My soul melts away for sorrow; strengthen me according to your word!

This is my comfort in my affliction, that your promise gives me life. (Psalm 119:28, 50 ESV)

Thursday, December 29, 2016

...But the Flesh Is Weak

Being 42 and pregnant is not necessarily a combination I would recommend. Two years ago I ran a marathon in Athens, Greece; two hours ago I managed to walk 4 blocks from my chiropractor's office back to our house...and felt proud to accomplish that much after this week of woe.


Usually my pregnancies are pretty "easy." Oh, sure, I've dealt with some small issues here and there (early pregnancy nausea, some heartburn, swelling) and of course the inevitable feeling-like-a-whale, grunting-when-rising, awkwardly-flopping-about phase that means Baby's due date is approaching (although not soon enough for my liking).

But this...? My 11th pregnancy, the 9th one to make it past the first trimester...this pregnancy takes the cake for physical difficulties. Let's be real: it was a number of pregnancies ago when I realized that being pregnant in my 30s was much harder than in my 20s! And in my 40s?! Good heavens! I thought the varicose veins and swelling I dealt with during Rhema's (Baby #8) pregnancy were pretty awful! Not surprisingly, the veins began bothering me again early on with Verity, and this time I took the time to get fitted for some quality compression stockings that have helped tremendously. In fact, one improvement is that I hardly ever have any swelling. Yahoo for that!

Unfortunately, the combination of my age plus the T18 diagnosis has me a bit on edge, so when I experience what is for me a new and unusual form of pain or discomfort, I'm never quite sure whether it's something I just have to endure or whether it warrants further examination. Christmas Eve had me questioning some more experienced folks when the stabbing pains in my right leg (the one with the lovely varicose veins) were sharp enough to reduce me to tears. Based on input from some nurse friends, we decided I should head to the emergency room (because of course these things happen on the weekends when the military clinic is closed) to get checked out, just in case deep vein thrombosis was the cause.

Knowing I was likely to be "occupied" for a number of hours, I chose to drive myself and have Ted stay home with the kids. I left the house around 11am, all my hopes and plans for a lovely, family-centered Christmas Eve crashing down as I took a small packed lunch, water bottles, and some reading material...Rick and Karen Santorum's account of having a little girl, Bella, with trisomy 18. Bella's Gift is a beautifully written and brutally honest love story.


I was glad for the book...I waited in the waiting room nearly an hour and a half, and then I was in the ER exam room for about 4 hours. I quickly learned that I needed to MOVE every 10 minutes or so; I couldn't stay sitting or lying very long without the stabbing pains bothering me. So I rotated between the bed (leg elevated) to pacing my room a bit to sitting awhile to pacing the room...and so on.

In between all of this I saw actual people from time to time, lol! Eventually I got blood drawn to determine whether it was "thicker" than normal to see if there was a concern for clotting. Apparently that was the case, because then the next step was meeting the Venous Doppler machine and the friendly tech who accompanied it. She did her job well, but I nearly passed out when she had to scan the painful parts on my lower leg! My blood pressure dropped and there was a bit of a stir, but before too long I was back to normal and hearing from the doctor that, PRAISE GOD, I did NOT have DVT but only superficial clotting (sometimes called phlebitis). I was released soon after that with instructions for home care plus a prescription for some pain killers...which was all but useless since it was Christmas Eve night by this point and nothing was open!

I made the drive back to our little town in time to join the family for the Christmas Eve sermon delivered by our pastor, having just missed the music portion during which our oldest daughter played the violin for the first time in a non-recital setting. Sigh. Thankfully her dad captured the songs on video, and she did fantastic!! So proud of my beautiful girl!

My leg pain forced a much simpler Christmas than I may have desired...even though we had already been planning for a simpler family celebration. My wonderful family pitched in to prepare various parts of the meal, and it was a memorable day even though (for me) a good portion was spent trying to prop my leg and keep moist heat on it.

After a few days, the pain from the clotting was greatly subsiding...but yesterday morning I awoke with a severe Charlie-horse spasm in my hamstring of all places. (Same leg as the varicose veins and clots--oh, joy!) The spasms were nearly non-stop allllllll day. The only relief I experienced happened during my two Epsom salt baths, one after lunch and one before bedtime. Today the spasms seem to have stopped--mostly--occurring only when I transition from sitting to standing or vice versa instead of continuously. The muscles all up the back of my right leg are extremely tender. My husband and I went to the chiropractor this morning, and I decided to try walking home slowly. I would not have been able to do that yesterday, so there is definitely improvement...but I feel like an old woman! Between the rotating use of heat packs and essential oils and pain relief cream, I am feeling far beyond these 42 years.

This pregnancy has been so hard on my body.

But it has also been extremely hard on my heart.

Some days it is difficult to say which is the worse for the wear...

Tuesday, December 27, 2016

December Check-up and Ultrasound

I'm a bit behind in posting--not surprising, given the time of year!

On December 9 I had my monthly OB check with yet another pregnant military doctor, lol. She was due within 3 weeks, so I'm assuming I won't see her again! I took along a little heart-shaped recorder to capture Verity's heartbeat in recorded form. The kids were delighted with this little treasure (part of a keepsake box so thoughtfully sent to us by a beautiful organization, String of Pearls)...a bit too much so! I had to put it away before Rhema or Seanin made off with it! There was not a lot of information to be gained from this appointment, though one of my questions about the previous ultrasound was answered: I had been wondering about the level of amniotic fluid (it can often be high with T18 babies) and learned that it was high but not out of the "normal" range. We decided to go ahead and schedule one more appointment for me at the military base (set for January 9), after which point I will start having my check-ups every two weeks at the university medical center where we get our ultrasounds done.

Our last peek at Verity was December 20. Ted was able to leave work early enough to meet me at the center; he had missed the November ultrasound, but my mom and Charis were there with me that time.

Our tech was extremely bubbly and so sweet! She printed out tons of pictures for us, gave us multiple looks at Verity in 3D, and exclaimed over every little positive thing. She was exemplary in her treatment of us and our little girl! Here are some views of Verity at 30 weeks, 3 days:

You can see the cord floating in front of her face, but I love her little nose!
Also you can see a bit of fat on her cheeks and those adorable lips. 

She is showing us her bicep, lol! Precious little fist up by her forehead.
The shadowy thing across her nose is the cord;
the tech was able to "erase" part of it.

Did you know you can see hair on an ultrasound?! I didn't!
This is the top of Verity's head, easily seen by the outline.
But at the back...little hairs!

Verity's profile at 30 weeks, 3 days.
The "bubble" over her nose is the umbilical cord.

In November Verity was measuring in the 7th percentile; this month she was down to the 4th. Obviously this is compared to all other babies, most of whom are "normal." So I was excited that this time, we had some extra information on hand: a "growth chart" of sorts for trisomy 18 babies. It shows birth weights at different gestational weeks, dividing the girls from the boys and showing a ranking within T18 babies. Based on THIS information, Verity's 2 pounds, 13 ounces (or 1264 grams, if I remember correctly) has her weighing in at the 50th-70th percentile when compared to other trisomy 18 baby girls. Granted, the numbers from this pool are pretty small, maybe 25+ babies at the 30-week mark and about 15 at 31 weeks. (We were kind of in the middle so looked at both sets of numbers, but either way Verity ranked in the middle for size.)

The doctor who spoke with us this time was a new face, but he was kind enough...he didn't really give us any new information. I almost feel that we are at the point where WE may very well have more information than our medical caregivers, so I am going to be sure to carry copies of the research articles I've been reading (see previous two posts) to give out as needed. (Our genetic counselor was delighted to see us again and receive copies of them when she visited our exam room just before the ultrasound!)

Next ultrasound is January 13. I was pretty content to have scans done every 4 weeks or so, because I wasn't convinced there would be any benefit to doing them more often. (We aren't monitoring her heart, for example.) However...when I saw someone comment about the importance of weekly scans on the trisomy parent Facebook page I keep up with, I asked why. This is the response I received:

"If the baby has trisomy 18, that means the placenta also has the faulty chromosomal makeup, and often the placenta fails first and then the baby passes in the womb. They will Doppler the cord flow from placenta to baby to see if it's elevated at all or restricting oxygen. If the baby is going to pass in the womb or something go wrong, it can be caught first by watching the placenta to the baby!"

