How quickly a 2 ½ hour crying jag can take everything I’ve been so thankful for and throw it right out the window… And how horrible and selfish that seems to me as I just typed it out.
Nora has a cold, which makes breathing and eating difficult. Sensing my anxiety I think is making things much worse for her. She cried so hard she turned blue. Her clogged tear duct isn’t getting any better either. A trip to the pediatrician was in order. After a lengthy listen to her lungs we were instructed to get an xray up the street at the Children’s Hospital outpatient center. It was to ensure there wasn’t something else serious going on. Fortunately we didn’t need to wait too terribly long for an answer and it was determined that there was no pneumonia – praise God!!!!
It’s been a very long day and I’m glad it has finally come to an end. I love this little girl beyond belief – but I needed a little break from her this evening. It was good to get away for a couple of hours to the back deck of a friends’s house for a girl’s get together.
As if a crabby, colicky baby isn’t trying in and of itself – we have this whole other cardiac, lung, trisomy 18 issue compounded into the mix. I spent a bulk of the day angry and frustrated with God, feeling alone and defeated. “Everyone else can have normal babies… Why do I have to deal with this??” “I can’t do this… This sucks…” “Why why why why why?????” … and on and on whined my spoiled inner-being.
Remember when I was so thankful just to be able to hear that first cry? Remember how exhilarating it was to be able to give her tiny little body a first bath? A first walk to the mailbox? And on and on and on… I have been more than beyond blessed and now here I am taking it all for granted and bitching about it.
I wish I had a better 3 month birthday to report, but it is what it is. I can only hope for a better tomorrow or pray that it is at least bearable. I told God today that I really could do without any more lessons in patience… but apparently He thinks otherwise. Please pray that sweet little Miss gets over her cold soon and that nothing else gets tracked in here.
Heard this song today for the first time as I was leaving the pediatrician’s office – made me WEEP…
As much as my human heart may lash out at God right now, my soul will forever give him thanks and praise.
iwillcarryyou 
Be patient with yourself. You are, after all, *just* a woman (not as in, ‘just a woman’ as opposed to a man, but just a woman as in just a human being), and with all our feminine *richness* that can be so unwieldy and obnoxious – our emotional ups and downs, our cyclical tiredness and moodiness, our sensitivity, our over abundance of feelings. I’m sure God can handle a bit of frustration from you, and understands that your irritation is just weak humanity. If he sends an angel to comfort even His Son in Gethsemane, surely we can be certain that he understands our desire for things to be easier. I love to “watch” in my soul that angel stroking Christ’s head as He sweat blood. The angel could offer Our Lord almost no “real” consolation. He couldn’t change God’s will or take away what Jesus was facing in the next several hours. The only consolation he could offer Him was loving Him. May you be surrounded with that love and find all the consolation you need in it. Kisses to your cute little princess!
Beautifully said, Katie. What a wonderful image to carry in our hearts, especially on days when we need comfort.
You have such a beautiful heart. You have every right to feel everything you feel. Nobody understands better than God, even when you’re mad or frustrated with Him. All feelings are legitimate and it’s important to feel them and process them. It helps you to move forward with strength and a clear mind. You are doing such a great job, and you couldn’t be a better mommy to Nora. God bless your sweet self, God bless your family, and God bless sweet little Nora. ❤
You’ve been amazing and I LOVE YOU. Let’s sleep. And thanks so much Kate. It has been a tough day. Hearing you say sleep in never meant so much.
I still worry like crazy every time Kinsey gets a cold or her breathing even sounds congested that she’s got fluid in her lungs. It’s something us trisomy moms can all relate to! Fortunately her lungs have always been clear. I hope the same for you and little Nora!
I just downloaded the song on iTunes! Thanks for sharing it! I’m a runner so I like any song that talks about racing!
Never commented before but I follow your blog and you are such an inspiration. I read this poem the other day and thought of you 🙂
I AM
I was regretting the past
and fearing the future.
Suddenly, my Lord was speaking:
“My name is I AM”
He paused.
