Needing Refuge & Strength

Monday

It was a beautiful Memorial Day ~ perfect weather, happy baby. I don’t ask for much else!

Sweet morning sleepiness
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The big kids were still in Cleveland (or on their way home), and Nora was with her nurse. This afforded me a treasured afternoon with my husband. We ate lunch in Eden Park and watched birds frantically bathing on the rocks between two lakes. The still shots don’t accurately portray the frenzied activity that was taking place, but still cute.
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We came back to steal some kisses and loves while we waited for the big kids to get back with Nana & Papa.
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Then is was time for creeking! We were hunting for bird shaped rocks!
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Sweet sleeping beauty
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Unfortunately this came out blurry – but what a cute moment, Nora being carried up to the baff by her big sister!
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“I like da baffs!!!!”
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Tuesday

Just when we thought we were on a roll with Happy Baby, Crabby Gas Baby returned for much of the day.

An early morning walk at least put her back to sleep, but when she was awake she was unhappy. It may have been triggered by a bottle of prune juice that had accidentally exceeded its freshness. I only took the “Use By” date into consideration without noticing (until now) the tiny microprint which stated, “Discard 7-10 after opening.” Oops. Of course expired prune juice would be the likely culprit here, but my fears and worries start getting into a tangled knot in the back closets of my mind. I hate when she’s upset and hurting!!!
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A late morning bath was soothing?
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Trying to stay grounded, focused and optimistic, I glanced out the window. Of course. Of course. Of course.
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Later in the afternoon I got some comic relief with my buddy boy at his orthodontist appointment. He doesn’t need to be seen until next summer! Phwew!
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As the rest of the day unfolded Nora started feeling better. William and Gavin made it out to a Reds game with Nana & Papa!
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Meanwhile back at home, Nora and I went on a run and met up with Greta who was playing then spending the night at her friend’s house. Nora was so excited to see her big sister!
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Tired baby girl after a long, long day!
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Wednesday

Today isn’t starting out so great. The moment Nora woke up she was unhappy. After our morning run (that appeased her for a little bit) I noticed she felt a little warm. I took her temperature and lo and behold she has a temperature of 101. She was obviously uncomfortable so I gave her some Tylenol. At that point I may as well have spun her around the living room by her feet and covered every square inch with puke. I had to remove couch cushions during that clean up process.

I am incredibly frustrated. As if her trisomy 18 diagnosis isn’t enough in and of itself we are constantly being bombarded with one setback after another. It’s hard to sit here and “play hopscotch in the driveway” when there’s a big funnel cloud about to come tearing through. I’m so filled with anger and self-pity today. I just want things to be KIND OF “normal” with a happy, healthy baby. It’s so stupid for me to sit here and ask, “Why why why.” I KNOW why, and the reason is astonishingly beautiful. This is just REALLY hard on days like this.
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God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging. There is a river whose streams make glad the city of God, the holy place where the Most High dwells. God is within her, she will not fall; God will help her at break of day. Nations are in uproar, kingdoms fall; he lifts his voice, the earth melts. The Lord Almighty is with us; the God of Jacob is our fortress. Come and see what the Lord has done, the desolations he has brought on the earth. He makes wars cease to the ends of the earth. He breaks the bow and shatters the spear; he burns the shields with fire. He says, “Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.” The Lord Almighty is with us; the God of Jacob is our fortress.
(Psalm 46:1-11 NIV)

25 thoughts on “Needing Refuge & Strength

  1. That sounds so tough!! A mother’s heart is a fragile thing sometimes. I will continue to pray for you and your sweet baby and your family! I’m wondering if you have ever heard of something called ColicCalm. It’s generally for colicky babies but when my 1yo has gas pains I give him a good dose and he totally relaxes! It’s a nice natural remedy that doesn’t have any side effects besides being a little messy.

  2. I have been reading for some time now, and rarely leave comments, but I have to just say that when I am struck by simple set backs in life, they take over…Everything else comes to a halt and I am consumed by the small simple setback. It really consumes me. I admire that you and your kids and husband are still so involved in doing so much while you work through all of the set backs with Nora. She is so lucky to have such loving family members. I hold you in my prayers every night.

  3. Sorry to hear that little Nora is not feeling well again and has been having tummy troubles. Just though I’d share and maybe you have already tried this, but we used children’s probiotics for one of our tummy issue children and had good results. Keeping your family our my prayers and sending well wishes for Nora to feel better soon!

  4. Praying for peace and strength amidst the storm as you push on. Remember, to a God who is in the thick of it with you there are no setbacks. It is instead the slow, sometimes painful dance He is doing with us as we draw close to Him and become part of His work in our lives. May you feel His bold whisper of “Peace, be still” today, and may there be bold healing yet again in sweet Nora’s body!

  5. This was a great post of the wonderful things that were happening in the family but also let us know that some issues developed. You closed with positive scripture and I felt that this was acknowledging Christ’s love and His care for you. Thank you for our openness once again but the post was way up top with the beauty of God’s creation and your love for God and the closeness you and your husband had together. I loved the picture of little Nora laying on the blanket with her legs high into the air. She is growing so much and changing regularly. Bless you as you walk this journey and speak to all of us how Christ is showing Himself in your lives.

