Thursday, October 31, 2013

Why I'm doing this

Recently I was fortunate enough to guest post on for a special needs spotlight, something the author does every Friday. When I sent her my request about how I have three special children, I really did not think I had a chance in being chosen, so I was surprised that she very much wanted me to share my story. Writing that post made me realize something...I do have a story to tell, a story I have kept mainly to family and close friends all these years, because I worried about what my kids would think later on, or that I would just be seen as someone who just wants others to feel pity about my situation. But writing that post, and then seeing the few comments from strangers about how they admired my courage, and how my story inspired them, made me think deeply about what I can do to help others if I were to start a blog.

I have always loved writing...ever since I was little I would write stories about my pets, family, and friends. My high school and college teachers said I was a gifted writer--I majored in English and editing. But then of course becoming a mom put a halt to all those supposed "gifts" and I knew I would use them at the right time, the right place in my life...maybe this blog will be a start for me? Now this does not mean my blog will be profound, earth-shattering, or exceptional, but it does mean it will be real, honest, and reflective.

So after having my first child, and learning year after year the complexities of her challenges, and then having my second, with his own set of completely different health issues, and then a third with a whole new set of trials, I thought, wow, how did this happen to me? Why was I chosen to parent such unique children? What am I supposed to learn from this, and even more so, what can others learn from my experiences?

So I am doing this for two reasons: one is mainly selfish, since writing about my experiences will allow me to release some of the frustrations and joys I go through as their mother; and the other is for you, the readers, to give you insight, hopefully, into your own lives and be able to cope with challenges and joys that might be similar. Blogging is about sharing, about being open and not being afraid. About giving of yourself so that others can grow, change, or receive comfort. About preserving memories, the good and the bad.

Of course I understand the risks...believe me, I feel like I'm walking the plank, putting myself and my kids out there, taking the plunge, by doing this. But it's a risk I am willing to take, to give of myself openly so that maybe, just maybe, others will see themselves in my experiences and gain the understanding they have so desparately needed. I will tell it like it is--I want others to know what it's really like to raise special children. I'm not perfect, but I'm trying my best to raise the children I have been given.

I sincerely hope that this blog will serve its purpose. If you know of any friends or family that can benefit from my stories, please feel free to share. I really want to influence and inspire others, special needs parents in particular, as I pave this unknown road ahead. And by sharing I hope through your comments that I can feel validated, comforted, and strengthened as well. We all win in the blogging world! Here we go!

Little N: my baby red

Little N, my baby red, was born on December 5th, 2012, just one day before his big sister's 9th birthday. He weighed exactly one ounce more than Big B, and had even redder hair. He looked perfect, and we sure hoped he would be, after praying the entire pregnancy that he would be okay. After experiencing our two older children's health issues, we hoped that this baby would be just fine.

After he was born, he was having trouble nursing. It seemed like he couldn't latch on and instead made a strange clicking sound. The nurses noticed he had a lot of mucus discharge from his nose and mouth, so they took him out to suction him. Once an hour passed, and then another, I began to get very worried. And then a pair of nurses came in to give us the news: our baby had a bilateral cleft palate.

They took us to the nursery and opened his mouth to show us. And suddenly I knew that this baby would bring a whole new set of challenges to our family, but also many blessings. We look forward to sharing his story and hope those affected by cleft palate can find comfort and understanding through our experiences.

Big B: my middle red

Big B, my middle red, was born on November 16, 2006, at a very healthy 8 lbs 14 oz. He looked gigantic next to the other babies in the nursery, and was a handsome little redhead. We noticed right away that he had two small spots on his stomach. When we mentioned it to the doctors and nurses, they thought the spots were birthmarks. So we took him home, excited to have a new baby boy.

The first few days proved to be very scary, as we watched our baby boy develop strange symptoms. He began to flush, out of nowhere, on his entire body. It would start right around his nose, and spread slowly until his whole body was red as a tomato, and when he did this, he would squirm and cry and seem like he was in lots of pain. Soon after that we noticed blisters on the spots. This was in just the first 3 days after bringing him home. We brought him in to the pediatrician, and they thought it was inpetigo. When the cream didn't work, they gave us a referal for the dermatologist.

When we called the dermatologist, they said B couldn't be seen for 4 months. We described his symptoms and how worried we were, and the best they could do was put him on the cancellation list. So we prayed, and our prayers were answered because the next day, they called back and asked if we could come the next day. And when we brought him in, the dermatologist knew right away what he had: mastocytosis, a rare blood disorder where the mast cells contain too many histamines that have to be released into the skin and cause spots, flushing, and blistering. We were reassured that his spots, thought they would continue to spread over his body, would slowly fade until he reaches adolescence.

We love having Big B in our family and hope to touch the lives of others who have children with mastocytosis as we share our stories about him.

J-babe: my oldest red

My first redhead was born on December 6th, 2003, and was placed on oxygen for 9 hours to clear her lungs after having meconium in the womb. She otherwise seemed very healthy and normal, and of course beautiful! She was a good eater and sleeper, and hardly ever cried.

I began to notice that she liked to wiggle her hands and feet a lot, and stiffen her legs and jaw spontaneously. She hated to be on her tummy, and didn't smile as much as we thought she should. She sat up around 9 months old, crawled at almost 12 months, and both these gross motor milestones were a challenge for her. We literally had to put our hands over her arms and legs to teach her how to crawl. She said a few words before 12 months, but started shaking her head and flapping her arms as well.

One day my neighbor knocked on my door when J-babe was just 16 months old and told me, "I think your daughter has autism." She was a speech therapist and worked with preschoolers on the spectrum. I can't even describe the feelings that went through me at that moment. She sat down with me and explained the symptoms she had observed, and I cried, for a long time, and this neighbor I barely even knew just put her arms around me and told me it wasn't my fault, and that everything would be okay. After she left, I did a ton of research, and felt strongly that it wasn't autism. She could TALK. She knew animal sounds! But what this neighbor did was open the door for me to admitting that something just wasn't right about my little girl, and since then it has been a journey for me, figuring out her diagnosis, getting the right therapies, placing her in the right school programs, the list goes on and on. I will be sharing more about how this little J-babe has developed into the lovely young lady she is today.