So this has given me something new to consider. So far, however, things have looked very good, and Verity is an incredibly active baby--possibly even more so than my others! Now I'm praying for wisdom to know if we should increase the monitoring in the future. The med center has offered to do more frequent scans, though the doctors have all indicated they don't think it's necessary. (Not that--we've learned--we want to rely on what the doctors think is or isn't necessary for a trisomy 18 baby!)

Saturday, December 17, 2016

Verity Is Our Baby...Not a Diagnosis

Understatement: Continuing a pregnancy with a high risk of miscarriage or stillbirth is a difficult, emotional journey. It is even more complicated when considering that should the baby survive birth, he or she will have special needs and a shortened life span, even if "exceeding expectations."

As my husband and I have learned from personal experience, the input we receive from medical professionals along our journey contributes in a huge way to either lightening our burdens or adding to them. The research article I want to highlight today is titled "Our Children Are Not a Diagnosis" (full citation at the end of this post), and the pointers offered to health care providers (HCPs) rang so true when I read them that I felt the information was worth shouting to the world!

First, I want to share some feelings and experiences common to parents who choose to continue pregnancies despite diagnoses of fetal anomalies. Since the research represented input from parents of 107 children with full T13 or T18, I feel we are in good company, with many of the quotes and answers resonating with our personal feelings and experience. Quotes from the article are in italics; I will follow with commentary about our own experience.

Facts:
  1. "Parents experience intense grief reactions regardless of the choice they make. However, parents who were offered support and who chose to continue pregnancy described a positive experience in all explorative descriptive studies."
  2. "The majority of parents felt some HCPs did not view children with T13-18 as unique children and that they did not look beyond the grim statistics of these conditions." [This has been true of two of the doctors we have consulted with at various times--but not of the providers I have seen at the military treatment facility.] After diagnosis, parents report being told that:
    • Their baby would likely die before or at the time of birth [Check]
    • Their baby would not live more than a few months [Check]
    • The condition of their baby was lethal or incompatible with life [Insinuated if not in these words]
    • Their child would be a vegetable [The actual word spoken to me was "retarded."]
    • Their baby would destroy their family or their marriage [Check]
    • If their baby survived, he would live a meaningless life or a life of suffering [The word used here was "futile."]
  3. "The majority (61%) of parents reported feeling pressure to terminate their pregnancy." [I am pleased to say that none of the HCPs I have spoken with either in person or on the phone has even suggested this, but this perhaps may have been different if we had not begun EVERY meeting by firmly telling that particular HCP that abortion is NOT an option for us.]
  4. When first hearing about the diagnosis, "The most common hope was that the child would be born alive and that parents would have a modest amount of time to spend with their child.... Parents report understanding the implications of the diagnosis and only a few had hopes for a miracle or a cure. These modest hopes reflected acceptance of the serious condition." [This is certainly true for us. I don't want or need HCPs to paint a rosy picture for us. We are well aware of the facts. I DO want them to understand the not-so-negative facts, though.]
Ideally, parents who receive a prenatal diagnosis should also receive the full range of information, including new data about these conditions. The spectrum of outcomes for T13 and T18 babies is extremely wide. With a disproportionately high number of these babies being aborted, the statistics we do have are already skewed. But while the traditional view is to describe these conditions as "lethal" or "incompatible with life," the truth is that when interventions are provided, particularly for those who do not have severe anomalies, the one-year survival rates have been reported to be as high as 56% (in some Japanese studies). And as I learned from the article referenced in my last post, early interventions can make a huge difference in how long a T13 or T18 baby lives after birth. It is true that life spans are still significantly shorter, with a small percentage making it past one year. But why not allow parents the opportunity to make and cherish precious memories no matter how long their child lives?

The article featured in this post concludes with the paragraph below, followed by a list of suggestions to assist HCPs in providing optimal prenatal care. I encourage you to share this post or these suggestions with anyone you know in the medical field; it is obvious that some of the doctors I have seen have not encountered a trisomy 18 pregnancy, and they just aren't sure what to tell me other than parroting the statistics that indicate our daughter will likely die sooner rather than later. In general they are kind, compassionate, and non-judgmental; but neither do they understand that T18 isn't necessarily an IMMEDIATE death sentence. I hope to provide people like them with information that gives a fuller picture of the range of possibilities.

"HCPs need to understand parental perspectives and realize that while T13-18 cannot be 'cured,' the children have value and meaning to their parents regardless of life span and disability. HCPs can provide many positive actions to prepare parents for the life or death of their child. All these interventions result in a measure of 'healing' without cure. Pictures are worth a thousand words. The contrast between family pictures and the pictures of children with trisomy 13 and 18 found in medical texts is striking and demonstrates the contrasting representations of children with these conditions....

Based on the information obtained in this study from parents who continued their pregnancy after a diagnosis of T13-18, we offer suggestions to assist health care providers to provide optimal prenatal care:
  1. At the time of diagnosis, provide accurate survival figures. Avoid words like "lethal," "incompatible with life," and "vegetable." Avoid value-laden language related to disability.
  2. Parents should be informed that most parents who choose to continue pregnancy have reported a positive and enriching experience regardless of the lifespan of their child.
  3. Parents who decide to continue their pregnancy need support, not judgment or pressure to change their choice. Parents accept that early death is likely and they have chosen to value the time they have, both before and after birth.
  4. Remember that to these parents, their child is a person, not a diagnosis. Refer to the unborn child by name, if possible. Parents expect to receive medical information related to their child, not to the diagnosis. Informing parents of normal organs in addition to anomalies is greatly appreciated. Offer hope when it is reasonable: hope that baby will continue to grow in utero, hope that baby will be born alive and that parents will enjoy some time with the baby.
  5. Offer to continue prenatal and fetal care as for any pregnancy. Ultrasounds are very special, memorable events and given the high risk of miscarriage, might be the only time parents will see their living baby. Taking a few minutes during the ultrasound to point out normal or "cute" features of the baby can be a lifetime gift to parents.
  6. Guide parents to create a birth plan that is best for their child and family. Parents should understand that children with T13 or 18 are unique and some might benefit from life-sustaining interventions while some may be harmed by them. Ensure that the birth plan includes collectibles for memories such as footprints and photographs. In indicated, be transparent with parents about any hospital protocol or policy that restricts certain interventions to babies born with T13-18. Parental challenges to these restrictions should be discussed in a multi-disciplinary meeting or ethics consultation.
  7. Most parents who choose to continue pregnancy do so because it is the better path according to their personal beliefs. They appreciate empathy and kindness on their extraordinarily difficult journey, especially recognition of and respect for their love for their child."
One of our lovely ultrasound techs took time to give us a 3D
look at Verity's sweet little face. This meant so much to us,
and it was a beautiful thing to have the photos to show her
siblings once we got home.

*************

NOTE: This post refers to and quotes the following article, noted in italic text throughout the post:

Guon J, Wilfond BS, Farlow B, Brazg T, Janvier A, 2013. Our children are not a diagnosis: The experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18. Am J Med Genet Part A 9999:1-11.

Friday, December 16, 2016

The Drawbacks of a Prenatal Diagnosis

Yesterday I read some articles published in the American Journal of Medical Genetics. These were sent to me by a lady on the Rare Trisomy Parents Facebook group in response to some questions I had posted. As one of the co-authors and collaborators of these and other studies (not to mention the mother of a trisomy 13 daughter), Barb is kind of a go-to person on the parent page. I so appreciated the information she sent me. The studies were quite thorough and well-presented, with findings related to concrete statistics as well as open-ended input regarding parents' experiences and emotions. In this blog post, I want to highlight some specific information from an article titled "Parental Hopes, Interventions, and Survival of Neonates with Trisomy 13 and Trisomy 18" (full citation follows at the end of the post).

I sat down with a hot drink and highlighter in hand to carefully read the pages I had printed. I confess I was not prepared for what I felt was the most stunning finding of all. See what you think after reading this paragraph:

"The single most important factor independently related to mortality before going home or before one year, even when correcting for all other factors (including congenital anomalies, interventions, and palliative care), was the presence of a prenatal diagnosis." 

