Knowledge Is Power: Trisomy Resources

In the Trisomy parents' Facebook group I've been involved with since our diagnosis with Verity, I frequently see posts from new members who are either awaiting test results or who have just received confirmation of a rare diagnosis. Oh, how I identify with the precious mom or dad's feelings of being confused and overwhelmed! I know my first couple of posts filled with questions probably sounded very similar. How grateful I was for the members who swiftly responded, answering questions as best as they could and sharing pictures and stories of their children.

Recently my heart was so moved by one of these "newbie" posts, and as I left my own comment, I couldn't help but feel grateful at how far we have come in the 5 months since learning what exactly Edwards Syndrome/Trisomy 18 is. I gave advice that I wish I had known in the beginning: while waiting for test results, resist the urge to GOOGLE!! Instead, if one simply MUST research, direct those efforts toward searching out those who actually live and work with Trisomy babies/children. For those parents with a diagnosis, there are Facebook groups available that are much more current and interactive than, for example, this Trisomy 18 support group I found initially. This forum is not a bad resource by any means, but it did not contain the wealth of contacts and ease of accessibility as the private FB group that I later found through a new friend's help. (I do still visit it from time to time; new posts are few and far between, but I've been able to encourage some folks by dropping in now and then and sharing a bit of our experience).

Many of the parents whom I've met through this journey have their own Facebook pages available for the public to follow. Quite a few of these precious little ones have their own fan clubs cheering them on and praying for them each time they hit a new obstacle. It's really a wonderful thing to share stories and help educate others about this particular special needs community. Here are some examples of pages (shared with permission because they are open to educating others):

Team Benjamin: A Celebration of Life with EA & Trisomy 18
Adventures with Annalea
Remembering Noelle Faith
Diary of an Almost Father
Danny's Miraculous Trisomy 18 Adventure
For the Love of Lillian: A Trisomy 18 Adventure
Addilyn's Odyssey, a Trisomy 18 Journey
Jonah's Journey with Trisomy 18
Adventures with Addalyn and Trisomy 18 (This one is private but Mom says she approves "non-crazy" people, lol!)
The Joy Gabriel Brings
Celebrating Nate

There are many, many more, and I'm sure a search on Facebook could easily lead you to others. (Also, if you "like" one of these public pages, FB will helpfully recommend similar pages for you.) My point here is to help educate and equip people to turn around and educate others who find themselves on a journey similar to ours. When a parent receives word of an "abnormal" diagnosis, fear is crippling. Even the RISK of a positive test result incites fear and uncertainty. But knowledge is power. At the same time, there is a lot of JUNK out there on the internet (and I'm not even talking about politics, lol), and if people find what they think are "answers" in places that really don't have current information, they can make poor decisions that they may very well regret the rest of their lives.

So, if you find yourself listening to a friend sobbing on the telephone or answering a slew of emotional texts from someone who has gotten That Dreaded Phone Call from The Doctor, my advice is to listen, pray with your friend, and then give hope and encouragement. No matter what the diagnosis, there IS support. There IS accurate information...as well as inaccurate. Help your friend find the resources needed to navigate the journey ahead with full awareness.

More specific resources for families expecting Trisomy babies:

Hope for Trisomy web site
Trisomy Angels Memorial Website
Support Organization for Trisomy 18, 13 and Related Disorders
TRIS (Tracking Rare Incidence Syndomes)
ITA (International Trisomy Alliance)

Hope for the Best, Prepare for the Worst

HOPE. It's a word I've seen over and over during this journey with Verity and her diagnosis. Edwards Syndrome, a condition I had never even heard of before autumn hit, has become an all-too-close reality over these past months. It has been exactly 5 months since I picked up the phone and stood in shock listening to a doctor tell me about Trisomy 18 while assuring me that my risk factor was "only 1 in 10" but that she recommended further diagnostic analysis.

