Friday, February 16, 2018

Preparing for Stafford: The Hard Stuff

Preparing for Stafford: The Hard Stuff

Preparing for Stafford has been a joy and a challenge. It has been filled with laughter and tears and prayers. We don’t know what lies ahead, but based on what we know of my health from the past 19 years, the months ahead will be exceptionally hard. Over the past eight months we haven’t just been preparing for a baby; we have been preparing for a health crash.

If you have been reading here for many years, you may remember that I crashed badly after Adelaide was born. My health slowly deteriorated until I was bedridden for 20-23 hours a day for a few months. Recovery from that crash took three years, and despite all of my efforts to exercise and rebuild strength, I have never been able to recover to the level of health I had before Adelaide was born. And anytime I push myself too hard, my energy levels plummet again.

Currently I can be out of bed for 5 hours on a good day. After that, I have to borrow spoons from the next day to stay up longer. If I borrow spoons too many days in a row, then I crash, and it can take months, or even a year, to recover. Because I am starting off with less physical strength and endurance than I had when I was pregnant with Adelaide, it is likely that recovery from delivery will be harder this time around, and it is likely that a crash will come sooner than it did before.

Preparing for Stafford: The Hard Stuff
Stafford at his 19 week ultrasound

One of my most debilitating symptoms is post-exertional malaise. This means that it takes my body much longer to recover from exertion than it should. If I go to church on a Sunday morning, it can take a week for me to recover from the noise and physical exertion. If I do a lot of walking around the house one day, I will have to spend the next day in bed. Pushing myself too hard with exercise doesn’t increase my strength, it only takes away my energy in the long run. Something is wrong at the cellular level, and my body doesn’t recover as it should when I rest and sleep, but, of course, not resting and sleeping only makes things worse!

On Monday I shared about some of the things I would be stepping away from after Stafford is born. And yet, even with all I am cutting out in order to have more energy to give to Stafford, I am well aware that apart from a miracle, I will not be able to take care of Stafford on my own. This has been my biggest grief during pregnancy. 

Preparing for Stafford: The Hard Stuff
A glimpse of Stafford's face at his 33 week ultrasound.

For right now I am able to take care of Stafford. When I eat, he receives nourishment too. Simply by being pregnant I can keep Stafford warm and safe and protected. For 9 months I get to have him with me all the time, and I love that. Pregnancy is very easy for me compared to taking care of a newborn or a toddler. I do look forward to meeting Stafford, but I wish pregnancy could last longer because I am not ready to let my baby go. It is hard to hand a newborn over to someone else to take care of. 

Even with all that is hard, there is so much gratitude as well. I have lost babies through miscarriage, and I am thankful that Stafford is still with us. My heart aches for my friends who have had to say goodbye to their children too soon. My heart hurts for those who want a child, but have not been able to have one. I know that I am very blessed to have a baby on the way. Stafford is a wonderful gift from God. I am grateful for this precious child, and I definitely want him to be part of our family! There is grief, but I am trying to keep it all in perspective. I know there will be joy and happy days in the midst of the challenges.

Preparing for Stafford: The Hard Stuff
Little Feet

Some days I am sad about the struggles and losses that are likely soon to come. Some days I don’t think about it at all, and I just enjoy being pregnant. I pray often for help and peace and strength. I pray for the ability to take care of Stafford, and I pray for humility and contentment if that is not to be.

I am trying not to worry. Most days I succeed; some days I don’t. I am trusting that tomorrow there will be grace. I’m not scared of the future. I’m just not looking forward to the physical deterioration. The increase in muscle weakness and brain fog and frailty will be unpleasant. But mostly I’m just sad about not being able to take care of my baby and my family in the ways I wish I could. 

Preparing for Stafford: The Hard Stuff

Will you please pray for my family and for me? Please pray that:
  • We all stay healthy and do not catch the flu or some other virus.
  • Stafford’s birth would go smoothly and safely.
  • My recovery from delivery would go well.
  • The Lord would strengthen Will for all He has called him to as a husband, father, paralegal, and law student.
  • William and Adelaide would be at peace no matter what happens with my health.
  • The Lord would give me strength to take care of my newborn son.
  • I would be humble and content if He chooses not to increase my strength.
  • The Lord would provide the practical in-home help we will need.
  • The Lord would give strength and endurance to those who choose to walk through the coming months and years with us.
  • I would keep my heart and mind focused on Christ.
  • I would trust God no matter what comes.
  • The joy of the Lord would be my strength.
  • I would rest in today's grace and mercy with no fear of the future.
  • I would glorify the Lord in this life to which He has called me.

