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.

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. 

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.

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. 

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.

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.

• John 1:12
• Galatians 2:20
• Colossians 3:1-4 
• 1 Peter 2:9-10
• Ephesians 1:1-2:22
• 2 Corinthians 4:16-18
• Romans 8:14-18
• Romans 8:35-39

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.”

Photo by Bruno Nascimento

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?

The Wonder of Christmas

“She will bear a son, and you shall call his name Jesus, for he will save his people from their sins.” Matthew 1:21 

Jesus “emptied himself, by taking the form of a servant, being born in the likeness of men. And being found in human form, he humbled himself by becoming obedient to the point of death, even death on a cross.” Philippians 2:7-8

Every year as Christmas draws near, I marvel again that God chose to come to earth as a baby. The Lord Jesus Christ willingly took on human flesh and entered our world of suffering.

We live in a world that aches under the effects of sin and the curse. We suffer from illnesses and disabilities and the process of aging. All around the earth there are natural disasters, poverty, crime, broken relationships, and hurting people. Our biggest problem is that we are born separated from God, and we need salvation.

God did not leave us to suffer without hope in this life or in the life to come. In His great love and mercy, He sent His Son to earth to save us from our sins. We have a Savior who willingly entered into suffering on our behalf!

Jesus chose to come into our world and embrace the limitations of the human body. He became tired, hungry, and cold. He faced temptation. He was well acquainted with sorrow. He was mocked and scorned. He suffered the wrath of God on the cross so that we might never have to. He came to save us from our sins and to redeem us as His own. What marvelous truths to ponder at Christmastime!

It is easy to look at our own difficulties, or see the suffering around us, and lose hope. Christmas reminds us that Jesus knows our pain and weakness. He came to us in our suffering; He suffered with us and for us. Jesus endured more suffering than you or I ever will. We don’t have a Savior who is far-removed from suffering. We have a Savior who understands what we are going through.

It brings comfort to know that Jesus lived in a human body and faced suffering on this earth. It gives us courage and helps us to persevere. Let us look “to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God. Consider him who endured from sinners such hostility against himself, so that you may not grow weary or fainthearted” (Hebrews 12:2-3).

In whatever suffering you face this Christmas season, remember that Jesus is acquainted with sorrows. You have a Savior who has willingly suffered for you. He understands what you are going through. This Christmas, look to your suffering Savior for courage and comfort. Rejoice and thank God for the good gift of His Son.

This article first appeared on The Irresistible Church.
Photo by Gareth Harper

Grieving Old Losses

Sometimes old grief can come back afresh at unexpected times. Earlier this year, I found myself grieving old losses. It surprised me to arrive at such a point of grief again – even after being disabled from a chronic illness for thirteen years.

For several weeks, I struggled with weariness in the long, chronic-illness battle, and I grieved the life that had been. I grieved the loss of my previous strength and energy, and I grieved the loss of the ability to serve my family physically in the ways I wished I could. Once again, I felt the raw pain of it all.

During those few weeks of pain and grief, one thing that encouraged me very much were these words from John Piper: “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” (Embrace the Life God Has Given You).

I felt less alone when I heard his words about past losses coming back again as fresh grief. My time of grief soon passed, and I went back to loving and embracing the life I have been given, limitations and all. But for a time, it was helpful for me to pause, recognize the losses, and take time to grieve.

I know that I am not alone in my grief regarding disability. My friend, Sarah, has a daughter with severe, nonverbal autism, and she shared with me that “‘what we never had’ is often the kind of grief special needs parents feel about their kids.”Another part of her grief involves the future for her precious daughter. Who will love and take care of her vulnerable child after she is no longer here to care for her daughter?

Probably all of us who are affected by disability will feel grief at various points in our lives. If you have a disability, or a family member with a disability, this is likely something you have been through too.

When those times of sadness come, don’t be afraid to feel the pain. Grieve the losses and weep. Then, as John Piper says, “wash your face, trust God, and embrace the life that he’s given you.”

“Weeping may tarry for the night, but joy comes with the morning” (Psalm 30:5b, ESV).

What losses have you faced in life? Do you find that old grief comes back at times? How do you grieve and then move on to embrace the life you have?

This article was originally posted on The Irresistible Church.

Photo by Jeremy Bishop.