In those 5 months, we have learned so very much. We have become connected with families whose lives revolve around this rare condition as they sacrificially love the precious little ones who have been entrusted to them. Five months: for some of these dear families, little ones have been born, lived, and died within that span of time. Some are even now fighting for their lives in hospitals. Some didn't make it to term but were born with dignity, cherished, photographed, and are still loved and missed.

When a new member joins the Rare Trisomy Parents Facebook page, the introductory message is often filled with fear--a family is awaiting testing results and has heard their child might have a rare trisomy condition, or they have just received a confirming diagnosis and are terrified of what the future will hold. It is a beautiful thing to watch comment after comment appear on the thread, with photos of beautiful children of various ages being posted along with words of encouragement and HOPE.

"There is always hope." 
"Never give up hope." 
"Hope for the best."

Hoping for the best undoubtedly looks different for each person, each family represented. Part of our own personal struggle during this journey is discerning what, exactly, ARE we hoping for?? In the beginning, it seemed enough to hope that Verity would be born alive and everyone in our family would get to meet and hold her. The more we learned and interacted with families who are raising living T18 children, the more we began to adjust our expectations: with no significant anomalies showing on ultrasounds, Verity certainly seems to have higher-than-usual chances of doing well after birth. And I've read and seen so much that has led me to prepare to be the mother to a special-needs child who will be with us "long-term." (Even T18 babies who do well only have approximately a 5-10% chance of reaching their first birthday; still, there are a number who are living well beyond the one-year mark.)

Our hopes, our expectations, swung from fairly dire on one side of the spectrum (we hope to meet Verity alive before we have to bury her) to the other extreme of the realm of possibility (we hope she will need minimal interventions and proves to be the exception to the Edwards Syndrome "rules").

The problem with emotions is that they don't stay in a box. Three weeks ago joy surged in my heart as I anticipated giving birth to Verity. Whatever happens, I know God is writing this story, and I desire to focus on HIM instead of ME. Our number one prayer from the beginning has been that God will fulfill HIS purposes for and through Verity. Thank the Lord for His steadfastness and for facts that don't change with our feelings...

A few nights ago when I was having regular (painful) contractions, I got up in the night to sip water and read over recent posts in the Trisomy parent group. The picture of a beautiful infant girl caught my eye, and I wept as I read her mama's announcement that this sweet baby was born February 16 at 42 weeks, weighing 6 pounds, 4 ounces, and lived exactly 48 hours before being taken to heaven.

It hit me like a tidal wave: Verity is already a full-term baby and looking to be a relatively healthy weight. I've been making assumptions I have no right to make. I sobbed. I begged God, Please...let my parents get here in time to hold Verity. The truth is, I really have NO IDEA what will happen once our daughter is born. I can't take anything for granted. God doesn't owe me a thing--rather the contrary! He gave His only Son, Jesus, as a sacrifice for my sin, the only sacrifice that would satisfy the requirements for atonement. Mercy triumphs over judgment because of God's incredible love for each person He has made...

...including medically fragile Verity...
...including her emotionally fragile mother.

I was a weepy mess that night. I went back to bed when the contractions subsided, hoping to get a bit of sleep, and I found myself in a dialogue with God. I'm not necessarily a "sign reader," seeing "omens" or whatnot in any and every circumstance, but it seemed that in the span of a few short days, gentle reminders were coming at me from all directions with a common theme of not taking anything for granted, that pain and loss and death are inevitable during our time on earth, that God's glory is displayed in our weakness, and that His purposes are loving, good, and eternal.

Whatever happens...whether it is the "best" or the "worst"...I believe God has been preparing us for it. I believe there is purpose in all of this and that Verity is (and will continue to be) bringing people into a closer relationship with Jesus. Her life AND her death will glorify her Creator.

We have almost come to the end of this pregnancy journey, and I'm reminded of the Scripture passage we included on our Verity photo cards that we have given out to so many people over the past few months:

Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in HOPE of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces HOPE, and HOPE does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:1-5

This hope is not an "I hope something good will happen" kind of a hope! No, the hope Jesus gives is the assurance that what God has promised is indeed truth. We named Verity to remind us and to share with others the TRUTH.

