This week has been so much harder than I thought it would be. My pain has improved significantly since fetal surgery and I have only needed pain meds minimally. I’m so thankful to be physically greatly improved. No contractions or issues this week which is also a blessing.
Emotionally, I am a mess. Chale came back on Tuesday. It is so special to see his smile, hear his laugh, and to be together as a family. I am having an extremely hard time being on bed rest. It feels like torture to not be able to do anything. I hate watching everyone else carry, play, feed, and comfort my son. I feel so helpless as a mom. He is too young to understand, which I know is a good thing, but it doesn’t make it any easier. I have many irrational fears. I fear that after months of not being able to take care of him that Chale isn’t going to want me anymore. He already doesn’t really want to be with me because he doesn’t understand why I’m just in bed all the time and won’t play with him. He is very emotional and not sleeping well because our life is constant chaos. I hate seeing him like that and know there is little I can do.
We had been on the wait list to get into the Ronald McDonald house in Philadelphia and finally got in. This is a huge blessing and we are so incredibly humbled and thankful to be able to stay here until the baby comes. The staff here is wonderful. The facility is great with play places for Chale. They provide meals every night and we can use the kitchen to cook our own food too. There is a community of families here all experiencing their own trials with children in the hospital. Many in far more difficult situations than ours with children fighting for their lives against cancer etc. There are a few other families here who also had fetal surgery which is such a blessing. I’m looking forward to spending time with them hopefully.
I have to stay in bed and eat meals in the room because my bed rest is so strict right now. I feel like I am in prison. I know that this is best for our baby but it is so difficult to be isolated much of the time. Being alone makes it much easier to let my mind spiral in dark, discouraging places. I know Bobby is having a hard time too but on the other end of the spectrum. He has to do everything. He had to move all of our belongings over here thankfully with help from his family. He has to try to get us settled and organized here so we can create some sense of normal for the time being. He has to entertain and care for Chale and get food for both of us. He hasn’t touched his school work which has to be finished by January 24th. I know he is exhausted and doesn’t have time to process anything right now.
Our life has been such that Bobby and I have always been great teammates in caring for Chale. From day one we got up in the middle of the night together, we tag team meals, baths, bad diaper changes, etc. I love that we work together and are able to both be so involved. Being on bed rest just feels so wrong. I feel like I am just sitting on the sidelines while Bobby is having to face the battle by himself. I desperately want to fight by his side and I can’t right now, at least not in the way I want to and am used to. This feeling of being stuck and unable to act is something that I know others face. Many feel these emotions and struggles in their own trials.
Bobby reminds me often that I am fighting alongside him the most important battle, the fight for our daughter’s life. Being on bed rest is allowing her to grow, heal, and have the best chance at being born as close to 37 weeks as possible. I do believe that, it’s just more difficult to fight for someone I’ve never seen or met. That’s where the doubts come in.
I confess I am really struggling with bitterness and despair. I don’t feel like fighting the negative thoughts and complaining anymore. I feel a deep sense of despair and I hate it. I don’t know how to fight it and I am not trying very hard to. I have a constant stream of fears and questions running through my head.
How are we supposed to prepare our family and home for a new baby with special needs when we aren’t home and our family is living in chaos?
How do I believe that I am being heroic for my daughter when I feel like I’m neglecting my son and husband?
How am I supposed to come away from this stronger and not weaker?
As I feel hopeless and weak, how do I learn how to eventually teach our daughter to be strong when she will be physically weak?
How do I not worry about Chale when his life is being turned upside down?
How do I not feel isolated from my community when we are so far away from everyone we know and I can’t go to church or leave the room?
How do I count my blessing when our trials seem to be all consuming?
How do I let the Lord carry us through when I have no idea where we are going or how I am going to cope with what we are facing?
How do I not doubt when our life looks so different than we ever imagined?
How do we prepare for a journey of unknown obstacles?
How do I rest when my mind is constantly trying to figure out the next step?
How do I try to model peace for Chale in the midst of chaos when I am not at peace?
How do I not get bitter when we are facing more than I can bear?
How do I cling to truth when I feel too weak to fight my emotions of despair?
How do I be still in a more real way than ever before?
I cry all the time because I feel so frustrated and overwhelmed. I know so many truths and promises from God in my head but my heart aches with this struggle that I can’t grasp or seem to fight.
I have no answers but in the midst of my dark pit other more powerful questions come to my mind…
Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? (Matthew 6:26, 27 ESV)
Yet these are but [a small part of His (God's) doings] the outskirts of His ways or the mere fringes of His force, the faintest whisper of His voice! Who dares contemplate or who can understand the thunders of His full, magnificent power? (Job 26:14 AMP)
“Hear this, O Job; stop and consider the wondrous works of God. Do you know how God lays his command upon them and causes the lightning of his cloud to shine? Do you know the balancings of the clouds, the wondrous works of him who is perfect in knowledge? (Job 37:14-16 ESV)
Where shall I go from your Spirit? Or where shall I flee from your presence? (Psalm 139:7 ESV)
Then the Lord answered Job out of the whirlwind and said: “Who is this that darkens counsel by words without knowledge? “Where were you when I laid the foundation of the earth? Tell me, if you have understanding. “Have you commanded the morning since your days began, and caused the dawn to know its place, “Have you entered the storehouses of the snow, or have you seen the storehouses of the hail, Who has put wisdom in the inward parts or given understanding to the mind? (Job 38:1, 2, 4, 12, 22, 36 ESV)
“Do you give the horse his might? Do you clothe his neck with a mane? Is it at your command that the eagle mounts up and makes his nest on high? (Job 39:19, 27 ESV)
Are you so foolish? Having begun by the Spirit, are you now being perfected by the flesh? Does he who supplies the Spirit to you and works miracles among you do so by works of the law, or by hearing with faith…? (Galatians 3:3, 5 ESV)
Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? (Romans 8:35 ESV)
I’m not there yet, but I pray that eventually I am able to respond from the depths of my soul with such humility and awe as Job:
“I know that you (God) can do all things, and that no purpose of yours can be thwarted. ‘Who is this that hides counsel without knowledge?’ Therefore I have uttered what I did not understand, things too wonderful for me, which I did not know. ‘Hear, and I will speak; I will question you, and you make it known to me.’ I had heard of you by the hearing of the ear, but now my eye sees you; therefore I despise myself, and repent in dust and ashes.” (Job 42:2-6 ESV)