  6. Praying for you! Do you think that Nora was so isolated all winter and now is perhaps getting exposed to more things in the envionment which is leading to all of these bugs? Just a thought…

  7. I know how you feel exactly, I have a three year old who
    has RETT syndrome, she is imperfectly perfect. She has limited use
    of her hands cannot walk and very little verbalization. Her days
    are riddled with therapies, seizures, gastro issues and much more.
    But to me she is the best thing to ever happen to me. Your words
    have given me the strength so many times, my daughter was just
    diagnosed in January, with your extreme dedication positive out
    look and faith in God. So many times I find myself in a puddle of
    tears,I feel sorry for myself, I wish for normal, but to me this is
    the new definition of normal, much like your precious daughters
    situation the world of RETT syndrome is one rarely traveled.
    Parents of special needs children are allowed to cry, because the
    pain is constant the worry unending and love overflowing. An old
    pastor of mine out of California had a daughter that struggled with
    childhood cancer 3 or four times, he preached about the “why” and
    sarrow, in this beautiful testimony it shares pain parents faced
    with “similar” situations and the answer GOD gives, if you have
    time it’s worth the watch for sure http://vimeo.com/58318290 If the
    link doesn’t work it’s called when sparrows fall by Britt Merrick I
    pray for your sweetness every day and will continue, thank you for
    touching my life and allowing us to see your beautiful
    journey.

  8. I AM SO SORRY WE DID NOT GET TO DO OUR VISIT TODAY, SOUNDS
    LIKE A TALK COULD HAVE BEEN GOOD, BUT I THINK YOU TALKED TO SOMEONE
    THAT DID MUCH BETTER THAN I COULD HAVE EVER HELPED. MAY GOD PLACE
    HIS AWESOME ARMS AROUND YOUR HOME. I am still hoping it is teeth
    that are going to pop up!! Lot of hugs and prayers.

  9. I know exactly how you feel Aleisa! Kinsey has had one sickness after another for nearly a year. It’s so frustrating! It gets old and it compounds on you with each time she gets sick. And the setbacks are the worst part! The last time Kinsey was sick with just a minor cold, she had major setbacks with her walking and eating. So frustrating! And we try so hard to keep her healthy, but she catches everything anyway! Hang in there and know that you’re not alone. Sending hugs and prayers.
    Trista

  10. I am feeling discouraged and frustrated too. My son does not have nearly the health concerns that you are coping with, but we have had our share of complications lately. I also feel like I have been pouring so much of myself into him that I have very little left for my daughter or husband. I definitely have nothing left for myself. I don’t tell you this for for your pity. It just sometimes helps me to know that others are struggling too.

  11. Even in your moments of despair and sorrow, you are an
    encouragement to others by your feelings you have shared, by photos
    of your precious family, and especially by the choice Scriptures in
    which you remind those of us sharing your journey of God’s perfect
    presence and fine-tuning in our own lives. Thanks for sharing! As
    always, many prayers and hugs are being lifted up praising Him for
    His perfect care for you, precious Nora, and indeed, each of us in
    His watchcare.

  12. I don’t usually comment, but am a faithful follower. I felt
    compelled to send a message just to say you, Nora, and the rest of
    your beautiful family are always in my prayers, but I will continue
    to say a few extra today. “There is no undertaking more
    challenging, no responsibility more awesome than that of being a
    mother.” You are a wonderful inspiration and role model to all of
    us mother’s out there. Thanks for always sharing your story during
    the good and bad times. I pray that you will find peace and see
    many trios of birds!

  13. You are doing SUCH a wonderful job with that beautiful
    little girl! Prayers for you and Miss Nora! Thank you so much for
    sharing her with all of us.

  14. I am home this summer, so please call if you need anyone to run to the store, pick up the older kids, or anything! Lots of time on my hands! Hope things are getting better for you and the rest today.

  15. SuperMommy,

    First off , congratulations because you’re able to verbalize how you feel and it seems you have a lot of followers who understand your concerns. That’s so awesome !!

    About normality regarding children, I have 6 or 7 friends and neighbors with children 5 years old and under , and they all have
    ” issues” : some don’t sleep the whole night most of the nights, some are fussy eaters, some have one cold after another , or belly gasses, or colics, or ear infections…. I think a baby without any issue is the abnormal thing. Maybe you were very lucky with G & G and they were very easy babies. I think children are like playing golf : unpredictable .
    Maybe you’re under more pressure because of Nornor’s diagnosis , but in my opinion , this is not a matter of her trisomy, this is because she’s a baby. The truth is that bringing up a baby is HARD , no matter if she has 46 or 47 chromosomes. You’re very lucky to have a supportive SuperHubby and parents, and professional help.

    As you have done very well in other occassions the trick is not letting anxiety dominate you and your thoughts: vent, write the blog, call a friend, take a bath, a coffee, go to walk , listen to music, pray or breathe deeply . As in England say : “keep calm and carry on” ( it was used during the WW2 to help people to cope with the war situation).

    Keep on praying . Tons of kisses !!! Love you all!!