Have you been justified by faith?
Do you have peace with God through Jesus Christ?
Have you received grace?
Do you rejoice in having assurance of an eternity in heaven?

If so, then you can rejoice in any suffering you may be experiencing--even if, like me, you are weeping from time to time because of it.

If not, then know that you are in my prayers. We often pray for loved ones who haven't yet accepted or acknowledged that Jesus Christ is THE way, the truth, and the life and that no one comes to God except through Him (John 14:6). Verity's diagnosis 5 months ago caused us to specifically be praying that God would draw people to Himself through our baby girl and the journey our family has been given with her. Please know that Ted or I would love to talk with you if you have any questions about any of this!

There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and whoever fears has not been perfected in love. 1 John 4:18

Today's Appointment

Time flies when you see the OB weekly! It was a fairly quick visit, so I'll keep this post brief:

• I may have actually lost weight this week...but maybe that's because they took my potty sample before putting me on the scale, lol! Seriously, I have not even been tracking my weight this pregnancy. There are enough other things to be concerned about!
• My blood pressure continues to be stellar. 
• Verity's current favorite song: "Just Keep Swimming, Just Keep Swimming!" Clearly she is doing well.
• I'm 39 weeks, 3 days, dilated a whopping one centimeter with no other signs of imminent labor. 
• No one is at all concerned about discussing induction (unless I were to be in favor of that, which is a big fat negative). This makes me very happy.
• We scheduled another ultrasound for next Tuesday. Hooray!
• If the ultrasound shows that Verity is still tracking upward growth-wise, we will leave well enough alone. If for some reason it looks like she is not doing well, then of course we will discuss what needs to happen next.
• Typically the docs would begin encouraging inducing around 41 weeks, but they are fine with allowing us to get to 42 weeks (again, assuming Verity is doing well in utero). 

I'm pleased with knowing the doctors are on board with allowing us to do what we feel is best. I'm also fairly relieved that my body, despite having lots of contractions on a fairly regular basis, does not seem to be in a big hurry to deliver Verity, at least as far as is possible for us to determine. We have some loosely-held plans for this weekend (including my 3 teens attending a Christian youth rally and celebrating my daughter's 10th birthday with her friends), so it would be nice to get past the weekend! 

Kenna's actual birthday is February 27, but we ended up having our family celebration last night as a just-in-case. The girls planning to join us for her friend party know that things depend on what is happening with Verity, so we will see!

Verity's Birth Plan

Verity has a raging case of the hiccups tonight, and that plus a few fairly painful contractions served as a wake-up call awhile ago. I am sipping water and trying to decide whether things are going to settle down or pick up...and that has me contemplating the reality that regardless of whether this is IT or not, our baby girl WILL be making her entrance into this world in the very near future! For now, we rejoice in the fact that we have officially made it FULL TERM (39 weeks + 2 days now)!

I was thinking recently that I wanted to post Verity's birth plan on this blog. In all of our 8 children's live births, we have never before written out our thoughts and preferences for a birthing scenario, but this time, a thoughtful, much-prayed-over plan seemed necessary and appropriate. Aside from the text box at the beginning giving the names of our family, photographer, and pastor, the rest of the plan is outlined word for word below. If if can be of help to anyone else, you are welcome to share. I know I drew heavily from some sample birth plans of other Trisomy parents, and I also asked for and received good input from some friends in the nursing field (particularly NICU nurses).

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Prenatal Diagnosis: Full Trisomy 18, diagnosed via amniocentesis at 18 weeks

Prenatal Ultrasound Observations:

·         Clenched fists

·         Clubbed feet

·         Delayed physical growth

We believe Verity is a true gift from God: every moment we have had and will have with her is a blessing. Although we have a realistic view of Verity’s diagnosis, we have never stopped praying for her. Additionally, we have done our own research and made contact with other families in recent months. We have learned that FT18, contrary to being “incompatible with life,” is instead a condition that, while certainly dealing with special needs and challenges, does not preclude the child or her family from experiencing the joys of life…no matter how short or long that life may be.

