We are on week 3 of therapy (Due to her OT being out and my stupidity we had to therapy last week) It's going well. Her therapist said she's doing well. It's hard. I can tell it's hard for her which then makes it hard for me. I hate hearing the therapist say that things are so hard for her that are not hard things. I hate hearing a professional tell me we need to get her moving because so much cognitive development is in movement. (Not starting an argument about who what where why how ... just stating a feeling.) I hate FEELING like I failed her because of how far behind she is. Like I should have known and been doing more to help her. (No, no one has said that to me ... again it's just how I feel) Some hard feelings for me lately. Did the hard thing and celebrated when she did a small thing. Like putting her hand down to keep herself from falling over. That, my friends, is a natural human instinct, but Hailey doesn't have it. She has to learn it. So, when she did it today, we had to celebrate. I hate that. Pry will for awhile. But I am doing it. I hate the fact that she is so slouched forward and it sounds and seems like my fault that I wasn't positioning her correctly all this time. I am so frustrated. I hate this.
I got a call the other week from the pediatrician's office to let me know they put in an order for us to see the Physiatrist. That's the word. One of my friends got it lol. Called to schedule ... January 11. Guess they're busy. But this appointment will address Hailey's spasticity or stiffness in her body. It manifests itself in different ways. I talked about it in my last blog post if you need to read more, but basically she has to concentrate so hard to do one thing that the rest of her body gets completely stiff. This can be bad as I learned yesterday because as Hailey is growing if her muscles don't stretch they won't grow. Her bones will and the muscles won't follow and could leave her hand and arm permanently limited. That. Scares. Me. I was able to hold it together in PT yesterday, but I was definitely crying on the inside. As a mom you kinda feel like you should know this. Like I should have been stretching her this whole time. Which if I'm totally honest I did try. Not how they are teaching me, but I did other things. I guess I will keep my fingers crossed I'm doing enough and it's not too late.
Another frustrating venture I'm on is Help Me Grow. I can't begin to tell you how many people have told me to contact them. Including the coordinator who met with me in the step down unit at the hospital not long after the dinks were born. (I call the twins Twinkidinks, Dinks for short) So I already knew of them and just honestly I haven't wanted to call. I had to ask specifically "help me with what? How are they a resource?" Because I couldn't understand what they were going to do for me. Well, broke down and called. If for nothing else, I hope they can help me navigate requesting funds and filling out paper work I can't find and won't pretend to understand. Hailey has a clinical diagnosis ... and yet ... they have to come out and do their OWN assessment to determine if Hailey needs help. What? Is that not the biggest waste of everyone's time and resources?? She has been diagnosed. By a doctor. A specialist. That bears no weight?? Nope. Well I was told I'd get a call back same day ... it's been around a week and nothing. Ugh ... no wonder our neurologist said they were stretched thin and may not be able to help. I had to call my original person back today (that is amazing in and of itself that I remembered) and say yeah I never got called. So hoping this works out and turns out they are as wonderful as 500 people have told me they are. So far ... me 1 HMG 0.
The other place I struggle with is my Emma. She is so bright and funny and has so much energy. Honestly, I can't even start to tell you how much stuff I need to do in a day and trying to balance it all is awful. Emma does not get the time or attention she deserves from me. Nor the patience. I struggle every day trying to remind myself to give her time and to enjoy it. It shouldn't just be obligatory but wanted. That's hard when my house is a disaster (yes still) and my time is so limited. That and the fact that I'm averaging 3-4 hours a sleep at night.
Now for the good. Hailey is doing well. I think. I continue to see improvements. As everyone stated and I already knew, we have some days that are better than others. Sometimes she sits and plays so well, it's hard to tell. Other times she throws herself back in a fit and screams. But overall ... we're getting there. Her OT even noticed that she is already eating better! (She had to learn how to chew) She basically was showing off at OT yesterday for a new therapist that was there. I don't think the new woman believed Breann (Hailey's OT) or I that the things we said were problems were actual problems because Hailey did everything like a BOSS. But again ... still so much that needs addressed.
