My son was born by emergency c-section (his heart rate was in the 70s) pretty much as I walked into the hospital in labor.
After his chaotic delivery, the Dr let me know that his birth was one she would always remember, that the line of him being born alive or not making it through the birth was so thin that had we waited any longer to come in we would have lost him.
I’m so glad we came in when we did, despite having a huge argument right before about of all things, some relaxation music I wanted to bring with to keep things calm as I labored.
Calm and my son’s birth are definitly not synonomous.
When he was handed to me in the recovery room, he began choking. He was drinking formula to help his blood sugar, which was dangerously low, and as he looked at me in excited recognition (those seconds were beautiful) he turned blue, choked, and was grabbed from my arms.
Doors flung open and the nurse tending to me ran out with him. He was resucitated in the NICU and remained there.
It was chaotic, scary, and I instictively knew we were about to embark on a journey that would bring a new depth into our lives like nothing else could.
The next day a kindhearted cariologist came into my hospital room and drew us a picture (I later learned cardiologists are notrouious for drawing pictures :-)) The picture depicted the four things wrong with the way my son’s heart had formed, signifying the congential heart defect known as Tetraloy of Fallot, a condition requiring open heart surgery.
We were devastated and afraid. This was only our second day as parents and we had only even held our son for mere seconds.
I honestly wouldn’t have been able to pick him out of a line up of babies, our initial meeting was that brief.
And yet here we were, preparing our minds and hearts that our precious baby boy would be needing open heart surgery in the coming months.
It was overwhelming. So overwhelming.
When we let family and friends know, they were genuine in showing their concern, asked us questions and wanted to learn all that they could from us about what our son was facing – and I truly appreciated the support.
However, as I was struggling as a first time new mom, with a medically fragile child, answering the same questions over and over began to really take a toll on me. The more I talked about it, the more overwhelmed and fearful I became.
I grew weay, began to withdraw and was having a hard time articulating the effect continuing to to provide information was having on me.
Then one evening a good friend stopped by and we started talking about my son and his upcoming surgery.
As I was talking about it she didn’t ask questions.
She wasn’t curious about the condition or needing any information, she just listened.
And I found myself feeling refreshed and encouraged as I talked with her.
What was so different about my time spent with her?
When this particular friend learned that our son had a heart condition, she began researching and learning all about the condition herself.
By doing that, she unkowningly lifted the burden of information bearer off my shoulders.
She was able to help me process the magnitude of what our son was facing, dialogue with me about what I had learned (because she had read a lot of the same information), and most importantly, she was able to just listen to my worries and fears.
Did our other friends do anything wrong? Absolutely not! I want to be very clear on that.
I appreciated alll our friends and family showing their support and taking a very genuine interest in learning about the challenges we were suddenly facing.
This particular friend though, went above and beyond in a way that I didn’t even know I needed.
As soon as I learned what she had done, it meant the world to me.
Looking for a way to help a family member or friend who just found out their child has special needs?
For the parents of a child with special needs, especially when just learning about it themselves, the news of a child’s diagnosis is overwhelming. For some parents, like myself, to keep providing the same information over and over only adds to the overwhelmingness of it all.
A great way to be a support to a family member or friend in that position is to learn all you can about the diagnosis yourself. By learning about it yourself you will be able to provide a different level of support for your loved one.
If your family member or friend chooses to give you the information about it themselves, great! But if not, if its too much for them, you’ll be educated yourself and be able to provide the listening ear and support that they really need.
If you are the parent of a child with special needs and are feeling overwhelmed about keeping family and friends updated on how your son or daughter is doing, a caring bridge page, blog, or a private facebook page or group is a great way to keep your support system informed, ONLY if it doesn’t add more to your already full plate.
And if you are a family member or friend following along on a family’s medical journey, I encourage you to make every effort to learn what you can about any new procedures, tests, diagnosis, therapies or treatments the family is facing.
I guarantee you, it will mean the world to them!