A prenatal diagnosis?! Something I have been thankful for, the one thing we DO know with certainty--the knowledge during pregnancy that our daughter has full trisomy 18--that knowledge actually could have a negative effect?!

Wow. And yet, when I consider the words of the NICU doctor with whom I had a consultation, it completely makes sense. Hang with me and follow this train of thought: Parents, trusting health care professionals, receive information that may or may not be current...filtered through lenses of personal beliefs...relying on grim statistics that ignore (or are ignorant of) any positive outcomes...and under the influence of a variety within the health care field, accept sentiments that become a self-fulfilling prophecy and act accordingly.

The vast differences in outcomes and care plans for children with a prenatal vs. a postnatal diagnosis showed up in several ways. For those who had a prenatal diagnosis, the study found that parents have similar hopes; in fact, our personal answers fit right in with the general consensus of those who chose to carry their babies to term: "They hope to meet their child alive, take their child home, be a family and give their child a good life."

So what did medical providers recommend to these parents whose hopes are outlined thus?

"...the recommendations parents had from medical providers were homogeneous: comfort care at birth with the plan of not prolonging life was recommended to all parents."

Referring to other medical articles/resources, the authors of this study noted that these recommendations were probably based solely on the chromosomal diagnosis, as evidenced by many position statements, hospital policies and authors who consider that interventions for these conditions are futile. (There's that word again! "Futile." Used multiple times by the NICU doctor with whom I spoke.)

Postnatal diagnoses for the respondents in the study came an average of 6 days after birth. So any interventions came as a result of medical personnel doing their jobs:

"Children with a postnatal diagnosis received ventilator support according to their respiratory status only (and not related to decision-making or genetic label)."

Next, there was a clear difference even in what constituted "palliative care" for babies with a prenatal vs. postnatal diagnosis.

"It seems that palliative care, for children with prenatal diagnosis, is directed to a goal of having as short a survival as possible, with medications being prepared even before delivery. Giving the child an optimal death seemed to be the goal of palliative care after a prenatal diagnosis of trisomy 13 or 18."

On the other hand:

"For children with postnatal diagnosis, palliative care may involve numerous different neonatal interventions...[to include] transfusion for weakness and inability to feed, tube feeds for comfort, CPAP for dyspnea, surgical closure of meningomyelocele, surgery for omphalocele, ventriculo-peritoneal shunt, and even 'cardiac surgery for comfort' (symptomatic child with a VSD). It is likely that many pediatricians would not describe such interventions as palliative."

There is certainly a lot more I could write or quote, but I think you get the general idea. Having a prenatal diagnosis can actually be a lot more harmful than being blissfully unaware of a chromosomal issue until after the baby arrives and makes his or her needs known.

So...what does this mean for us as a family? Further, what does it mean for YOU, perhaps a friend of our family, or even a random stranger who stumbled upon this humble blog entry? Here are some things I've been pondering...

First, as a parent of a baby girl with a prenatal diagnosis of full trisomy 18, I feel extremely grateful to be acting on the offensive instead of the defensive. While so much is out of our control, and though many things are uncertain about Verity's physical and mental status, simply KNOWING that any medical providers we encounter at delivery are likely going to have similar biases going into L&D with us helps us prepare to communicate firmly and effectively.

Second, as I read more of how other parents dealt with decision-making and care plans for their children, I feel much comfort in the fact that Ted and I are in agreement with each other, and also the fact that our "game plan" looks pretty much like what I see outlined in the report:

"Decisions were influenced by the state of the child and whether he was vigorous or weak with parents in general not wanting to impose undue suffering. Parents of almost half the children discharged on comfort care later decided to consider surgical interventions, because their child exceeded expectations."

In the absence of any concrete information at this time, we have simply said that we will wait and see what Verity needs when she needs it. As our genetic counselor told us, "Verity herself will let us know what she needs when she's born!" We plan to give her whatever support she needs, particularly help with respiration and feeding, as those are common issues. Anything that will not cause her undue discomfort but enhance her ability to breathe and receive nourishment--that's a given. That's our first plan of action. And then we take one day at a time and see how she's doing.

Now...what can all of this mean for YOU--and bless you, if you are still reading! Well, I can only encourage you to be willing to share information as you have the opportunity. Many health care providers are stuck in the "dark ages" when it comes to a diagnosis such as trisomy 13 or 18. And since these are fairly rare issues, it stands to reason that the average parent will know very little as well. Maybe someday you will be in the position of sharing information with a distraught couple who needs to know truth?

"Based on our findings and the current literature, if a baby is born near term, with a weight above 2.5kg, without a complex congenital anomaly, the chances of survival to discharge and to one year of age are significant. Our data about ventilator support and early survival are important. Poor respiratory drive immediately after birth is common. This support can often be removed after a short time and allow survival to go home. Sometimes, prolonged survival occurs, especially in neonates without complex cardiac anomalies or other significant adverse associated diagnoses. Infants with a prenatal diagnosis generally do not receive ventilator support, unless parents decide for interventions before birth."

Verity seems to fit the description of a trisomy 18 baby who may very well "exceed expectations." She does not have any complex cardiac anomalies or other "significant adverse associated diagnoses." It makes me wonder how many other trisomy 18 babies might have stood a chance at beating the odds and allowing their parents more time to spend with them on earth...if only they had had the opportunity for care before receiving a diagnosis. As the article queried, "It is important to examine decisions to withhold/withdraw interventions and whether they are in the best interest of neonates and whether our goal for these children is a good death, or is it a good life?"

******************
NOTE: This post refers to and quotes the following article, noted in italic text throughout the post:

Janvier A, Farlow B, Barrington KJ. 2016. Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18. Am J Med Genet Part C Semin Med Genet 999C:1-9.

Sunday, December 11, 2016

Holding Pattern

I've had some close friends ask lately how I'm doing. Most days the answer is, "Pretty well, actually." It's rather startling to realize how ordinary life seems after the tumultuous roller coaster of October and November.

I have somewhat arrogantly assumed that our holiday season will be "normal," untouched by drama or trauma. Maybe it's wishful thinking; maybe it's an unspoken prayer that God will give us some sweet, precious memories together before Whatever Happens Next swoops in and takes over our lives. I desperately want to foster a festive and generous holiday spirit in our hearts and in our home, particularly for our younger children who don't have as many Christmas memories racked up as their older siblings. (I recently overheard my three-year-old son listing objects on our Advent calendar, having learned at least a few things even though we haven't actually STARTED the calendar readings yet, sigh. He did quite well leading up to "Wise man, camel, the thing that he brought...another wise man, another camel, the thing that he brought." Hey, even many adults don't really know exactly what frankincense and myrrh are!)

So...life is about as normal as we can make it this year. Decorations are out of the basement and adorning shelves, mantles, and walls. The baking cupboard is bursting with supplies waiting to be mixed or melted and prepared for sharing and/or hoarding. While we've agreed as a family to drastically simplify our gift-giving this year, we still have special treats planned in the way of events and family activities, and the much-anticipated stockings will still hold treasures for eager hands (and mouths) to enjoy first thing Christmas morning.

In between trying to keep up with homeschool lessons and direct holiday activities, there are the not-so-normal bits...

* My OB appointment on Friday showed my belly measuring at the same point (23 cm) as at last month's appointment. (It should have been 28-29 with a baby growing at a standard rate.)

* I continue to monitor posts in the trisomy parents Facebook group. Wee ones have been stillborn or flown to the arms of Jesus in recent weeks. On the other hand, others are celebrating birthdays and milestones no one expected them to reach.

https://www.facebook.com/groups/T18Mommies/

* Rhema weaned herself completely a couple of weeks ago. I'm thankful for a good nursing experience with her, one of our longest at 16 months (and definitely the longest I've nursed a baby while being pregnant!). But I couldn't help feeling a bit melancholy because of not knowing anything about what Verity's feeding needs will encompass.

* Any other year I'd be penciling in future events and looking forward with anticipation to things like traveling to our teens' speech/debate tournaments in the spring and my company convention in the summer. But now...my calendar remains blank with invisible question marks hovering over every possibility. Even local outings like concerts or plays are up in the air (for me at least, not necessarily the whole family). The only things I bother adding to my planner are ultrasound and OB appointments, knowing even those may change.

