Guest Post – from “Brookie the Brave”
Joy Amidst sorrow
After months of waiting, she is finally here. The beautiful little bundle of pink bliss I carried for 9 months is now in my arms, and she is wonderful. Pregnancy has a way of seeming like one long drawn out party. Everyone is excited for you, and admittedly you may get little spoiled. So many people want to know what is going on in that little party in your tummy. Sure there are times of discomfort, even sickness. Yet it passes, and you do not care, because enduring this means a little life is coming.
Then birth happens, and the hectic blur of the aftermath – happy tears, family visits, introducing baby to her siblings, doctor and nurse check-ins, and monitoring. Then at night, when the world is fast asleep, you finally have a moment alone with this little person you love so much and have dreamed of for the past year. She is here; she is beautiful. Life seems perfect.
Wait, what seems different about her? Why is her right eye not opening? Her left eye is opening. No doctor, it is not because she is tired or swollen from birth. I have had children before, and I know what newborns act like. And nursing is not catching on; she seems confused or distressed. Even though the nurse and lactation consultant keep reassuring me that eventually my little baby will catch on, a premonition in my mother heart knows that something is different about this child.
Mother’s intuition is real, and a week later I find myself in a pediatric ophthalmologist’s office, hearing words like microthalmia, blindness, a possible implant, neuro, and loss of function. Not the joyful news we wanted to celebrate. Six weeks later in the midst of the Christmas season, seizures begin, ER visits, the children’s hospital, a new dreaded diagnosis, lots of tears, and praying for acceptance. All of this seems like a bad dream, and somehow we try and look for the sunlight amidst the weeks and weeks of rain.
A new life is here, not just a new baby girl, but a new life of doctor’s appointments, every specialist under the sun, medications, seizures, more seizures, missed milestones, and not to mention taking care of my other children while trying to explain why our world has been turned upside down. Everything seems ruined, but at the same time this little girl is so sweet and wonderful that everything seems more special. It is a hard, difficult time, but among this stress there are also glimmers of hope. This special child has changed everything, and we all have to adapt.
As a mother, you feel like time is whisking by. You hardly have time to recover from pregnancy and delivery (and a C section at that.) In all of this stress and focus on your youngest, you still have to explain this to bright-eyed big sisters. And it is hard.
How do you talk to your children, especially young children, when the trials of life come up?
None of us go unchastised, we all have difficult tribulations that come in many forms, and we have to find a way to deal with them without confusing our children or instilling fear. How do we talk to them and still maintain their childhood innocence and sense of security? As a mother of three girls, with one a special needs child with life threatening diagnosis, this is what I have learned.
One, be honest.
In a world where adults shove real feelings and conversations under the table, keep it real. Your children trust you and look up to you. Times like these are scary or uncertain. You do not need to give them every grown-up detail, but let them know that things are not perfect right now, and that it may be hard, but we are hopeful. I have always shared with my girls the truth, in an age appropriate way. They need to know that our family can withstand trials, and that we are all in this together, happy or sad.
Two, show them love and security.
When life’s trials hit us, and they will, we need to make sure our little ones know that they are still loved, even when the hardships are not about them. It is so easy to have tunnel vision and focus on the family member needing support right now, that we may unknowingly neglect the siblings on the sidelines. No matter how exhausting those early days of epilepsy and exhaustion were, I made myself spend a few “unmedical” moments throughout the day with my older two children. They needed that mommy time. Children all need a sense of normalcy when family life just isn’t normal.
Three, don’t be afraid to let them see you cry.
Mommy is a person, with feelings and limits. Maturity is developed when we let our children inside our shell and into our hearts. Obviously I am not suggesting we traumatize or kids, but it is okay to let them see that we are grieving, and we are sad. We are human. We have emotions. We need to release them. Make sure your kids see happy and sad tears. I know they are in there.
Four, maintain joy.
We all will have times where our limits our maxed out, where it seems like the sun will never shine again, and our hearts just cannot take any more beating. But life has a way of working out, even when sad times happen. We can look back and know that we are greater and better for what we have gone through. Mothers have pretty good track records for getting through bad days.
It is vital that we make sure to still celebrate life, have fun, and do normal things with our children. Going through the motions of typical family life has a way of healing and helping us deal with hard things. In my five years as little Brooke’s mom, we have had so many fun and happy family memories. We might sneak them in during doctor’s appointments and hospital stays, but most importantly WE DO IT. And now, my broken heart from those early newborn days is healed. Together, along with my children and husband, we have overcome the aftermath, and now we are stronger together.
Dear friends and fellow moms, we can talk to our children about life’s sorrows. We can find a way to relate to them, show them we are human, and teach them how to deal with sadness. Thankfully, the storms do pass, we adapt to the turbulent times, and we can still have a happy life and childhood for all of our children. It is possible. I know it, and I am thankful my girls are learning a little maturity along the way.
—-My Two Cents—-
Young children may need you to explain a trial using toys; “play” is their natural language. If they seem confused at your words, pull out their stuffed animals and talk about how this teddy bears’ eyes work differently. Or talk about how one doll walks differently than the other dolls. You could even buy a special toy to represent a family member who has medical issues: a tiny dinosaur could represent a pre-mature sibling. You can be creative and still be honest about the difficulties the “toy” is facing. This will help your child learn via a metaphor that is easier for his/her young mind to comprehend.
During one-on-one time, you can also discuss their emotions. Drawing pictures or playing with toys will give you an insight into what your children are thinking. Are they drawing happy pictures? Are they drawing fearful pictures? Use your bonding time to reassure them of your love.