We ask that our baby be referred to by her name, Verity, rather than “baby,” or “fetus,” etc.

We would like to find a comfortable balance between interventions to help her live longer and not creating any extra needed pain or discomfort for her. We would like any interventions to be based on vital signs and Verity’s specific needs, rather than her diagnosis of Trisomy 18.

It is important to us that no one enters the room during or after delivery without being fully aware of our situation and wishes – this includes family and medical staff.

NOTE: We reserve the right to alter this birth plan at any time during this process!

Labor & Delivery:

Pain Relief: no narcotics - epidural only as I wish to stay alert and aware

Vaginal Delivery: I have had 8 previous vaginal deliveries, and so this is the preferred method. However, we would like Verity monitored during labor, and if she shows continued signs of distress we would like a C-section delivery if it means the difference between delivering her alive instead of stillborn. I would like to tentatively plan on getting an epidural immediately after being admitted since we expect Verity to be small and labor may be short. I will do what is necessary to help stabilize her and deliver her alive. I wish to have my husband and photographer present in the room during labor and delivery, and depending on circumstances, my oldest two daughters (Charis and Kenna) may desire to be present—if there is no impending emergency, I fully plan to allow them this opportunity.

C-Section Delivery: If a C-section is needed due to fetal distress and could get Verity out alive, we would like to switch to this option. Please keep my pain management to epidural only as I would like to remain alert and aware. I would like my husband and photographer in the room.

At Birth:

·         We would like Verity immediately placed on my chest after birth.

• We are ok with immediate resuscitation if needed (CPR, oxygen etc…) If intubation is the only thing keeping Verity from living, and its effects will be treatable moving forward, meaning her heart is functioning well and nothing else is causing life-threatening concerns, please proceed with intubation.
• She is to have delayed cord clamping from the umbilical cord for at least two minutes after the placenta has been passed.
• We would like as much skin-to-skin time as possible.
• Any evaluations that need to be done immediately, we ask for as much as possible be done on my chest. Any routine care (suctioning, toweling off, oxygen, eye ointment, vitamin K etc…) can wait as long as possible so we can evaluate Verity’s condition and give her as much skin to skin time as possible.

·         We would like Verity to be evaluated to determine if there are any esophageal abnormalities before attempting feeds. (See also Potential Medical Care section.)

• If Verity is able to nurse, we will try to do so. (I have successfully nursed all 8 of our children but not without a variety of difficulties from time to time.) We understand that Verity may very well need help, whether through a feeding tube or other method than nursing, and we support interventions that will allow her to receive nourishment in the early hours and days after her arrival if she is unable to orally feed either through lack of suckling reflex or any esophageal abnormalities.

Post Delivery:

As parents we would like to follow Verity’s lead during all interventions to find a balance between helping her live longer and not putting pressure or pain on her body that she can’t withstand. We would like Verity’s life supported based on her vital signs and any of her specific defects, NOT based on the Trisomy diagnosis. We would like all possible resuscitation work on Verity to be done in the delivery room OR near the parents. If Verity has to be taken elsewhere for care, Ted will go with her, and I would like to be taken to her as soon as possible.       

We understand that after birth Verity may have more or fewer medical problems than originally anticipated. We ask that all treatment options be discussed with us as parents as you see issues arise. No students or unnecessary staff present, please. Please hold off on all non-life saving tests (weight, measurements, bath, footprints, etc.) until Verity is stabilized. Once stabilized, we would like Verity to receive an ultrasound of her heart and brain to confirm any prenatal defect specifics. We do not approve distress medications, such as morphine, unless further discussed. Verity must be accompanied by a parent at all times.