Image from www.sheknows.com/pregnancy-and-baby/day/53

I'm in a kind of holding pattern, hovering closely enough to our final destination to feel the anticipation of finally landing and yet far enough away that I can't see the location with any clarity. I'm infinitely grateful that my Pilot's ways are higher than my ways, His thoughts higher than my thoughts (Isaiah 55:8-9). His perspective and purposes are eternal. He is perfect, and I can trust Him completely.

Thursday, December 1, 2016

Farewell to Fall

It’s December, but I’m not quite ready to let go of November yet. Perhaps the reason is a week-long trip our family took to San Antonio for the National Bible Bee the week before Thanksgiving; we returned home Monday the 21st and had to restock the fridge and pantry, do mountains of laundry, and figure out what we were cooking for the Big Meal. We hosted my parents, but honestly, it was a simple, quiet affair. I didn’t have time or energy for the fun extras I usually enjoy doing. My birthday is November 22, and I have always loved autumn. A favorite family tradition is adding to our “Blessing Tree,” and I cherish the memories of little hands taping colorful paper leaves to the branches and proclaiming gratefulness for everything from pizza and stuffed animals to family and salvation in Jesus Christ.

One of the most normal shots of everyone;
unfortunately, Rhema is not looking, but at least
there are no bunny ears or crossed eyes...oh, wait.
Tobin does have his eyes crossed. Sigh.

This year we didn’t even set up the blessing tree. Our table was bare of adornment—we chose to do a buffet line. There was no need for place cards, so we didn’t bother. We used our special Blue Willow plates and went around the table several times saying what we were thankful for (no one was allowed to repeat anything already mentioned), but somehow it just seemed…incomplete. Somewhat disappointing, maybe even a bit hollow.

This isn’t fair to my amazing family. It was truly a joy to spend a few days with my parents. The last time we had celebrated Thanksgiving together was in 2009! And I had willing helpers in meal preparation (and more or less willing helpers in clean-up, lol). The leftovers meant I didn’t have to cook for a few days afterward, but a spell of possible salmonella put a huge damper on the day after Thanksgiving as my poor hubby took to his bed with stomach pains. (Thank the good Lord for Young Living’s DiGize essential oil blend!)

We all thoroughly enjoyed the turkey,
which we roasted in a paper bag, but: lesson learned,
wash those ARMS, not just hands,
after slathering butter and herbs all over the bird!

Facebook now features a “See Your Memories” option, and I enjoy going back in time and seeing posts and photos from years past. There were several years when I joined with many others in posting something each day I felt thankful for. That fad seemed to be passé this year—maybe the political climate kept our attention elsewhere at the beginning of November? Or maybe folks in my Facebook feed, like me, simply decided not to do the daily posts. I certainly saw many beautiful sentiments of gratefulness: I enjoyed scrolling through photos of families gathered around tables, glimpses of culinary delights, and Bible verses proclaiming God’s goodness.

But—this year I have a new addition to my Facebook feed. Posts to the trisomy parents support group show up randomly as I’m scrolling, and I ended Thanksgiving evening in tears over a family who learned their baby boy would be stillborn…doctors said they could have Thanksgiving with their loved ones before going to the hospital for an induction. And this wasn’t the only loss the trisomy community experienced during the holiday week.

So…with the turn of the calendar page to December, this morning I am feeling reflective and somewhat melancholy. And yet—truly—my heart overflows with Thanksgiving! This morning’s Bible reading for my husband and me included a couple of chapters from Nehemiah, and I am reminded that in the midst of mourning—indeed, in the midst of any circumstances—the JOY of the Lord is our STRENGTH. And so, I write this as a final farewell to November 2016 and the first Thanksgiving our family has experienced with a little person named Verity in our lives.

Here is my list of 30 reasons I am thankful during this unique time. In no particular order…I am thankful for:
  1. The fact that Verity is alive and kicking—this little girl is full of LIFE and certainly rivals her siblings in the gymnastics department!
  2. Advance notice of the Trisomy 18 diagnosis. Many families have no idea until after their little ones arrive. I am grateful God is allowing us this time of preparation.
  3. An incredibly supportive community of family and friends. I have never felt so loved and encouraged as I have over the past couple of months.
  4. A tenderhearted, like-minded husband. Truly, I could not be on this journey of life, love, and parenthood without my Ted, a man who not only holds me when I’m falling apart but is able and willing to cry along with me.
  5. Children who already treasure their unborn sister, speaking words of love and laughter to her through my expanding belly.
  6. The power and presence of God: there are days when I am amazed at what we are accomplishing in our homeschool routine, when I have joy and peace abounding for no other reason BUT GOD.
  7. The tender mercies of my Lord and Savior: there are days when I just “can’t even.” When I don’t shower and stay in my bathrobe and let the kids have whatever they find in the pantry to eat. When the best I can do is hang on for dear life until Ted gets home from work. And yet God’s power is made perfect as I wallow in weakness.
  8. The wonders of technology—ultrasounds that allow us to see Verity and keep tabs on her development.
  9. Verity’s wonderfully formed little body, knit together by a loving Creator.
  10. Coffee, made Italian-style by my husband every morning. It tastes delicious and never fails to make Verity dance.
  11. Medical professionals who embrace life no matter the diagnosis, and…
  12. Resources and encouragement beyond the medical professionals who don’t.
  13. New friends and connections I’ve made just in the last 2 months because of this journey we are on.
  14. Opportunities to speak life and truth to a hurting world.
  15. Opportunities to speak life and truth to our children, who are forming their own worldview.
  16. My new Instant Pot. (Now to find/make time to figure out how to use it so it can bless my family in the days to come…)
  17. A beautifully consistent heartbeat, heard on the monitor and seen on the ultrasound screen during each of Verity’s checkups so far.
  18. Verity’s beautiful little profile and healthy heart.
  19. Essential oils—not only are they keeping me and my family healthier than ever, but I also love purposefully praying and anointing my belly with oils like Frankincense and Lavender or blends such as Joy, Abundance, or Stress Away.
  20. The mental and emotional support I get each day from our oils…this is worth a separate mention, especially since a year ago I was struggling with some post-partum issues.
  21. The TRUTH of God’s Word, which reminds me that God’s thoughts and ways are higher than mine, and His purposes will prevail.
  22. The hope of eternity. Our struggles here are temporary and will fade away.
  23. My husband’s job that gives us health care coverage—knowing we do not have to make medical decisions based on whether or not we can afford them is a huge burden off our shoulders.
  24. A measure of normalcy in our lives—at least for now. Routine is good.
  25. A pretty “normal” pregnancy. Other than the T18 diagnosis, nothing about this pregnancy is really any different from my others, as far as my own physical health.
  26. Central air and heating. After living in Italy for 3 years and feeling hot in the summertime and freezing cold during the winter…well, I’m grateful.
  27. Our church. Everywhere we’ve been, God has put us in a community of believers who become our family. We know God placed us here “for such a time as this.”
  28. Peace. My heart is at peace, even though I yearn for insight into the future.
  29. Laughter. It really is “good like a medicine,” as Proverbs says. My husband and my kids make me laugh on a daily basis, and I am grateful!
  30. The truth of Hebrews 13:5 and 8, which reminds me that God will never leave or forsake us and that Jesus Christ is the same yesterday, today, and forever.

Friday, November 25, 2016

Recent Appointments

It's been awhile since I've been able to sit at my computer without interruptions. Today was supposed to be that time for me, but as it stands now, I have an ill husband in bed and a non-napping toddler wanting attention. So...we'll see how far I get. The goal for this post is to record notes from my last couple of visits with doctors before things get any more muddled in my brain...

On November 10 I had a regular monthly OB visit, which lasted about an hour as the doctor took her time with me, asked questions, and really listened when I shared about my experiences at the university hospital. She also encouraged me to send feedback about the NICU doctor to the medical center's Patient Services office, which is on my mental to-do list but honestly just hasn't happened yet. 

Other than that, the biggest things I remember about this visit were the doctor's recommendations for the following:

1. She thinks that I should go ahead and transfer my regular OB care to the university medical center staff once I reach 32 weeks. (The decision to remain at the military health clinic for my regular check-ups was entirely up to me...if I wanted to transfer to UNMC sooner, I could certainly do that. The convenience and more personal feel of the military clinic were the biggest factors for me, as it is twice the distance to UNMC.)