I know that the Lord is good and that His plans for me are for my ultimate good, even when life seems overwhelmingly hard. And I know that I can trust Him with all of this, but it is still hard. Thank you for your prayers.

"Jesus willingly entered into this world of suffering and took on the worst for our sake. He's earned my trust even for what I can't understand." - Randy Alcorn

Wednesday, February 14, 2018

Preparing for Stafford: The Fun Stuff

Preparing for Stafford: The Fun Stuff

A small glimpse of Stafford's face at his 33 week ultrasound.

It is incredibly hard to take care of a baby when you suffer from low energy levels and post exertional malaise. Over the past nearly eight months I have been doing what I can to prepare and make life as easy as possible after Stafford arrives. Today I’m sharing about some of the fun and practical baby preparations. I hope this will be helpful for some of you who have a chronic illness and a baby on the way. And if you don’t, maybe it will be interesting to see what we’re doing.

In addition to all of the fun baby preparations, I have also been working on things that aren’t your typical baby preparations. Life will be much more tiring for me with a baby, and I know that I won’t be able to do most of my normal tasks after Stafford comes, so I have been working ahead of time on what I can.

Here are some of the things we have done, or will do, to make life as easy as possible with a new baby.

Preparing for Stafford: The Fun Stuff

We put a co-sleeper in our bedroom. This is something new we are trying with Stafford. When William and Adelaide were babies we used a cradle in the bedroom, but I am no longer healthy enough to sit up, or stand up, and pick a baby up out of a cradle on a regular basis. I am hoping that with the co-sleeper I will be able to reach over and bring Stafford close to me while I am still lying down. I hope that this will make it possible for me to do some of the night time feedings and take care of Stafford in the mornings. It may not help enough, and it may only extend my night and morning time with Stafford by a few days or a few weeks. But it is important enough to me that it was worth the money to buy a co-sleeper and give it a try.

We have set up diaper changing areas on the floor in the living room and in our bedroom. I am not able to stand up long enough (or safely enough) to change a baby’s diaper at a changing table, so we have always done this on the floor. My only concern right now is that I am struggling to stand back up after getting down on the floor. So I’m sure there will be many times that I do diaper changes next to me on the bed or recliner.

We will keep bottle feedings at night as simple as possible. In the past it has worked well for us to have a full water bottle and several baby bottles with pre-measured powdered formula in them. Then when Stafford is hungry, we pour in the right amount of water, give a gentle shake, and begin to feed. We don't use a bottle warmer or go to the kitchen to warm up a bottle. We will just use room temperature water.

I have clothes washed and sorted for Stafford for the first year. Babies grow quickly, and I know that I won’t have much energy for buying clothes after Stafford is born. In the fall I went to a couple of rummage sales and bought a lot of baby clothes. We have also been blessed with hand-me-downs and some clothing gifts. I will probably find that there are a few clothing items I am missing as the year goes on, but for the most part I have enough clothes for Stafford for the first year (and even quite a few clothes for the next couple of years!). I have sorted all of the clothes, and they are in labeled bags and plastic tubs in the basement. When I need a new size of clothes, all I have to do is ask Will to go downstairs and grab the next size up!

Preparing for Stafford: The Fun Stuff

We put a cradle in the living room. When I feel well enough in the afternoons, I want to be out in the living room. Walking back and forth to put Stafford down for naps in a bedroom won’t be possible, so he will sleep in the cradle next to my chair.

I have a baby wrap carrier to use at home. I have never tried one of these before, so I am not sure if it will be helpful or not. I am hoping that it will make it easier for me to hold Stafford when my arms are tired.

I will use a Boppy often. My mom bought one of these for me, and it will come in very handy whenever I am sitting to hold Stafford or feed him. I plan to bring the Boppy to the hospital too.

My wheelchair is being kept next to the kitchen so that I can use it every day. It is hard for me to walk around the kitchen and prepare a snack or a baby bottle, even when I am using Cordell (my walker). It is much easier to wheel around in my wheelchair. It saves energy, and it helps to prevent my blood from pooling as badly. I don’t like having one more piece of durable medical equipment to take up space in our home, but it is a necessity. I wish we had wood or laminate flooring throughout the house so that I could use my wheelchair everywhere. That would make getting around so much easier! It is too hard on most days for me to wheel myself on the carpet. But if needed, I can have a friend or family member push me in my wheelchair to get me where I need to go in the house.

