Steps of Faith: Long Over Due Update and Happy New Year!

Clara's September Tea Party and end of 2016

In a blink of an eye Clara turned three. She celebrated with her friends and family on a beautiful Sunday in September. Her party consisted of beautiful tea cups, hats, food, lots of pink, and balloons. I find myself completely giddy when planning Clara's parties. M always was and still is very specific with her own party plans. Anything to girly for her always has been out of the question. So with Clara "the sky's the limit with pinkBefore her birthday I did spend a lot of time reflecting on the past three years. I've replayed the NICCU, counted her scars, tried to tally up all her broncs and other procedures, tried to remember every diagnosis, thought fondly of folks we've met, and looked at about every photo since she was born. And I think WOW! What a ride, what a tough little girl.

Two years ago I think I still had post traumatic stress before her first birthday, and before her second I was just exhausted from a year of diagnoses. This year I was joyous. Thrilled to have made progress and have hope for more to come.

He will yet fill your mouth with laughter,

and your lips with shouts of Joy.

Job 8:21

I am not saying it all is easy. It never is easy for any family, but the physical and emotional strain for a family with a special needs child can be difficult. Clara's getting bigger and her physical needs are the same. Gross motor and fine motor is at a 6 month level and cognitively she is much higher. All that scares me every day. Most of the time I feel like I'm not doing enough.Not teaching her enough, stretching her enough, not strong enough to carry her like I did before. The thought of wanting to fix her is always there lingering. She has a lot of anxiety about being out with people she doesn't know, especially doctors, nurses. Which makes appointments difficult for her and for me beacause I can't calm her down. She is very observant, and I often under estimate how much she understands because she is non verbal.

Since her birthday party, months ago, she did get her trach out. She had her surgery this past summer, so we were getting monthly broncs to observe her airway. Each time not knowing if he was going to take it out. Her decannulation happened in early October. She spent 48 hours in the PICU, and then we went home. A new beginning, for us all. She thrived immediately, and seemed so much happier without something hanging around her neck. The first thing I wanted to do is was take her out of town for a quick trip. Since we never really have, with an exception of week long beach trips.

almost 48 hours without trach at UNCCH

Our trip came in late October, to Myrtle Beach for M's softball tournament. One night in particular Clara and I just cuddled in bed together for the night, first time ever. No cool mist tubing, nor a trach mask to confine her away. She still had her feeding pump running and a pulse ox, but we made it work. That weekend together was a first without the burden of tons of equipment and an enormous amount of supplies packed in the car. It just felt very normal, very free, joyous!

We have been bummed with the lack of vocal sounds without the trach. However going into this I had my suspensions that something may be wrong with her vocal cords. Clara had a scope done awake in her ENTs office in late September which showed very little, because Clara went absolutely nuts with the scope going down her nose to her cords, and really just the mere fact she was near her doctor. So what does that mean?

I think there are things her ENT can do to her cords, but other than that we have to just wait and see. We work with her the same way we would if she could vocalize, and have noticed soft whispering sounds that are new. I am hopeful with help for more sounds, but at the same time I am trying to prepare for there not to be.

Her stoma is still not closed. So I think she will need surgery to get that fixed probably this summer. The week of Thanksgiving M cam down with walking pneumonia. Then about as fast as I could ask her pediatrician about Clara, she also started with a terrible cough and a lot of secretions that she wasn't used to dealing with. There have been many times I just thought if I could just suction her out, something I thought I would never say again. With all the coughing came Clara's gag reflex. she began throwing up, spitting up daily. Off and on she ran a low grade fever, and just so tired. Needless to say we have been so worried. We have taken her to her pulmonoglist, her pediatrician twice, and have had two chest xrays. All concluded that this was very much viral.

Watching Clara with her episodes, I have noticed that she just doesn't understand whats going on. The coughing up stuff really scares her, which causes her to hold her breath, almost hyperventilate, take in more air from her opened stoma, and therefore spitting/throwing up. It all has just made my head spin not knowing how to help her. Then there is the non communication piece. She just cant tell me what how she feels, nor can understand us when we try and help her. There were many calls and visits to the doctor with no answers, except to ride it out. I did ask her specialist if this is the way it would be with every cold, sickness and she thought no. Of course with Clara's disabilities I wonder how much that impacts her getting through and understanding how to deal with being sick without the support of the trach.

We are now on week 4 and beginning to see her smile again. for several nights, she has made it through with out throwing up her feed from coughing. We are thankful to still have night nurses to help, or Jason and I would have to take turns in her room all night.

She has regressed on somethings she had been doing well with, like eating, making sounds, playing, etc. So in some ways it will be like starting again. However we are confident it wont take long.

She has picked up two signs, in the past several months that she uses. She mostly just does them when she hears the word, not sure they have meaning yet to her. But I am so proud of her for those. For Christmas she got several sign language videos, which she delights in. I see her hold up her hands, just trying to do what they do and it makes me smile.

Before she got sick I did hear her laugh for the first time. Because of all the congestion I haven't heard it since. Nonetheless it was the sweetest sound!

As I look back over the past year, 2016 has been very good to us. To be honest I do hate to see it go. If I could title it, like a chapter, it would be called Joy. It wasn't always easy but in and with the good and bad, the Lord just continued to show His goodness and faithfulness. Not only have our circumstances with Clara have gotten easier, healthier, but I think I have especially learned how to seek joy more, and how when the day is bad or hard it still can be found.

The Life We Never Expected encourages parents to fight for their joy. However sometimes in a busy, tied down, repetitive, tiring household where is there joy to be found. Various places it turns out.

Joy comes from the Bible (it is the deepest richest source of joy fuel, joy comes from people (the right people that increase your happiness in God) , joy comes from speaking positively (don't listen to yourself, but talk to yourself, joy comes from good habits (find what helps you engage with God and make it a discipline), and Joy comes from celebrating (delighting yourself in the the Lord).

Until we are happy with God we are really no good for anyone.

As 2016 comes to a very near end, I am so thankful for Joy. Three years ago I couldn't possibly imagine what our lives what would look like. Clara had just gotten her trach, on a vent and the in the NICC and that life would become a journey we never expected. However I did know that God would be with us, and that He promised Joy and love through it all.

God give me Joy in the common things:

In the dawn that lures, the eve that sings...

In the thought that life has love to spend,

In the faith that God's at journey's end.

God give me hope for each day that springs,

God give me joy in the common things!

Thomas Curtis Clark

We still absolutely live in the day to day. While I do have great hope for the future, I still can not fathom what it will be like. I know there will be happiness and love and also more decisions as we support Clara as she grows. Our life will need to adapt more with her but we will find our way together. I especially look forward to more of the common things, that others take for granted each day. Long laughs, short trips together, new sounds, more birthdays, and new adventures however big or small they are.

I remember when Clara was getting ready to leave the NICCU three years ago, I said to someone "I just want to bring her home, I can deal with the rest". Happy and healthy remains our goal, and our wish for the start of each new year.