2. Given my past birth history and Verity's overall good health (considering), she believes I'm a good candidate for delivering vaginally as opposed to planning a C-section. In her opinion, even if Verity is in a breech position at the time of her birth, that alone would not need to be a factor in our delivery options.

3. She also advised continued monitoring of Verity's growth via ultrasound, something recommended and covered by Tricare (our military healthcare). This was a pleasant surprise to me, as our last ultrasound had seemed to have a note of finality about it--I wasn't given the option to make a return appointment, and since they had seen Verity's heart and profile clearly (unlike the first ultrasound), I assumed that since no one said anything to me about scheduling another appointment, then obviously we were done with ultrasounds. Looking back, I can't help but wonder if the doctor who had evaluated the pictures felt continued monitoring was unnecessary...? I can't say for sure, but I had the distinct impression during our two meetings with her that she was rather negative about continuing the pregnancy and the chances for Verity's survival. 

At any rate, the military clinic staff set up the appointment for an ultrasound that would be about 4 weeks after our last one, which ended up being November 23. Since my parents were in town for Thanksgiving, my mom and Charis went with me for this one, and we joined Ted plus my dad and the rest of the kids on base for a squadron open house after we were finished.

Verity at 26 weeks
This appointment was a very quick screening and included getting to see Verity's sweet little face in 3D! After the images were recorded, I met with a different doctor than before. (I was pleased to learn that my doctor from the military clinic had requested for me to see someone different this time!) We learned first of all that while nothing else seems to be showing up as potential problems at this point, Verity is still very small, only in the 7th percentile...and that is with a later due date than my original one. Our initial due date was based on LMP, giving us February 16. After some early concerns--long before we had any idea about the Trisomy 18--I ended up having two internal ultrasounds about a week or two apart that seemed to agree with each other on a February 25 due date, based solely on the gestational development at the time. The doctors have not adjusted the due date since, even after the diagnosis, so we are basing everything on February 25. I'm not sure how adjusting it would affect her percentile...either way she would be pretty teeny.

Verity at 26 weeks, 3D. Can you see her right ear, eye, nose, and mouth?!
Dr. N is very kind and gentle and also took time with me to discuss some things no one had yet asked or told me about. For example, he asked how "aggressive" we wanted to be during the pregnancy itself. This part was a little confusing at first, but after asking some questions, I think the gist of what he wanted to know was how frequently we would like ultrasound monitoring. With any other baby measuring less than the 10th percentile, they would typically recommend ultrasounds every 2 weeks. That sounded exhausting to me. 

And then he explained that some couples choose to intervene with early C-sections based on any alarming ultrasound findings, even if taking the baby early wouldn't affect the outcome. I suppose one could certainly ask the question: how do we KNOW the outcome wouldn't be affected? But at this point...Verity looks good. She doesn't have heart issues or other organs affected like some T18 babies. I don't see that going in twice a month is going to be any more beneficial than once a month (which the doctor seemed to agree with, even though he made it very clear that it was our decision). So our next ultrasound will be on December 20. 

Finally, without me having said anything about delivery options, the doctor spent some time on that topic as well, and when I told him what the military doctor had told me (about us being a good candidate for vaginal delivery), he nodded in agreement. This was encouraging for me, as he affirmed my desire to not bring further harm but that if things were looking well for us both during labor, then we wouldn't necessarily need to go in planning a C-section. Certainly if it looks like that will be the only way to deliver her alive, we will definitely go that route. Now that I have heard from two compassionate doctors--two medical professionals who respect our desire to do the best we can with and for Verity, who affirm that they and all involved will give whatever support and help is needed for her during and after her arrival--I'm feeling at peace right now with not assuming we MUST do a C-section. I may learn more information down the road to indicate we need to change the plan, but it's comforting in a strange way to have a birth "plan" of sorts that fairly well resembles our previous births: natural delivery if possible, meds if necessary, C-section if necessary. (I've never had a C-section and only managed to do 3 of our 8 kids' births without any medicine whatsoever.)

With reaching 27 weeks tomorrow even by the later due date, I suppose that means we are officially in the final trimester. Only God knows what will happen between now and her arrival!

And...by the way...for the inquiring minds who want to know, this post was written with many interruptions, but some bread and butter went a long way, as did a session of reading new library books!

Tuesday, November 8, 2016

Of Healing and Miracles

I’m learning that faith in the fire isn’t easily defined. We can say we believe something, have Scripture to prove our points, and then find ourselves being tossed by the waves of circumstances beyond our previous realm of experience. All we can do is keep our heads above water, gulp enough air for breathing, and trust that the faith nurtured by the Holy Spirit is enough to keep us buoyant until the seas grow calm.

The “air” I’m inhaling, then, is the truth I KNOW, the foundation I don’t even have to think about.

God is real.
God is love.
God is all-powerful.
God is eternal and ever-present.

Let’s add a life vest—other truths that are buckled tightly around me and keep me from flailing and slipping underwater when I grow weary.

God has saved me through Jesus Christ and will never let me go.
God is sovereign; God is good; God has eternal purposes beyond what I can see.
God’s ways are higher than my ways, His thoughts higher than my thoughts.

This part is easy. These things I know. What I do NOT know is how, exactly, God will wield His power and work His purposes in particular situations.

God is all-powerful: so can God do miracles? Of course—Jesus used miracles to prove His claim that He is the Son of God.

God is eternal: so does He do miracles in these days when Jesus Christ doesn’t walk in a physical body on earth? Undoubtedly—many of us can testify to supernatural works that can only be attributed to the intervening hand of the Lord.

God is sovereign: so does God bring healing that overrides a doctor’s diagnosis? Sure, sometimes…I don’t have proof of this, but I suspect God really gets a kick out of showing up and showing off when people predict doom and gloom. I think He takes delight in doing the unexpected in order to get someone’s attention and draw them to Himself. (Come on…a donkey speaking to Balaam? A boy defeating a giant with a slingshot? A Jewish girl chosen as queen of Persia who just happens to save her people from mass slaughter? I could go on...)

So yes, I know these things. I believe God is powerful. I believe that if He wanted to, God could “heal” Verity.

Let me tell you what I don’t know. I don’t know what to say—how to respond—to kindhearted, well-meaning, faith-filled, encouraging proclamations about how people are praying for healing for Baby Verity, praying for nothing less than a miracle.

The night we got confirmation that Verity has full Trisomy 18 (as opposed to partial or “mosaic” T18), we talked with our older four kids about what all this means. Our 13-year-old son asked if God could heal Verity—heal her in the sense of making her “normal.”

I answered carefully. “CAN God heal her? Of course. He COULD. He is able. But in order to make her NOT have this condition, He would have to reverse what He has already set in motion. Verity has an extra 18th chromosome in every single cell of her body, and unless He chooses to intervene in miraculous ways, that extra chromosome is always going to be there.”

What I didn’t want then (or now, truthfully)? False hope. A hope that rests on Verity somehow becoming “normal,” all because we hope and pray for healing and wait expectantly for a miracle. And so that night, I gently squashed the idea of praying for Verity’s healing, mostly because I myself feel that God’s purposes for Verity’s life are not of the miraculous, physical-healing kind.

I will say, however…after a few weeks of wrestling over various thoughts and emotions, God gently showed me that He WILL bring healing for Verity—she will be healed and made whole in heaven, if not here on earth. And so I had another talk with our family, this time telling them that I was sorry if I had discouraged them from praying healing prayers for their baby sister. I still think that “healing” can mean different things to different people, and I still emphasize that heaven is our real home, and THAT is where all things will be restored and renewed. So our prayers for healing WILL be answered, ultimately. And if they keep these things in mind…if they aren’t expecting a “healing” or a “miracle” to look a certain way…if they are open to God’s answer being perfect, no matter what it looks like…then, children—friends—by all means, pray for healing!

Am I wrong to put these mental limits, all these caveats, on our prayers—especially the prayers of other people?

It’s an honest question.

If someone feels led to pray for Verity’s full, restorative healing—who am I to stop that? Pray. Pray as you feel led. But I need to share where God has led ME, and that is to a peace that whatever happens, God has ALREADY done miracles. (Verity is already knit together and growing in my womb, fearfully and wonderfully made, just as she is.) God has ALREADY answered prayers. And I fully expect that He will continue to answer prayers and do miracles.

