4.26.22

You have been so patient friends. Thank you for messaging me, sending me emails and texts and facebook messages. I hope to begin to respond directly to you soon. You are extremely patient and loving to ask for updates so gently. Without continuing to post to you every day, it is hard to know what to say. There are many worries and events. Lots of days that we are merely managing and coping. A few sweet moments sprinkled into the mix. 

Mostly I have some pictures of these little pockets of sweet time to share with you as I cannot share each little stress as it comes. I will say that Aimee is here and we have continued to work to keep her here. She is primarily comfortable, mostly sleeping, occasionally engaging. Her body has become increasingly variable, which seems to primarily be due to brain communication issues. Increasingly more of the same. It is unending and consuming and heavy. It is round the clock and technical. The amount of normal in our hospital home is very low. Yet care is becoming more rhythmic. The routine is also deeply filled with love and tenderness. We have never questioned that it is right for us to have her at home with family around her despite the difficult load. 

Anyways, about those sweet moments:

And for good measure, the other 4 amazing, growing way too fast, kids: 

3.26.22

Today we have been back home for 7 weeks and 3 days. Exactly the length of time we were home last Fall. This fact sent us into a bit of a panic this morning. Reminding us of the tenuousness, the razor edge of this journey. There is a lot of stress in being prepared, with bags constantly packed, for a hospital stay. As of tomorrow, it will be our longest stretch at home since May of last year. We have worked so hard to stay home during this stretch. We have specifically declined twice to bring her to the emergency department for admission, once with pulmonary and once GI. We are doing everything we possibly can, all of this for our family to be together. For Aimee to be in her best place, home with her siblings. 

This past week Aimee has been mostly stable and more alert. The hospice nurse told us that it is a very common pattern in children to repeatedly decline and then improve some, but not quite as well as before. When I see Aimee more alert and comfortable, as she has generally been this week, I feel that maybe it was all a bad dream, that really she is fine. If only I don’t look back at this long year behind us and see the slope. If only I ignore the great pain of seeing our daughter lose even more ability, have even more taken from her. How much I wish I could give her some of my own ability, carry some of her burden. How much she has endured. 

We don’t know about tomorrow, we never do really, but we will prepare for it to our best ability while also savoring today. We continue to step a detailed, intensively choreographed medical dance every single day. Life has always been fragile. For all of us. With this fact constantly in our face, there is pain, but also the great joy, the great thankfulness for today. May I remind you from this humble place that I currently view life, tomorrow is not promised. The comfort of daily routine and regular life is not a guarantee. Have your affairs in order, but most importantly turn your face to what is true, what is beautiful, what is noble, what is just and good. 

3.18.22 Update

Hello dear friends, 

It seems it is time for a small update. Even Ed mentioned today that he had checked to see if he had missed a post! It has been a busy week plus as we dealt with a skin reaction that turned into an infection around Aimee’s central line. We were told to bring Aimee to the ED for admission as they were worried it would become a blood infection. The doctor was making plans for her to come, but we were able to argue for taking the risk of staying home. We have carefully tended it and are finally seeing good improvement at that site. Then our other kids came down with a cold that they promptly shared with Aimee and then with me. Just this evening starting to feel better. Aimee is still on some extra support, but holding steady. 

Aside from adding these things on top when there just is not room on the plate for another pea-size addition, it is plain hard to update. Every single day is so different. Today Aimee had an INCREDIBLE day. She smiled and played all day long. Best day. Wednesday night, or was it last night… either way, Ed called me in because Aimee’s low heart rate alarm was going off and we immediately felt a strong grip squeeze our hearts. How can I write to you tonight with joy and then tomorrow with worry? Oh and earlier tonight with nausea realizing that saline flushes were not shipped and we will run out over the weekend. I’m not sure how to do any of this well at all. And sending out a post every few hours from a different view on the rollercoaster ride seems impractical. 

Aimee is fairly well tonight. It is the most hopeful of times; it is the most despairing of times. 

Thank you for so much grace. Your messages are balm to my heart, but it is really hard to communicate back to you. I hardly know what to say. Impossible to focus my gaze outside of this world here at home. Thank you for loving me anyway. 

3.9.22 Unknown

I type so many words, but none of them fit. There is a heavy weight inside my chest. Emotional exhaustion pulls me down. I can barely focus. 

Yet, there must be conversations. We must talk about supplies with homecare companies, about missing items and non-functioning equipment. There must be calls made to pharmacies, to doctors. Conversations about grief and end of life planning with the social worker. Discussions about possible infection symptoms with the hospice nurse. Evening open-heart confessions with a child. Early afternoon readings about other countries. Teaching of mathematics and spelling rules. Sunshine filled, late winter picnics and games of catch paired with monologues about mario games or lego creations. Moments of forgiveness and reconciliation after stress and grief have come out as anger. 

So much communication must happen. Such sweetness and bitterness. Such weight to hold and such freedom to only do what is most important. 

All I really wanted to communicate tonight out of all of this fog is that we are in an unknown. We are preparing our family and our affairs for the unbearable time when we have to say goodbye. We are also in hope that there will be another plateau of time where we can savor life together for longer. There is no timeline for this season. We do not know how long it will be. 

Aimee is changing up and down day by day. Since I last posted, she has had one wonderful day, a couple not great days, a couple okay, and two quite bad days. It is an up and a down. It is emotional. It is life. We are living it as best we can. 

