DQ

The majority of my entries have dealth with issues relating to TP, my 17 year old daughter who has chronic lupus nephritis. I DO have another daughter, my Drama Queen, who is 14 going on 30. She's quite the character, to put it mildly.

She kind of dropped out of the heavens and into our lives one day. I remember the day perfectly. I had just returned from a morning visit to the zoo with TP- it was a gorgeous morning at the very, very beginning of March. TP was almost three, and I recall thinking as we walked around the zoo how much I loved her, and how I didn't want anything to happen to change the special bond between us. And then, that very afternoon, I received a phone call from our lawyer. Totally unexpected. I can't really go into too much detail here in order to protect DQ's identity (both of our kids went through a closed adoption) - but suffice it to say, we were parents again within 10 days of that phone call! And the rest, as they say, is history. . .

DQ has always been very bright - she's extremely intelligent. I'll never forget how I had been reading some new books to her one evening when she was four, so I picked up a book she had never seen before, and I said to her "Here - why don't you read this to me?". So, she took the book into her tiny hands, and opened up the book - and she actually began to read. I was so dumbfounded, I didn't know what to say at first. Finally, after about 3 pages, I said "DQ - how long have you known how to read?". She smiled and said "For a long time, Mommy - but I like it best when you read to me!". So, who knows how long before that she had actually been reading. She absorbs everything she hears, reads, and watches. One morning when she was in first grade, she said something to me (I don't recall now what it was), and then she said "Mom, is that an example of an idiom?". I just looked at her, then stretched back into the recesses of my mind to remember the definition of an idiom, then told her that yes, indeed, that was an example of an idiom.

Her intelligence is a blessing, but it can also be a curse. Because she is so bright, the expectations by her teachers are, to some extent, beyond her abilities. You see, she also has ADD (not with the hyperactivity component - but the inattentive kind with an inaiblity to focus and stay on task). You can imagine the difficulties this has placed not only on DQ, but us as her parents, too. I will write more as time goes on about this topic, as I know it touches quite a few parents and children out there - and I want to tell them right now that having ADD is NOT your fault. Enough said for now.

DQ has also experienced much cruelty from her peers over the past two years. Sometime in the next few days, I will post an entry about her experiences in 7th and 8th grade at a supposedly Christian school. She is biracial, and she had never experienced any kind of prejudice or racist remarks or treatment up until she entered the 7th grade. She will not be returning to that school this fall, but the past two years have been pure hell for her (and, for the rest of us, too).

DQ is aptly nicknamed the "Drama Queen" for two reasons. One is that she truly puts a lot of drama into her actions and reactions, and two, she wants to become an actress and a director. I have mixed feelings about her desire to move to New York and make it big someday - all I can tell her right now is that she WILL get a college education before she does anything else.

She's a very sensitive child, and has seen her sister suffer with lupus. This was very frightening for her to watch. Couple that with all that was going on in school over the past couple of years - and she certainly has been through a lot.

Through it all, both of my girls have developed a deeper relationship with each other, with us, and with the Lord. My husband and I have been blessed with these two young ladies, and I am proud to say that "I am my kid's mom!".

No Title

I changed my mind - just for tomorrow - about writing for God's Gals. I have something written up, but I have been having "technical difficulties" when I try to get on the website in order to type it up for tomorrow's entry. Hopefully, this situation will get resolved.

I am still vascillating between wanting to write versus finding the time and being able to write. So, I promised Heather that I would give her a definite answer about whether or not I will continue on by the beginning of next week. My heart says "go for it", my schedule says "what - are you nuts?".

By the way - wonderful news about Sara - again! Her labs were "perfect", so they are now reducing her Solu-Medrol infusions to once a month. Last year at this time, we were doing them three times a WEEK. We are all so ecstatic! And we thank God for this wonderful gift of health!

The Results are In

The procedure went well at the hospital yesterday, but we ended up staying there a lot longer than we had anticipated because the endoscopy clinic was "backed up" - I kid you not, that is how they described it (stop and think - this is also the place where they do colonoscopies - need I say more????).


