My New Normal

The first 2 years after the birth of my daughter were extremely dark for me. I had moments of joy, but most of the time I was hurt, angry and jealous. I would see a mom and daughter in the store shopping together and start to cry because I could not take my daughter to the store with me. I would hear a mom complaining that her child is not walking yet and he/she is already 14 months. I would be filled with anger at this mom, how could she complain when my child will likely never walk. I would be hurt when my friends and family would leave me out of things since they knew I could not leave my daughter's side. Rather than letting me decline an invitation, no invitation was offered. I would hurt for my daughter. I wanted to give her the full life that I had spent 9 months imagining while I was pregnant. I would give up my ability to walk, talk, eat, breath if I could give it to her instead. She was so innocent and so pure, and yet she was being punished for no reason. I was angry at doctors, at God, at myself, I was angry and hurt all the time.

Around her second birthday we moved back to my hometown where I had family and more friends that I could lean on. We also finally got a regular scheduled nurse to start helping out. Eventually I was able to get out and do things for me. The darkness was starting to lift as I found bits of my old self shining through. Anytime I would tell my daughter's story (our story) it was as if I was living it all over again. I could hear the monitors in the NICU beeping, I could smell the alcohol wipes prepping for blood draws, I could taste the watered down fruit juice that I drank to try to produce more milk for pumping, I could hear the suction machines, the breathing of the ventilators, it was as if I were still sitting in the uncomfortable rocker next to her isolette in bay 8. I felt like I was going crazy. All of my friends and family wanted to hear the story, but I was not able to tell it without completely breaking down.

I somehow found my way to a local organization, Texas Parent to Parent. In my irrational state, I signed up to be a mentor to other moms. I was not qualified for this role, but I am so glad that I went to the training. As we went around the room each mom told her story and how they found their way to the group. I was one of the last to go. I sat and listened to each story and felt envious of each mom. I would give anything to have their problems. Their children were medically involved, but they could smile, they could breath, many could even walk and talk. Then it was my turn to share. As I had done a thousand times before, I tried to tell my story. I was a mess before I even got half way through. I could not hold back the tears and felt like a complete fool breaking down in front of everyone. I was here to be a mentor and as it turned out, I NEEDED a mentor.

At the Texas Parent to Parent training I learned about the Stages of Adaptation. I learned that my feelings of jealousy, anger, etc were all normal. I learned that what I needed to do was to grieve. Grieving did not make any sense at first. Why would I grieve, my child is alive? I realized with the help of these new mentors in my life that I am not grieving my living child, I need to grieve the life that I had imagined. The life I spent picturing for 9 months (or really for my entire childhood). The life I envisioned for my daughter, and for me as a mom, was very real. And that life is gone and needs to be grieved. My obsession with getting pregnant again, even though I knew I could not physically have another baby nor did I have the time, resources, etc for another baby, was normal. That was my subconscious way of trying to recreate the birth and early fantasies I had lost. Once I knew why I was feeling the way that I was, and I knew I was not crazy but just a MOM, it helped me a lot.

A year or so later I realized that there were reasons all of the memories were so vivid each time I told my story. I was suffering from PTSD. Just like the original idea of grief, PTSD also seemed completely out of place. PTSD was for soldiers in war, not for moms. As I learned more about PTSD I realized that it was in fact what I had. Many parents that go through a trauma like I had with their child (it does not have to be at birth- but often is) will be so scarred from that trauma that PTSD is very common. The same neuro receptors and chemicals are involved regardless of the nature of the trauma. I as a mom watching my child go through all that she as gone through, and going through many medical issues myself was traumatized. Much like a soldier that sees unimaginable sights at war, I saw unimaginable things in the NICU.

Many of us may need to see a psychologist or psychologist to help work through our feelings. Many of us may need chemical interventions to help get through this process as well (I do not mean to self medicate- I am referring to chemical interventions prescribed by and monitored by a licensed medical professional). There are some great resources to help find a good therapists in your area, and there are many that specialize in treating caregivers. Not only do they treat for PTSD, depression, anxiety, and the other things we often expect with extreme parenting, but they also treat things such as caregiver burnout, and grief at the many different stages. There is sometimes a stigma attached to seeing medical care for physiological issues, but if you need this care PLEASE call someone. There is no shame, and asking for help does not make you a bad parent.

Once I was able to work through my feelings and better understand what I was actually feeling I was able to get to a much better, much brighter place. I eventually even made it to the point where I can now be an effective mentor parent. I still have bad moments, days, weeks, but I am able to get through these dark places and back to the light much quicker now. It takes a lot of work and I rely heavily on my amazing support team (especially my husband). I have a new life now- a new normal. It's easy to get caught up in the things I wanted to do or can't do. When I start to go down this road sometimes I allow myself a little time to be sad, but ultimately I remind myself that each day with my daughter is a gift and regardless of what can't be done, there are SOOOO many things that CAN. We have learned to not sweat the little things; we have learned to live each day to the fullest; we have learned to celebrate EVERYTHING, and we have learned to ask for help. If you had asked me 10 years ago what I expected to be doing today I would never have guessed that this would be my life. Of course I would still trade everything if I could make my daughter healthy and to give her an easy life. That being said though, I am happy, I have found my joy and her name is Casey. Everything I do, I do for her.



I expect many of you reading this can relate to the feelings I describe. Please know that you are not alone. We are all in this together. Seek help, join support groups (like Mommies of Miracles) and allow yourself time to grieve. It's an amazing journey and rewarding in so many ways. There will be dark days, but you can do this!

