mama grief: when you miss mothering a medically fragile child

July 9, 2015, Michaela Evanow, 39 Comments

My magical, beautiful girl. We lost you to SMA two months ago today, on May 9th. You are written on my heart.

These days, my heart misses you fiercely. I miss everything about you. I miss the things that used to make me sad, like when you needed to be suctioned or were desperately trying to express something to me without using words. I even miss the Children’s Hospital. I miss your noises and warm, red cheeks and soft, gummy hands. I miss the old life we had with you. It was everything … it was my motherhood experience. And now it’s completely and utterly gone.

Theodore, your precious brother, keeps me busy in an entirely different way. I get to run after him and fish things out of his mouth. But, it’s not the same.

I can’t believe it’s possible to miss your medications and machines, but I do, because they led me to you.

I mothered you by suctioning the spit from your mouth and pushing 10 ml of water into your tiny belly. I poured formula and kept your room stocked with all that you needed. I talked to nurses and made up schedules and told everyone how you were, because they wanted to know. No one asks anymore. No more orders to place. Nothing to clean or put away or worry about, really. I don’t hover over you and protect myself and Teddy and daddy. I have let my mother wings down, unable to spread them as far as I used to. I think they are a little broken now.

I stay up late and run myself into the ground, because I can get a cold, and it won’t cost you your life. I have become rather careless. Perhaps that is grief, too. Grief makes me tired in a whole new way.

I’m becoming old friends with Grief. I know when he might pop by and say hello, but sometimes he comes over unannounced. It’s a little mean and inconsiderate of him, but he doesn’t follow the rules. And then, sometimes, he makes me smile/cry and fall to my knees in the kitchen (this is not new) and laugh and weep because you made me so happy and my memories are so sweet, but I miss you. He likes these bittersweet cocktails. I’m finding I like them a bit, too.
I realize now, that in the last few years, I ran at half capacity. I think that’s because I wanted to pour all my love into you, and savour every moment. At the end of the day, I didn’t have time or energy to think about things like dinner. I just wanted to think about you.

Now, when I miss you fiercely, the kind of missing that makes my stomach roll—I think of all the other mamas that are still mothering their medically fragile children. My heart beats for them.

I imagine sitting in their living rooms and feeling the love they have for their kids. I see them mother in their particular way. It brings me joy and comfort.

That was my heart, too. That was what I knew best.

I miss so many things, but mostly, I miss you.

39 Comments

  • Reply Shang Thomas December 13, 2016 at 7:10 AM

    Mat God bless your soul and heal your heart. I had to read this three times just to makE sure that I didn’t post this. This will be my third holiday season without my angel Tamara. God gently clipped her wilted wings here on earth in September of 2014. Even though she’d been so I’ll since birth I had no idea in my mind that she was ill, even with the 24 hour nursing in my home, the weekly doctors visits, and the constand suctioning just to keep her alive. Its also great to know that im not the only lady who breaks into tears at Walmart for no reason at all. When no one else knows that Ive just passed an employee with a name basge with TAMARA on it. Im still racing to wheelchair accessible parking and then I realize I dont need it anymore so im in my car crying. Or if I just think of something that made her smile or laugh and tears began to roll down my face. Im praying for God to mend my heart now that Tamara is free from her pain. When people would ask me how do you all do it. I would always ask,”Do what?” I never saw it as a problem. Just love. Its also My lil angel isn’t suffering anymore, she has strong wings with God. She doesn’t have to wait on us to be fed, bathed, turned, changed or pushed around in her wheelchair. Her wilted wings are gone she has new strong wings now and so does your sweet angel fly high in heaven Tamara with all of your new friends.

    • Reply Michaela Evanow December 16, 2016 at 1:47 PM

      Shang, I appreciate you sharing your story with me! Thank you. xo

  • Reply Jill Brandon December 12, 2016 at 1:29 AM

    This is beautiful…I can relate completly to it all…. I can feel so lost without my girl, Bianca too…❤️…sending you love and comfort, from one grieving Mother to another

    • Reply Michaela Evanow December 16, 2016 at 1:46 PM

      Much love to you, Jill. xo

  • Reply Nancy Neiditz December 11, 2016 at 5:37 PM

    I am so very very sorry for your loss! I have treated many children with this terrible illness and have loved everyone of them.

