It's a merciful life

It's a merciful life

Sunday, August 10, 2014

That black box warning

I have written before about how hard it is to give my sweet Hannah Joy a medication with a black box warning. Any child receiving chronic transfusions has to receive some type of medication to remove the consequences of those transfusions. Otherwise, the consequences will eventually kill. We essentially have two medications to choose from. One is a pump, worn for 10 hours (while sleeping, in Mia's case) infusing the medication by needle. The other is the medication which is crushed and put into food, which carries the black box warning. There is one other medication recently approved by the FDA, but our hematologist does not recommend it. This is because it requires weekly blood counts due to a side effect which can make the person prone to serious infection and death.

The medication with the black box warning has that warning because it causes very serious side effects, sometimes leading to death. Side effects like kidney damage, including kidney failure; liver failure; GI hemorrhage. Over the past few years, I have come into contact with parents whose children were hospitalized due to side effects from the black box warning medication. One mother told me how her daughter almost died from multi organ failure. I heard this before Mia even came home and I would need to make that decision about which medication to try. In Mia's case, it was easy. We tried the black box warning medication, which did nothing to help her. Our hematologist said that this is the case in 1/3 of patients, so Mia is just one of them. She had to switch to the pump. There was no choice. Mia handled the switch to the pump beautifully. She tells anyone who asks she prefers the pump. She hated the nasty tasting black box medication, and would prefer having a needle inserted into her thigh for 10 hours each night. Other parents' children have not had multi organ failure, but have had hospitalizations. Some for vomiting blood after the medication had eaten away at the child's GI tract. Others for severe abdominal pain. Some for kidney issues. All of these parents had to stop the black box medication and change their children to the pump.

Hannah Joy's hematologist told me that they carefully monitor for any signs of side effects, which brings a tiny degree of comfort. I have also learned that there have been children, and adults, who have taken the black box medication for 8-9 years (it was only approved by the FDA 9 years ago) and have had NO side effects at all. None. There is some comfort in that too.

Hannah Joy hates needles. She has been traumatized by insertion of her IV's, and now expects multiple pokes even when the IV is inserted on the first try for a transfusion. She tries so hard not to cry. But it hurts her. The thought of needing to poke her myself, every night, to wear the infusion pump is a thought that no mother should have to entertain. I am supposed to comfort her when she is hurt. Not cause the hurt. And yet, could I be causing harm when I crush up that medication and feed it to her in her ranch dressing or ketchup?

There is no clear cut answer for this one. No easy answer. Without a doubt we need more medications to choose from. Medications which are both safe and effective. Medications, which don't carry that black box warning or require parents to traumatize their very young children. Even better would be a cure for thalassemia, and other conditions requiring regular blood transfusions.

Tuesday, August 5, 2014

Hope

It's funny how long ago our vacation seems, when in reality it was just 2 weeks ago when we relaxed and rested in Florida. I think back, and it is like a distant memory. A very special reprieve after a brutally hard year. Maybe our lives are meant to be the unique combination of trials and reprieves, with just enough reprieves to keep us going. Florida was a wonderful reprieve, without a doubt. And now, perhaps, that reprieve was to give me some amount of emotional energy and stamina to deal with the latest trial. An unpredicted trial. And one that has been requiring every ounce of trust I have in God to believe that somehow, this trial is for good. That it is according to His purpose. And it is necessary as part of my growth. Because right now I am not seeing it. At all. All I can see is the harshness of what I am in the middle of. The unfairness of it. And when I step outside of myself to look at it from a different perspective, I see no differently. It is an unfair struggle. And nothing that I have done or didn't do seems to give any explanation to why this is happening.

Instead, I have found myself looking for much needed mercies. And they are there, but I need to look a little harder to find them this time around. Maybe this time, God is teaching me that His mercies might not look the way I had hoped, or the way I want them or expect them to look like. But, they are there nonetheless. Mercies like the best four girls ever. Mercies like the words "I'm so sorry this is happening to you", spoken by a dear friend. The mercies of being prayed for and prayed over. The sweet mercy of having coworkers telling hysterically funny stories of experiences out in the field. The mercy of being home after work and having four girls play without ANY fighting. The mercy of my littlest one's sweet breath and tiny hand being the last thing I remember before falling asleep.

I am not sure why things need to be difficult sometimes, especially when all we are trying for is something good. But I do know that learning comes with each experience, and we are forever changed by our experiences of the day before. Hopefully, someday, I can look back and see the reason and purpose for all of this. I have to believe that. I have to hope. Right? There's another mercy, right there.

