It Sucks More Than Anything and It’s Amazing

So we’ve been in the hospital for a week with our newborn son. (Here’s an update on what’s going on with our family.)

This last week has been, for obvious reasons, the worst of my life. And it sounds as though even worse days are likely in store for us. But at the same time, these tragic days have also revealed to me the stunning beauty of community and the breathtaking goodness of the human soul.

In no particular order, here are the things that are making my life right now an absolute nightmare, and the things that are bringing me to my knees in gratitude.

 What sucks so badly that I can’t even think about or else I just sob uncontrollably:

  •  Not being able to see or care for Lydia. I miss her charming, goofy personality and I hate the fact that I can’t be her mom right now. I went from spending every moment of every day with her for the last 3 years to only getting visits on the weekend. I ache to be with her.
  • Felix can’t see our faces. For the next several months, he will only know his mama as the woman behind the mask.

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  • I can’t breastfeed. That was one of the first and worst things they told me upon admittance to the hospital: no more breast milk. I could pass along a pathogen. We have to feed him formula. I almost fainted when they told me. Breastfeeding is SO IMPORTANT to me. It kills me that I can’t share that intimacy with him, or all the health benefits of breast milk. (For now I am still pumping, with the hopes that maybe we can resume some day.)
  •  Lydia can’t even see her brother. She is forbidden from entering his room when she visits. She will not know him at all by the time he is discharged. By the time she can see him again he will be a whole different baby. And she looooooved being able to snuggle him.
  • This is not at all the infancy we had in mind for him. Obviously, no one plans for an infancy in the hospital; but we’re about the crunchiest, hippyest parents you can imagine, and this life is as far from that as possible. We started out breastfeeding on demand, bed-sharing, cloth-diapering/Ec-ing, babywearing, and doing lots of skin-to-skin. Now we’re formula-feeding and counting every ounce; he sleeps in a little steel white cage across the room; we’re using disposable diapers and weighing every ounce of poop/pee; and I can’t even go near him without putting on a gown, mask, and gloves. I won’t be able to touch his skin for months. We’re covering him in creams and oils with ingredients I wouldn’t dream of bringing home, squeezing sweetened/flavoured/dyed medicines in his mouth, and pumping his body with antibiotics. I worry that we’re destroying him as we try to save him.

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  • Having to hear him scream through all the awful tests. He’s constantly being poked and prodded – in one week he’s had a spinal tap, innumerable blood tests, several catheters, IV’s, two X-rays, ultrasounds, lung swabs . . . he can never catch a break. And I can’t do anything to help him. It’s agony.
  • We’re amongst so many suffering families. I can’t even bring myself to look into the other parents’ eyes or gaze too long at the tiny cancer patients in the halls. The baby next to us screams all day and all night. Just so much pain.
  • The fact that we won’t be home for Christmas. I won’t be baking Christmas cookies with Lydia or lighting the Advent candles every evening. We never even put up our tree. It kills me.
  • All my eco-consciousness has to be thrown out the window. We make more trash in half a day than we made in a week back home. Everything is disposable. I toss out 20 pairs of gloves and 20 masks a day, and send out 10 gowns to be washed every day. We’re using disposable diapers and wipes and chucking a dozen half-full bottles of formula with disposable nipples every day. Then there’s the disposable medicine tubes, breast pump sterilization packets, etc. I feel awful.

 

What’s so amazing I can’t help but sob with gratitude and awe:

  •  All of you people. Honestly, it’s breathtaking. The love and support that has been pouring in has me stupefied. From the monetary donations flooding in from friends, family, and complete strangers; to the prayers people are saying on our behalf; to the encouraging notes and emails I receive on a constant basis. It’s just too much. I know that my friends are organizing a big fundraiser to help us out financially and they’re pouring their precious time and energy into it. Then there are the volunteers at the Ronald McDonald House, preparing our meals and maintaining the beautiful house; and the wonderful nurses who go out of their way to make us comfortable. We are being so well taken care of. I am dumbfounded by the generosity and kindness. I cannot believe you would all go to such lengths to help us when we’ve never done anything for anybody.
  • That we caught the disease so early. One of the doctors here has been working in the field for 16 years and has overseen 11 SCID patients. In every other case, the disease was caught because the child was already sick (which typically happens at three or four months of age.) Felix was the first one caught via newborn screening, at two weeks, before he showed signs of being seriously sick. (Screening for this disease is very new, and only practiced in some states and provinces.) Hopefully catching it early will mean an earlier and easier recovery. I guess that’s sort of a miracle.
  •  That Lydia has two sets of wonderful grandparents, as well as aunts and uncles, to care for her while we’re dealing with this. I know that she is being well taken care of. I don’t have to worry at all. I just miss her.
  • The Ronald McDonald House across the street. For only $10 a day, we get comfortable lodgings and delicious home-cooked dinners every night. They’ve got play areas and TV’s and sitting rooms. It’s a lovely place full of lovely people. Such a blessing.
  • That we live in Canada, and all of Felix’s care and treatment (so far) comes at no cost to us. Unbelievable. The only real financial difficulty comes from our complete lack of income during this time, but our amazing community is helping take care of that through fundraising. Incredible.
  • So far, Felix isn’t really suffering. Like I said, the disease was caught before he showed any symptoms. As of now, he has a mild cough and bladder infection which are being closely monitored and treated, to keep them from escalating into something life-threatening. Otherwise, he’s a generally content baby, sleeping lots, showing little sign of discomfort aside from all the testing and probing.