    • Reply Michaela Evanow December 16, 2016 at 1:46 PM

      Thank you for that love! It’s needed. xo

  • Reply Jade from Henibean December 11, 2016 at 12:56 AM

    I can relate to every word. I miss my dear sweet Heni who passed away 8 weeks and 5 days ago ( yes… still counting) my wings feel broken too and I’m hoping the chrysalis of grief will unfurl them a new and the struggle out of it will make them strong and glorious. Thinking of you today and in you struggle still left ahead. Sending you so much love and heartfelt hugs from another empty armed mother xxxx

    • Reply Michaela Evanow December 16, 2016 at 1:46 PM

      Breathtaking words, Jade. Thank you for sending them along. xoxo

  • Reply letty December 11, 2016 at 12:04 AM

    I literally only read 5 sentances and couldn’t go on. My heart is breaking for you’ll… I don’t know what I would do or how I’d function, but I’m sure I would. Good luck to you and your family.

  • Reply Sarah Turnbull December 10, 2016 at 10:04 PM

    Wow, so beautifully raw and just makes me want to wrap my arms around you. Thinking of you and praying for you this holiday season. After almost saying goodbye to Stella on Sept 21, I am thankful though have yet another taste of the reality that you have. Love, hugs and prayers dear SMA mama friend

    • Reply Michaela Evanow December 16, 2016 at 1:45 PM

      Thank you, Sarah. Love to you. xoxox

  • Reply Pat Cummings December 10, 2016 at 4:28 PM

    I know how you feel… my daughter passed in August. She was 26 years old and functioned at 3 months. My life had been all about Ashley. She was the center of my universe. Now she is gone. It hurts so bad. I miss my baby and all the things I did with her and for her. I’ve passed her equipment on to others who can use it along with supplies. Now her bed sits alone in her room. A new rotating mattress she never got to use , we got it for her during her last hospitalization, it was waiting for her to come home but she never did. Her lovely lavender walls with the quote ” you are fearfully and wonderfully made”. I slept in there for the first weeks after she died. Now I can’t go in there. I know that time will build up the callouses and I will be able to function better with that time. The intense pain is not a constant now. It just springs on me unannounced leaving me wracked and weak. So I wish you love and peace and joy. I know life goes on and I will go with it. Take care.. pat

    • Reply Michaela Evanow December 16, 2016 at 1:45 PM

      This is beautiful and heartbreaking, Pat. Thank you so very much for sharing the details about your lovely girl. xo

  • Reply Victoria Dean December 10, 2016 at 2:42 PM

    October 5, 2014, after 21 years of care taking, I lost my medically fragile daughter, trach, g-tube etc. I have experienced all you have written. Thank you for jotting my thoughts down. All of a sudden, no nurses, medical supply companies, pediatric sub-specialist appointments, hospitalizations, ambulances, ……How did we do it?. That powerful love God gave us for these children! Never experienced love like that nor will I ever again

    • Reply Michaela Evanow December 16, 2016 at 1:44 PM

      Yes, by grace indeed. Thank you, Victoria.

  • Reply suzie advie December 10, 2016 at 2:23 PM

    Our son was born 5-6-2006 at just 23 weeks gestation. (I wasn’t even 6 months pregnant yet) A micro preemie he only weighed 1 pound. Due to his profound prematurity he suffered a grade iv intraventricular hemorrhage which caused damage to the white matter of his brain. He had cerebral palsy. He was in the NICU for a full 8 months! Every day we went to the children’s hospital for the entire 8 months. Finally we got to bring him home. He had a g-tube. Partial paralysis in his throat, and of course the CP. He was total care. But he grew, and he was a wonderful little boy! So joyous all the time. Just as happy as he could be. If ever a child had a reason to be unhappy, he did. But he never was! He was our little joy-boy! Sadly he passed away in October of 2014. He had a massive seizure and it went into cardiac arrest and they couldn’t save him. It’s been 2 years now. I still wake up in the night thinking I need to go adjust his night feed. And I miss him so much it’s indescribable. I don’t think people can understand the extreme hyper-vigilance required unless they’ve taken care of a medically fragile child themselves. And I don’t think we ever ‘get over’ it. I consider the time I spent taking care of our boy a blessing. I was loaned an angel for a little while. <3