Crocheting has been one of the most fun things to do in preparation for Stafford’s arrival. It isn’t absolutely necessary, but it brings joy to my heart. I crocheted a blanket for Stafford this fall. I have also crocheted several hats and shoes. I hope to crochet a few more hats and shoes in the next few weeks. Yesterday I finished a second baby blanket for Stafford. I can’t wait to show you this one! I’ll share about it in a Busy Hands post next week.

I have written and addressed birthday cards for our nieces and nephews for their birthdays this year. The envelopes have sticky notes on them with the date they need to be mailed. If I feel well enough throughout the year, I will also send birthday cards to our brothers and sisters, their spouses, and our parents. But if I can’t, at least the kids will still receive their cards.

I am hoping to have Easter baskets for William and Adelaide and Stafford filled and ready to go by the end of the month. I will hide the baskets in the closet until Easter. I always enjoy putting a few small gifts and some Easter candy in my children’s Easter baskets each year, and I don’t want to skip that tradition this year if I don’t have to. As soon as the stores start selling Easter candy, I hope to be able to get some, fill three Easter baskets, and put them in the closet to pull out on Easter Sunday. But Stafford doesn’t get candy; he gets a onesie and a board book!

I have clothing sorted into labeled boxes for Adelaide for the next two years. Between rummage sale shopping I did this fall, and some wonderful hand-me-downs from a cousin, Adelaide has many of the clothes she will need in the next couple of years. This will be helpful because it will save me a lot of time and energy that I would otherwise have to spend shopping or sorting through hand-me-down sizes later on. This winter I sorted the clothes into boxes that are each labeled with her name and the size. When Adelaide grows, I can let Will know what size she needs, and he can get the labeled box from the basement for me.

I have prepared to pass on the bill paying responsibilities to Will if need be. I am usually the one to keep track of finances and pay bills because it is a task I can do while lying down in bed. But if I become too physically exhausted or brain fogged, then I need to be able to easily hand this stuff over to Will. I have typed up a list of which bills are due when, how they are paid, etc. I hope that I will be able to continue to help Will by taking care of the bill paying, but if I cannot, at least everything is organized and ready to pass over to him.

I have talked with my local friends about what is likely to happen with my health after Stafford is born, and I have shared about the kind of help I will need in the months to come. I have had a few health crashes since moving to Minnesota six years ago, but none of them have been as severe as the crash I had when Adelaide was a baby. No one here has seen me that sick, so it was important to let my friends know what could happen again. Two of my friends have overwhelmed me with their love and support and offers of significant, practical help. I have also let our church know what my specific needs are right now, and what my needs will likely be in the coming months and years. Our church is currently helping us with meals, and they are talking about other ways they can help us after Stafford is born.

Do you have any other ideas to make life as easy as possible with a newborn? I would love to hear! I want to be as prepared as I can be for the challenges ahead!

Monday, February 12, 2018

Preparing for Stafford and Stepping Back from Blogging

Cranberry Tea Time: Preparing for Stafford and Stepping Back from Blogging
Stafford, 12 week ultrasound

For the past seven and a half months we have been preparing for Stafford’s arrival. I move pretty slowly, so we need the full nine months to prepare for a new baby in the house. It has been hard for me to keep up with blogging in the midst of all the baby preparations, which is why I have been quieter here lately. Much of my energy has been put toward shopping for baby clothes and other needed baby items, going to doctor’s appointments, rearranging bedrooms to make room for a baby, crocheting for Stafford, and trying to get everything on my to-do list finished before March.

I plan to publish a few more blog posts here at Cranberry Tea Time in the coming weeks. However, once Stafford arrives I will need to step back from blogging for a long time. I will try to write one more time after Stafford is born with a quick update and a few pictures, but otherwise things will be very quiet here on the blog. I will miss all of you, and I thank you in advance for understanding my need to step back from blogging for a while.

After Stafford is born I will be mostly stepping away other activities too, like email, crocheting, and scrapbooking. I won’t do much reading other than my daily Bible reading. I’ve told my friends that I won’t be able to have visitors, but that friends to come over to clean and take care of Stafford and me will be welcomed and needed! I won’t be leaving the house unless it is for a necessary medical appointment. As much of my energy as possible will need to go toward taking care of Stafford.

