it's been a very difficult 13 months for us since kaia was born. i've told you bits and pieces along the way about kaia's health problems, but there's been a lot more that's gone unreported. the longest kaia has been healthy throughout her entire life is six weeks. JUST SIX WEEKS. and it's not any one thing, it's LOADS of things. pneumonia, roseola, ear infection, bronchiolitis, thrush, about eight zillion colds and so on. last week we found ourselves in the ER because kaia wasn't breathing well. they gave her steroids, put her on a breathing machine and shoved tubes in her nose. in and out of the hospital since then, with a breathing machine delivered to our home. thursday they drew oodles of her blood (a horrifyig experience) to begin testing for immune disorders and a slew of other scary things.
i'll be honest. i'm not doing super awesome with all this. i'm tired, i'm drained and i'm terrified. it's difficult to keep my imagination in check. what if all of this is coming from some awful underlying problem? what if we're one of "those families" with a terminally ill child who practically live in hospitals? WHAT IF WE LOSE HER??? not having answers is just about the worst part. not knowing how to help her, not knowing where it's all coming from, not knowing when/if it will stop. because we don't know a lot about her current illness, her doctor has advised that we not be around other people, especially children. this, combined with the fact that we have no family nearby, has led me to feel intensly lonely and isolated. not going to our weekly playdates and various playgroups means that i'm not getting time to talk with other moms, processing all of this with women who can be sympathetic and compassionate. it means that EVERY SINGLE DAY is comprised of being with a precious child who has been fully entrusted into my care...who i can't heal. i am face-to-face with all my weaknesses, failures and shortcomings at a time when those things impact the life and well being of my sweet baby girl. the days are long and intense. i'm just not sure i'm cut out for it.
throughout my life i've looked to my friends to serve as the family i lacked. this last year i have been even more grateful for those people in my life who have become my chosen family. the people that will pray for kaia and for our little family. the people who call or text to see how the day is going, if her breathing has improved since yesterday. the people who make a point of remembering the exact time of her next medical appointment or procedure. there aren't a lot of these people in our lives, but i know that i can call them any time of day. i know that when they say they're going to pray, THEY'LL PRAY without ceasing. they'll come and just sit with me, watching television and drinking wine and talking or not talking, when there are plenty of other places they could be having fun.
i am thoroughly grateful for these friends of mine. as hard as these 13 months have been, i'm convinced they would've been infinitely more difficult without the support and love of our close friends. so, thanks friends...for bringing ice cream or coffee or dvd's or lunch to the ER. thanks for the text messages and words of hope. thanks for loving us through these times.
last thing (i promise)- since kaia can't be around people right now, we couldn't do anything with her for halloween. this was particularly sad because she had picked out (ie started chewing on in the store) a super cute halloween outfit. so, we used a coupon for a free professional portrait to have a record of this holiday, and i'm sharing it with you so that SOMEONE will have seen them and uttered "how cute" or "awww." we couldn't afford to buy any, so the pictures have that watermark thing because i just lifted them from the website.