    • Reply Michaela Evanow December 16, 2016 at 1:44 PM

      Thank you so much for sharing with me, Suzie. xo

  • Reply carol floyd September 3, 2015 at 9:14 PM

    I am so sorry for what you have gone through. I understand. Your posts are exactly what I have thought and felt over the past year. I lost my daughter, Felicia, on July 19, 2014. She also had SMA and was on a ventilator since she was 15 months old. As much as all the responsibility was so overwhelming and tiring I so mis it now. I have a different kind of stress now. It’s called grief. I pray that you will continue to run toward God because HE is there to comfort you. If you ever want to talk, or if your husband needs to talk to a guy, we are hear for you.
    In Him,
    Carol

  • Reply Tara Montague September 3, 2015 at 2:06 PM

    Michaela, I just stumbled onto your blog. I’m so sorry for your loss but Thank you for your honesty in sharing. My daughter also has sma type I and at 18 years old she’s starting to get even weaker. I’m so scared for the day we lose her. i don’t know how I’ll survive but I know I will somehow.

  • Reply Wendy July 29, 2015 at 4:56 PM

    My heart hurts for you and your family. I am watching my beautiful wee foster son slowly get weaker and weaker to the point he is now in respiratory failure . He is on oxygen at home, I am steeling myself for the time he needs to let go. Your words are everything I think of at some point through my day, you are brave beyond measure and the fact you found the strength to share your sorrow with us what an amazing mummy you are and will continue to be. Our unique children make us much better people and we are all able to see that they are a gift from God for however long their time on earth is. Bless you for sharing and remembering that no mater what I will carry on and keep his strength strong in my heart. I will keep you in my prayers, and know your little angel is watching over you all always.

    • Reply Michaela Evanow August 9, 2015 at 2:58 PM

      Wendy, thank you so much for sharing. xo

  • Reply Jen Baker July 27, 2015 at 5:28 AM

    First, I am so sorry for the loss of you daughter… I am getting ready to experience this now as my daughter, who is 21, is on hospice at home. I have four grown children. Jessi is one of my twins and they are my youngest. I am terrified. Not for Jessi, I truly believe she is going to Heaven. I am terrified for me. 21 years, endless hospital stays, living at the RMD house, Meds 3 times a day. Cancer, CHD, OHS ×3. Finally Gillian Barre Syndrome which caused her to be trached and vented. Every day for 21 years I have been by her side..through the worst and best. What am I supposed to do when she’s gone. Thank you for sharing your feelings on the loss. I’m afraid I’m going to be too lost. Hugs to you…

    • Reply Michaela Evanow August 9, 2015 at 3:00 PM

      hi Jen. Thank you so much for sharing with me. I am so sorry to hear about your daughter. Oh mama, what heartbreak. But you will survive it. At first, it might not feel like it, but you will. So much love to you. xo

  • Reply Rachel Brittin July 27, 2015 at 12:59 AM

    Thanks for writing this…. My child has been gone now longer than he was alive, and I find myself pondering these things. The things that mattered, but there was so much to life while he was here and when he left so did the noise of his oxygen machine, my daily routine, our wake times for feedings and Meds, and lets not forget all of the special people that we would see on a regular basis. I miss them too. Once in a while I will run into our PT, OT, or a Nurse at the grocery store and it is all I can do to hold myself back from wanting to just squeeze them and ask them to come over, or even just to whisper his name.
    Thanks for writing this. It cause unwanted tears to stream and although it has been such a long time, my heart still longs to hold that little boy again, to kiss his cheeks and to feel the warmth of his body against mine. I know you must long for this too.

  • Reply Heather Quinn July 26, 2015 at 4:51 PM

    I can only relate to the fact that I have a handicapped child as well. Her life expectancy was 8-10 years but she is 12 now. My daughter has Lennox-Gastaut Syndrom. She can’t walk, talk, sit up alone or feed herself. She is totally dependent on me. She has a feeding tube as well. I know how it feels to watch your child want to talk and can’t and I know the look on her face when she sees other kids running and playing and wondering why she can’t. Some days I feel like I missed out on all the things that parents with “normal” children get to experience. When I look at my daughter she reminds me how happy she is with that smile of her’s. I don’t know what I would do without her, without listening for monitors in the middle of the night to go off saying she quit breathing, feeding machines yelling that they are out of formula, or not going to the many doctors that she has. I can’t say anything that would make you feel better. I can only say that there are people out there who care and who don’t mind listening if you need an ear.

