What to say to someone whose child is ill {and a Ryan update}

July 3, 2015/Living with Special Needs


It’s past 4 am and I’m waiting a few more minutes before trying to go to bed. Ryan’s had one heck of an evening, waking up through heavy sedation to flail about and yell. He’s one unhappy camper. Around 11 pm I went to get the nurse because Ryan was not only working hard to breathe, but he was cold and clammy. Definitely not the picture of stellar recovery from a few hours prior. Whenever I see him gasping for breath the fear of going back on the vent creeps into the corners of my heart.

The nurse came in and we chatted a brief minute before she decided the attending should be called. Ryan’s heart rate was elevated, but all his other numbers were the same. After a blood gas they determined his CO2 levels were elevated. Cue an hour of pushing a few meds and waiting for things to calm down.

Ryan’s numbers are much better now and he’s not working hard to breathe. However, he’s still waking up every few minutes to let me know he’s unhappy. We are watching Finding Nemo on loop.

Over the past 6 years we’ve been through the wringer with this kid. I’m always learning things about what to say and what not to say to someone with a child who’s severely ill. My favorites:

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If you’ve said these things in the past, don’t worry. We all have. The most important thing is your friend knows someone is there for her. Everyone handles crises differently.

I’ll try to update later today if there’s any change. If you don’t hear from us, it means one of us and sleeping and one of us is still watching Nemo. I’ll give you one guess as to which one of us wants to be sleeping.


Comments (6)

  • Denise Schlimgen / July 3, 2015 / Reply

    Praying for Ryan & all of you! I’m sharing your updates with friends who are also praying & sharing with more friends who are praying. Hope you get some sleep & wake up feeling God’s strength for the days ahead.

  • Lisa / July 3, 2015 / Reply

    Keeping your names on my lips and heart in constant prayer. Thinking about your words this morning and the book of Isiah came to mind. Isiah 49:16 flashed thru…See I have engraved your name on the palms of my hands….It gives me a huge measure of comfort HE KNOWS OUR NAMES! Not like a school teacher on the first day of school, trying for figure us out. He has always known us even before the breath of time He has known you and this journey.

    Isiah 43:1-3 tells us to fear not for He has already redeemed us, He has called us by name. When you pass thru the waters I will be with you; and when you pass thru the rivers they will not sweep over you. When you walk thru the fire you will not be burned; the flames will not set you ablaze. For I am the Lord, your God the Holy one of Israel, your Savior.

    Its good to know that He has our front, back and our sides at all times, even when we are “feeling” otherwise. But its so easy for me to tell you God’s got it when I am not the one walking in your shoes and its not my child hurting, but just be sure you’s guys are in my constant prayers, and thoughts.

    • Linda Hogeland / July 3, 2015 / Reply

      Lisa, your comment contains so many of my same thoughts for Leighann and Henry this morning. You said it well…and I love the verses.
      Linda H.

  • Carrie / July 3, 2015 / Reply

    We love you Leighann and your angel son. Thinking of you and your whole family. “Let our prayers be accepted as sweet-smelling incense in Your presence. Let the lifting up of our hands in prayer be accepted as an evening sacrifice.”Ps 141

  • Linda Hogeland / July 3, 2015 / Reply

    Leighann…Each time we pray together, either I myself, or my husband John lift up Ryan before the Lord. Lisa’s comment was so good…and echoed many of my thoughts.
    It must be so hard to see Ryan so frustrated. I know he is old enough now to fight things and to show his frustrations…so it is different than when he was a baby. Hang in there sweetie.
    Loving thoughts and prayers,
    Linda H.

  • Tracey / July 3, 2015 / Reply

    You are the bomb.com, Leighann.

    I am forever grateful for these pointers. We want to show love and not burden others.

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