Tuesday, February 21, 2012

a long road to go

i love this picture of beatrix....i mean desperately love it.
i looked at it alot this last weekend.

it is tuesday and i finally feel like i can write about our weekend.
where to start...
last thursday i took beatrix to an appointment with a speech pathologist to have her tested. after two hours of testing they determined that beatrix has what is called apraxia of speech. this means that they don't think beatrix's lack of words has anything to do with her desire to speak, but the fact that something in her brain makes it difficult for her to form the words. the speech pathologist told me that it is going to mean years of intense speech therapy. she told me that we have the option of putting her in a free public school speech program 4 days a week for 2 hours a day, or we could find our own private speech pathologist and take her there. as she was talking she began handing me literature on apraxia and my eyes welled up with tears as i looked at bea. and then i lost it. i cried. not the sobbing kind, but the silent alligator tears that wouldn't stop falling. she just kept on speaking as i sat in the chair in her office looking at beatrix and balancing penelope in her sling. i didn't know what to say. the speech pathologist looked up from her filing cabinet and went to get me some kleenex. when she came back with the kleenex she said, "i am not going to scare you with what all of this means right now, but the important thing is that you know this is going to be a long road for your family and for beatrix. it will mean years of intense therapy and a lot of hard work. the important thing is that you are here now and we are going to get her some help." after some more talking we left the office and we went to our car. i sat in the front seat and nursed penelope while bea had a snack and i called matt. i was devastated and i didn't even really know what it all meant for us yet.

i put penelope and beatrix in their seats and then i started driving. as i drove i cried some more. i guess i was wondering what the worse case scenario meant. would she ever talk to us? how were we going to take her to therapy with only one car? how would we pay for it? i felt like my life had just been totally disrupted. i wondered if it was my fault. if i had caused it in some way. was it because she fell off the bed when she was a baby? was it because i didn't work with her enough on her words when she was 2? what had i done.

i talked to matt again during his lunch break and he asked me more about it. i told him all that had gone on during the session with the speech pathologist and he told me that he had already talked to his principal and she was researching all of our options too. i cried some more and he just listened to me. over all he was incredibly optimistic and encouraging.

later we went to pick up matt and micah from school and as matt was leaving to go teach at PBA he hugged me and said, "we will get through this lydia."

that night when he got home and the kids were in bed we sat outside and talked all of our options over. the kids insurance had just been canceled a couple of months earlier because they had raised the cost from $20 a month to $320 a month. i had figured that since the kids are rarely sick and only went to the doctor once a year that we would save money every month in a medical fund and just pay for their yearly check ups out of pocket. now, with private speech therapy possibly on the horizon at $40 to $100 a pop i told matt that the $320 a month for insurance wasn't sounding so bad. i had numbers and scenarios and money running like mad in my brain. i couldn't silence the questions going round and round. matt just said that he had faith it would work out and that God had provided for us in the past, he trusted that God would provide again. i was too sad to really talk any more about it and went to bed.

friday i got a text from matt that he was having a harder day and that he thought the shock might be wearing off. when he got home from school i found out that he had shared the news about bea with one of his classes and they had all prayed for him and a couple of the students even wrote him very thoughtful notes. he had also called his dad to talk to him about it. beatrix woke up that night with a horrible fever and a sore throat. she ended up in bed with us which i don't think we minded at all. it was nice to have her close.

saturday we didn't say much to each other. we kind of walked around the house in a daze. i took penelope to run errands and i was thankful that i had gotten popsicles because that is pretty much all beatrix ate all weekend. i think every time matt looked at her he felt like crying... i told micah about the situation too and he said that he would pray for her. i know he will. saturday night i was able to go for dinner with a friend. it was good to get out of the house and sit and talk to her about music and art and church and anything else other than what i was thinking about. i was so grateful for that time.

sunday we stayed home from church because beatrix was sick and i was just plain tired. i ended up going on a walk with micah early that morning since we were the only two awake...well, we took pips too. i walked behind him with my camera and just took pictures of him feeding the ducks and being happy. it was a beautiful morning. i could tell matt needed to get out of the house and so that night he met our pastor and they were able to talk about a ton of things. i knew he needed support that i just couldn't offer him. a listening ear is about as close to God like as a human can get.