I turn 31 tomorrow. HAHA I'm old ... and I'm not just saying in years. I have the soul of a 98 year old. Kids today are crazy with their sayings and clothes ... I don't even know what's goin on just as long as you stay off the lawn!!! But seriously, some of my friends got together and bought me dinner at Cheesecake Factory on Monday. That's not cheap guys. I was under the impression I was going out WITH friends, not that they were taking ME out. They even bought me a drink AND Dessert!!! WHAAAAAT?! Okay then to make my ticker stop they got me GIFTS ... STOP IT! Just STOP it! AND ... cherry on top ... they went around the table and gave me words of encouragement and kindness. Things I don't fully believe to be true about myself, but they do. I cried. I cried because I've never had that before. I cried because I haven't really ever "celebrated" my Birthday since I turned 21. I've never had a dessert plate that says Happy Birthday on it with chocolate drizzle. And I have never seen such ridiculous generosity for someone like me. Whether or not you think I'm deserving is besides the point. I don't feel it and that makes me so much more in awe and grateful. From the bottom of my heart and the depths of my soul I will never forget that night and I will forever be grateful. (Did I mention my friend who put it together made me a BLOCK O CAKE?!?!?!?!?!!!!!! She MADE ME an Ohio State CAKE! #ItsNeverGettingEaten) Plus I have already gotten gifts in the mail ... I'm just ... sigh ... so overwhelmed. In the best possible way but honestly ... God loves me too much. I begged Him not to leave me, but he's pouring down blessings like Noah's comin. I expect it is to help prepare me for the dark times that lie ahead. For me to keep these things in my heart to recall when things are bad.
Thank you Lord for loving me as only You can love. Beyond words. beyond measure and certainly beyond worth. I do not deserve You or Your gifts Lord ... but that does not mean I am not forever grateful. Your mercy and grace surround me Lord and fill my heart to overflowing. I cry tears of joy and thanksgiving lately. Thank you God for keeping Your promise to never leave me. To hold me and comfort me in times of sadness. For being bigger than anything I face here. For being my firm foundation. For being the prodigal father waiting patiently with arms wide whenever I need to come running back. For loving me the same whether I mess up or do well. For being all things I need at all times. Thank you for putting people in my life who are greater than I. The smartest and greatest people in history always surrounded themselves with people smarter and better to help better themselves. You are only as good as those who surround you. And I must be pretty dang good. Amen.
I got a call the other week from the pediatrician's office to let me know they put in an order for us to see the Physiatrist. That's the word. One of my friends got it lol. Called to schedule ... January 11. Guess they're busy. But this appointment will address Hailey's spasticity or stiffness in her body. It manifests itself in different ways. I talked about it in my last blog post if you need to read more, but basically she has to concentrate so hard to do one thing that the rest of her body gets completely stiff. This can be bad as I learned yesterday because as Hailey is growing if her muscles don't stretch they won't grow. Her bones will and the muscles won't follow and could leave her hand and arm permanently limited. That. Scares. Me. I was able to hold it together in PT yesterday, but I was definitely crying on the inside. As a mom you kinda feel like you should know this. Like I should have been stretching her this whole time. Which if I'm totally honest I did try. Not how they are teaching me, but I did other things. I guess I will keep my fingers crossed I'm doing enough and it's not too late.
Another frustrating venture I'm on is Help Me Grow. I can't begin to tell you how many people have told me to contact them. Including the coordinator who met with me in the step down unit at the hospital not long after the dinks were born. (I call the twins Twinkidinks, Dinks for short) So I already knew of them and just honestly I haven't wanted to call. I had to ask specifically "help me with what? How are they a resource?" Because I couldn't understand what they were going to do for me. Well, broke down and called. If for nothing else, I hope they can help me navigate requesting funds and filling out paper work I can't find and won't pretend to understand. Hailey has a clinical diagnosis ... and yet ... they have to come out and do their OWN assessment to determine if Hailey needs help. What? Is that not the biggest waste of everyone's time and resources?? She has been diagnosed. By a doctor. A specialist. That bears no weight?? Nope. Well I was told I'd get a call back same day ... it's been around a week and nothing. Ugh ... no wonder our neurologist said they were stretched thin and may not be able to help. I had to call my original person back today (that is amazing in and of itself that I remembered) and say yeah I never got called. So hoping this works out and turns out they are as wonderful as 500 people have told me they are. So far ... me 1 HMG 0.