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  • We can be with him. Sure, we have to be covered from head to toe to see him. But we can spend as much time in his room as we want, talk to him, and hold him. A lot of parents with critically ill children can’t do that.
  • His condition is treatable, possibly curable. If he has a successful bone marrow transplant, he will be cured and should be able to live a mostly normal life. If that doesn’t work there are other treatments available to keep him healthy, hopefully for a long and happy life.
  • I have an amazing partner to go through this with. He stays hopeful when I lose faith. He takes care of me when I lose my mind. He’s a loving father to this tiny, fragile baby. I couldn’t ask for better.
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Comments

  1. Oh goodness this is beautiful. I’m so thankful on your behalf that you’re able to be thankful. I’ve definitely witnessed this alone lighten the load sometimes. It is absolutely my prayer that you’ll just continue to have more and more to be thankful for in the coming weeks/months/years. (And that the first list will get shorter and shorter).
    You’re an incredibly strong woman who has actually done SO MUCH for your community. How else would we all have been exposed to the level of crunchy you’ve shown us? Because of you, I know my life and that of my daughter is very different than it could of been and I’m very thankful for you for that!
    Anyway, I just meant to say hello and let you know we’re still thinking and praying for you big time!

  2. I’ve been reading your blog for 4 or 5 years, since back when it was Project M! My heart is breaking for your family, and my prayers are with all of you. May you find peace and strength during this challenging time! I pray that Felix’s life and story will be a ministry to others.

  3. My heart is both breaking and singing at the same time, from reading that. I’m so touched by the way you can organise your thoughts in what must be a confusing and chaotic time for you. You and your family and that beautiful brave and strong little boy are in my thoughts all the way from Ireland. xxx

  4. I pray that the blessings keep flowing into your sweet family and for complete and miraculous healing for your precious little Felix. Our family will be praying for your family until you are all home together. May God bring you comfort and peace. May he hold Felix in the palm of his hand and breath protection over him. You are loved.

  5. I’m just streaming tears here grieving your losses and admiring your strength. From one crunchy attachment parenting mama to another, I just want to validate those seemingly little losses…they would feel huge to me too. I’m praying for your little guy, for full healing and for your peace as you learn to live in this new normal for the next several months. -Rachel

  6. Always praying for you and your precious family.
    Marissa@BecomingKindred recently posted..Maud Lewis; Capturing JoyMy Profile

  7. Don’t worry, your baby knows who you are from the inside out. The hospital mask cannot change that. He has heard your voice for months now without ever being able to see your face. He knows it is you. I am sorry that you are going through this but, glad that you have the support that you need.
    ~sheila
    Sheila Kalkbrenenr recently posted..Easy Art Therapy Activities #9 & #10My Profile

  8. Melissa Fulmer says:

    I went into the hospital last year right after Christmas, and I spend every waking moment with my kids too, I remember those feelings. I remember crying so much, it was so weird not to have them or later when I was released to have to leave baby at the hospital. It went by so fast, it is like it never happened, and my baby is just fine even after the billions of tests and medicines. We trust in a God who is bigger than everything and anything. I am so glad you all are being taken care of during this time. Will continue praying for all of you!

  9. My heart has been aching for you and yours in these past few days, since you first told us about the possibility of Felix’s health being compromised. I cannot imagine what you’re going through, and I keep praying for the little one that I’m still growing. Please know that we’re sending lots of happy thoughts and desperate prayers from down here in Southeastern Ohio. This whole situation sucks so badly, but I trust that God is working in and through it to bring about as much good as possible.