I waited.
He continued:
“When you live in the past,
with its mistakes and regrets,
it is hard.
I am not there.
My name is not – I WAS.
When you live in the future,
with its problems and fears,
it is hard.
I am not there.
My name is not – I WILL BE.
When you live in this moment,
It is not hard.
I am here.
My name is I AM.”
-Helen Mallicoat
Praying for rest for you both tonight, Aleisa. I look forward to reading your updates each evening. Your surrender to God and reliance on His sovereignty in the face of complicated and uncertain circumstances encourages me more than you can imagine. I, too, am on a hard journey. A totally different one, but a hard one, nonetheless. And I, too, long to hear “Well Done.” Grateful tonight that His grace is sufficient for us both. He is more than enough for me as I lay my head on my pillow tonight. Hope He is for you as well. Love across the cybersphere! Lori
Get a cool mist humidifier for the room Nora sleeps in and dress her in warm jammies…that will help clear up the cold! I will pray for Nora to heal as always, and will be praying for you to have continuous comfort from God. I will also pray for your husband and two other super adorable kids…you are all dealing with the good and the bad in different capacities…
I heard your Bob Marley song today and said a prayer for dear Norah and your family. Thank you for being such a great example through your difficult times. Thank you for letting us see into your life.
Be kind to yourself. Remember when your kids throw temper tantrums. I am sure that God looks at us when we feel like this as thinks the same as we do as Moms. ” I love you and I know you are angry. But trust me to know what is the best for you”
Dear sweet Nora,
Happy 3 months old !!.
I keep praying for you so you can get over that cold.
Your Mommy loves you so much that she becomes very worried about you when you get sick.
I know she’s very grateful for the fact that you are healthy enough to be able to cry as many very sick babies can’t do it.
Tell your Mommy that all she needs is to get a good sleep and to have a break from the Milkies Café every day. All Mommies get tired as taking care of a sweet little baby is a hard work.
God bless you.
Love,
Maria 🙂
You don’t know me, but I faithfully follow your blog daily and hold you and your family up in prayer. Your post tonight touched my heart so much. As a mother of four I remember those loooong fussy days, but your stress and anxiety level are at a different level. You seem to be a wonderful person and without a doubt you are one amazing mother! Stay strong, Keep the Faith, and know you are always surrounded by prayers:)
Well said Christa!
Leis, When Mark cleaned the carpet and living room furniture with the garden hose, Mentally I yelled and carried on at God. Two reasons for this: One, I believe in Him; (I’ve never been ticked at the tooth fairy). And, two -He can handle my rantings and ravings -psycho lady screamings better than my three year old can.
He’s big enough to handle what you hand Him when you can’t handle anymore.
PS. Make sure you are nice to Nora’s Mommy.
Prayers for you Aleisa….and for little Nora I hope she gets over her cold soon.
Happy 3 month birthday Nora!! Alessia and Will, hang in there. As i am sure you know from raising your other children, this is the “normal” baby experience! While sweet adorable Nora may be seen as “different” in the eyes of the world, in the eyes of God she is perfect, just as he planned, and completely normal. You have both been called by Him to take on this sometimes challenging task of raising a child that has exceptional needs–he chose you because of your strength and your love. Lean on that in times of frustration. Alessia, you have had a typical “mom” day–and you are an amazing Mom!! We all have bad days when we need a ‘break’ from our kids, sometimes my days turn into weeks…..once again, hang in there, and I hope that sweet little Nora feels better soon!!!!
