While Hailey works hard every day to overcome some of her biggest obstacles, she is not the only one affected by her diagnosis. It has been a journey for all of us.
We take the time to make sure that Noah, at only four years old, understands that his sister needs certain things, but we also want to make sure that his wants and needs are also seen and heard.
Last week, Hailey and I received some unsettling and somewhat inconclusive news at her neurology appointment. Her neurologist wanted a well-known and respected neurosurgeon to take a look at her MRI to see if he agreed that there was possible pressure on her orbital nerve, which could lead to blindness.
The neurosurgeon referred us for a second opinion with another ophthalmologist, who too, seemed unsure after examining her eyes. She was not one hundred percent sure, so she referred to her partner to also take a look at Hailey’s eyes. A definitive answer was all I was hoping for, and that, I did not receive.
After five doctors had conferred, it was determined that we would come back in two weeks, and the neurosurgeon would then make a decision about whether or not a shunt (the surgical placement of a medical device in her head) would be needed.
This appointment was deemed an “emergency visit” the day after her neurology appointment. That term alone, shattered me.
It was a Friday when all of this occurred….and it was supposed to be a “Noah and Mommy Day” as he coined it.
But things happened so quickly. I had to get Noah to daycare and pick up Hailey.
My heart broke because I could see the disappointment in Noah’s eyes when I told him that we would have to pick a different day because plans changed.
Life is unpredictable in its own right, but it is often the smallest of moments that impact us the most. Noah, this little boy with such an awareness for others around him, cried for a few minutes, expressed his disappointment, but then he was able to put aside his own emotions. I was in awe of how nicely he handled himself.
When I dropped him off, I got in the car and instantly bawled like a baby. I know it wasn’t just because the plans changed in an instant, but it was one of those moments when everything kind of crashes down on you.
Although the moment was directed towards the uncertainty about Hailey and a possible procedure, it was also focused wholeheartedly on my son. He too, is affected by a rare disease. Although it is not his direct fight, it is something that he needs to learn about and also navigate.
And as a mom, I could not be prouder of my son. Sometimes it is easy to forget that because he is older, and seemingly understands a lot more than we expect, he too feels the effects of living with a rare disease and everything that goes with it.
He is such a sweet boy! I鈥檓 so proud of you Noah! 馃槝鉂わ笍
Proud of Noah for being such an awesome big brother! So sorry all of you are going through this, especially Hailey who doesn’t really understand all of this because she’s so young. When one person has special needs the whole family is affected in many ways. It’s good that you set aside time for Noah, even if schedules have to be flipped to accommodate Hailey’s needs. Even under the best of situations every child deserves parent’s full attention, and in today’s world, that’s a feat in itself! Stick together and stay strong.