Just Give It Time

For us, our official diagnosis didn’t come until our daughter was one. But we knew our daughter would have special needs during the first few weeks of her life. At two weeks old, our daughter was admitted to our local children’s hospital for bacterial meningitis. Although, our amazing doctors were able to save her life, she did not emerge from her battle unharmed. A MRI revealed that she suffered significant brain damage.  Significant. Brain. Damage. Those are three words no parent ever wants to hear. During and after her month-long hospital stay, we met with many doctors. You could tell most did not think our daughter’s ultimate prognosis looked too good, although none would come right out and say it.  No one could say how delayed she would be.  No one knew if she would ever walk or talk. No one had answers. And even her neurologist would not give her an official diagnosis until she was older, but her doctor did warn us one was coming. All we were told consistently was that a child’s brain is plastic at that age which meant her brain could possibly do some remapping over time.

When it finally came, Cerebral Palsy was the official diagnosis and other diagnoses soon followed. Cortical visual impairment. Infantile spasms. Febrile seizures. Epilepsy. Global developmental delay.  At one point we couldn’t seem to get a diagnosis and then once we did, they wouldn’t stop. There is really only one word to describe learning to navigate a special needs diagnosis, overwhelming. There are so many questions once you final have an “answer.” Where do we start? Who do you talk to? What do we do now? It this life long? Will she improve? The list goes on and on.  

Admittedly, at first it was a lonelily journey.  All of your friends had “normal” children. It felt like we no longer knew how to talk them and they didn’t have a clue what to say to us. I shut down all social media for two years because it was too hard seeing all my friends and their children lead regular lives when our lives just entailed doctors’ visits, medications, emergency rooms, EEGs, research, and therapy.  

In the early months, before we even had our official diagnosis, I consulted doctor google. My first advice to new parents navigating the special need world is not to go searching for answers on the internet. It is information overload, some good and some bad, some accurate and some not. What I found myself doing was reading a positive story and holding on to hope that would be our daughter or reading a worst-case scenario and praying like crazy that was not our journey.  What the last three years of being immersed in a special needs life has taught me (that the internet never did) is that each special-needs child is different. Even if they have the same diagnosis, there are different scales and degrees of severity. Children also react differently to treatments and therapies. You cannot compare your child to other children. It’s not fair to you. And it’s not fair to your child. Many doctors told us that our daughter will show us what she is going to do in time. That was not the answer we wanted three years ago, but it is the most accurate answer they could give because that is exactly what our daughter has done. We can see her progress, and it seems huge to us even if others would overlook it.

I also tell new parents that it takes time. We did not have things figured out in the first year, and even now, there are days that we are still learning.  But now, things make a lot more sense to us, and we can see that our special-needs child is what our life needed all along. That is not something you know immediately. As most parents do, we had things planned out for our child, even before she was ever conceived. We envisioned this amazing life for her and the way we planned to parent. But her diagnosis changed that life. Early on it is hard to see the new possibilities, mostly because you are just trying to survive. But with a little time, we can now picture her new future, and our new future with her. And now we are just as excited about that life as we were about the old one we used to envision.  It is just as good even if it is different.

Our sweet girl is already doing more than most thought she would. She is starting to take steps with a gait trainer unassisted, and she has a speech device to help her communicate that she loves. Her verbal skills are also improving and she has about five real words. She is absolutely pure love and she loves to be around people. Her smile alone lights up a room. I look forward to coming home to her every night, and I miss her like crazy when we leave her for any period of time. That’s what parenting is all about isn’t it?

As one special needs parent to another, these are a few more tidbits of advice that I learned the hard way navigating this new life style:

(1)  As soon as you find out your special needs diagnosis, seek out what resources are close to you. Does your state or community have any early intervention programs? If so, get your child involved as early as possible because these people know your local community. Their knowledge could be very valuable to you and your family.

(2)  Give yourself a little grace every day. The down side of raising a special needs child is that you never feel like you do enough. There are days I ask myself if we slacked off on therapy or are we pushing our daughter enough. And these things are important. But what is more important are the memories you make with your family in this short time window we have. It is okay not to be perfect every day. It’s even okay not to be perfect any day.

(3)  Don’t be afraid of going out in public. If you child is healthy enough, take them with you wherever you go. Sure, some people look at you, but most are just curious and don’t understand. Embrace questions as an opportunity to educate others. Be proud of your family regardless of what special needs your child may have. Other families have their own issues too. You don’t have to hide.

(4)  There will be bad days, but there will be great days too. Stop long enough in the moment to enjoy those great days and celebrate the victories.  It makes the bad days much more manageable.

The last thing I tell parents is to grieve the child you lost and be thankful for the child you still have. I know this sounds so harsh, and if you are not the parent of a special needs child, this may sound terrible to you. It was told to us by a doctor right after we received our daughter’s MRI results. At the time, I couldn’t understand what it meant or even how a doctor could tell us that. Our daughter was laying right there in the hospital bed, alive. But now I get it, and that doctor was right. As I said before, we had made life plans with our child in mind. And that child we had envisioned no longer existed. As the days and weeks passed on, it honestly did feel like we lost a child, like we were robbed an opportunity to parent the way we had always wanted. And we grieved. But that feeling, I can promise you will pass, and a new picture will emerge. Your special needs child will amaze you in way no “normal” child ever could. Your special needs child will give your life meaning and joy that you never could have imagined.  Just give it time.  

Published by Firefly Blog on September 6, 2018: https://www.fireflyfriends.com/us/blog/author/lindsey-johnson/