Potential Medical Care Summary:

                        __ delivery of oxygen through non-invasive measures (blow-by, nasal cannula)

                        __ delivery of oxygen through invasive measures (CPAP, Intubation)

                        __ administration of CPR (chest compressions, ambu bag)

                        __ administration of resuscitation medications (ex: epinephrine)

Feeding: We would like Verity to be fully evaluated to determine if there are any esophageal abnormalities before attempting feeds. Aspiration due to low muscle tone is a concern, and we want to protect her lungs.

            __ swallow evaluation

                        __ IV feedings

                        __ nasal gastric tube placed; feedings initiated

            Post Stabilized Tests:

                        __ head ultrasound to determine any specific defects/abnormalities

                        __ cardiac testing to rule out any missed cardiac abnormalities

                        __ sleep study to check for apnea

            For home care:

                        __ Massimo sat monitor for Verity’s pulse/o2 sats

If Verity is stillborn:

We would like to hold Verity as long as we need, waiting to take any measurements or do any routine procedures. We would like to bathe and dress her and have photographs taken. We would like the opportunity to make hand and footprints and/or molds.

At this point we do not have any information on what happens with Verity should we lose her in the hospital, and we would like to discuss these options with the appropriate party.

Finally, we understand and anticipate that this will be a difficult birth for everyone, including the medical staff providing our care. We greatly appreciate your service and understand we cannot do this without you. Thank you for your commitment to our AND our daughter’s care and well-being.

Valentine's Day Check-Up

Yesterday we went in for what may very well be Verity's final ultrasound! It's hard to believe we have made it past 38 weeks with this pregnancy. I really am starting to think it would be just like God to have Verity be our "latest" baby and come well past the 40-week mark! (So far that award goes to Tobin, who arrived only 2 days after his due date...most of our babies have been early!)

My mother-in-law, Rhonda, accompanied me to my appointments, and Ted joined us there from work. What a blessing to share the ultrasound time with her this time! My mom got to see Verity in November during our Thanksgiving week ultrasound, Charis has accompanied us a couple of times, and Ted has seen all but one in person.

Verity's heart rate was great, over 150bpm, and as usual she was wiggling all over the place. She is head down, and we got a great look at her little legs, knees and feet (but no pictures) that showed some meat on those little bones! Best of all was the news that she is weighing 5 pounds, 15 ounces, an astonishing amount of weight gain in 4 weeks...last time she was 4 pounds, 1 ounce! This puts her in the 8th percentile, up from the 4th where she was holding pretty steadily over the course of a few months. This also gives her an even better chance of faring well during and after birth. Her big sister Kenna, the earliest of our babies, arrived at 38 weeks and weighed 6 pounds, 5 ounces. It's entirely possible that Verity will outweigh Kenna depending on how much longer she "cooks!" Our doctor seems to think all is going well and reiterated that the nurses are all on alert and ready for our arrival when the time comes.

Over the next couple of days, I have a project in mind: sorting through Rhema's newborn clothes and setting the smallest ones aside for Verity. Confession: these outgrown clothes have remained in bags in our basement because I couldn't muster the strength or energy to go through them, uncertain of whether they would ever be worn by another one of our little ones. But now...today...I feel pretty darn sure that we'll be bringing our girl home from the hospital! It's time to NEST!

Prayer Requests from Beginning to End

We have reached 38 weeks with no signs of early labor or anything unusual! Even as I thank God for this milestone and for the positive reports we keep receiving, I am sobered as I consider the multiple stories I have encountered over the last few months of Trisomy 18 babies who were stillborn or born a few weeks early only to leave their families not long afterward. I don't take much for granted these days, and though I'll never understand many of the WHYs that are inevitable when considering our journey compared to others' experiences, I know our God is sovereign and worthy of praise no matter what the circumstances. I pray that we will continue to assert that truth if or when we reach a much different end than what we may be imagining.

I was reminded of the list of prayer requests I had jotted on paper very soon after we received Verity's diagnosis; several close friends had asked how they should pray, and I numbly wrote whatever came to my foggy brain early one morning to share with them. Looking back, it is clearly a Spirit-led list. I share it now as a testimony to the way God has led us thus far on this journey...I'll add present-day thoughts to the original list in brackets.