Anyway, what should have been a 3 hour process at the very most, ended up being a 6 hour process. The ERCP was scheduled to begin at 1:00, and it didn't start until 3:15. They gave TP some heavy duty meds to combat the nausea, so it took her an extra long time to wake up. By the time we left, it was after 6:00p.m. - almost 24 hours since she had anything to eat. We ended up stopping at Bob Evan's, where she devoured a turkey dinner in no time flat.

The doctor gave us absolutely wonderful news - the stent was able to open up the stricture almost all the way, and he was very pleased by that. It looked "clean" in there, in the sense that there was no pathology noted, except for a tiny bit of "feathering". He did state that he thought this was all related to the lupus and the autoimmune process, so who knows if this will occur again, and he refused to predict if it would. However, we will monitor her liver enzymes every 3 weeks from now on, so that we can catch it right away. If it does happen again, it will be treated in the same manner, with the stent. He wouldn't want to do surgery on it, because then that causes all sorts of other problems. He mentioned a couple of other possibilities which could happen to her as a result of the stricture, but I am not even going to consider those things right now because there is no use worrying over "possibilities" at this point in time. That is all in God's hands, anyway.

So, today was a day to get caught up around here. There is something so comforting to housecleaning, in an odd sort of way. It's not exactly fun, but there are definitely tangible results, which give me a sense of satisfaction. DQ was a HUGE help - and she was actually cheerful doing things for me. I think she sensed my change in attitude about some things - which I will share more about in a different post.

Thanks for your prayers and support - I appreciate it immensely! I am finding so many new friends out here in cyperspace - and each of you are a blessing!

Decisions

TP has another endoscopy (ERCP) tomorrow, this time it's to take the stent out. That's a good thing, but I am a bit nervous about it because she's been doing so well with it in. I am afraid that once it's gone, then the stricture will narrow again, causing the same problems as before (the elevated liver enzymes and intense itching). So, then they'll need to do yet another ERCP to put in another stent. A complication of this procedure is pancreatitis, which she already developed after the first one. I'm going to have a nice long talk with the doctor about this tomorrow. Not only is this risky in terms of her health, but even after our insurance pays, we end up owing $500.00. She's worth every penney, but our medical bills are beginning to mount.

Being a parent of a chronically ill child can become exhausting. And, that feeling has become particularly overwhelming this summer, what with all the procedures she has had. The brief respite of vacation was wonderful, but I find myself increasingly becoming "burned out".

I have also decided I need to increase my hours in my private practice. So, I need to devote more time to "growing my business". I am in the process of putting everything on a computer (finally), which is also time consuming.

DQ is starting her freshman year at a new school in a few weeks, so I want to become involved in some groups there, too. Plus, it's TP's senior year, so we are in the process of "interviewing" colleges, plus seeking out scholarships.

So, perhaps you will now understand why I have come to the decision to back out of God's Gals for the time being. I think I got caught up in the excitement when I was asked without looking at it realistically, and for that, I apologize to the other women for pulling out so soon. However, I will look at how things are going after Labor Day, and perhaps I can contribute a story once a month then, rather than every week.

Blessings to all. I'll let you know how the ERCP goes tomorrow. Please keep TP in your prayers.

God's Gals

I have been asked to be part of a new and exciting blog called "God's Gals". It was Heather's brainchild at www.thismomslife.com . It is an honor to be involved in this blog. My entries will appear on Saturdays -the first one is tomorrow, and I am a little nervous about it! Check us out at www.godsgals.com. Please read our mission statement, and leave your comments, too!

Oh - by the way - I am completely illiterate when it comes to computers, so my husband will be showing me how to do the linking to other websites, etc., this weekend. Please be patient with me - this is a brand new world for me!

Blessings ~
Valerie

Losses

TP's boss called last night, and said that her 7 month old daughter had died a few hours earlier. While this phone call was not unexpected, what happened both during the phone call and afterward makes me realize yet again what a keenly sensitve daughter I have, who feels pain and love very intensely.

Jamie was born prematurely, with many medical problems, but who fought valiantly to live. She was a beautiful and precious child of God, and TP instantly fell in love with her. The medical problems progressed ever so slowly, and there were good days, which renewed everyone's hopes that Jamie would somehow, miraculously, live. But the body failed her fighting spirit, and now she is forever an angel with Jesus.

