Sunday, September 20, 2015

It takes a village

4 years ago, I posted this to my Facebook account: 

"1 year ago we had never heard the phrases "interrupted aortic arch" or "lyringical webbing." Brielle has taught us so much in just one year it's amazing. Because of her, we know how important a good attitude can be.We know what a difference love can make. We know just how strong a 1 week old baby is. We know how amazing it is to hear a baby cry. We know the power of kind words from others. Brielle continues to amaze us and we are so blessed to have her in our lives. Happy 1st Birthday Bri!"

It still rings true today. We hear the phrase "it takes a village" often while raising children, but I don't know if I ever really got that saying until 5 years ago. Sure, we had help with our first, but that was nothing compared to 5 years ago. 5 years ago, we announced we had a baby girl. Our family members all began their drive up to see us and meet the newest member of our family. Some made it, some did not, some were told to turn around halfway here. Baby girl was headed to a different hospital. 

To this day, I cannot believe the amount of love and support that was shown to our little family. Visitors came, meals were made, gifts purchased, and kind words were said by all. 

My Mom set up a Caringbridge page for our little girl. It became our ritual at bedtime to page through and read the comments left for us. 5 years later, and I can still recite some of those kind words that were typed so carefully for us to read. Words, are powerful things. We knew we had people all around the country praying for our little girl. It was comforting. 

Since then, we have had nurses, family members, and friends help us love our little girl. People often comment on what a good job we have done and how far she has come, but it is not just us. She has a whole team cheering her on, loving her, and helping her- it's our village. It's family members, it's doctors, it's nurses, it's friends, it's neighbors, and it's coworkers.  

Thank you to all those who have impacted our little Princess's life. Thank you to those who have been patient, kind, and loving towards her. Thank you to those who have welcomed her into their lives. Thank you to those who took a moment to leave a comment on her site. Thank you. 

I recently read an article written by another mother who was lamenting about the loss of "village". I disagree. It may look a little different now days, but I believe the village is alive and well. 

Little Miss continues to teach us every day. She shows us what it means to be strong. She shows us what it means to keep trying. She teaches to celebrate the small things. She teaches us that hugs really can help heal. Through her, we have seen kindness in so many others. 

I cannot wait to see what she teaches us this year. 

Thursday, September 17, 2015

Is Being a Nurse a "Talent"?

There have been some comments in the media lately concerning the profession of nursing and whether or not it is considered a "talent".  Anyone who would ever question this has clearly been healthy enough to not have medical needs that would require one to spend a lot of time around nurses.

They have not just recieved a diagnosis for their child and been comforted by a nurse.

They have not had a nurse carefully explain what all the numbers on a screen mean about your child.

They have not had a nurse run to your child's room because an alarm is blaring.

They have not had a nurse fight against doctors because they KNOW your baby needs more pain medications.

They have not left their baby's side for a night because a nurse you know and trust reassures you that they will stand by and keep your child safe.

They have not had a nurse run through every floor of the hospital looking for THAT mobile because that was the one she liked last time.

They have not had a nurse make them laugh when they needed it the most.

They have not had a nurse track down the laundry to find a precious blanket that was not meant to be taken.

They have not come home from the hospital to find a stranger sitting on their steps. A stanger who is there to help, care, and keep your baby safe. A stranger who will come into your home to do these things. Yes, a nurse.

All these things and more have been done for my and my family, by a nurse. If that is not enough talent for you, try waiting while someone tries to get an IV started in your tiny baby. Getting it on the first try, now THAT is talent.

I cannot thank the nurses in my life enough. They have had such an amazing impact on my life; I have a difficult time putting it into words. From the nurses who helped us in the NICU, to the nurses on the CVCC floor (Heidi and Carissa- if this every reaches you- I am so VERY grateful for you both!), to the nurses who see us in the clinic, to the nurses we have had in our home, to the nurses I have in my family. I believe nurses have the greatest talent of all- they give us hope. They give us something to hang on to. They give us comfort.

Thursday, August 27, 2015

To Write... or not to write?