3.2.22 Just Love

Today is one month since we were discharged.

I hesitate to share this post with you, but it seems unkind to hide our present concern. We are processing an event that happened this week and want to allow you who love Aimee to process it too.

Aimee gave us a big wake up call 2 nights ago and we are emotionally reeling. We were both concerned that Aimee was letting go. Her heart rate slowed way, way down and her skin, lips were completely white. She did stabilize after several sobering minutes. Her heart rate eventually doubled to a nice low sleeping rate. She started to respond and move. Her color returned. Since that night, she is doing well with no additional concerns. 

Aimee is on hospice and I was able to discuss the situation with her hospice nurse today during her weekly visit. We have discussed what would happen if Aimee’s heart stopped, but seeing a preview of that was a huge reality check. It wasn’t her time quite yet, but it was a signal that her system is tiring even more. It was a warning. We have given her all the support. From here, if she peacefully lets go and her heart stops, we will hold her hands, love on her, and let go too. 

That night was the first night I have tasted the bitter sorrow. Up until this point, it has all been fight and plans. That night, I felt the tremble of reality and imminent end. Ed and I both are holding on, riding a roller coaster of feelings, and continuing our gratitude for each day ahead. We hope that there are still many more. 

Yet, how can we be at peace, how can we savor, how can we have joy with our time together? I cannot explain it, but to say that we look to God for true peace. We cannot have joy in the midst of sorrow without Him. 

““I have loved you even as the Father has loved me. Remain in my love. When you obey my commandments, you remain in my love, just as I obey my Father’s commandments and remain in his love. I have told you these things so that you will be filled with my joy. Yes, your joy will overflow! This is my commandment: Love each other in the same way I have loved you. There is no greater love than to lay down one’s life for one’s friends.”

‭‭John‬ ‭15:9-13‬ 

We have given it all, poured out our deepest love for Aimee, except this final sacrifice of our very hearts. At some point, we will allow ourselves to break and experience this pain of loss for her peace, her restoration. 

“For our dying bodies must be transformed into bodies that will never die; our mortal bodies must be transformed into immortal bodies. Then, when our dying bodies have been transformed into bodies that will never die, this Scripture will be fulfilled: “Death is swallowed up in victory. O death, where is your victory? O death, where is your sting?””

‭‭1 Corinthians‬ ‭15:53-55‬ ‬

Having done all to love, we will continue to stand in love when Aimee moves from this imperfect world, from this imperfect body to her heavenly, immortal body. As she moves into the true promise land. Our hearts long to have her stay, but we also long for her to be restored in a way that only heaven can restore. We have hoped that the kingdom of heaven would be here. We have fought, we have prayed. Yet, here we are, standing at an interchange ahead sign, not knowing how many more months are ahead, but sensing that time draws near. 

It isn’t fair. It doesn’t seem just. I cannot understand why our girl was given this road for her lifetime on earth, but I can trust the one who loves her beyond earth. The one who created her body, her soul, her spirit with intention and purpose. 

Thank you Father for letting us walk with her. Thank you for the time we still have with her here. Thank you that even though my heart is afraid and my body weeps for the child it birthed into the world, my spirit knows a peace deeper than the depths, a peace greater than the unknown. 

2.27.22 Thirteen Years

Aimee turned 13 this weekend. We spent the time low key celebrating in an Aimee style. Movie night in Aimee’s bed. Dance party. Chocolate cake. Audiobooks. Decorating with homemade window clings. A nap with Dad and a nap with Mom. Painted  matching toenails for us 3 girls. Lots of music. We were exhausted honestly and just tried be present. 

Aimee is doing okay. Still on extra respiratory support. Feeling like we are heading in the right direction though. We are here doing our best. 

As I was laying in bed with Aimee yesterday, I was hearing the in and out of the ventilator, the rumble of the gastric suction. Wallie was bringing in lego sets that he created. Later Louisa helped us give Aimee a shower. I realized that we essentially have a hospital room in our home where Aimee is. We have the freedom to bring the kids in and around her continually, but really it is like she is in the hospital in a lot of ways. We spend hours around the clock with central line care, hanging TPN, airway clearance, trach care, ostomy care, urinary catheters, administering meds through a syringe pump, flushing the gastric suction, changing dressings, positioning, cleaning, suctioning. It is not at all like thriving at home as we have known it before, yet we are so grateful to be in a time where this is possible. 

On that note, thank you friends for being incredibly gracious and patient with my responses. My cup of social energy is quickly drained talking with specialists, nurses, homecare companies, pharmacists, ect. I wish to be able to be a friend and I am praying that you will still be there when I can be one. I miss being a friend. This daily load is as much as we can do and there just is barely enough energy to do it every single day. Every night I stay up until 1-2 in the morning to do Aimee’s care. Ed gets up through the night half of the week and his mom helps during the night the other half. He wakes up to do the early shift. He has cut back his hours at work so that he can manage with nights of low sleep. We are praying for a night nurse or two to help us, but there have been no additional nurses at all available. 

Really, truly I am thankful to be the one doing Aimee’s care most of the time. It does flow out of our love for her. In great gratitude I can say, there is no better hospital room. There is no where else we would rather be surviving. 

2.23.22 Improvement

Aside from the new inhaled antibiotic, we changed Aimee over to a higher pressure support on her vent. She has really perked up and we are starting to see improvement.