I haven’t said much here about baby preparations, what that looks like for us, or what lies ahead for us as a family of five. It is all so happy and scary and overwhelming that I haven’t known what to say, so I have been quiet. But in the coming days I hope to write two more blog posts about preparing for Stafford’s arrival – one that shares the fun side of things and one that shares the hard side of things. So check back in soon to find out how I’m doing and how I have been preparing for Stafford’s arrival.

Friday, February 9, 2018

Teatime Conversations: Coping as a Less-than-Energetic Mom

Teatime Conversations: Coping as a Less-than-Energetic Mom

Reader Question: What sorts of things help you to cope with your identity as a less-than-energetic mum?

It helps me to remember that this is the life God has called me to. He has made me a mother. He has chosen William, Adelaide, and Stafford to be my children. And He has chosen for me to live with dysautonomia. God is in control, and He is sovereign over all things, even illnesses and disabilities. I fully believe that God could heal me if He chose to do so, but He has chosen not to bring healing to my body. Instead He has called me to glorify Him as a disabled wife and mother. I trust that He has a plan and a purpose in this, even though it doesn’t seem best to me. It brings me comfort to know that God is using this for my good and for the good of my family (Romans 8:28).

I am certainly a less-than-energetic mom, but I am not only that. I am a less-than-energetic mom who is in Christ. I am a child of God (John 1:12), and I have an inheritance with Christ (Romans 8:16-18). There is reward coming! My faithfulness today as a less-than-energetic mom will be rewarded in Heaven in the future. Knowing this helps me to persevere.

Ultimately my life as a disabled mom is to be lived for the Lord. As I set my mind on things above, I remember that my “life is hidden with Christ in God” (Colossians 3:1-3). My life is secure in Him, and my life has purpose and meaning no matter how sick I become.

I don’t do these things well every day. I don’t always live like my life is hidden with Christ. I don’t always seek the things that are above. I’m not always faithful to glorify God as a less-than-energetic mom. Sometimes I become overwhelmed by the difficulties in life, and I need to be reminded of the hope I have in Christ and the ultimate purpose of my life. I need to be reminded to embrace the life God has called me to live.

These are some verses that have helped me to persevere as a chronically ill mom. I hope they encourage you too.

In addition to keeping in mind the “big picture” purpose of my life, there are a few practical things I am intentional in doing as a mom in order to maximize my interaction with my children. These are some practical ways that I embrace my role as a disabled mother.
  • Leave little notes for my children on special days or just because. Occasionally before I go to sleep at night I put notes on the floor outside of my children's bedroom doors so that they will see them when they get up in the morning. Sometimes it is “just because” and contains only a silly joke. Other times it might be a note wishing them a good day on a field trip.
  • Decorate my children’s doors the night before their birthdays. I sleep in until about 10:00 or 11:00 in the morning on most days, which means that I don’t always get to see my kids on the morning of their birthdays. They are usually at school before I wake up, so on the night before their birthday, I decorate their bedroom doors with something fun like streamers or balloons. One year I forgot to buy anything fun, so William woke up to a doorway covered in toilet paper!
  • Whenever possible I allow my children to come in to talk to me when I am resting in bed. I can only be out of bed for about 4 or 5 hours on an average day. Much of my awake time has to be spent resting in a quiet bedroom. But even when I am resting, if I am awake, I like to be as available as possible for my children. They know that they can come in and see me anytime I am not sleeping. They might come in to tell me a funny story, ask me a question, show me a Lego project they are building, or just talk. Sometimes we talk for 15 minutes or more; sometimes I can only talk for 30 seconds. But by being willing to talk as long as possible, William and Adelaide have learned to trust that I like being with them and talking with them, and that makes it easier on them when I have to say that I need to be alone and rest.
  • Have my children come tell me good night. I usually have to go to bed by 6:00, so my kids stay up later than I do. Will does the night time routine and puts the kids to bed, but before they go to bed, they come in to see me and give me good night hugs and kisses. This gives me one more chance to see my children during the day and tell them that I love them.
  • Do chores with my kids. I like to work alongside my children when I am able. Instead of assigning them chores to go off and do alone, we work together. Now that William and Adelaide are 12 and 8, I am able to do some chores at home that I could not do previously, simply because now I have their help! They can do my “walking around stuff” as I call it, and they can move boxes or bring things to me as I give directions. Their effort enables me to get more things done, and we have fun working together.
  • Watch movies together on the “bad days.” When I don’t have energy for anything more than watching a movie, but I need to spend time with my kids, then we have a movie day. We might make some popcorn or grab some fun snacks too. But mostly we hang out on the sofa and just watch movies. 
  • Find creative ways to do tasks. This means that I do a lot of things while sitting or lying down. We play board games while I lie down on the floor. Sometimes I brush Adelaide’s hair while I am lying in bed. I often help with homework while lying down on the sofa. One time my children and I made Christmas treats while sitting on the floor.
  • Let my children help me. This takes humility. It’s not always easy to ask our children for help, but most of the time I find that William and Adelaide are glad to help me. They especially like it when I need help taking my compression socks off. It gives them quite a workout to tug those tight socks off when they are young, and they like the challenge!