But…my miracle may not be as glorious as you envision.

My miracle may be bravely enduring labor knowing I will give birth to a stillborn baby.
My miracle may be that I have strength each day to care for a special-needs child with love and compassion, a thought that both drains and terrifies me.
My miracle may be losing our girl to the arms of Jesus just as we have finally learned to “do life” with her and all her needs, nurses, and equipment.
My miracle may be praising God and embracing the life He has given me when I would rather curl up and die.

You know what? On second thought…pray for miracles. Please…pray for miracles. 

Friday, November 4, 2016

Medical Input...the Good, the Bad, and the Ugly

This past Tuesday we had a couple of consultation appointments set up. First we met with Sara, the genetic counselor whom we met on September 26, just before our diagnostic ultrasound for Verity. This was a good and productive meeting. Sara was very well prepared and gave us a lot of positive information about babies and children with Trisomy 18, some of which is in written report form that I was able to take home and peruse when I had more time and brain cells.

Based on our ultrasound findings, both in September and in October, Sara thinks Verity has a good chance of survival. Obviously there are no guarantees, and there are often things that ultrasounds can NOT pick up, but the overall picture shows us that she seems to have a “head start,” so to speak: if any baby were to have a positive outlook with this diagnosis, our Verity would seem to be one who may enter the world ready to fight the good fight.

Sara’s whole demeanor was extremely positive and encouraging. She said she was going to give us the full story of the hopeful end of the spectrum, even though we are all fully aware of the grim statistics. In her words, we would get enough of the negative from plenty of other sources, so she wanted to focus on things that would be helpful for us in the event that we are able to bring Verity home from the hospital.

So we discussed things like feeding options, breathing assistance, and so on. Ted had to leave a bit before our meeting time ended since he had to get to the airport for a work trip. I was bummed that he had to leave before we saw the NICU doctor but figured it wouldn’t be a big deal to fill him in on the information later.

As it turned out, I definitely could have used the moral support.

Dr. B works in the NICU. I was looking forward to hearing what measures the medical team would naturally take at the event of a Trisomy 18 birth. I was rather startled when nearly the first thing out of his mouth was something about dealing with a “retarded” child. He then seemingly excused his use of that term by explaining that he grew up with a “mentally retarded sister.” Over the course of our meeting—which was less a conversation than it was me listening in stunned silence—I gleaned some information that gave a bit of insight into his wording and overall lack of understanding or compassion for this situation.

His sister did not get enough oxygen at birth, and so she lived her 19 years with a mental handicap. This apparently took a toll on the whole family; he spent a fair amount of words talking about the importance of “buy-in” from the whole family, because when there is a baby/child with these kinds of needs, everybody must pitch in and help. And while I don’t disagree with that, I firmly believe our family has a MUCH different perspective already…our kids understand that we have to work hard together and serve one another in order for things to run halfway smoothly! If we want to have fun, for example, we need to be willing to work together to create the time and space for certain memory-making times to happen. But life in general involves putting others’ interests and needs ahead of our own. We don’t always do this with humble, Christ-like attitudes, but still…we have this basic understanding from Scripture and work hard to teach it to our children. A precious moment that lives in my heart just from today? Seeing my 13-year-old son holding his 3-year-old brother by the hand and leading him to the family room for a story so Mom could finish something in the kitchen. My kids ALREADY help their siblings, and they don’t resent it (most of the time!). They distract the baby while I’m wiping her poopy butt so she doesn’t spread the mess. They watch out for little ones who are trying to explore something that could be harmful. They read and color and play with each other. Even the older ones look out for each other…maybe doing someone’s chores when they have other activities or making sure a sibling doesn’t feel left out at a youth event.

I digress. Back to this meeting, which I do wish I had recorded to make things easier for communicating with Patient Services. It’s been a few days, and my emotions have simmered down. I don’t remember exact wordings for everything, more like impressions. One such impression was related to the “buy-in” comments, making me visualize a family meeting where we all sit down to have a vote…are we going to “let” Verity live what this man considers a “futile” life (that word IS one he used with alarming frequency), or do we have better things to do?! (Please note he did NOT actually say this—this was an impression I got upon listening to what he did say.)

Another idea had something to do with his own experience…a child like this (i.e. mentally/ developmentally delayed) takes a toll on the whole family. It is a strain mentally, emotionally, financially. For example, Mom couldn’t take the kids to Disney World because of the sister who would have needed special care. Really?! While I love the idea of taking our brood to Disney World, there are definitely more important things in life.

In between these opinions I did at least learn that the medical staff will do basic, necessary measures such as resuscitation, assisting with baby’s breathing, giving feeding help, etc., UNLESS we instructed them not to do these things (which for us obviously isn’t an option). Beyond that…Dr. B indicated that we will need to figure things out depending on Verity’s particular situation and decide what measures we would want to pursue. He spent a fair amount of time talking about heart surgery as an example before admitting that Verity’s heart actually looks quite good, so that shouldn’t be something we need to deal with…but in the event that it does come up, there is a surgeon who has considerable experience and would be there for us. In any case, he made it pretty clear that his own opinion, and seemingly the opinion of most of the staff (he apparently spoke for them all?!) no matter what their “religious affiliation” was that beyond the basic care given immediately after birth, it would be pretty “futile” to do anything else.

I’m sure folks are reading this thinking, “Why didn’t you give him the what-for?!” And truly, as I drove home, shaking with anger and wiping away tears, I thought of a boatload of things I could have or should have said. But perhaps you’ve been in a similar situation where you felt punched in the gut—caught completely unaware, listening to someone say things so far removed from what you expected to hear, that you couldn’t even formulate words in your own brain, let alone speak them.

I did work to wrap up the meeting sooner rather than later, and as I reached for a Verity card to leave with this doctor, I was stunned yet again when he asked me, “This is your last one, I hope?” He then went on to ask what my “religious affiliation” was.

Good grief.


I was as polite as I could be and simply pray that the photo card I left with him will speak volumes of truth to his heart. No matter how long Verity lives, she is ALREADY a blessing and a gift. She is not a mistake. Her life is not futile. As her family, we may have fears and doubts about our abilities to care for whatever her unique needs are going to be, but we don’t doubt that God has beauty and purpose in all things and that He will be glorified.

I created these photo cards to give out to people whom we meet along the way...maybe those who are already praying for us or those who strike up those polite conversations in the grocery store. I know there are days when trying to answer may cause me to be emotional; or there are times when I want to speak truth about our situation but don't have time to share everything. These cards have made their way into a number of medical caregivers' hands as well as our local prayer circles. They also serve as a good reminder to us as Verity's family!

Wednesday, November 2, 2016

Raw, Ugly Truth

Yesterday afternoon I had two consultation appointments at the university medical center where we have had Verity's ultrasounds and where we anticipate birthing her. The first meeting was with the wonderful genetic counselor with whom we met immediately prior to our diagnostic ultrasound. The second was with one of the NICU doctors. While I do plan to unpack the information (and opinions) we received yesterday, I feel pressed by the Lord to first be completely open about my own personal struggle. I'm still dealing with the log in my own eye.

It's ugly. It's painful. And I need God to fully deal with it. I don't know how long this part of the journey will take (I suspect it will be an ongoing struggle), but I know it's all part of His refining fire. (That doesn't mean I have to like it.)

Anyway, below is what I wrote in my prayer journal yesterday morning...more to come later, I'm sure...

****************

Job 30:16-22 [part of my assigned daily Scripture reading] seems so real to me today.

"And now my soul is poured out within me; days of affliction have taken hold of me. The night racks my bones, and the pain that gnaws me takes no rest. With great force my garment is disfigured; it binds about me like the collar of my tunic. [My non-academic paraphrase: I feel as if I'm choking.] God has cast me into the mire, and I have become like dust and ashes. I cry to you for help and you do not answer me; I stand, and you only look at me. You have turned cruel to me; with the might of your hand you persecute me. You lift me up on the wind, you make me ride on it, and  you toss me about in the roar of the storm."

