It’s been a couple weeks since my last post, life has been hectic since Havens diagnosis. We had a long list of orders and recommendations and I’m slowly checking them off. The amount of paperwork, phone calls, and appointments these days are insane. I’ve really struggled with my words lately, life has been extra trying, and the only way I can describe it is sad. I’m just so sad.  

I remember being younger and counting down the days until I was an official grown up. When I could make my own decisions and rules, things were going to be so much better and easier. Oh boy was I wrong. I never In a million years thought I’d be worrying about the things I do now. I never could have imagined the pain and heart break I feel now, nor the amount of uncoditonal love my heart holds for my girls. There literally isn’t a damn thing I wouldn’t do for them. 

So much has happened lately I find myself numb. It’s just hit after hit, and just when you think you can’t take much more, you get hit again. We lost a dear friend unexpectedly, I’ve had to say goodbye to too many I love, it never seems to get any easier and every time it leaves me questioning God, life, and everyone around me. He always takes the good ones, it’s so hard for me to wrap my mind around it. We also got some very bad news about one of the most important people in my life. I can’t go into much details but we are asking for all the prayers we can get. My heart is absolutely broken over this. She’s at peace with it but I am having a hard time getting there. Praying God helps calm my heart. 

Monday Mia had her 5 year routine check up. I was in a way looking forward to it, Mia is every doctors dream patient and I knew it’d be a piece of cake. She’s my easy child that even though I’m always thinking about, I very rarely have to worry about. Silly me. Mia’s tonsils and adenoids are blocking her airwave and are going to need removed. Poor girl, just in time for the holidays. They also discovered a heart murmur while there. They sent us immediately for some blood work and X-rays, and Wednesday we went for an Echo. Fear and panic overtook my mind and body this week. I don’t do well when anything is wrong with my girls, especially when things like their heart become the topic of concern. Praying we can write it off as a growing pain. 

Havey, Havey, Havey. Things continue to downward spiral in our journey. Havens Autsim Specialist ordered us additional private Speech therapy. Her OT became concerned about her walking and clumsiness(as a tip toe walker she is always all over the place and running and falling into everything) this led to a Physical Therapy Evaluation. Her new speech therapist voiced her concern for Havens need of feeding therapy as well. So in a nutshell this week we powered through hours of new evaluations and landed at adding 3 additional therapies to our already vigorous and full schedule. My mind and my heart are so overwhelmed. Everytime we turn around it’s something else, it’s more recommendations or something else “wrong” with Haven. I don’t know how people do it. Meeting all of Havens needs is a full time job in itself. I’m struggling with how to work, cook, and clean and still meet all the girls needs. I’m burning the candle at both ends. Praying for some relief, even just momentarily.

This Thursday we make our first trip to Riley’s for Haven. I am very eager but also very nervous. I am praying these doctors can help me to help Haven and figure out what’s going on with my girl. Her tantrums have escalated and she’s seemingly more and more unhappy as the days go on. Every day lately we struggle with basic things like getting in the car, bed and nap time. She becomes so upset she starts ripping her hair out, clawing her face, kicking, thrashing, and screaming so violently that sometimes I just sit in awe. I’ve never seen anything like it. Her anxiety is so extreme and she runs on little sleep and food, she’s always ready to fight or flight. The therapist doing the PT evaluation said she is one of the most tactile definsive kids she’s ever seen. She’s two. It shouldn’t be this way. I laid on the floor with her after taking Mia to school the other day tears just streaming down my face. I’m heart broken for Haven. This wasn’t the life I dreamed for her or any of us. I worry about how she feels in her heart and mind. I love her so so much and lately it just isn’t enough. Our therapists and Drs have been mentioning medication and more extreme therapies, none of which I want for her. I want her to be 2 and to play and to be happy and to know she is loved more anything in this crazy world. I want to not have to worry about her every single second of every day and to be able to fall asleep tear free at night. I have so many wants for her that seem so far off these days. I am trying so hard to trust in Gods plan and see the bigger picture. I pray he puts more peace in our hearts and strength in my mind. I pray he wraps his arms around Haven and comforts her when I can’t. I just pray. 

Today and always I am extra thankful for my support group of family, friends, and therapists. There is no way I’d be surviving without you all. I ask as we head into the Holidays, family get togethers, and outings that everyone is open minded, respectful, and understanding. Every day lately is a struggle with Haven. If you are in our immediate family please respect her space and our wishes, know that we have Havens best interest at heart and we never have malicious intent. Your seemingly innocent but unwarranted touch or over stimulation to her can cause lasting sometimes giant effects. We love you all so much and ask for prayers during this tough time.

xoxo

Taylor