Intellectually, TP knows that Jamie is out of pain now, and in a far better place. When I was listening to her talk to the Jamie's mom, I was astounded with the comforting wisdom that came out of her mouth. I thought to myself "This kid is going to make a great nurse someday". And she will, when the time comes. But right now, she is so caught up in the pain and sorrow of her friend losing a such a young child. And, it brought back to her the memories of her friend who died last year at the age of 17. After the phone call, TP hung up, looked at me, and said with huge tears in her eyes "Why - why - why does God have to make parents lose their kids??? Why does it have to hurt so much? Why did He let Jamie come in to this world, if only to make her leave here so soon? Why did he have to make Nate sick and die so young?" I didn't say much, just comforted her.

Later, before going to bed, we talked about Jamie again. We discussed the "why's", and the pain and suffering of the world, and our faith. Just trying to make sense of it all. TP admitted that she wondered about her birth mom, and how painful it must have been for her to give her up for adoption. Again, many tears and questions came out - and some pent-up feelings of anger and loss. I thought to myself "This was Jamie's gift to you, TP, for you to be coming to terms with being adopted, to experience healing over the loss of your birth mom, and all the other losses of your young life". TP's sensitivity to others losses are because she feels her losses so profoundly, and thus she is able to have empathy and compassion because of her pain.

After tears (hers and mine), I tucked her into bed. I told her the story about my "talk" with God last year when she became very ill for the first time. It was an absolutely beautiful spring morning, and I was on my way back to Children's Hospital. I was thinking about all TP had endured thus far - the kidney biopsy, the surgery to put the port in her chest, all the countless and painful needle pokes, her humiliation of having a complete stranger see her body naked during thorough examinations, the indiginities of vomiting (and missing) into a emesis bowl - all of that and much more. I was pretty bold, and I asked God "Why TP - she's just so sweet - why will she have to be burdened with lupus the rest of her life?". Of course, there was no answer. So, I asked "Why me? Why do you want me to have to go through watching her suffer like this - how can I possibly be strong enough to help her through all this?". God then answered, "Val, I chose YOU to be her mother 16 years ago when she needed a mother to love her and nurture her. The reason why I chose you then is because I knew what was in store now, and you are the one whom TP needs to help her through this. All you have to do is trust in me to give you the strength to carry on". With that, I said to the Lord "Amen, thy will be done - I am your servant, and I am ready for this cross". How humbling - God trusted ME to comfort and give TP whatever she needed to help her through this. Later that morning, as I was wiping TP's brow after she had been sick, she looked at me and said "Oh Mom, I love you so much - thank you for being my mom". When I told TP this story last night, she began to cry. She had a little bit of her answer now as to why she was adopted - and with that, she smiled and gave me a hug, and closed her eyes to rest.

My baby has been through so many losses at such a young age. And she is becoming such a strong young lady. With God's grace, she will continue to grow in His wisdom and love. Thank you, dear Lord, for entrusting her to me.

'CHRISTIAN' AGENCY WON'T ALLOW A CATHOLIC COUPLE TO ADOPT

Say what???

There is a news article today about an agency, Bethany Christian Services, who refused to place a child with a Catholic couple. A spokesperson from the agency says it doesn't place children with Roman Catholic couples because their religion conflicts with the agency's "Statement of Faith". In part, the Statement states, "As the Savior, Jesus takes away the sins of the world. Jesus is the one in whom we are called to put our hope, our only hope for forgiveness of sin and for reconciliation with God and with one another". How does that conflict with the Catholic Church teachings????

Out of curiousity, I took a peek at their website, www.Bethany.org. I glanced through their job openings section, and looked at their Equal Opportunity Employoment statement. It reads as follows: "Bethany Christian Services is an Equal Opportunity Employer. Bethany Christian Services will not discriminate on the basis of race, color, sex, age, national origin or disability". So, they will discriminate on the basis of religion??? Not only for employment, but for placements as well!!!!

This infuriates me, as an adoptive mom and as a Catholic.

I am not normally a litigious kind of person, but I would be hiring a lawyer if this happened to me.

Christian???

The Floodgates Opened

For the first time in over a year, all of TP's labs are normal! The doctor is thrilled, we are thrilled, and it's now time to celebrate! I am not sure what we are going to do, but whatever it is, it will be TP's decision on how she wants to do it!