Sunday, July 27, 2014

Grace and love

I have exceptional children. Exceptional friends. Exceptional family. Exceptional church family. An exceptional life. Never, would I have ever imagined a life like this. I know I have said it before, but it is truth. A life so full. Full of love, joy, laughter, and goodness.

This past week has been a blur. A much needed break after a very long year. It was a time I had prayed for, for months now, and God kindly answered. Me, in my weak human state, worried about this precious time somehow being thwarted, either by illness or by some other type of negative influence. I worried, rather than trusted. I had expectations of perfection rather than expectations of a joyous time which also included merciful provisions, given the imperfections of living life.

One of my dearest friends was willing to help plan this vacation, and accompany me along with my 4 children. Not exactly a rest filled vacation for someone who works very hard professionally and dedicates her own life to helping others. My friend's generosity and thoughtfulness enabled this trip to happen. She carefully researched and found a quieter family friendly place for us, along the gulf coast which is where I had hoped to be. This place allowed memories to be made and reminded me of the fullness of our life. Precious memories of four girls laughing along the seashore and enjoying the calm surf, of six of us enjoying meals together (even in a "fancier" restaurant in our beach cover ups), of talking the evenings away, of watching my oldest daughter help my youngest to swim, of searching for shells and sand dollars, of catsup being hurled through the air, of watching the sunset, and of spending ordinary time together made extraordinary because of a Christ centered friendship. The trip allowed me to forget the struggle of the past year along and focus and live in the present moment. Soaking in all the gift of each minute, hour, and day.

While my daughters and I were relaxing in Florida, other friends decided to become "elves" and place a new flooring in my condo. Actually, as another dear friend said, they became missionaries. They worked selflessly, after long days at their own workplaces, to place a floor that professionals would be envious of. Gone is the ragged carpeting which had accompanied our condo for the past 10 years. Gone is the buckling. A new beautiful laminate flooring was installed, with such careful detail attended to including caulking and baseboards. All done in a stifling hot condo without working air conditioning. Conditions they would likely never admit to, instead telling stories about how fun it was for three engineers to figure out at what angle to cut a corner or how our kitten curiously helped them with the saw.

As we started for home this morning, I was overwhelmed at how loved my girls and I are by those around us. I am incredibly lucky to have the people here who are in my life. People willing to make sacrifices for us without letting on that they are doing so. Author Paul Wadell writes about spiritual friendships, and says "there are some debts we can never repay" to our friends. I know this is true. This past week has proved it. And I am grateful to experience the love of God working through the love, care, and goodness of some very special friends.











Sunday, July 20, 2014

Thirty six hours

In 36 hours we are supposed to be going on vacation. As my eldest cleverly remarked "it will be our first time ever on a plane when we aren't going to adopt or volunteer in China". We have planned to go to Florida. For a rest vacation. Because, after the past year and all of the unexpected medical and school encounters, well, I am tired. The beach is a place where I have always been able to recharge and forget the tougher things of life to just experience joy. We all love being there. I want this summer to have a memory for my girls, as sisters, spending 4 days at the gulf coast. I have been counting the days for months, until our departure. I have been imagining the beautiful clear water, with baby powder sand, and watching four girls laugh and play. I have dreamed of watching a sunset on the gulf coast. It is a bucket list trip, of sorts.

Last week, Hannah Joy vomited in the middle of the night. She hadn't eaten much dinner, and seemed tired. I immediately began praying against the domino effect. With 5 of us living in pretty close quarters, dominoes could easily happen. Especially with the dreaded type of bug. By Friday, I was feeling hopeful we had dodged the bullet. Maybe, just maybe, this was a one kid thing. My hopes were dashed when Mia came into my room last night, in the middle of the night, saying she too had vomited. This, within 48 hours of flight departure.

Today, I have wondered if it is selfish of me to want this get away. Of all the weeks for my children to get sick, why now? I have been trying to make sense of it most of the day. Traveling with a cold can be tough to take. Traveling with a vomit illness is my version of torture. In 2008, on one of our orphanage volunteer trips, one of my children vomited the entire time in the airport, on our flight, and in the car. I would rather take a needle through my toe than go through that again. I am sure the child who was sick during that time would agree.

