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Balancing Family Life with a Chronically Sick Child

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Being a mom is the best thing I’ve ever done. I was one of those little girls who always wanted to be a mom. I went through plenty of other aspirations: actor, writer, missionary…but inherent in all those dreams was also motherhood. Being the mom of a large family is just the icing on the cake for me. I love having children of all ages (except now I suppose I don’t, since I don’t since my baby is 3!) There are times though when I feel a bit crazy, bouncing from driver’s ed to Dr. Seuss and from addition facts to algebra.

Worst of all is finding the balance between a chronically sick child and my healthy children. 061713_5802 blogI just found this photo from early this summer on my computer. I never edited it. Seeing it now amazes me…we haven’t seen this gleam in his eye and energy in months.

This last week was stressful. Judah has Driver’s Ed Monday, Tuesday, Wednesday from 6:45-8:45. Monday was a trip to Everett to see the sleep specialist. Tuesday night was Apollo’s vomiting and seizure (while Chuck was at Boy Scouts). Wednesday was  youth group, Thursday a scheduled drive for Judah and more vomiting….Friday a doctor’s visit, CT scan, more vomiting and set-up for the craft fair where Tilly was selling items for her trip to Malawi. All day Saturday was the craft fair and Saturday a House Party I had scheduled for over a month (long before I knew how hectic my day would be). And yesterday I woke up completely slammed by a head cold.

Sometimes I feel torn on this blog…it feels so strange and awkward (even to me) for my posts to jump from SEIZURE AND CT SCAN! to CRAFT FAIR! But that is my life. I have older kids and younger kids. I have healthy kids and one not-so-healthy. I have kids in school and kids who homeschool. It is all my life.

We make a real effort to not burden my other children with Apollo’s sickness. There are times when it is inevitable, though. Tilly was with me the day we were sent to the ER when Apollo had RSV and pneumonia. Enoch was on the one to call 911 when Apollo choked. All of my older children know how to tube-feed Apollo. I do try to include them in his trips to Seattle Children’s Hospital when we go. The younger kids love playing in the sibling playroom and I feel it is important for them to see where he spends so much of his time. To Apollo, the hospital is as familiar as grandma’s house or our local parks. It is just one more place in his life. He doesn’t know any different.

I forgot to mention that the sleep specialist said to me, “I know you may not want to add any more appointments and trips to Seattle, but I’d really like to refer Apollo to the Early Childhood Clinic”. After questioning her, the “Early Childhood Clinic” as it turns out, is a euphemism for the psychiatry clinic. She thinks he might benefit from a few visits to talk about his surgeries and sleep. I am all for this. He has been traumatized by everything that’s happened to him. The last time we were ever able to lay him down in bed awake was the night before his first double aortic arch division. After that he went from a poor sleeper to a terrified sleeper. I often read other people’s blogs and wonder how their kids are doing. Do their children take it all in stride? Or do they struggle, like Apollo? One of the worst parts about his hospitalization in Texas was hearing him say, “What’s she going to do to me?” every time someone walked into the room. It nearly ripped my heart out. And most of the time my answer was simply, “I don’t know”.

So there  you  have it. Forgive the craziness of me jumping from medical emergencies to the mundane. This is my life right now and I make every effort not to have my other children feel left out or less important than their sick brother.

{As always, thank you for your prayers, comments and support! It is very encouraging.}

10 Comments

  1. Michele P@Family, Faith and Fridays

    I think you do a great job of balancing and love reading about everything!! That’s what makes you real! Praising God for normal days and praying that the not so normal days are fewer and farther between!

  2. nicole

    I know you can only wear so many hats by the grace of God. Just remember, God not only gave Apollo (and all of his challenges) to you, but to your children as well. Don’t feel bad about having them go the extra mile with you in helping to care for Apollo (and or others while you care for Apollo). God will use it to help shape His character in them as well. God bless you dear friend as you joyfully run the race our Maker has set before you.

  3. Fatcat

    I know what you mean. Today, we are moving mom into an assisted living facility and I’m having a very hard time with it, but I also agreed to teach a 4H class this afternoon …

  4. Sari Grove

    re: the vomiting & seizure incident… I was reading Ray Sahelian about melatonin “The use of melatonin for a child appears to be safe as long as melatonin use is kept to no more than 2 times a week and a dose of 0.5 mg or less”…
    *But also, there is extensive mention online about vomiting being a side effect of melatonin…The seizure, as someone mentioned before might have been triggered by the vomiting…
    Though I love melatonin as a sleep aid, maybe the dose needs to be reduced?

  5. Melpub

    I think it is okay for your other children, especially the older ones, to help and to hear about how you feel about the stress and strain. They love Apollo and they love you and want for you both to be happy. The older ones can certainly understand and appreciate what you are going through–I bet the younger ones too. Speaking as one who grew up in a family where everyone denied and lied, on the theory they shouldn’t “burden” the children, I think the truth is always better–if they want the truth.

    • bakersdozenandapolloxiv

      We certainly don’t hide anything from them, but I also don’t want them constantly worrying about him. Nor do I want them constantly caring for him. Helping? Sure, they do plenty of that, but I don’t want them feeling responsible for him. Does that make sense?

  6. Angie

    I am both very sorry that Apollo and your family must endure so much pain and hardship and so very thankful that all of your kids have you and Chuck for parents. You are amazing. Your kids are amazing. You are in our thoughts and prayers always!

  7. Jess Guest

    Tonight I am struggling to vent an uncomfortable two year old who can’t burp but still refluxes and vomits so as I type I have a 60ml syringe in my teeth. Tomorrow I drill math facts and kiss boo boos and break up arguments while I tube feed, do physio,, feeding therapy, sign and communication. We have scouts and sport and homeschool afternoon teas, we have appointments, interstate hospital visits and still more appointments. I battle with how to deal with 9 year old drama queens pushing my buttons and how to deal with the occasional flash backs I have to our ICU days and my anxiety about the ICU days in our future. I have explained to my 9 year old that yes, her sister will need help all her life but that does not mean she has to stay home and take care of her little sister all her life. I have had to explain to her that she is allowed and encouraged to have adventures that her sister can’t have. I have had to explain over the phone to my three year old that Mummy and Kaylee can’t come.home yet, we don’t know when, but we love you very much and miss you like crazy. I have listened to beginning readers stumble through their readers in waiting rooms. This is our life. We can’t just stop until our kid gets better, but we never get used to them being sick or less frightened when they go downhill or add some new and exotic symptom to baffle their medical team. But there is only so long you can cry, throw things, rant or do any of those things that people think we should be doing non-stop in our positions. After a while, we pull on big girl panties and get on with the business of living and loving. Because that’s just what you do. Your blog makes perfect sense to me :).

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