When you don’t want to look back because it hurts too much.
And you don’t want to look forward because you know it’s going to be hard.
That’s where I’m at as of 11:24PM on New Years Eve.
And anything I say just makes me sound like Debbie Downer.
At the beginning of 2013, I wanted two things.
I wanted to find a church that we could call home. We did and we now call those people our family too. Success.
I wanted to have another child. After a terrible 2012, I asked God to bless us with a third child– our something good, I thought. Kind of like a rainbow after the storm that was 2012. Success.
Except things don’t always go as planned and His plans aren’t always my plans. I’m tired of learning that lesson. Really sick of it, honestly. I feel like I should have already passed this test, moved on the brighter days.
2012 was such a hard year. Heartbreaking, leg breaking, ankle breaking– you get it. Loss after loss after loss. Hard losses. Not those easy goodbyes when someone lived a long life. Those hard goodbyes when young people are ripped from your life.
So I thought- surely 2013 has to be better.
And it was. We were blessed to find our church and our church family. We were blessed with a full term pregnancy full of kicks, indigestion, and as far as we knew- a healthy baby girl. We continued to watch Bryson and Bella grow and thrive. We celebrated 9 years together and 5 years of marriage.
But then the blows began. A 14 year cousin killed in car accident followed by my Pawpaw two days later. We spent Labor Day weekend grieving and went to the funeral home on Monday, Tuesday, and Wednesday.
And then of course, after 40 weeks and 2 days, Brynlee reluctantly decided to join us. After 12 hours of the worst pain of my life, she was here. Then, she didn’t cry and she couldn’t breathe. And just like that, she was taken an hour away to receive the care and treatment she needed. The tears began to flow and they didn’t stop and I was sure that my heart was definitely going to quit beating because it hurt so badly.
20 days in the NICU. A tracheostomy and gastrostomy tube insertion at 9 days old. She is home. We are thrilled.
But that doesn’t make it easy.
Ask any PRS parent and they’ll tell you that the first year is hard. Most will say it’s the hardest year of their lives.
So as we ring in this new year- 2014- the anxiety and worry overshadow the excitement of things to come.
Today was a hard day. A day that even a 2 hour nap and a hot bath couldn’t make better.
It’s a new year.
And while 2014 may not be better, I certainly will not allow it to make me bitter.
One day at a time.
You are so strong. I can only imagine how you feel. I wish I were closer to give you a big hug. Lean on that church family this year and your online friends. We are here for you, no matter how far we are.
Hugs!! I’m happy that 2013 gave you a church that you can call a family. You are such a strong woman and I wish I were closer and could help. Just know your online friends are here for you whenever you need us!
You have been through so much so I can definitely understand your bitterness. I’ll pray for you and your family. God is with you through this. Keep leaning on Him.
God bless you Whitney. There are so many praying for you and that beautiful baby girl. May 2014 prove to bring you blessings that you can’t predict.
May God bring a peaceful and happy new new year to your family.
I found your blog from pinterest.
I was were you are. Ruby was born on Christmas Eve and we didn’t know that her jaw was receded. No specialist was going to come in on that holiday weekend. We didn’t know if she would make it through those first few days.
She was transferred to Childrens Hospital in New Orleans and I verbally signed consents over the phone for a tracheostomy.
All of the specialist there had seen micrognathia before (whether it was pierre robin, treacher collins, etc.) but they all said they had never seen a mandible as small as Ruby’s.
She was there for one month, and she came home with a trach and gtube. We were able to perform the jaw distraction right after she turned 1. If that is the route that you have to go with your daughter it will be a tough surgery. It was heartbreaking having to turn the rods that stretched her jaw forward. It took ten days. Ten days of bloody, swolen ears where the rods came out, on top of increasingly stressful trach care because of her becoming mobile.
But I would do it all over again. Shortly after the surgery, she was able to get her trach out. We were finally able to hear her cry. It took a year and 4 months, but we could finally hear her cry!
She is two now and said a few words. Her stoma is still open (they say they usually give it a year to close on its own) so we have bandages on her neck to keep her from blowing air through it.
Her gtube is still in her stomach, but we have not used it in about 5 months.
I’m not sure what your daughter’s plan of care is. But from what I understood from our craniofacial team, Ruby’s was the worst they had ever seen.
So, if we are able to have a baby girl living a normal life just two years down the road from where you are… I don’t see why you can’t hope for that yourself.
I wish you the best of luck. I’m convinced trach moms are the strongest moms out there!!
(ps- if you haven’t thought about it already… would your other daughter want a trach teddy bear? Once we finally started getting extra trachs and we could throw some away, we saved one and made a trach bear for our older one to suction and change the gauze. it made trach care so much smoother for us without her pulling at our legs for attention.)