One final thing I will mention that helps me is grieving occasionally. If you are a chronically ill mom, there are real losses you have faced, and it is good and appropriate to grieve them. Being sad at times about all that you cannot do as a mom is completely understandable. I like what John Piper says: “Occasionally, weep deeply over the life that you hoped would be. Grieve the losses. Feel the pain. Then wash your face, trust God, and embrace the life that he’s given you.”

Teatime Conversations: Coping as a Less-than-Energetic Mom

If you are a chronically ill mom, my encouragement to you today is to love your children well in the ways in which you are able. Focus on doing what you can. Be creative in finding ways to be with your children, or to communicate with your children, when illness limits your energy. Grieve the losses, but do not despair. Embrace the life God has given you and the motherhood He has called you to.

The God who sent His Son to suffer and die on the cross for you can be trusted with what you are going through. When He takes away your energy, you can be certain that He will bring good from it. God has a plan and a purpose in your illness, and if you know Him, then He can, and will, use it for your ultimate good. If your children know Jesus, then He will use it for their ultimate good too. You are an heir with Christ, and you will be rewarded in Heaven for your faithfulness as a less-than-energetic mom.

We would love to hear from you! If you have a chronic illness, what has helped you to cope with your identity as a less-than-energetic mother? How would you encourage a chronically ill mom?

Thursday, February 1, 2018

Favorite Books of 2017

I enjoyed reading plenty of books in 2017. I finished 43 books in the year, and I started a few more. My reading goals are not as ambitious for 2018. My goal this year is to read 15 books, and I hope to finish most of them before Stafford is born.

Here are my favorite books from 2017:

Gracelaced by Ruth Chou Simons

Gracelaced is one of the most beautiful and encouraging devotion books I have ever read! Each page is illustrated by Ruth, who is both an author and an artist. Her devotions are rich and encouraging for whatever season of life you find yourself in.

The Wonder Within You by Carey Wickersham

This is a pregnancy book that is written from a Christian perspective. It is filled with helpful information, stories from other moms, and journaling prompts. There is also a pregnancy calendar with stickers to keep a record of milestones in pregnancy. I am enjoying reading and journaling through this book during my pregnancy with Stafford.

Twelve Years a Slave by Solomon Northup

This was a sad book to read, but I am so glad I read it. Twelve Years a Slave was written by a black man who was free for the first 30 years of his life, but then he was kidnapped and sold into slavery. After being freed from slavery, he wrote a book about his twelve years in slavery. This book provides a glimpse into the horrors of slavery in America.

United by Trillia Newbell

This is a great book about pursuing diversity in our friendships and in our churches. Trillia Newbell writes with grace and wisdom. I appreciated reading stories of her experiences growing up as an African American and her experiences in the church. This is a good book for all believers to read and be challenged by.

Happiness by Randy Alcorn

Happiness is a book that I will keep on my shelf as a reference for years to come. I highly recommend it. This is a message that is needed by Christians today, and it is a message that is needed by the world. There is true and lasting happiness to be found, and that happiness is found in knowing Jesus Christ as your Savior and living for Him alone. You can read my full review here.

A Lifetime of Wisdom by Joni Eareckson Tada

Joni is my favorite author, so it is no surprise that one of her books would again find its way onto my list of favorite books from my year of reading. A Lifetime of Wisdom was written after Joni had been a quadriplegic for 40 years (she has now lived with quadriplegia for over 50 years). In each chapter Joni briefly shares her thoughts and experiences from the early weeks and years after her diving accident, and then in the rest of the chapter she shares with the wisdom and the perspective of a woman who has walked with the Lord through 40 years of quadriplegia. It was encouraging to see how the Lord has worked in her life over the years, using suffering to make her more like Jesus.

What were your favorite books from last year? What are you reading currently?
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