  16. I’m so sorry you guys have been having some rough days. I will say some extra prayers that little miss fussy butt calms down and you guys get to enjoy this beautiful weather.

  17. Alesia,
    I wished that I lived closer to you and could just be there and give you a hug and a shoulder to cry on. You are so strong for everyone, it would probably be nice to be able to be comforted too. But I know that God is watching over all of you and that Nora will get better, grow, and thrive!! I love all of you and I’m so glad that Nora and your gift with words have brought us together!!

  18. Dear Sweet Mama Alesia, Despite the challenges, emotional
    vulnerability, lack of control & “nasty ol’ germs”, you
    maintain your fervent faith & find that “silver lining” in
    each and every moment….just a rare and true gift! In regard to
    Nora’s unfortunate “I don’t feel goods…” I know you have said she
    is quite sensitive to textures and things orally…(unsure if her
    upchuck was due to fever, virus or taking Tylenol), but just
    thought I might offer the suggestion of a Tylenol rectal
    suppository~melts to deliver the medication, and if there is an
    upchuck, the Tylenol is not “lost”. Just a thought, though I know
    something in her tushy would not be pleasing :0( Warmest healing
    prayers to sweet Nora, and blessings to you and your amazing
    family!

  19. Thanks again for sharing Nora with us. Your faith through this blog has reached across the world. You would not have reached across the nations without the diagnosis of trisomy 18. I am a nanny for Ireland born April 30th, 2012 after prolapsed cord after ambulance ride several minutes and emergency c section.. apgar scores as low as 1 and 2 at birth. It has been a challenging year. She now has pneumonia for 2nd time in 2 months, takes nothing by mouth, is tube fed and weighs 14 lbs. projectile vomitting several feedings a day. cries with her mouth shut, doesn’t sit up yet.. All of this is difficult but has opened the parents up to God again after being put out of the picture through med school, and the birth of 2 other children and the busyness of parenthood.Seeing daily improvements are thrilling while seeing “normal” 1 year olds is discouraging. Her mother commented that she is sad that this has happened to her only girl and last child but if she did not experience “normal” two times before it would have been so much harder. If you get a chance, google the poem “Welcome to Holland”. It is about how life changes and is different from how we wanted it, but if we spend our time wondering “if”, we will miss out on the very special, very lovely things before us. Praying for strength for you, and healing for baby Nora. God is watching her every step of the way evident through daily 3 bird sightings. God bless you all!

  20. Just wanted to say, you are doing an amazing job. It is so
    clear that your family is living life to the fullest, appreciating
    and loving each other, knowing life is precious–these are gifts
    from Nora. Even when you have normal feelings of anger and anxiety,
    you are deliberately walking along the path to holiness, it’s
    amazing to see. Prayers and love to you from CA.

  21. I AM SO SORRY THE PATH IS A LITTLE BUMPY RIGHT NOW. YOU AND NORA, AND YOUR WHOLE FAMILY HAS BEEN SUCH A BLESSING FOR SO MANY. I KNOW SOMETIME I CANNOT WAIT TO READ YOUR BLOG. IT IS SO UPLIFTING THAT MY DAY IS ALWAYS BETTER. IF YOU GUYS ARE HAVING A BAD DAY, IT MAKES ME PRAY HARDER AND I FORGET MY PROBLEMS. I HAVE PRAYED SO HARD FOR MISS NORA ROSE (ALONG WITH A LOT MORE PEOPLE) AND I FEEL AS THOUGH SHE IS A BLESSING SENT BY GOD TO YOUR FAMILY AND ALL OF US OUT HERE. ALEISA, I JUST WANT TO SAY THANK YOU AGAIN FOR SHARING NORA AND THE REST OF YOUR WONDERFUL FAMILY WITH ALL OF US. WHEN THINGS GET TOUGH FOR YOUR FAMILY, JUST REMEMBER GOD IS RIGHT BESIDE YOU, AND THAT MANY OF US ARE RIGHT BEHIND YOU TRYING TO PRAY THAT THINGS GET BETTER FOR YOUR WHOLE FAMILY. I LOVE YOU ALL VERY MUCH. I ALSO WANT TO SAY THE PICTURE OF YOU AND WILLIAM IS SO GOOD. I LOVE THAT PICTURE. YOU GUYS MAKE A BEAUTIFUL COUPLE. IT LOOKS LIKE NORA IS IN A GROWTH TIME RIGHT NOW. SHE IS GROWING SO FAST. WHAT A BEAUTIFUL LITTLE GIRL!!!!!!! ALWAYS LOVE YOUR PICTURES THAT YOU POST. THANK YOU FOR BEING SO HONEST AND POSTING THE “HARD TIMES” ALONG WITH THE “GOOD TIMES”. WELL GUESS I WILL CALL IT A DAY PRETTY SOON, AS I AM VERY TIRED TODAY FOR SOME REASON. TRY TO GET A GOOD NIGHT’S SLEEP, AND I PRAY THAT TOMORROW WILL BE BETTER. SENDING MY LOVE AND PRAYERS YOUR WAY. GOOD NIGHT AND GOD BLESS.

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