This couldn't have come at a better time. TP and I had a lengthy talk yesterday about how she doesn't want people to ask her how she's feeling, because it makes her feel "not normal", plust it just reminds her all over again that she has a chronic illness. We discussed how she wants her medical situaiton to be handled from now on, and I totally supported her on her wishes. She has been through hell and back in more ways than one, and she just wants to get on with her life.

What started our whole discussion was a rather comical incident (well, it wasn't exactly comical while it was happening, but in retrospect, we can see the humor in it and laugh). The IV drip for TP's Solu-Medrol meds was going sooooooooooo slowly. Painstakingly slow. To the point that I wanted to squeeze the bag to make it go quicker - but that is a big No-No. Anyway, TP is getting more and more upset by the minute (when she does that, she gets very oppositional and fatalistic about stuff - she says things like "I am NEVER going to have Solu-Medrol again" or "I don't care if this is saving my kidneys and my life - I am quitting all medicine as of right now) - and so you can imaginie how all of that is making me feel. Not very nurturing, and wishing I could be at the beach with a margarita (and I don't even drink). Anyway, I came up with an absolutely brilliant idea of changing the tubing on the drip, as it seemed as though it was the clamp which regulated the flow that wasn't functioning properly. That idea is a good one, providing you remember the theory about gravity. Once you pull a plug, things have a tendency to go downward - which is exactly what happened here - so all of the meds spilled onto the carpet!!! If I had been thinking more rationally rather than emotionally, I would have remembered to tilt the bag UP while changing the tubing so as to not let the contents spill out. Of course, I got overwhelmingly upset, and TP knew that (unfortunately). Later, when I finally calmed down, and I went into her room and said "It would have been more helpful if I had remembered my science lesson" - and she knew exactly what I was talking about - and we started to laugh. So, the air was cleared, and a lesson learned.

It's amazing how a person can cope for a really long time under very stressful circumstances, and then, have just one thing go wrong, and the flood gates are open. But this "flood" (literally and figuratively) allowed TP and I to be able to talk about how she wants her illness to be handled from now on. I keep forgetting she is almost an adult now - so our roles are changing.

DQ and I had fun today while the car was in the shop. We spent a lot of time at the bookstore down the street from the repair shop - and some money, too, I might add. She delights in reading so much - and she is anxiously awaiting the new Harry Potter book. I read an interesting blog entry on The Anchoress site today about the Pope's comments against this series. She hit the nail right on the head - it was what I've been trying to say to some of my friends all along, but I didn't quite have the right words to say it.

Tomorrow, we visit Ashland University for TP - I am hoping they have "blue light specials" on their tuition or dorm fees. I just can't get over the cost of a college education - and I honestly don't know from where the money is going to come. Her GPA is outstanding; her SAT and ACT scores are average (she's never been a good standardized test taker); she may get scholarships, but what about the 2nd, 3rd, and 4th years of college??? DQ is quite the opposite - she scores off the charts for those kinds of tests, but she struggles at times with her schoolwork due to her disorganization and inability to stay on task.

This humidity is killing me - my headache is getting worse, so I must sign off for now.

Life Changes

A friend of ours has a 23 year old daughter who was diagnosed with cystic fibrosis when she was 11 years old. Today, she has undergone a double lung transplant. I don't know many of the details as of yet, but I do know she is in ICU right now and "doing well". They got "the call" last night that the lungs were available. The whole family is in our prayers - for strength and healing over the next few weeks.

TP will have her stent removed in a couple of weeks, after which they will monitor her progress and see how she responds. I am somewhat reluctant to have the stent removed, as her labs have improved and she is feeling much better. But, the stent was only a temporary measure to begin with anyway, so I guess I'd rather do it now before school starts again, just so that we can have some time to see what happens. Hopefully, I will hear from her other doctor tomorrow about whether or not we can decrease the prednisone even more. I am a bit worried about the pancreatitis, as I don't want it to cause her to become diabetic. At the same time, I don't want the lupus to rear its' ugly head again. Oh dear. . .