ALEISA, DON’T EVER THINK THAT YOU ARE NOT A GOOD MOMMY. I ALWAYS THOUGHT MY MOMMY WAS THE BEST, AND I THINK WITH ALL MY HEART THAT YOU ARE RIGHT UP THERE BESIDE HER. HONEY, WE ARE ONLY HUMAN AND WE WILL ALWAYS GET FRUSTRATED. YOU AND WILLIAM ARE SO TIRED, AND ALL THE WORRY ABOUT TOMORROW (THURS.) JUST IS ALMOST TOO MUCH FOR BOTH OF YOU. REMEMBER GOD WILL NEVER PUT MORE ON US THAN WE CAN HANDLE. HE WILL ALWAYS BE WALKING WITH BOTH OF YOU GUYS THROUGH EVERY DOCTOR VISIT AND EVERY SECOND OF EVERY DAY. I AM SO HAPPY NORA’S LITTLE LUNGS WERE CLEAR. HER COLD IS JUST MAKING HER FEEL BAD, AND SHE IS JUST FUSSY. SHE WANTS MOMMY TO KNOW SHE DOES NOT FEEL TOO GOOD BEING ALL STUFFY. WE ALL KNOW THAT YOUR LOVE FOR NORA AND BOTH THE OTHER CHILDREN IS BIGGER THAN THE UNIVERSE. AS MOTHERS, WE ARE ALLOWED TO BE CRANKY EVERY ONCE IN AWHILE. WE ALL UNDERSTAND. DEAR BEAUTIFUL SWEET LITTLE NORA ROSE HAPPY 3 MONTH BIRTHDAY!!!! I LOVE THE PICTURES OF YOU AND GRETA. LOOKS LIKE YOU AND GRETA HAS SO MUCH FUN TOGETHER. I AM VERY SORRY YOU HAVE A COLD, BUT I AM SURE YOUR MOMMY WILL TAKE VERY GOOD CARE OF YOU, LIKE SHE ALWAYS DOES. SHE LOVES YOU SOOOOOOOOOOOO MUCH, AND SO DOES THE REST OF YOUR WONDERFUL FAMILY. I BET THAT YOUR BIG SISTER AND BIG BROTHER WILL EVEN HELP TAKE CARE OF YOU, AND EVEN GIVE YOU SOME MILKIES. I WILL BE PRAYING FOR YOU AND YOUR FAMILY TOMORROW. JUST REMEMBER THERE ARE LOTS OF PRAYERS GOING UP FOR YOU, AND THAT YOU ARE SO LOVED BY MANY. HOPE YOU GET FEELING BETTER REAL SOON. GOD BLESS YOU LITTLE ONE. I AM HAPPY SOMEONE WAS THERE LAST NIGHT TO TAKE CARE OF NORA SO YOU AND WILLIAM BOTH COULD GET A GOOD NIGHT’S REST. HOPE TODAY IS A BETTER DAY AND THAT IT IS LESS EVENTFUL. TAKE CARE AND GOD BLESS YOU AND THE REST OF THE FAMILY. LOVE AND PRAYERS TO YOU ALL.
You are doing a great job and you are an inspiration to us all. I hope your girl time was just what you needed to recharge and relax a little. I only know you through this blog but I am glad that I have found you because you have helped me to renew my faith in God and just be a little better of a person each day of my life. Thank you. Hugs!!
Aleisa,
I have a large family, like you…Also, I’m Mom to a special little one, like you. Take care of yourself, take time to breathe, take long naps when you have the chance, and it’s mandatory to get a pedicure (or the like) once a month. If you take care of yourself, you’ll be better at taking care of everyone else.
-Kim
PS: I would like to express my gratitude to you for sharing Nora’s story. It’s inspirational! It’s become a habit to wake up, go to my computer, and check my mail to see how Nora is doing. 🙂 I Pray for her often.
I love reading your blog! I pray for your family and your stress level. This may sound crazy but using breast milk for the clogged tear duct works wonders. I did this with my daughter and her eye cleared up in two days.
Hold tightly onto the worry cross & give all your frustrations to God! That’s what He is there for! He can handle it! He knows you need to get it out ! Hang in there! You and your family have so many people behind you! Continued prayers!
“God doesn’t give me more than I can handle!…I just wish he didn’t trust me so much!”
Mother Theresa
Happy three month Baby Nora!!
I’m sorry little miss was sick, sick babies are hard as it is. Your one of the most tender people I know, so I can only imagine how taxing it all is for you. My prayers for your renewal continue.