And so, I am looking for mercy here. I'm trying to hope I will find some. Single parenting during acute illness has always been the hardest for me to do. Hands down, it is always the time when I wish I had an extra set of hands. I had hoped that this vacation would be without incident. Without the need to search for mercies. I am trying to trust that it is going to work out, and will cling to any mercy I can get.

Tuesday, July 15, 2014

My village

Birthdays always seem like a natural time to look back and reflect on one's life, and look ahead to where one is going. When I was 18, I went away to college and met my first "real" long term boyfriend. I assumed we would marry, start a family, and live out our lives together happily ever after. When that didn't happen, I remember times where I questioned and wrestled with God. Why wasn't my experience like my friends who were all marrying their college sweethearts? What was my life going to look like? Would I look back someday and have regrets?

As life moved on and I got my graduate degree, the desire to become a mother grew stronger. I seriously considered adoption. The rest is history. A good history. MY history. A history which is filled with no regrets. I honestly can say that I now thank God that `I did not marry my then boyfriend. My life would have been so different. So, so different. I would never know the joy that now encompasses my life through my four daughters. I would not be the person I have become without them. I literally shudder at the thought of not having them in my life.

Being single isn't always an easy way to go through life. They say it takes a village to raise children. I actually think that the phrase should be expanded to say it takes a village to get through life. For all of us, whether single or married. A village of different roles people, important people, play in our lives. People in the roles of best friends, friends, coworkers, acquaintances, church community. I know in my life, I would be lost without the people who stand beside me. The people who are my friends. Not just "friends" in name, but real true friends.

As humans, we are formed to be in relationships with others. Since the day we are born, we are learning how to be in relationships. First with our family, and then with the outside world. We are not meant to go through life alone. In society, there is a huge emphasis on marriage, with marriage being the quintessential relationship. Understandably so, and I do not dismiss it. But, as I think on my life as one where I cherish the friendships I have made as an unmarried person, I believe there is no less value on the people who have become my deepest friends. Nor is there less value to those relationships I hold with my dearest friends. Those friends who know the joys and sorrows of my life. Those who have seen my faults and continue to stand by me. Those who know my deepest fears, and my greatest accomplishments. The people who I know I can count on whether things are great or in crisis. The people I can vent to, pray with, and laugh with. The people who can stop by and see my house in disarray without judgement. The people who can see my children misbehave and offer encouragement, not criticism. The people I can be most vulnerable with, and know that they will understand and help me grow.

Looking back at my life, I can see how God gifted me through the people He placed in my life. How He prepared me to be in the place where I am at now. This unexpected, yet beautiful place that is my life. Over the years, I have had such authentic friends who have helped me grow into who I am and who challenge me to keep on growing. Friends who have reflected the face of God. Friends who have come alongside with me to China, to experience something I love so deeply that it is hard to put into words. Friends who drop everything to bring food or drink when I am sick. Friends who would willingly choose the chaos of a vacation with me and four young girls. Friends who will pick up the phone to listen to me despite their own hectic life responsibilities. Friends who see me as I am, with four amazing little girls, and love me as well as them. Friends whose thoughtfulness and care go beyond what is deserved.

I am blessed, really incredibly blessed beyond measure, by the people in my life. Truly, they are my gifts. And today, as I reflect back on my life and consider where I might be going, I feel content at where I am. I celebrate these special people who are my friends and the roles they play in my life. I am so grateful for the chance to be in relationship with them, and for the privilege of being a friend to them too. And I am looking forward to another year with some amazing people to share life with.

Tuesday, July 1, 2014

A new year

We made it. Today marks the new fiscal year for my employer, which means that all of our benefits begin again. I ended last week with zero sick time left. Zero. Talk about panic when it comes to having 4 children where only one illness can bring a game of dominoes. I start today with 80 hours of sick time to be used in the upcoming year. Thank.You.God. The new year is here and it's a fresh start.