  • Reply Tracy July 26, 2015 at 3:14 PM

    I feel like I could have written this post because it to was my life. I lost my angel a year ago August 5 and everyday I miss her more and more!

    • Reply Michaela Evanow August 9, 2015 at 3:02 PM

      mama bear, I am so sorry. I know it’s past August 5th, but I’m sure it was an emotional day for you…xo

  • Reply Pamela July 20, 2015 at 7:44 PM

    you have no idea how this touched me. I cared for my daughter for 24 years I have just been lost since she died September 2014 you put my feelings into words. So sorry for your loss.

  • Reply Diana Trautwein July 18, 2015 at 12:52 AM

    Beautiful. Heartbreaking, almost unbearable. But true. Oh, so, so true. Love to you as you walk this road.

  • Reply Connie Miller July 10, 2015 at 12:33 PM

    I am very sorry for your loss of Florence, my heart aches for you. She was a beautiful and sweet girl. I know every minute caring for her was a loving thing. My granddaughter, Eliza, has type 1 sma too so I know . She has had a trach and vent since eight months old and is five yrs. old now. It is all hard to deal with but so worth it, they are such sweet children! I will continue to pray for you all.

  • Reply Bev. Nash (Grandma) July 10, 2015 at 8:54 AM

    I don’t think we will ever get over it! I don’t want to either! The thing that keeps me going is that one day soon I will get to see her, embrace, hug and kiss her, fully alive, vibrant and free. She is more alive than we are being in God’s Presence 24/7 , with our loved ones. So we’ll put though Michaela, all the senses you miss, the smells, touch, sight, hearing, and taste, all the ways you served her, loved her, met her every need! You ran the race so well, you and Jason. Such a Grace on you both! Thanks for making me cry over and over! It’s good to feel the feelings, let them wash over us, and then be replaced with peace and joy in the Hope we have as Believers.

  • Reply Helen Burns July 9, 2015 at 10:47 PM

    Oh my heart…. thank you again Michaela for sharing your journey with us and making us all heart-richer. Florence’s life continues to teach us all. xo

  • Reply Daniela July 9, 2015 at 9:21 PM

    Love, praying for you all. I love seeing Flo pop up on my feed. For a moment I forget she’s gone. Then I remember, but so glad I can’t forget. She will be a part of my heart forever. xoxo

  • Reply Sue July 9, 2015 at 5:00 PM

    Michaela, I know you absolutely poured all your love into Florence! So glad you’re writing as it must be hard to do these days but I’m willing to bet it’s one tool for healing.
    I planted marigolds for your precious girl here in Ohio and will send you pics. My family looked at me a bit curiously when I told them why I was planting them but they were touched.
    I think of you all the time and send you lots of love.
    You simply amaze me.
    xo
    Sue

    • Reply Michaela Evanow July 9, 2015 at 9:20 PM

      I love that you planted marigolds and did it anyway, even when your family was confused. That means so much!

  • Reply Jennifer July 9, 2015 at 3:28 PM

    Absolutely beautifully said. I never met your little girl, or yourself for that matter, but you have touched me in many ways. I think about her when I see a Marigold, when I even just see flowers. Those make me think of her. I wish you all the best and know that Florence watches down on you every single moment of every single day and minute smiling free as a butterfly have the best time of her life.

    • Reply Michaela Evanow July 9, 2015 at 9:20 PM

      Thank you.

  • Reply Tina July 9, 2015 at 3:27 PM

    im so sorry to hear and read about the loss of your precious daughter,we too lost our daughter to sma and can relate totally. It was such hard work but we missed it so much when we lost her,it’s so tragic,sad and life changing xx

    • Reply Michaela Evanow July 9, 2015 at 9:21 PM

      I’m sad you lost your baby to SMA too. Hard work. But life changing. So right.

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