Well, I am feeling a little bit silly because when my last post was featured on The Mighty, the last line states that people can "follow the story" at this site... and there is only one post. Hmmm...

Ever since the birth of my daughter, I have contemplated writing about the different emotions I have had or different situations we have been in; however, it is a difficult situation to write about. Not because it is a difficult topic necessarily, but because of how it could effect her future. My daughter is not her diagnosis. If I continually write about her diagnosis, what does that say? What happens as she grows older? What will she think about her Mommy writing about all her doctor's visits? Will it impact her social life? I want so badly for her to find her own path in life, with as little meddling from me as possible.

Obviously, I have chosen to write. My hope is that I do not embarrass her (there are plenty of other ways to do that...) with my writing, but that she can see the love that is behind the writing. In all honesty, I wrote that last piece in fit of frustration. After writing it I thought about it, and decided that I could not possibly be the only one with these thoughts. So I hit the "publish" button.

As for the future, we shall see! Hopefully I will continue to find time to write- as I do enjoy it. In the meantime, feel free to educate yourself on DiGeorge Syndrome- it is almost as common as Down Syndrome and yet it is still thought of as rare. There are over 180 different anomalies that can be attributed to DiGeorge, which makes it difficult to diagnose at times. Everyone with the syndrome is effected in a different way- just like no human is alike, no case of DiGeorge is exactly alike either.

Tuesday, August 25, 2015

School Forms- 2 lines for Medical History? Uh oh...

Well, it is that time of year again: back to school. The shopping, the preparing, the excitement... the forms. While I am pretty sure no parent looks forward to filling out forms, there is one question that always gives me anxiety. When the question is asked on a preschool get to know you form, it looks like this: "Medical information you should know about me..." It sounds like an easy question, right? For most, perhaps so. Not in this situation.

How can I explain my daughters medical history on two lines? Her file at Children's is well over 400 pages long...and I need to summarize that on two lines? Furthermore, what happens when the teacher finds out that she has this extensive history? Will they be intimidated? Will they treat her differently? Will they be afraid to have her in their classroom?

The truth is, her medical history IS scary. She had open heart surgery at 7 days old. She was diagnosed with DiGeorge Syndrome (otherwise known as 22q11 Deletion or VCF) around 11 days old. She had a tracheotomy at two weeks old and feeding tube soon after. She qualified for in-home nursing. She was hospitalized at 7 months old for a flu-like illness and watching a non-pediatric doctor try to place an IV in her tiny body was one of the worst things I have ever seen. Just shy of a year, she had trachea reconstructive surgery and decanulation (the trach came out). But that was not the magical end of everything. She has low calcium levels and, due to a compromised immune system, catches illnesses easier and has a harder time getting over them. She also has low muscle mass and is probably one of the biggest klutzes you have ever met. This last part, I know, is not medical, it is just who she is. She has developmental delays that have lead to weekly PT, OT, and Speech Therapy appointments and has qualified her Early Childhood special education courses. Oh, and did I mention the sensory issues?

Sounds scary, right? What her medical history does NOT show, is that she is the first one of her siblings to give her parents a hug every morning. She cries easily when hurt, and feels bad for others when they are hurt. She tries SO very hard to learn concepts, and she DOES get there... it just takes her a little longer. She gets very anxious and cautious in new situations but positive reinforcements and hugs can go a long way. She is a people-pleaser; and gets upset when she feels she has failed in this. If you raise your voice towards her, she will cry. She will do almost anything...for bubbles or a sticker (something her therapists know well). She is SO excited to start school at her big brother's school that she has brought it up at least once a week this whole summer. She loves being a big sister. But will all this be ignored because of her medical history?

Tonight, we will meet her teacher. I will most likely stay late to be sure she can meet her teacher One-on-one. I will try to tell her all these amazing things about my daughter that cannot possibly fit on a form. I will try to stress the importance of her medical history without letting it overshadow who my daughter is; because she is NOT her medical history. I will walk out of that room, and pray and hope and dream for a good school year for my baby girl... because isn't that what ALL parents do?