God...this heaviness. I can't bear it. Help me. I have no right to ask for your help, no right at all on my own merit. You know the depths of my heart: the ugliness. Selfishness. Resentment. Fear. Feeling resigned to a burden I may carry for...who knows how long? As awful, as ugly as it is, I can't be anything other than completely naked before you. After wrestling and somewhat coming to terms with the real possibility that our baby may die...I find myself now completely terrified that...

...she might live.

Devastating. I'm devastated to face that ugliness inside me. I'm ashamed of what it reveals about me. I'm sorry to say that my heart isn't always in line with what I know is true...

  • Your grace is sufficient.
  • Your power is perfect in my weakness.
  • Your mercies are new every morning.
  • Your faithfulness is unending.
  • Your steadfast love never fails.
  • You carry all my burdens.
  • You give joy in the morning.
  • You work all things for good.
  • You will accomplish your purposes.
  • You are refining us and making us more like you.

What can I say?? You've never "listened" to me when I've cried out, "ENOUGH! I can't take any more!" My hands were more than full when Kenna came along! And though I can't imagine life without our precious Kenna, Lucan, Zaden, Seanin, and Rhema, I AM FULL. OVERWHELMED.

I know special-needs families LOVE their children. Life revolves around serving these vulnerable, precious ones, and they wouldn't trade it for anything. I see, hear, feel the love as they talk or type about their children. I already love Verity, and I wouldn't trade this for my own plans--we all know that your plans and ways are much higher than ours. I know. I know. I KNOW.

But.

Sigh.

Someday maybe I won't need the but. Today is not that day. Today I look ahead and see real possibility of a life centered around medical appointments and special equipment for our special girl. I see lack of sleep, lack of order, lack of energy for my marriage and our other kids--our eight other precious kids whom YOU have given to us. Certainly no room for a business or ministry outside my home. Sure, I also see a lot of growth and compassion and love. But. (There's that word again.) It comes with a huge dose of exhaustion and ever-present concern.

And I am utterly, completely overwhelmed.

Sunday, October 30, 2016

Of Demon Bugs and Broken Alabaster Jars

Written in my journal October 28, 2016, at a beautiful setting for our fall ladies' retreat:

I'm at the retreat center now, sitting outside on a beautiful late afternoon, feeling the wind in my hair, the cup of hot tea on my lap, and little Verity dancing in my belly. I'm on a wooden bench in front of a simple wooden cross. The lake behind and below this little overlook is entrancing with its endless ripples moving in the same wind that sways the branches above me and tosses leaves beneath me.


It is extraordinarily peaceful. I long to fully enjoy this quiet solitude. But I am irritated by these stupid little stinging black bugs! They have been a source of evil distraction since I first sat down, causing me to don my sweater despite the warm temperature. I've swatted and murdered a growing number of these diminutive demons, but their constant presence is definitely marring this experience! I had hoped for some poignant, reflective moments, maybe a rhema word from the Lord. And while I have searched out some Scripture and used my Blue Letter Bible app for a quick word study, so far this hasn't been the spiritual awakening and/or renewal I was envisioning!

Somehow that seems all too appropriate. I sit at the foot of the cross, longing to fully worship my Jesus but instead swatting at the demons of fear and anger, whose legions continue to torment me even though through Jesus I live in a place of rest and peace. I realize--NOW--as I write this--that these horrid little bugs, stirred up by the recent harvest, will linger through these warm, mild days, finally dying in the cold and dark days of winter.

As I think about the darkest times in my life up to this point, I realize that my deepest worship, the truest worship I have ever been capable of offering, has come in the cold, dark days of winter: times of death, loss, pain, hardship. And the doubts and fear? Gone. Dead. Completely overshadowed and overcome by the One who is worthy of all my worship, not because of what He did or didn't do in that season, but simply because of WHO HE IS.

I don't know what our "winter" with Verity will look like. All I know is, my current struggle with the demon bugs is all too real. Yet I say with Job, "Though He slay me, yet will I trust in Him" (Job 13:15). I hate the unknown, the uncertainty, with a passion. It's where the fear and frustration live and grow. But one thing I know--when the winter comes, I will yet praise Him. And the praise will slay the demons.

God...I have to trust you more than I need to explain you. I choose to continue offering myself to you. I want answers...I want a reason...but so much more than that? I want YOU. And I want you more than I want a sense of control. When my fingers tighten around the bottle you're asking me to pour out, then Lord--give me strength and courage to break that alabaster jar and let the extravagance overwhelm me and all who are near enough to inhale that fragrant offering. Make your name glorious, Jesus...my beautiful Savior.

Friday, October 28, 2016

Ultrasound #2: Feelings

I was full of anticipation Monday morning as we looked forward to seeing Verity's sweet little self on ultrasound shortly after lunch. I met Ted at the medical center...where the whole appointment seemed to be over in the blink of an eye.

And it all felt like a chasing after the wind.

We had some answers, a few precious facts to hold onto. But somehow they weren't enough. They weren't what I was looking for. Which begged the question...what exactly WAS I looking for...longing for?

I left the medical center planning a few stops before going home. Mostly I wanted to be alone to try to figure out my thoughts and feelings, which seemed so strange and foreign inside my own head. My first stop was a beautifully peaceful place, a crisis pregnancy center across the street from the abortion clinic where a few weeks ago we took part in an ongoing prayer vigil. I wanted to drop off some outgrown toddler clothing and meet one of the sweet volunteers who has corresponded with me a bit since learning about Verity. I got a quick tour of the facility and heard more about the loving and compassionate services offered there. I'm glad I stopped; it was a bright spot in a confusing day.


Traffic and miles of highways gave me plenty of time alone in the car to think and pray. Why was I feeling so emotional? Why, my soul, are you downcast? Why so disturbed within me? (Psalm 42:11a) What was my problem? The news about Verity had all been good--so many answers to specific prayers. And truly, I AM grateful for the good report.

Anger.

Seemingly out of nowhere, a rage roiled inside of me, even as I felt the crushing weight of despondency. And it took shape more quickly than the words I tried to form in prayer. (I'm ever so grateful the Lord understands our hearts.)

Anger at the clinical approach and unhelpful explanations from the doctor regarding the ultrasound.
Anger at her constant referral to our baby girl as it.
Anger at the feelings of helplessness and uncertainty.
Anger at having to be in the position of WAITING...interminable waiting...instead of planning. Don't we do enough WAITING as a military family?? Always waiting, waiting, waiting, uncertain about what is coming next. WAITING for specific leading from God--to retire after 20 years next summer or not? Before Verity's T18 diagnosis, we felt a peace about staying on active duty. This of course has us again in the position of WAITING for that next assignment...but knowing (what little we know) about Verity, everything seems extraordinarily more complicated. Will we be moving as a family of 11 with a special-needs baby...or as a family of 10 grieving the loss of a child, a sibling?

And fear. Oh, the fear.

It's ugly. There are so many days I don't have time for fear, other days when it simply isn't a part of life because LIFE is too full of God's joy and peace. When I'm living in worship, walking by faith instead of by sight, purposefully engaged in what God has called me to do...when my head rules my heart...fear is not a factor.

But. Feelings have a mind of their own, don't they? And so fear washes over me inexplicably, even as I experience the precious peace that never truly leaves but somehow seems quiet in those moments of crashing, frightful waves.

And so I sat in our driveway after a long afternoon of medical talk, errands, driving, thinking, and praying. I sat quite awhile, overcome by these powerful emotions that I hated to admit I had. Don't I trust God? Don't I take Him at His word? Hasn't He proved Himself loving and good and faithful no matter what my circumstances?

YES. All that is true.

But what I'm feeling is also real.

Our wise small group leader told us, after texting Ted and me particular verses meant to encourage us, that he knows Scripture isn't just platitudes...he wanted to make sure we understood his intentions, that he wasn't simply quoting verses to make the hurt go away and "fix things." Truth is truth, regardless of feelings.

I'm heading into this weekend feeling pretty battered and bruised emotionally. From anger so powerful it left me shaking in the driveway Monday afternoon to gut-wrenching fear that still rips at my heart when I least expect it, I've felt pummeled even as I strive to tread water amidst the "smaller" waves of sadness and confusion. In searching for tangible answers to my Trisomy 18 questions, I've only found more uncertainty.

On Christ the solid Rock I stand,
All other ground is sinking sand...all other ground is sinking sand...

