As I mentioned in a previous blog, we began "meeting" other T-18 families over the phone. One mother coined the term "a new normal" and it really made alot of sense to me. Things that are typically not normal for other families have become exactly that for us - normal. Some of these things include: switching out Lucia's feeding tube (which she hates!!!), taking a feeding syringe everywhere we go, using a feeding pump at home and cleaning it out after every feeding (SUCH a pain in the butt sometimes), weekly doctors' appointments, various medical episodes that she's had -- I'm sure there are things that I'm forgetting or things that I may not even realize aren't normal. Part of that is a blessing because we have no other children to compare to, and therefore we don't know what a "normal" child does. [sidenote: I don't really like to use the word "normal" to talk about other kids, as if somehow Lucia is not normal...it just sounds so harsh. I mean I realize she has severe health issues, but I like to use the word "typical" to differentiate -- thanks to fellow T-18 mom Michelle for helping me realize that yes, my daughter is normal, just not typical. Might seem like a play on words...but I guess I've become more sensitive to these things ever since Lucia was born.]
The minute I am tempted to compare Lucia to other perfectly healthy children (often this happens when I am frustrated about something medical or when I am confronted with her developmental delays), I *try* to stop myself and recognize exactly what a friend of ours did when Lucia was born. He called Lucia "our bundle of salvation." In other words, this little girl is our ticket to heaven....She was created JUST FOR US, so that through our struggles and joys with her, we would be purified of ours sins and learn to LOVE more completely and wholly as God loves. She's helping us get to heaven. As perfect a plan as this sounds, (and I'm sure it is in God's eyes), it is really hard - make no mistake about it. Actually, hard is such an understatement....gosh I'm trying to think of a really good word that's way worse than "hard", but the English language is failing me. It is hard, but heaven shouldn't be an easy place to get to. Forgive me for getting all preachy (but in a way, by writing things out I preach to myself too -- and sometimes am surprised by what I know, but need to be reminded of), but Christ had to first go through the agony and pain of the cross before the glory and beauty of His Resurrection. Each one of us has their cross -- ours is Lulu's illness, but not Lulu herself. She is our beauty queen, our angel and we are in love with her!
Just to give you all a glimpse of some of our pains..only because I would really like you to pray for these things specifically (not to feel sorry for us -- please!), here are some things we are currently contending with. Well, first off, as I mentioned Trisomy 18 is a lethal condition in and of itself....many babies don't make it past their first year. While many people have told me, and I have even said to others, "everyday with her is a blessing" (and it truly is - I'm not denying that)... few parents actually live with the reality and the horrible thought that each day might be their child's last here on earth. It pains me just to read that line over. Second, Lucia's heart works really hard because of a really big hole in it, and various anomolies in each valve. Our first cardiologist that we saw told us that "it sucks to be us" ...which wasn't exactly helpful nor kind - that jerk-face. Obviously since then we have wanted to change doctors but are having a hard time with that since all of the pediatric cardiologists at Texas Childrens' Hospital work on the same team (yep, all 48 of them). Lucia is also currently suffering from severe acid reflux. She gags frequently and is typically irritable when she eats. My poor little baby also has one eye (her left) that opens alot less than the other one. A few doctors and our dear occupational therapist have warned that if she doesn't use it enough, she'll lose it.
All of these health issues are typical for T-18 babies. We also learned by talking to parents and reading online that seizures are common, as are hearing and vision loss...though we are still trying to determine if she really has experienced these. What seems to hurt alot too is to know from other parents of T-18 children that are still alive, is that Lucia may never walk or talk....though let me tell you, that her and I have conversations all the time! Honestly, she really does answer back when I say things to her...respectfully of course. ;)
Despite all of these medical issues (and forgive me if I've overwhelmed you-- for me, I'm almost numb to the medical jargon), we do have hope. We believe in a God of miracles, the Physician of our souls AND bodies. We don't know if He will heal Lucia or not, but we pray for it....always careful to conclude our prayers with "according to your will." ...but please could ya? :) I ask you all to join me in lifting up these prayers to God for Lucia's healing....well, kinda silly to ask, because I know many of you are praying for her anyway...and I am so grateful for your love and prayers...really, you don't know how much!
On a hopeful and happy note, we coincidentally ran into a T-18 family at the hospital last week, who happened to have an appointment in the same clinic and around the same time as we did (amazing how these things happen). Their beautiful daughter, a 5 year old, has Trisomy 18, and her mother took one good look at Lucia and told me that my little angel "LOOKED REALLY GOOD." Always a wonderful thing to hear -- especially from one who really knows. Also, Lucia is getting chubby! (for her size of course)..she currently has multiple chins and has started to accumulate some rolls...making diaper changes a little more challenging these days...and I LOVE it! :)
Also, on a very positive note, Lulu has a team of people (besides all those that already love her) that are working with her to make her strong and improve her quality of life. They include an occupational therapist (we love you Tina!), a speech therapist for feeding, a dietician, and most recently, a vision teacher. Thanks be to God for all these wonderful services and how they have all come into our life.
Ok, this entry has been quite long and informative, and honestly, I am WAY ready for bed. Thanks to all for reading again. With much love -- Ramia