On Finding Support

The blogging world is wide and amazing. When I received the diagnosis that my baby boy had Down syndrome, I turned to the internet, because I didn't know a single soul who had been through what I was going through.  Along the way, I've connected with many women...Mothers...who know my struggles because they have been there too. Because they have a child with Special Needs.  I asked a new friend, Tara, to share her experience as a Guest blogger on my site, and I am excited to share her story with you.  Without further ado...


How I Found Support and a Light at the End of the Tunnel
Before my son Carter was born I pretty much knew nothing about prematurity. I now feel like maybe I was living inside some kind of pregnancy bubble. I remember when we bought Carter’s car seat and I had reached the magical 24th week I made a comment that he could be born anytime because we had the car seat and were all ready for him. I never gave a second thought to everything that comes along with having a baby early, but I learned very quickly.

Carter was born at 29 weeks gestation and with his birth came so many new experiences, emotions, and worries. It was all foreign territory for me. I don’t directly know anyone who has had a premature baby so I felt lost with no one around who really knew what I was feeling. Many friends provided support for us. Some had stories of their own about being a premature infant themselves, or knowing someone else who had had a preemie. It did bring us some comfort knowing that all of their experiences had happy endings, but I was still left with a storm of emotions inside and no one who really understood.

A couple days after Carter was born I logged onto a website called The Bump that I had frequently visited throughout my pregnancy. They have so many specialized message boards, including one for parents of preemies. At first I stayed away from that message board. I didn’t want to read anything there because I just didn’t want to know too much about the rollercoaster ride we had just gotten on. I didn’t want to know what could happen to Carter. When I did start reading I found that all of those women had been through pretty much the same events and felt the same feelings that I was now feeling. I could “talk” to them using the “NICU language” I was learning and they knew exactly what I was talking about! Not only did they know, but their little ones had gone through the same things that Carter was going through.

Our NICU journey eventually came to an end and Carter came home. Only a couple weeks later he developed acid reflux. This was just the beginning of the issues he would have with eating. Little by little he got worse and will now only eat in his sleep. He has developed an oral aversion due to the pain of reflux and/or the inability to coordinate sucking, swallowing, and breathing. He has pretty much learned that it’s uncomfortable to eat and that he doesn’t have to, so he just won’t. Again, I felt like no one knew how I felt. No, I KNEW no one knew how I felt. Being at home all day with your little baby who won’t eat is not a fun experience. It’s 24/7 stress about how you’re going to get your baby to grow, and it seemed to be slowly consuming my life. I could go on and on about the thoughts and feelings and worries and crazy turns our life has taken due to this. But then we’d be here all day!

Then I found a message board on Babycenter called Reflux Rebel Refusers. These ladies are wonderful. I am still in awe of the fact that there are so many other moms out there who are going through the same thing. Oral aversion, again, was something I knew nothing about. Then, one day, I’m part of the club! It’s so great to be able to vent about all the frustrations and have someone say that they know what I mean because they’ve gone through it, or are currently going through it.

Without these two wonderful groups of women I’m convinced I would be in a padded cell right now! Although I have a great support system in real life, no one had been through any of this. No one truly knows what I feel. Even though knowing these other women doesn’t change anything that we’re going through, doesn’t necessarily make any of the stress and pain go away, it brings great comfort to know that I’m not alone. Other mothers have struggled with having a child in the NICU and having a child with an oral aversion, and they survived. Their babies survived, and have gotten better. There is hope, there is a light at the end of this dark tunnel that I sometimes feel as though I’ll be in forever. We still struggle with these issues, but just take one day at a time and know that someday it will be a part of the past.

So going forward in this journey of motherhood, I take great comfort in the fact that I now have my blog and am able to connect with even more mothers all over the country and even the world. After all, Carter is only nine months old and has already thrown a lot at me! I can only imagine what else he’ll come up with! But, no matter what, I know that I’ll find that family member, friend, blogger, or message board where SOMEONE can relate to me and help get me through.

- Tara

Three P’s in a Pod