VERITY IRENE--Due Date: February 25, 2017

Prayer Requests

• Kenna's birthday protected (Feb 27)
• Salvation for loved ones
• A live birth and a time shared with family and friends--that our children will feel connected to (and not repulsed by) their sister. [I have absolutely no concerns about this! While I don't know for certain that Verity will be born alive, I can't help but feel that she will...and if not, we will deal with that as the time comes. But our children already are totally in love with their baby sister.]
• That we will see her through God's eyes--see her true beauty and get a peek at some of His marvelous purposes for her life. [Again, this is already happening! What a blessing!]
• Protection during pregnancy for me...physically, the challenges of being older, plus higher risk for preeclampsia. Emotionally. Mentally. [God has been gracious to me indeed; this pregnancy has been hard on my body, but overall things have gone and are going well.]
• Wisdom in getting help/care when needed. [See addendum below this list.]
• Hearts that are soft and teachable--protection against bitterness, anger, resentment, etc. Special understanding for the children especially. [While I believe that we have ALL learned and grown so much in these recent months, this will be an ongoing petition before the Father's throne.]
• That God will reach people who need Him, people who need truth and encouragement. 
• That God will use our story to bring understanding of the value of LIFE.

Addendum:

As our due date approaches and my body does its normal thing (i.e. frequent contractions), a concern I have is that we will KNOW with certainty when it's time to make our way to the hospital. The last 4 babies I have delivered all gave indication of imminent labor that ended up going nowhere. We have even been to the hospital thinking we were having a baby only to turn around and go back home. (This is rather embarrassing when you consider just how many children we have birthed...) But the fact is, I often have periods of regular, painful contractions, and while I've never had a dramatic in-the-car or at-the-hospital-doorway delivery, the fact that Verity is going to be smaller than the average baby PLUS the fact that she is our 9th delivery could very well mean that her entrance into the world could be incredibly swift!

So, considering that under optimal conditions it will still be close to 45 minutes from our driveway to waddling into the L&D ward at the hospital...will you join with me in praying that God will give us clear signs that we need to go? A good friend suggested praying that my water would break ahead of time, which I thought was a brilliant plan since that has never happened before I'm in active labor at the hospital! But again...I need a CLEAR sign...I don't want to be wondering, "Did my water break, or not??"

It's funny, now that I think about it, I haven't really "worried" about what will happen once we get to the hospital; my focus now is getting TO the hospital in a timely manner! However, here are the things we are praying concerning the hospital part of the adventure:

• That the right medical team will be assembled...while I have definite opinions about who I prefer to be (or not be) present for Verity's birth, I trust the Lord will work out His sovereign purposes.
• That we will be able to clearly communicate with everyone involved not only in the birth, but also in assessing Verity's needs once she arrives.
• That our family will be a blessing and a witness to any and all medical staff and other families we encounter during our time in the hospital.
• For the right timing for my parents to be able to travel from Wisconsin to be with us...my mom plans to be here as close to the birth experience as she can, and then she will remain with us for a time afterward. I value her experience as a retired nurse who did home health care for years and years, often caring for children and adults with special needs!
• That every last detail will be attended to--that we will be able to look back and marvel at the many ways, big and small, that God provided for every person's needs during what could otherwise be a chaotic, tumultuous time. I'm thinking especially of things such as child care for little ones at home so that Charis, Kenna, and maybe even both grandmas can be at the hospital for the actual birth. So that would include a decent time of day that we leave for the hospital with enough notice for friends to help!

Thank you to all who have prayed for us along this journey! I am so humbled and grateful for the many, many prayers on our behalf. We would not be where we are today if it weren't for all of those petitions and prayers of faith.

The Master Craftsman

Our pastor gave the following devotional at Verity's shower Saturday evening...

