The special needs aftermath of birth and diagnosis is the subject of guest blogger Brittany Miller‘s post today. She describes how she and her family came to terms with their third daughter’s special needs diagnosis, how they eventually found joy in in their sorrow.

Special Needs Aftermath: 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, admittedly you may get little spoiled and so many want to know about 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, and 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, and no, doctors, it is not because she is tired or swollen from birth. I have had children, I know what newborns are like. And nursing is not catching on, she seems confused or distressed. The nurse and lactation consultant keep reassuring me that eventually my little baby will catch on but a premonition in my mother heart knows something is different about this child. Well mother’s intuition is real, and a week later I find myself in a pediatric ophthalmologist’s hearing words like”

microphthalmia,
blindness,
possible implant,
neuro,
loss of function.

Not the joyful news we wanted to celebrate. Then six weeks later in the midst of the Christmas season, seizures begin.

ER,
children’s hospital,
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 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,

not to mention taking care of my other children and 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 is also glimmers of hope. This special child had changed everything, and we all have to adapt.

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 all 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, and one child with special needs and a life-threatening diagnosis, this is what I have learned.

Special Needs Aftermath Lesson One

Be honest. In a world where adults shoo real feelings and conversations under the table, keep it real. Your children trust you, look up to you, and times like these find it scary or uncertain. Of course you do not need to give them every grown up detail, but it is okay to 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 some trials, and that we are all in this together, happy or sad.

Special Needs Aftermath Lesson Two

Show them love and security. When life’s trials hit, we need to make sure the little ones in our charge know that they are still loved, even when the hardships are not about them. It is so easy for us to have tunnel vision and focus on the loved one needing the 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 take time to spend a few “unmedical” moments throughout my day with my older two. They needed that mommy time and our children all need a sense of normalcy when family life just isn’t.

Special Needs Aftermath Lesson Three

Let them see you cry. Mommies are people, with feelings, with limits, and a maturity is born when we let our children inside our shell, into our hearts. Obviously I am not suggesting we traumatize or kids, but it is okay to let them see that we are grieving, we are sad. We are human, have emotions, and need to release them. Make sure your kids see happy and sad tears. I know they are in there.

Special Needs Aftermath Lesson 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, better for what we have gone through. We 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. It would be unfair of them otherwise and going through the motions of typical family life has a way of healing, helping us deal with hard things. In the five years as my little Brooke’s mom, we have had so many fun happy family memories. We sneak them in during doctor’s appointments and hospital stays, but more importantly WE DO IT. And you know what, 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.

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, or 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.

~ Brit

How Do You Find Joy in the Special Needs Aftermath?

What have you learned in your own personal special needs aftermath? Where do you find joy amidst the sorrow? You’re invited to share your experience in the comment box.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.