The other place I struggle with is my Emma. She is so bright and funny and has so much energy. Honestly, I can't even start to tell you how much stuff I need to do in a day and trying to balance it all is awful. Emma does not get the time or attention she deserves from me. Nor the patience. I struggle every day trying to remind myself to give her time and to enjoy it. It shouldn't just be obligatory but wanted. That's hard when my house is a disaster (yes still) and my time is so limited. That and the fact that I'm averaging 3-4 hours a sleep at night.
Now for the good. Hailey is doing well. I think. I continue to see improvements. As everyone stated and I already knew, we have some days that are better than others. Sometimes she sits and plays so well, it's hard to tell. Other times she throws herself back in a fit and screams. But overall ... we're getting there. Her OT even noticed that she is already eating better! (She had to learn how to chew) She basically was showing off at OT yesterday for a new therapist that was there. I don't think the new woman believed Breann (Hailey's OT) or I that the things we said were problems were actual problems because Hailey did everything like a BOSS. But again ... still so much that needs addressed.
I turn 31 tomorrow. HAHA I'm old ... and I'm not just saying in years. I have the soul of a 98 year old. Kids today are crazy with their sayings and clothes ... I don't even know what's goin on just as long as you stay off the lawn!!! But seriously, some of my friends got together and bought me dinner at Cheesecake Factory on Monday. That's not cheap guys. I was under the impression I was going out WITH friends, not that they were taking ME out. They even bought me a drink AND Dessert!!! WHAAAAAT?! Okay then to make my ticker stop they got me GIFTS ... STOP IT! Just STOP it! AND ... cherry on top ... they went around the table and gave me words of encouragement and kindness. Things I don't fully believe to be true about myself, but they do. I cried. I cried because I've never had that before. I cried because I haven't really ever "celebrated" my Birthday since I turned 21. I've never had a dessert plate that says Happy Birthday on it with chocolate drizzle. And I have never seen such ridiculous generosity for someone like me. Whether or not you think I'm deserving is besides the point. I don't feel it and that makes me so much more in awe and grateful. From the bottom of my heart and the depths of my soul I will never forget that night and I will forever be grateful. (Did I mention my friend who put it together made me a BLOCK O CAKE?!?!?!?!?!!!!!! She MADE ME an Ohio State CAKE! #ItsNeverGettingEaten) Plus I have already gotten gifts in the mail ... I'm just ... sigh ... so overwhelmed. In the best possible way but honestly ... God loves me too much. I begged Him not to leave me, but he's pouring down blessings like Noah's comin. I expect it is to help prepare me for the dark times that lie ahead. For me to keep these things in my heart to recall when things are bad.
Thank you Lord for loving me as only You can love. Beyond words. beyond measure and certainly beyond worth. I do not deserve You or Your gifts Lord ... but that does not mean I am not forever grateful. Your mercy and grace surround me Lord and fill my heart to overflowing. I cry tears of joy and thanksgiving lately. Thank you God for keeping Your promise to never leave me. To hold me and comfort me in times of sadness. For being bigger than anything I face here. For being my firm foundation. For being the prodigal father waiting patiently with arms wide whenever I need to come running back. For loving me the same whether I mess up or do well. For being all things I need at all times. Thank you for putting people in my life who are greater than I. The smartest and greatest people in history always surrounded themselves with people smarter and better to help better themselves. You are only as good as those who surround you. And I must be pretty dang good. Amen.