monday was presidents day and again we laid low. matt took beatrix to home depot and micah and i went on another walk around the lake. there is something so healing about the water. i don't know what exactly, but i have said it a million times. it centers me. monday night we discussed money a bit. i hate talking about money. i mean really hate it. conversations about money have so much potential to just explode.

tuesday i was planning to take matt and micah to school again so i could have the car to take beatrix to another appointment. i over slept though and so matt came back home to pick us up during his planning period. i didn't have time to feed penelope before we left so i sat in the car in the parking lot at his school and fed her. she smiled at me so sweetly in between nursing and then when i sat her up to burp her she proceeded to throw it all up on me, her car seat and beatrix's hand across the seat. i had brought a change of clothes for the baby, for beatrix, but i had not brought a change of clothes for myself. i sighed. cleaned penelope and bea's hand off and buckled them back up again. i arrived at the appointment a little late and not caring one little bit. i already felt like sobbing and it was only 9 in the morning. the appointment went well. she did a great job, but again i wanted to answer the questions for her. i knew she knew the answers she just couldn't say them. it was so frustrating to watch. the speech pathologist kept asking her to look at her mouth while she was speaking and bea kept looking away. her confidence with other people is non-existent. she knows that i understand her, and matt and micah do and that is it. she doesn't trust other people. i pray that changes.

at the appointment i found out that the school she would go to would be a lot closer than what we had initially thought. it was such an answer to prayer. when we got home from the appointment i talked to another speech therapist on the phone who gave me all kinds of wonderful advice. then i talked to a friend all about it and then i talked to another speech pathologist named rhonda who is very interested in working with beatrix. she was recommended to us by a dear friend and she is a christian. the awesome thing is that she offered to do it for $30 for a 45 minute session which is totally doable for matt and i to pay for. she works with the school program in the summer and spoke very very highly of it. she told me that she thought beatrix would have a blast and wouldn't even know she was learning. it really set me at ease. she also said that she would like to come to the house and just have a cup of tea or coffee with me to observe bea and watch to see how she and i interact and to see if beatrix would bond with her. that was an answer to a personal prayer of mine i had been praying ever since we had gotten the diagnosis. all i cared about was that whoever worked with bea would desire a relationship with her and really come to love her. i want her to feel as safe as she can with all of this.

after i got off the phone i could tell beatrix was upset. i asked her to do a couple of things and she flat out said no. she looked right at me and said, "no!" i asked her several times to obey me and she wouldn't so i sent her to her room where she proceeded to scream at me and "tell" me off. i could hear her getting madder and madder and madder with shouts of no mama, no mama over and over. i finished feeding penelope and put her down for a nap and went in to talk to her. i laid down with her and looked right into her face. i said, "honey, are you tired of mommy talking about you?" she shook her head yes. sniffle sniffle. "does it make you sad when mommy talks about you?" another nod. i decided to tell her the truth, "beebs, do you know who mommy was just talking too?" she shook her head. "that was your teacher. mommy and daddy have decided to put you in school. like micah." her eyes lit up with this. "we want you to have some help so that you can talk to mama and daddy better. would you like that?" she nodded yes. "do you know what sweetheart? it doesn't mean that anything is wrong with you though. we love you very much and we are happy that you are in our family. we just want to have some help that is all." she looked so relieved. "but i still need you to listen to mommy and obey me when i ask you to do something, ok". she nodded and then i was able to lay with her until she fell asleep. my heart broke because for about the millionth time i wished that she could tell me how she feels...

when i think about all of this i struggle with feeling so desperately sad for her and then i swing back up the to the other extreme of minimizing it all and telling myself that it really can't be as bad as i am making it seem. but these situations remind me that it is. it is bad. she can't tell me what is wrong or what she is thinking and that really really sucks.

i feel like i am trying to keep it all together and all i have is hope. hope that she will find her voice. if it isn't her verbal voice that is ok, we will learn signs. i just want to have a conversation with my daughter, whatever that may look like.

1 comment:

Missie McGovern said...

I just wanted to let you know that you are in my prayers. I have a son with very similar symptoms as your sweet B, and although his are because of a cleft pallet, I do understand the sadness and frustration. I'm so glad I was able to find your blog, sometimes just knowing that someone else understands is so encouraging. So thank you. And God Bless