Those who know me know how much I love light. And warmth. Summer is, for me, the perfect time of year. It's the time to play together and rest together. The academic year is done, which brings a sense of relief. Huge relief. Especially after this past year. I think back and shudder at all that has happened. But more than that, I rejoice in all the mercies that happened along the way. We were provided for, by God and by friends and family. We were carried through. Mia's school year ended by her new first grade teacher reporting "she's not making benchmarks" and the school special education department asking to do further evaluations for her in September to give her more services that she needs. Talk about a contrast from only four months ago when her previous teacher said she sees "no disability". Lianna also was identified as needing continued help for her dyslexia, and in no way should services decrease, but increase. If we had not gone through the struggle of this past year, none of this would have come to light for either of my precious girls. Huge, huge, mercy. Mia and Hannah Joy's transfusion were able to happen as scheduled. Every single one of them. Despite coxsackie, influenza A, and random fever illnesses, not one needed to be rescheduled. My fellow thal mamas, especially those who are treated at CHB will know the significance of this. Huge mercy. I still have a long road with Mia. I have yet to set up the endocrine testing and appointments needed to start growth hormone. She will need a full body MRI, bloodwork, a hormone challenge, consults with several specialists. Given the enormity of this, and the fact that I am at the point where I need to recharge, I will begin scheduling these things in August. Part of me feels guilty about this, and part of me feels that I need to allow myself a break by just focusing on the thalassemia care for the summer rather than the Russell Silver syndrome and thalassemia. I choose to give myself that mercy. We have been welcomed into the Russell Silver community, where fellow parents can share the joys and struggles of parenting children with this condition. Another huge mercy. Despite all that was happening in our family, Katelyn did incredibly well managing the transition to middle school. She made wise choices with friends. She had perfect attendance. She played on teams for soccer and basketball. She loves youth group. She ended the year with a 4.0 GPA. Mercy. And Hannah Joy, oh my sweet baby girl, is thriving. This year began with something no child should ever need to experience. She was taken from all that was familiar to her. Familiar people, sights, smells, sounds all gone. Removed from her second set of parents, and placed into my family. Her year began with loss. Such a huge loss. Grief. And yet, she trusted. She expected to be loved and cherished. She soaked it in, over this past year, and she has thrived. She is much more secure and confident that she is here now and will never have to leave again. She is trying to believe that "mama never never leave me. Mama always always come back", words that she says each night as she falls asleep next to me. Another enormous mercy.

Our new beginning is here. As a family we will bask in the light and warmth. And try to get some rest. Talk about mercy. I cherish that one, and will look forward to what this next year will bring. I look forward to all of it. The joys, struggles, and mercies.

Friday, June 27, 2014

Space

In 2004 I was the lucky "lottery" winner in my town's affordable 40B housing program. For those unfamiliar with 40B homeownership, it is a program in my state designed to enable lower/moderate income families to purchase homes in more affluent communities where homeownership would otherwise be impossible. My dear friend who works for my town explained the process and encouraged me to apply. At that time, I was a single parent to one daughter, and condos were being built in the town I grew up in. We would qualify for a 2 bedroom condo. It was a fantastic opportunity to buy a condo in a town with a great school system and with more racial diversity than where we were living. I, along with five other families, were the recipients of the opportunity to buy one of these condos at half price, alongside fifteen others who would purchase a unit at full price. It was certainly an answer to a prayer, and has been a tremendous blessing for which I am incredibly grateful.

Over the years, as my family grew, we have adjusted our living space to make things work. When I said yes to bringing Hannah Joy home, I knew that my dream of owning a three bedroom condo or small home where the kids could play outside would need to be put aside. If I wanted to move to a southern state I could likely live this dream. But, given that I now have a child in middle school, whose emotional security centers around consistency, it would be unfair. Besides, I have two children who need to be at our current medical facility for their thalassemia treatment. And I need my amazing support network, so that parenting my girls is possible. So, we have brainstormed and adapted our 2 bedroom condo to fit our family needs. We did not need a dining room given the size of our kitchen, and made that into a third bedroom space. My eldest would occupy this space given her needs of needing to stay up later than her sisters to complete homework. It worked well for a while until, as she tried to complete homework, she was constantly disrupted by her younger sisters as there was no door to close out the sound. We made it through the academic year, and last nite, thanks to some great guys, we "switched" rooms. My eldest now has the second bedroom with a door, my two middles have their bunks in our makeshift third bedroom, and the baby, well, she still sleeps with me.

Last nite, the excitement was palpable. The girls were so excited with their new spaces. The guys even installed a ceiling fan since there is no window in the dining room/third bedroom. The girls LOVED this, especially as Nate put his hand into the running fan to show the girls they would not be hurt if a hand (or head) hit the fan while running. This was added security for Lianna, who occupies that top bunk.

Our mercies continue to abound. There is no way we could have possibly moved all that furniture by ourselves. My friends graciously agreed to come do all the work, after working long days themselves. They never complained once about the collections of things the girls have. They helped move, install, and even vacuum while four little girls all looked on. We are so grateful for their care. And last nite, my sweet girls all slept happily in their new spaces.