything in the world is OK, because your children are OK. The moment your heart soars seeing your baby you adore and for whom you would give your life.
He’s smiling at us once more happily, lighting up our world in only the way he does. He’s going to be fine. The medicines are working their incredible magic again. He’s not better, but that defining moment is here — he’s going to be!
We know we are so lucky to be the parents cuddling their baby boy still, and that we will never take for granted.
Life with our baby boy is a rollercoaster, but it’s our rollercoaster and we never ever want to get off it.
Normal life will once more resume — fun, giggles, cuddles, and good times — until next time. But we don’t think about that…this TIME IS ALL. Please celebrate our good times with us and hug me tightly through the bad times.