  10. I found your site from another blogger who posted on it. So many prayers for you all. My heart broke while reading the hard parts. They really are so tough. I, honestly, can’t fathom what you all are experiencing. But, I’m thankful that you are sharing. There’s so much grace, and it’s just a reminder that everything is grace! Your love for your family is beautiful. What you all are doing for your son is a beautiful testimant to love and goodness and just thank you for sharing. You have my prayers during this time, but the amazing you shared truly is so very amazing and good. God bless! My Christ continue to hold your sweet family during this time of suffering, love, and healing!
    Amanda recently posted..Kid-Made Gift Series: Toddler Scribble Art BookMy Profile

  11. We are grateful for the update, grateful for the things that are good, and hopeful for you all as we light our candles tonight. Peace be with you guys. We are holding you in the Light.

  12. I’m not nearly as good a writer as you but reading this makes my heart break for you every time I read any of your updates. Your story is a ministry to me already! To be thankful and content with what I do have ! We’ve been blessed with 3 boys and have gone through our share of health issues and yet can’t compare a fraction as to what u are enduring! We are praying so hard for your whole family! I’m so glad that you can be thankful and still see positives in a bad situation ! It’s so very important to stay positive and focused on God getting you through this!
    You are all in my thoughts and prayers !!!

  13. You are in my thoughts and prayers!
    Mindy recently posted..Our Quinn has arrived! (…er…two months ago…)My Profile

  14. Anneke Jochem says:

    Sending love and light from New Zealand. . My little 2 yr old was insistent that she kissed your little boy better xx

  15. Ben & Liz Friesen says:

    May Jesus hold your tiny preches baby and your family in his healing hands, God bless

  16. So glad you were able to post an update. And so glad to hear people are helping!! I will have to donate to our local Ronald McDonald house. They do amazing work. Keeping fingers crossed and prayers going that you find a bone marrow match for Felix.

  17. Oh my goodness, came over here from Haley Stewart’s blog and I am just amazed by what you are facing, and nearly weeping with gratitude at how God is providing for you during such a dark time. He’s a beautiful little boy. You’ll be in our prayers.
    Jenny recently posted..We give what we getMy Profile

  18. I am praying for all of you, for a peace that passes our understanding, and that this crisis will glorify God. We just can’t see it at the time, but we will in hindsight. God made Felix’s life and He doesn’t make mistakes. x

  19. Kathleen, I’ve read your blog for a while, but not commented and I just wanted you to know that I’m praying for you and your family. May God be with you in this unbelievably difficult situation, and may God bless your Felix. Your mother’s love for your child is so evident and inspiring, and I know your voice and presence is a gift and comfort to your sweet baby.
    Christy recently posted..New Advent and Christmas Picture Books in Our HouseMy Profile

  20. Hi Kathleen, I’ve been reading your blog(s) for a couple of years now and I just wanted to pop up and say you and little Felix are in my thoughts often! I really admire your ability to give thanks ( and also find the strength and focus to educate and inform us!) through such a horrible time for all of you. Sending much love and good wishes from the UK :)

  21. Mumma.

    Sucks. I can’t imagine your sorrow and fear. I know your tears are plentiful and your pain is constant. I’m so sorry.

    Continuing to pray for you and your family, strength and hope for you and Ben, healing for Felix (who is such a doll, by the way), peace for Lydia.

    You’re the cutest thing I’ve ever seen in a scrub mask. Just sayin’.

  22. Jesus, I trust in You! God pulled the rug out from under you and your husband, why? to open your hearts and your minds. Hang in there!!! He did it to me (I had a better idea!), he does it all the time. God is all-good!!! Let go & let God, it’s not the path you want to take, but the one God wants to lead you into. May God continue to bless you & your family! I thank God for Ronald McDonald House! What a gift! I pray for strength and peace to carry you through.

  23. My dear internet friend,

    I am so sorry to hear of these struggles–what an introduction your son is having to our broken world. We will be praying for you and your family every day. May God give you strength and peace in this season of joy.

    Your sister in Christ,

    -Elyse

  24. Well heck if this didn’t make me tear up. I’m so sorry, Kathleen. Not much else to say, is there? I have been and will continue thinking about all of you and wishing you strength, patience, and whatever else you need. I think I will also go hug my own three year old. I can’t imagine being separated from her. Lots of love from Texas.

  25. I love this post. You are a strong woman! And Felix must have just been born extra brave. You’re both still in my prayers (from Washington, DC).

  26. Have you found out if any of you are matches?
    Brigi recently posted..Oh, this temporary life…My Profile

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