DQ is getting nervous about starting a new school in a few weeks. Poor thing - she's been through so much the past couple of years, too. But, she seems to be doing so much better, and I think the new school will open up so many more opportunities for her. I am just praying that she will be accepted for who she is, and that she won't experience the kind of ignorant and hurtful treatment she received at her last school. I haven't even began to write about that whole debacle yet - probably because it's just too wraught with emotion for me.

Despite all the difficulties we've had recently - what with the job loss, the loss of our financial security, health problems, school problems related to the school environment - I am still so very, very aware of how blessed I am with being given the opportunity to be a mom to these two awesome young ladies. They have brought so much love, joy, and laughter into my life! They have taught me how to give when I didn't think I had another ounce in me to give; they have taught me how to love so much that it takes my breath away; they have taught me how to come to peace with my own childhood; they have taught me how to be me - a mom!

Tomorrow is my first official day on my diet! I MUST LOSE AT LEAST 30 POUNDS. And I pray nothing gets in my way of achieving that goal. I also have to be a role model for Sara as she battles her own weight problem due to the prednisone. If I won't do it, then she sure isn't going to do it, either. I am going to need lots of help with this one, Lord!

Life is never constant, except for the love God has for each of us. Let me accept that love, and use it to help me through my day.

With Gratitude

TP's procedure went well yesterday. There were no tumors, and for that, we are eternally grateful. It was discovered that she has pancreatitis. I am fairly certain that it is related to the high doses of prednisone and Solu-Medrol which she has been on over the past year. I'd like to have a case conference with all the doctors involved in her care to discuss where we go from here. I want to know how they will treat the biliary duct stricture, the pancreatitis, the severe anemia, and the lupus nephritis (which is currently in remission). Her main doctor at Children's is out of the office until Tuesday, so we'll just wait to see what he says about all of this.

So, the scary part is over, and thank you, Lord ,that there is nothing more "serious" going on with her medically. TP took it all in stride - the doctors and nurses just love her. She is going to make a great nurse or doctor herself some day! We are now actively researching colleges, and making appointments for tours and discussions with financial aid officers and academic counselors. She is going to "shadow" a nurse and her main doctor at Children's in the next two weeks to help her make up her mind about which profession she wants to pursue.

Today's been a busy, productive day with the girls - washing cars, washing the dog, cleaning bedrooms, etc. - how I love the "normalcy" of these kind of days. I am grateful when my life is "boring" like this!!!

Vacation is Over - Back to Reality!

Ahhhhhh - vacation!

What a wonderful treat it was - spending time with friends and relatives, going to the beach, being with my girls and my hubby without having to worry about a schedule. It went by much too quickly, but each moment was savored and relished. I am so grateful that we are able to stay at Nana's and Papa's place on the beach - it is so beautiful and peaceful. It stays light out until 10:00, and even by 11:00 the western horizon still is glimmering a little.

I have now lived in Ohio 25 years - I had lived in Michigan 26 years. Almost half my life has been spent here, yet I still call Michigan "home". I am so connected to my hometown - most of my siblings still live there, my parents are buried there, and, of course, the in-laws live there (as well as a few of their sons). The memories are abundant - some are wonderful, others not so good - but all have been altered slightly by time and a change in perspective. The girls are actually fascinated now with tales of my childhood and teenage years - I know they can't believe I was actually a teenager at one time, and I can't actually believe I am not a teenager any longer!

Anyway, the relaxation did wonders for all of us. It was truly just what the doctor ordered. We arrived back home on Sunday; then, Monday was the 4th, and we had company for dinner after which we went to the outdoor concert and fireworks. We are now slowly getting back into a summer schedule of sorts.

But then there is tomorrow. . .

The day of yet another endoscopy for TP to see what is causing the biliary duct stricture. Of course, I understand that this is only a precautionary measure to make sure that there is no pathology going on, I know this at a professional level, but the Mom in me is still afraid and concerned. I try not to focus on the "what if's", I try not to read all the medical info on the web. I try to stay focused and upbeat for TP's sake, I try to let go and let God. Oh please, dear Lord, keep her safe tomorrow. Please let the test results come back negative. Please let the prognosis be good. Please let the course of treatment be not too invasive or toxic or horrendous, as she has been through so very much this past year. Amen.