For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known. 1 Corinthians 13:12, KJV

I've told our kids multiple times that our God is big enough to handle questions and doubts. I don't want to serve a God I fully understand--how would He then be GOD?! The truth is...I will never have things figured out this side of heaven. I will continue to wrestle. But like Jacob (Genesis 32:22-32), I won't let go until He blesses me.

Why, my soul, are you downcast?
    Why so disturbed within me?
Put your hope in God,
    for I will yet praise him,
    my Savior and my God. 
Psalm 42:11

I want to end with this verse, a hopeful note, a note of confidence in my Savior and my God. It does seem a tidy way to end this blog post...yet I feel it somehow wouldn't be completely honest. There is so much more I could say about this struggle, so many more details I could give about specific fears that haunt me. And Lord willing, I will bare it all; this isn't my story, but His. My deepest desire is to honor God, and even though some of the sharing is going to be painful and ugly...I think that just as I have to wrestle with the downcast, disturbed parts of me in order to get to that place of hope and praise...I also have to reveal that struggle so that--just maybe--others will also put their hope in God.

Special thanks to those who are wrestling with me in prayer...

Tuesday, October 25, 2016

Ultrasound #2: Facts

We had another ultrasound yesterday since the last one had not yielded good visibility for Verity's heart. I was so looking forward to getting another glimpse of our baby girl, whose movements grow increasingly stronger day by day. I was also anticipating some answers--something, anything--that might help us prepare for what Verity will need, what she will be like, upon her arrival.

Verity was in the exact same position as at the ultrasound 4 weeks prior--face down--but her increased growth allowed much better visibility for the tech whose priority was to get good shots and measurements of her heart and profile. Aside from her little feet turning inward and the clenched hands, both typical of Trisomy 18, everything looked so beautifully normal to us as parents. Our technician was kind and talkative and able to complete her tasks quickly. It wasn't long at all before we heard from Dr. B, the female doctor who had spoken with us after Verity's last ultrasound.

I will do my best to summarize the facts as we learned them yesterday. Considering it has been 24 hours and I did not take written notes, I may very well forget something, but here is what I remember the doctor telling us:

  • The baby's heart looks very normal--this was an immense relief and an answer to prayer, as many T18 babies have heart issues. We have been praying that we will not have to make a decision about any major interventions that may cause harm to Verity, and knowing her heart is healthy in utero gives us peace.
  • Verity's profile is absolutely beautiful. Oh wait...I'm supposed to be giving facts here, not opinions! ;-) But that is my interpretation of what Ted and I saw on the monitor coupled with Dr. B's assessment that there is no sign of a cleft lip (which could indicate a cleft palate but is not something that can be determined by ultrasound). Again, cause for celebration. I firmly believe that no matter WHAT this precious baby's appearance, I will see her as beautiful; however, one of my prayers from the beginning has been that our other children will feel connected to and not repulsed by their baby sister. Additionally, it gives me hope that perhaps I will even be able to nurse her. 
  • Despite slowed growth being typical of T18 babies, Verity is of an average weight for a baby at 22 weeks gestation (about a pound). Now that I'm typing this out, I realize I neglected to ask specifically about her head circumference, which was in the 5th percentile last time. I will see if I can find out anything about that.
  • The doctor could see no other physical concerns that were not already noted in the previous screening. Again, reason to praise the Lord!
  • Based on this assessment, Dr. B is even questioning the need for Verity to have to be in the NICU, assuming she arrives close enough to her due date and is delivered without complications. She also suggested that whether I chose to do a C-section delivery or not would not make any difference. Now...the fact that she said these things is...a fact...but...this leads me to a topic for what obviously needs to be a follow-up to this post, which is feelings...so, I will unfortunately have to leave you hanging there for now.

Dr. B asked us some questions we honestly could not answer, mostly because it seemed so many of those answers would have had to begin with the words, "It depends..." I don't remember all of the questions, but I do remember phrases like hospice care, medical interventions, and ethical decisions. As Ted and I stared blankly at each other throughout these queries, it became all too obvious that, despite the reading we have done, we simply do not have enough information to equip us for the wide range of possibilities ahead of us.

So...we left the medical center with another appointment scheduled for next week: a consultation with the genetic counselor as well as a doctor from the NICU. These folks will be able to help us think through the "what ifs." Actually, perhaps it would be more accurate to say they will first help us know what exactly some of those "what ifs" are...

Despite hearing all of these facts, we left somehow feeling as if we know even less than we did before the ultrasound...

Saturday, October 22, 2016

Beautifully Ordinary

At breakfast I noted the date and said to my husband, "It's been a month since we got the phone call from the doctor."

His reaction: "It's only been a month?!"

We've done a whole lot of living in that one-month period...celebrated two milestone birthdays; traipsed in and out of libraries; made trips to the dentist, chiropractor, and women's health clinic; watched the trees turn colors; muddled our way through math lessons and science experiments; prayed together; laughed together; cried together.

Homemade pizza.
Loads of laundry.
Birthday cake.
Read-aloud time.
AWANA verses.
Praise team rehearsals.
Meeting friends; changing diapers; cooking meals; stepping over Legos.

So many normal, mundane things and activities. So many wonderful, familiar faces. So much depth and intensity in the ORDINARY, simply because we have been granted the gift of awareness.

And this morning, the gift of an ordinary mommy moment...what we've always called the Morning Coffee Dance in my pregnancies. (It used to be the Hot Tea Dance, back in my younger years when I thought coffee was awful.) Soon after downing my first sips of hot goodness, I felt the familiar flutters of baby movements. So precious. So...normal.


Our Verity is very much alive. She is an extraordinary gift, and we will cherish each moment with her.

Every
beautifully
ordinary
moment...

And even...maybe especially...the not-so-ordinary ones.

Friday, October 21, 2016

Feeling Loved

When you receive a book in the mail from a friend the same day a different friend sends you a link for that same book...

When you receive multiple hand-written expressions of support and encouragement in your mailbox...

When your phone buzzes throughout the day with messages brimming with prayer and God's promises...

How can I help but feel God's tender love?!

Sunday, October 16, 2016

Supportive Friends, Part 2: Connections

Our family has been overwhelmed (in a good way!) by the love and support we have seen over the last few weeks. One way a number of people have reached out to us is by sending messages telling us about someone they know or have heard of who has experienced a similar pregnancy diagnosis to ours.

I think it's human nature to desire and seek out connections with others who have commonalities with us. Being more of an extrovert myself, I usually thrive on relationships, both in-person and online. But I have a confession to make...right now, I don't feel I have the mental or emotional capacity to personally respond to what feels like an inundation of new contacts. While our family made the decision to be very open with Verity's story, letting others in to read about and experience this journey with us (if they desire), I am not sure I'm ready to venture too far out of my "comfort zone" just yet. 

Do I accept all of these "Friend Requests" from people I don't know personally? Do I need to write to everyone whose contact information I've been given? After pondering and praying for awhile, I feel peace about saying NO in many cases. 

This is not to say I don't want to hear from other families who have already trekked down a path that looks like ours. Indeed, I've already been blessed by some connections set up by mutual friends. It is simply amazing how many folks know someone who has experienced or is currently experiencing something like our journey with Verity. And it's humbling to read so many sweet messages of love and encouragement as friends reach out to me in private messages offering someone else's contact information.

It would be a full-time job to keep up with all these stories...as much as I would love to! So here is a general, blanket response I give here in a public forum, again speaking personally and not necessarily for every parent in my situation: I am happy to hear from others who have been down a similar road, but please know that I do not feel I am in the position to be the one making initial contact. And please do not be offended if I don't reply right away to an offer for a "Trisomy 18 set-up;" it's only because it's not the only "blind date" I've been approached about. ;-) If people would like to email or private message me their story, that is the easiest way for me to absorb information and glean from other people's experiences...on my own time, when I'm emotionally able to handle whatever it may be. (I have yet to watch a video a sweet lady sent me about her own darling baby girl...I started watching it and realized it was set to music...and knew I would be a sobbing mess before it was over!! Since I was getting ready to leave the house shortly afterward, I opted to wait to watch the whole thing!)

From friends who say they really don't know what to say to friends who are moved to share someone's story with me, I have to say we know some truly wonderful people! Please know we are deeply moved by the prayers and concern of so many.