B
Thinking of you and hoping Nora gets well soon. Don’t beat yourself up 😉
I don’t think God will be upset with you for being angry. I have always thought that if God didn’t want you to have the emotions of anger and frustration he wouldn’t have given us the capibility of experiencing them! I don’t know you personally, but have been following your story since one of my friends in NKY shared your link. I believe you are a wonderful mother and God gave you Nora because you were just the person she needed! I will keep you in my prayers as well as Nora. Sometimes Mommy just needs to vent her frustrations and God understands that. I know you have probably been told this a milion times, but God won’t give you more than you can handle. God must think you are a pretty strong woman! I hope you have a much better day today and that little Miss Nora is on her way to feeling better. 🙂
I’ve never left a comment here, but I’ve been reading your beautiful story, and wanted to say. You MUST stop being so hard on yourself! Babies are HARD – completely healthy babies, colicky babies (I had one of those), all babies. And add Nora’s situation to the mix, and BOOM – everything got harder. What comes with a hard, colicky baby? A TIRED mama. And what comes with a tired mama? Frustration and sadness. YOU ARE NORMAL. But you know what? You’re also one of the strongest women I “know.” I can’t believe you strength. So go ahead. Have your own little pity party (not being mean, I mean it – go ahead!) and when you’re done, pick yourself up and move forward. God loves you so much – and doesn’t mind at all when you’re angry. He LOVES that expression, because it shows faith that you know He’s ultimately in control – even when we don’t like it all the time. So kiss that baby, get some sleep and stop beating yourself up!
Don’t be so hard on yourself. You are an amazing mother and you are handling this whole thing beautifully, in my opinion. Things don’t always run smoothly even with “normal” babies…I’m sure you know this. It’s ok to get frustrated and to feel angry and to need a break. The important thing is that you always come back to the good place…the place where your faith in God gets you through all of it! 🙂 Will be thinking of you and little miss N and praying for you!
You can DO this… you’re right… God gives people “normal” babies all the time and it doesn’t seem fair. BUT- He had a special baby and knew you were just the right one for the job! One day at a time, one hour at a time… heck, even one minute at a time you CAN and WILL make it through.
Aleisa, you are only HUMAN, dont be so hard on yourself! I cant imagine the stress you endure on a daily basis, much less after a 2 hour crying jag. Thankfully, you have friends & family to take up the slack & give you a much needed break. Wish I had a magic wand to wave, alas I do not, so I will pray. Being emotionally raw & uncensored cant be an easy thing to do, esp in front of strangers. Thank you for being so open. I admire your strength, courage. HUGS
Amy
Dear Aleisa,
I read your blog every day and am inspired by your faithfulness.
The Gospel reading for yesterday (Mt. 11:20-24 , we Catholics get one every day…very convenient. 🙂 tells of Jesus losing his temper with his faithless followers. It is one of the few places where he “loses it” with people out of his frustration. His predominant message of mercy and love overtaken by his humanity. If Jesus can have a bad day…I would guess you are allowed a few as well.
Take heart…Jesus goes before you always and truly understands how you feel.
Much peace,
Kristen
aleisha, for more reasons than i can explain, you are a blessing to me and i can’t thank you enough. thank you for leading me closer to our Lord. i give thanks to Him for you…and for your beautiful children that have been the impetus for your blog.
Weeping too, while listening to that song. It’s so true, someday, you will run into His arms and without a doubt, He will say, “Well done”. Do you know how proud He already is of you???! And at least you have the wherewithal to recognize how your thoughts are getting the best of you, because you always have Him to come back to after a “downward spiral” kind of day. You have to remember that you are, just like everyone, going to have really crappy days. Keep your chin up, focusing on asking God for patience and guidance. Guidance to make decisions, guidance to advocate for your sweet little Miss. You guys were chosen to be her earthly parents for a reason!! ❤ you and praying with all my heart!!!
