It’s ok. I know the news can be shocking.
I know you might not know what to say.
I know what you must be thinking… only because we thought it too.
What started out as a letter telling you what NOT to say, turned into a letter about why it’s ok to say exactly how you feel.
I know there are many parents that get offended when you say “I am sorry” for their child’s diagnosis. Me, sometimes, being one of them. Depending on my mood, and if my toddler is cooperating that day. For the most part, I really don’t mind because I can understand where you are coming from. I have seen post after post with directions on things to say to parents of special-needs kids. Posts on things not to say. When to say them. Who to say them to. What color to wear when you talk to them… ok so I haven’t seen that one, but you get the idea. If I’m going to be completely honest here, I was sorry at first too. I was sorry to hear the news from the doctors. I was sorry that our little girl spent the first 35 days of her life in a sterile hospital. I was sorry she was being fed from a tube. I was sorry that she had to be a fighter. I was sorry that I thought I was to blame for this happening to her.
So why can’t you be sorry as well?
No parent wants to hear another child has been born into less-than-perfect circumstances. I think when we hear something has happened we begin to empathize with them and we put ourselves in their shoes. It’s only natural. So we may say things that would help us. Or we may not even say anything at all. We all cope and process so differently. In cases like getting life-changing news there, unfortunately, is not one response that fits all. There are no rules. And until you are in a situation like this you have no clue how you would handle it. So we can only imagine. And that is why it’s ok to say how you feel. It’s ok to ask questions. It’s ok to be sorry.
But here’s why you don’t need to be sorry…for long.
She is alive! She is happy. She is so LOVED. She is thriving and growing and learning! She made it through a very troubled pregnancy when we were told she may not. She made it through that 35 day NICU stay. She survived a choking episode when she was learning how to eat. She made it to today. So now, we wake up and literally celebrate each and every single day. Her being with us is a celebration. She is our princess. She will progress and she will be ok. More than OK.
Most importantly, WE are ok.
So now what happens? Well, physical therapy. And more physical therapy… We plan to take full advantage of this very early diagnosis and try to encourage as much neuroplasticity as possible! That is, we encourage the brain to create new pathways that may have been originally been lost from a brain injury like Cerebral Palsy. Did you know the brain can do that?!? The brain can literally “rewire” itself in certain circumstances. It’s absolutely amazing. Hence, the extensive daily physical therapy. It, of course, doesn’t happen overnight unfortunately. It will take hard work from Ashlynn -repetition and patience – but it will happen.
Cerebral Palsy is a blanket term. Each case is as unique as the children and adults who have had this brain injury. It most likely happens while a baby is in the womb, as was Ashlynn’s case. It is the result of damage to the developing brain. There are several possible causes. We have been asked many times if we know what caused this for Ashlynn. The answer? Maybe?? It can manifest as “barely noticeable” to “extreme disability.” It doesn’t progress, but can change. It can effect one arm or leg, to both arms and/ or both legs. And, as I have learned, there is no “look” to CP. Someone with CP may be walking right next to you, down the street, and you would never know! “But, she looks so normal!” That’s another one of my favorites…It’s ok if you have said that. I think so too 😉
Ashlynn is still very young, so we don’t know exactly where she falls on the CP spectrum. So the plan for now? We put our heads down and work, work, work, work, work! (cue Rihanna). We celebrate the small victories and continue to hope and pray for the big ones! We want nothing more for you all to be a part of that! It’s so much more fun to celebrate than to carry the weight of sorrow.
So back to what I was saying before…maybe knowing what we know will ease your minds a little bit. And after processing the initial shock of the news, I hope that you see you don’t need to be sorry for her or us. But instead offer your support and encouragement. For us, there is nothing wrong that you can say. We just love to know that you care enough to say something. Trust me when I say I have said enough awkward things in my life to write a book! And for those of you who personally know my husband…. Well…. Lol. At least he means well! (I’m kidding, Christopher! I love you!) This is a journey and there is no map on how to navigate it. We will all learn as we go, together. So it’s OK to say how you feel and ask the questions you may have. We are here for you, as you have been there for us.
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