Monday, December 29, 2014

The end of the year

It's the end of 2014....good riddance! While I can't complain about everything that happened this year. It certainly was another year we lost more than we gained. Let's recap some high points....

Audrey had only 4 hospital stays all year!!! This is huge! Her stay in February was the whole month, and was the scariest time we've ever had with her, but she has come a long way since then.

Audrey started ballet. This is a dream of hers, and we are doing everything in our power to make it happen for her. It is so hard to get her there. I have to give her extra fluid before hand (think about doing exercise for an hour but unable to drink anything) and then fluid after. She has to get extra steroids during class or she can't physically make it through class. She usually has very long nights after class with low blood pressure and low oxygen, however, she's never happier than when she is dancing. So because of that, I will continue taking her. You may ask why? It seems to take so much from her to go, why put her body through that? Because everyday, little by little, cell by cell she is losing her battle with mitochondrial disease. I hope and pray that we can slow it down, that someone will find something to stop the damage being done. But her reality as of today is that there will come a day when all of the interventions I can possibly do will not be enough for her to dance. Until that day comes, I will do everything in my power to encourage her dreams. She twirls around the house telling me, "I have to make my body stronger so I can dance on my toes!" This is not her acknowledging her limitations, this is her repeating what Angelina ballerina said when she wanted to dance on pointe, but Audrey has no idea how right she is.

Audrey does not recognize her limitations which is a blessing and a curse. She doesn't let mito hold her back. She charges ahead with all the determination of any other 5 year old with a goal in mind. She does not stop when she's tired. She does not recognize her muscles starting to ache or her tummy starting to hurt...until the pain is more than she can ignore. And then she crashes. We have nights like tonight, when she had so much fun playing with her brother who was gone all weekend, she didn't notice how tired she was getting. SO when I said it's time for a tub, and she had to stop for a minute, she literally lost control of her body. She screamed for over an hour, she was in horrible pain, her blood pressure was low, her glucose was low, the sound of running water was deafening to her, she kicked and she screamed and she could not stop herself. While some might think it was just an epic tantrum (and I don't doubt it started that way) it certainly did not end that way. It was simply the price she paid for having too much fun today. Tonight I will pay the price as I work to keep her vital signs stable because she played with her brother today.

However, back to our recap. Audrey had a great summer! She did ballet, she swam in the pool, her Nana came out to visit, she did not go to the hospital. In fact she had very few doctors appointments. This summer was the best we've had since she got sick. Thankfully since Audrey started using her insulin pump filled with hydrocortisone to manage her adrenal insufficiency in July, things have gone so much smoother for her. We are so grateful to her endocrinologist who was willing to take a chance and try something different. Audrey ended the summer celebrating her 5th birthday at Disneyland with her best friend. She did the royal princess makeover and easily had one of the best days of her life.

Behind the scenes, this year has been rough. While Audrey's medical needs have continued to increase, the ability to find anyone to help care for her decreased. I know I have mentioned before how her complexity prevented finding a home nurse to care for her while I went to work. This only continued this summer until finally in November we were forced to relocate to a more affordable location. We are now 2 hours away from our old home, learning a new way of life. It's a rural community and we have a lot of land. I hope that the kids and I get to learn new skills to make ourselves more self sufficient. I have already greatly expanded my power tool collection and have learned new tasks such as laying laminate floor, installing baseboards and using a jigsaw. There is so much more to learn it is a little overwhelming. As most homeowners find, there is an ever growing list of projects, however, add in Audrey's schedule, it is very difficult to get through projects which should be fairly quick. Audrey's life has not changed much, as so much of her day revolves around a complex schedule of care which is the same no matter where we live. Audrey's brother however, has had a harder time. He has left the school he spent the past 6 years at. He left his friends and is 2 hours from his father and grandparents. I hope and pray every night that this was the right move for him too. His needs are frequently behind Audrey's needs due to a matter of necessity, but I want more than anything for him to grow up happy and not feel like he was neglected for his little sister.

So with moving came a change in jobs. I was forced to leave my place of employment where I have lived, worked and grown for the past 10 years. This was such a difficult choice to make, though in the end, there was no choice at all. It really came down to the fact that I cannot work and take care of Audrey. I had a couple fellow nurse friends who pitched in to help when they could, but this was not steady or reliable enough to make it possible to continue my employment. So I have become yet another statistic to the world of special needs parenting. First it was my marriage, then it was my home, finally it was my job. All of it lost in order to care and provide for my child. Don't get me wrong, I wouldn't change a single thing. Looking back I would chose my daughter, both my children over everything. Clearly my husband wasn't who I thought he was. My home was replaced with another home where we hope to have even better memories. My job gave me the skills I need to care for my girl. It gave me the connections I needed to get her the best doctors I could to care for her. And while I was so sad to leave, and I miss the adult conversations which are absent now, it turns out I was more attached to my job than it was to me. The fact that after 10 years of employment, I had 3 people wish me well, showed me I had out stayed my welcome.

This is what happens when you enter this world of special needs parenting. You lose friends, jobs, opportunities. It starts slowly with people not wanting to call you because they are afraid they might bother you and you have so much going on. Then they stop inviting you out to things because you can't go and even if you did, your days are so much different than anyone elses, it's hard to find common ground to speak about. Next thing you know, it's been months since you've spoken to your "friends." You get the obligatory Christmas cards and Facebook responses, but you know not a single friend knows what is going on in your life everyday. The fact that your whole life revolves around one little person and their needs, precludes the possibility of maintaining anything but the strongest of friendships. And though your employer may be sympathetic to your absences and short comings, everyone has a business to run and you are not a valuable employee. You quickly learn what it's like to live just outside of the world that everyone else seems to be apart of.

These are the lessons I have learned the hard way. Live life to exhaustion. Follow your dreams until you physically cannot possibly move, and then keep dreaming you will do it someday. Love your children with all of your being. I cannot imagine my life without them, and though they may exasperate me, I will do anything in my power to make them happy. Take a chance, make a move. Hope and pray for the best when things are not certain. If friends are true friends, they will be there, you don't need the rest. Keep fighting. Never give up. These are the thoughts I have as we enter into 2015. Once again I am hoping and praying for a better year. A year of peace. A year of health. A year of life.

I wish everyone happy holidays and a happy New Year.

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