The Emotional Side of Receiving a Diagnosis

No matter when you find out, hearing that your child has a medical problem is never easy. Some of us find out while the child is safe and snug in the womb, some of us find out shortly after birth, and some of us don't hear those words until our children are older. It doesn't matter when it happens, you feel a plethora of emotions ranging from guilt and sadness to a "we can beat this" attitude. Then there's the matter of the diagnosis. For some, such as those with a recognizable disorder, you get your answers pretty quickly. For others, such as those with rare disorders, the process of getting a diagnosis can take years.

Personally, it took two and a half years for us to get a diagnosis for Jaxson. I know that some of you have waited longer and some are still waiting for science to catch up with your child. In Jaxson's case, Kabuki Syndrome was found just over 30 years ago, so even though he has the diagnosis, there is still much to learn about the disorder and the problems that is causes. Kabuki is not the only disorder out there that there is little information on, so I'm sure there are others that fall in line with it. Over the last two and a half years, we handled what we could and prayed about the rest. When the call came with the diagnosis, I actually saw a spike in my anxiety and couldn't figure out why. Then it dawned on me. When you put a name to something, it becomes real. I could no longer pretend that it didn't exist. And that has had me reflecting on the last years and how unprepared I was for these emotions.

I am not your typical woman when it comes to emotions. Most of the time, I have no idea what I'm feeling, so trying to process everything that comes with having a special needs child has been a huge hurdle for me. I know I am not alone in this, and I am still on my journey of discovery and understanding. However, something changes in you when you have a child with special needs. For the last two and a half years, I have gone through the motions. I've taken Jaxson to therapy and specialist appointments, I've stayed with him in the hospital on more occasions than I can count for surgeries and illnesses, I've helped expand his skull, I've done everything that the doctors said we should do. I had no choice because we could only address the problem at hand and didn't have a big picture to look at. But in that sense, I also only had to deal with the day-to-day. I may have wanted to know what the future held, but I didn't and therefore it did not exist for me.



So I wanted to share a few of the things I felt that I was unprepared for, that way maybe those of you who have not received a diagnosis can be a little better prepared than I was.

The first thing I felt was relief. Relief that this part of our journey was over, that we finally had an answer. I felt relieved that I finally had a place to turn with questions, I could finally connect with people who knew exactly what I was going through. I was free to join groups on Facebook where I could find support for everything versus just one issue. I was relieved I could finally do research on Jaxson's issues and maybe find some answers. That was a huge weight lifted!

Then I felt overwhelmed and anxious. Overwhelmed because I could no longer just go through the motions. I had to research this diagnosis, find out everything I could and learn as much as I could as fast as I could. I'm still in that process, although my brain has calmed down. I was anxious to find out if there were other families in my area with this disorder, anxious to see how Jaxson compared to other kids with Kabuki Syndrome.

There was never a sadness when I learned the diagnosis. I know that some people will experience sadness and devastation with a diagnosis because of the implications on their child's life. Thankfully, Kabuki has a normal life expectancy, and that puts us back to feeling relieved.

The next two things I felt were readiness and frustration. It seems weird to put those two together, but that's how they came. After sorting through being overwhelmed and anxious, I was ready. Ready to tackle this syndrome head on, learn everything I could. And that's when the frustration came. Kabuki was only discovered in 1981, which is not a long time ago in the medical world. So finding information on Kabuki beyond what's on the NIH and NORD websites was not easy. There is one main foundation and about five websites housed in different countries for KS. There is still much to be learned by doctors on this disorder, so those of us who deal with it get to be guinea pigs for the time being. There are plenty of disorders that have been discovered even more recently than that, so frustration can play a huge role in learning a diagnosis.

But here's the thing to remember above all else: Generally speaking, the course of action and plan for your child will likely not change much once a diagnosis is received. Putting a name to something gives doctors a better idea of what to expect with various things, but treatment plans like therapies and such are not going to change. For us, Jax is going to be tested for a few things and go to the sleep clinic, but that's just for informational purposes. Others of you will have similar experiences where a diagnosis is received and you need to check for autoimmune disorders, watch for seizures in case that's part of it, and make sure there are no additional clinical diagnoses that would change a treatment plan. I can assure you, there will be a few of you who have drastic changes come when you receive a diagnosis, but most of the time our doctors have a good idea of what needs to happen even if it doesn't have a name.

So prepare yourself for when the call comes or when the doctor decides to put a name to what is happening with your child. You may feel more emotions than I can put my finger on, but definitely know that you could feel the same things even in a different order. Putting all of this together can be very overwhelming, so don't be afraid to lean on your fellow MOMs. We get it! For those of you who have received a diagnosis, congratulations! It's a good feeling to have a direction. For those of you still waiting, keep doing what you're doing. There are rapid advancements in medical science and technology, and science will catch up with you. It's a rough road in of itself and I hope this helps you prepare for what you might feel when you do finally get the call.

***Note for MOM- Whether getting your initial diagnosis, having a child with medical needs that are not yet diagnosed, or adding a new complication to an existing long list, there are emotions that all of us go through. This is often referred to as Stages of Adaptation. As we cycle through the stages we will learn to move through the darker stages quicker, and more productively. It is a constant cycle though. For more on the Stages of Adaptation, please check out this great document. You can find this and many more helpful article on our Hope page.