i run to the computer any chance i can to read more about this sma.
i started my own journal in a notebook to remember everything i can but i figure i writting to others helps me vent- be a little free in what i say.
im scared. im angry.
i asked the doc. this morning what would happen if i just took her home today- not good.
she needs help. she is intibated, has a feeding tube and a suction tube. she is getting chunky-er... ryan and i were able to help give her a sponge bath last night. we were soooo excited. i think she liked it. i was able to hold her for a short time which was more than i could dream right now. i miss holding her. i miss playing with her. she doesnt look like she is in pain right now which is all i could ask for her. ryan stand over her tiny body and cry- she looks at us and says- 'hey, im the one laying here with tubes and iv's why are you crying?'
she trys to smile under it all. her bottom lip is all we can see. her nose will crinkle at times. i hold her hand and rub her head. i try to comfort her and let her know im here. i told her last night i dont care what she can or cant do in life, i dont care what she looks like i will love her and think she is perfect. i hope she knows that. my heart hurts all the time. i go through moments where i feel its not real. i have more than once pinched myself and prayed to God that i wake up, this cant be real. i soon realize i need to get over myself. its not about me. i need to be here and strong for her. we will have more testing done tomorrow. they gave her a break this weekend. she has been poked and druged enough for now. ryan is my rock. i find myself falling into his arms all the time. i have never prayed so hard. i will never take for granted my child. every little thing she does will mean the world to me. she is perfect. the hospital is freezing.
our family and friends are amazing. we couldnt go on without them. their love is so great. i cant stop crying so i better go. i have a few more things to look up and i need to go back to our new home and see my daughter.
GOD i wish i could take her home.
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12 comments :
I just want to hug you!!!!!
I know I keep telling you this but if there is anything we can do for you all it takes is a phone call. We will be there for you guys with whatever you need. We are praying for you all.
Kendra,
i love you so much! i just started crying right when i found out. we are praying for you guys. love you always.
Catherine
I can't even imagine how hard this must be! I'm so sorry you are going through this! Makenzie is such an amazing girl, and she sounds like she is being so patient, and strong through all of this. We pray for her, and you, and Ryan, that you will all be strengthened to endure this experience.
I love you and Ryan and Kenzi so much. You all inspired me yesterday, you are so strong and have the right perspective. Kenzi is lucky to have amazing parents who are so there for her and love her unconditionally.
I am bringing you our laptop to keep while you're in the hospital. There is so much for you to learn and people to connect with right now. It's the only thing I can think to do to help.
I love you guys. My heart is breaking for you.
Kendra- I am thinking about you, Ryan and Kenzie!
HUGS. We are praying for you.
Kendra,
I know your heart hurts all the time. Let it, but you are right you have to stay strong. Strong at a time when you feel so helpless is tough.
When we first found out about Chloe it was a nightmare. I kept praying that everything would be o.k. That Chloe would be the exception. I wanted to protect Oby and Tara and I couldn't.
I felt like my head was in a whirlwind. I would pray, look things up on the computer, (sometimes not a good idea, but I couldn't stop) hang on the Dr.'s every word. I know that is what you are doing too. If you can though just breath. Be still and take it all in.
Excepting what is going on will be one of your toughest challenges, yet it will bring you peace. The Lord is with you. (you may not feel like it) He is watching over you, Ryan and the baby. As days go by you will realize just how much he is with you.
Chloe is the sweetest blessing I think I will ever know. I am so thankful for that little girl and what she teaches me. I am so thankful that I have been able to love her.
Take care of yourself. I am so thankful for you that Ryan is your rock. He is a very tender hearted good man. I wish there was something that I could do to help you two.
Hang on to eash other.
Love,
Tami (Oby's mom)
Kendra - I can't tell you how sorry I am that you guys are going through this right now. I wish there were something I could do to make it all better, but I know I can't. But, if there is anything at all you need - I would be there in a second to help you - all you'd have to do is ask. Stay strong and remain hopeful. I am thinking of McKenzie - and of course you.
I know that you are getting the same message from everyone else. I know that I send you a text almost everyday and tell you how much we love you and how often we think about you all. I miss you all very much. I know that no matter what the out come in we will all love kenzie the same. We all remember her smiling face. You are the strongest person that I know and this is nothing for you to over come. You are being so strong and I admire you and ryan both for that. I love you more than I can express in this comment please please please let me know if you need anything, anything at all. Even if it is just a familar face at the hospital I am more than willing to come see you.
Kendra I'm sorry about everything. I know we were never close, but if you need anything, ANYTHING at all you let me know! Whether it is a food run, dog sitter or just a hug you let me know! ALRIGHT?! 801-884-3211-- Kaily Wilson PS. Don't be afraid to call or text at anytime ok?!
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