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In the working world, before our modern era, a man would typically work at the same craft as his father.  He would begin his work as an apprentice working under a master for a number of years.  When he was proficient at his craft, he could work on his own as a journeymen and then after many years as a journeymen, he would petition the powers that be to become a master craftsman or master tradesman.  For a journeymen to become a master he would need to produce a certain amount of money, and he would have to create a masterpiece. He would often spend months if not years on this—his finest work—and it was only after he displayed his finest artistic skill and that piece was accepted by the other masters in his field that the journeymen could be called master.  In Psalm 139 we see God as the master craftsman, lovingly at work on His masterpiece, and when we understand the love and care He has put in to us, His creation, it can have a profound impact on the way we view ourselves and others.  

Psalm 139:13-18 “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand— when I awake, I am still with you.”

We think about this child being formed in her mother’s womb.  A perfect masterpiece as God the master craftsman has designed.  We don’t always know the goals and desires of the Lord, but we know He is always good.  And we trust that this child is exactly who God, the great master craftsman, has designed her to be.  There is a great deal we can learn from Verity.  One, that God’s ways are above our ways.  The psalmist also said in verse 6 that the knowledge of God is too much for him to understand.  It is true.  While we may want answers or search for meaning, sometimes we have to know that God’s ways are above our ways, and it is enough to trust that God is in control.  

The second thing to remember is that God has not nor ever will He forget or abandon us.  In verse 17 the psalmist considers the thoughts that God has about him, and he says “they outnumber the grains of sand.”  God is constantly thinking of us, caring for us, loving us and relating to us.  His ways may be higher than ours and difficult for us to understand, but His love is also as grand.  Verity is being woven together in her mother’s womb by the master craftsman who will never forget her and whose thoughts are always for her.  

We would do well to remember the same is true for each of us.  We are in His loving care.  We are on His mind constantly.  He is the master craftsman at work in us, around us, through us and for us.  
Let’s pray…

Celebrating LIFE

A few weeks back our small group leader approached me to discuss the fact that some ladies in our church were wanting to put together a baby shower to honor Verity's life and to be a blessing to our family. I was so incredibly touched, especially when she asked for my input and acknowledged that no one was quite sure how to go about doing this given our situation.

Mamas in my FB Trisomy community gave some valuable input, which I passed on to Connie, and the ladies did an amazing job of putting together what truly was a celebration full of joy and meaning. Our church family showered us with love and blessings last night, and we are humbled, encouraged, and thankful.

The event was open to husbands as well as wives...I believe this was our first couple's shower, now that I think about it! It was so nice that Ted's mom is also here with us and was able to be a part of the evening. We left our kids at home in the capable care of their teen siblings along with another larger family who joined forces with them for what was, I'm sure, a rowdy and delightful evening for the kids as well, lol.

The potluck dinner was wonderful with plenty of good fellowship and fun shower games to keep us engaged. As I looked around the room at the nearly 3 dozen people who had gathered with us in person, I was overwhelmed not only at who was there attending our celebration in person, but also at the many who have expressed their love and support and were not able to be physically present, whether from our own small church community or from vast distances.

Our pastor shared some thoughts from Psalm 139, a beautiful and profound message. He has given me permission to share publicly, which I will do in a separate post at another time. Then we closed the evening singing "10,000 Reasons," "Blessed Be the Name," and "Great Is Thy Faithfulness." It was a beautiful and precious time with our brothers and sisters in Christ.

At home, Ted and I had some quiet moments reading the beautiful messages folks had written for us. The gift card and money tree is a blessing that will keep on giving as we reserve the resources and wait to see what Verity will need. And our freezer already has a stash of meals that will be easy to prepare when things start happening and Mom isn't home to oversee the menu plan.

I confess I was uncertain going into the event whether I would end up being emotional, but honestly, it was truly such a celebration with so many dear friends that there was no sadness at all, only joy and thankfulness in shared acknowledgement of precious truths...

"Whatever may pass and whatever lies before me...let me be singing when the evening comes...
Bless the Lord, oh my soul, oh my soul,
Worship His holy name;
Sing like never before, oh my soul, worship His holy name."

"Blessed be your name when the sun's shining down on me, when the world's all as it should be,
Blessed be your name.
Blessed be your name on the road marked with suffering, though there's pain in the offering,
Blessed be your name.
Every blessing you pour out I'll turn back to praise;
When the darkness closes in, Lord, still I will say: 'Blessed be the name of the Lord...'"

"Pardon for sin and a peace that endureth; Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow...blessings all mine, with ten thousand beside.
Great is Thy faithfulness, great is Thy faithfulness, morning by morning new mercies I see.
All I have needed Thy hand hath provided; great is Thy faithfulness, Lord, unto me."

Oh, yes! One other thing I think is worthy of reporting...Ted, his mom, and I were all approached at various times and told in no uncertain terms that I was NOT to write thank-you notes, that we had enough going on in our lives and no one wanted me to have additional stress! So sweet! But my mama raised me right, so I WILL write a note for Connie to put in the church bulletin...that was deemed acceptable, lol. I love the hearts of these men and women who didn't even want their names on the money tree envelopes.

I Demand Joy: 36 Weeks and Counting

Yesterday I had another OB check-up, the first of what will now be weekly visits through Verity's arrival. Our next ultrasound is on Valentine's Day; I wasn't sure whether I should ask for one sooner or not, but I feel pretty comfortable that things are going well so far and don't want to be overly concerned about anything else at this point.

Anyway, I saw Dr. T, the same gentleman who met us for our January 17 appointment after the last ultrasound. I am so pleased to report that the brief time I spent with him yesterday blessed and encouraged me in a huge way! Especially after writing my last post, it was extremely refreshing to hear how pro-active Dr. T has been on our behalf.

For starters, after our last visit he made copies of our birth plan and circulated it amongst the doctors and nurses and NICU staff. He passed along copies of the research articles I had left with him. He spoke specifically to two of the NICU doctors (neither of whom was the doctor with whom I had a horrific consultation last November) to apprise them of our situation and spoke very highly of both of them as well as all the NICU nurses. He asked the nurse who gave us the L&D tour and her supervisor to come up with a plan of communication for when we come in for delivery. And the cherry on top, he described Ted and me as "level-headed" folks who have a "realistic understanding of this situation" and are completely capable of learning what needs to be done to support our daughter after she is born. WOW! Dr. T himself delivered a T18 baby a few years ago; though the baby only lived a week (had a congenital heart condition), the family remains in touch and in fact delivered another baby with Dr. T recently.

Can I confess something? It dawned on me as I was sharing with my family after dinner how the appointment went that yesterday was the FIRST TIME I have actually felt eagerness, joy, and anticipation regarding Verity's birth. I can't say with all honesty that the clouds of uncertainty and even fear have totally dissipated, but for the first time I am excited to see our baby girl in person, to hold her and learn more about who she is and how she will fare in this crazy, chaotic group of precious people who are my family.

It was a bit startling to realize just what a weight has been on me--that probably sounds absurd, given all the emotional news we've waded through over the last few months. But while I've desired to cherish each day with Verity; while I've smiled and laughed at her gymnastics and wiggles; while I've sighed in relief at each ultrasound appointment--the best emotions I've been able to muster have been more along the lines of "Somehow we'll get through all of this." I've feared and dreaded the day of her arrival even as part of me just wants to "get it over with." ("Tell me the bad news first, please.") I hate changing the status quo, particularly when it seems the impending change will be worse than current circumstances.

NO MORE!! Yesterday morning during my prayer time, I actually told God, "I demand joy!! You've promised me life abundantly, and I am TIRED of not having the full measure of what you desire for us!" (Or something to that effect, lol. I do remember demanding joy though. :-) )

I KNOW people have been praying for us--yesterday I felt carried along on eagles' wings, and the words from our doctor gave even more height to my soaring. For those who have been praying us through this journey, please pray that God continues to pour out His joy on us all...I'm sure He has been trying, but my/our capacity to receive it has not been all that it could be!