Everyone has said the words that I have in mind and in my mind – so I will add an Amen to their comments. Don’t be hard on yourself because God, your husband, and your children aren’t. Those of us that are standing along aside with you understand these feelings. My prayers go out to you and your family. God is right there beside you and walking along with you. You have been chosen for this special little girl and you are very blessed with the patience and love that is needed. God be with you all the time….
Thank you, thank you, thank you for your transparency. Its been such an encouragement to read about your journey and your honesty gives me that extra push i need to get through mine. Those bad days really do suck, but luckily we serve such an awesome, loving, and merciful God who can get us through just about anything.
I pray little Nora gets better soon. And i pray you get the rest and strength you need to push through.
xo
Praying for your beautiful little Nora that she gets better soon 🙂 God bless her and you as well!
HAPPY BIRTHDAY 3 MONTHS NORA.. AND YOU ARE SO BLESSED TO HAVE CHOSEN THE BEST FAMILY IN THE WORLD.. GOD BLESS YOU AND THEM..
I’ve been there. I’ll be there again. A sermon a few weeks ago was on Ps73. I’m reading it every day because I need it everyday. You have been a blessing to anyone who reads this blog.
Alesia – as always, keeping y’all in my thoughts and prayers. I had a thought this morning, maybe it’s not God trying to teach patience but Satan trying to test your Faith! I know who will win that battle!
You have helped me to remember to not take anything for granted. I have healthy babies and I get frustrated and feel defeated sometimes. You are amazing and I admire you so much. Nora is beautiful and I love that little baby even though I’ve never met her. God has chosen you for her and He’s also chosen you for all of us. You are such an inspiration. Thank you!
Alesia,
I so identify with this post today and want to thank you again for being so real and honest. It is hard to admit sometimes, but pity parties come along for all of us. I was so glad to read that your geneticists recognized Nora as the rockstar that she is- and she definitely IS! And your post today made you sound like the most normal person, normal woman and normal mama out there. All of us get frustrated, all of us have down days. When you have a child with medical issues, those days sometimes come more often than others. I tend to try to hide my frustrations because I’m supposed to be the strong one. I’m supposed to be the one with all the faith who never has a down moment, when in fact my down moments are truly when my faith comes out stronger than ever. Your blog, and that of other mamas who have gone through similar challenges, inspires me to be thankful each day. Please know that you are such a blessing on so many lives, if for no other reason than your raw honesty. I have joked that I am completely in love with a stranger’s baby (which I am- Nora has stolen my heart!), but I think all of us feel such a love for you and the rest of your family. It’s hard to be strong for everyone around you, all the time. Take those times, short though they may be, and renew yourself. Your family is so blessed to have you!
On a side note- I LOVE the picture today without the tegaderm patch. Such sweet cheeks your girl has!
Prayers for speedy recovery for sweet Miss Nora- and peaceful days and nights for mommy and daddy.
Our God is forever Awesome! “Though we walk through the shadow of death we shall fear no evil, for Though art with us!” SO glad we are not alone! So glad my son Bryce is now living with HIm and all the wonderful glories of our Father!
Your angel. she is beautiful and yes has so much to teach you and everyone else she touches. Live today in love, patience, joy, tenderness. experience and allow the confusion, pain, fear. Hold fast for the gifts that she is here to give you. You truly are blessed.
I do understand and have been there.
thanks for sharing.
Laurie
I am supprised that you havent” been there before now, God can take it. And he answered your anger with Love. Honey hang in there. Love your baby girl every moment. I am still praying.
Scripture
Psalms 13:1,2
How long, O LORD? Will you forget me forever? How long will you hide your face from me? How long must I wrestle with my thoughts and every day have sorrow in my heart?
Ps 13:5,6
But I trust in your unfailing love; my heart rejoices in your salvation. I will sing to the LORD, for he has been good to me.
Devotional When God Is Real To Us
When we have had a real encounter with the Lord, we are able to respond as David does in this psalm. Even though he feels as though God has forgotten him, and he has sorrow in his heart, he still puts his trust in the Lord. Oh, taste and see that the Lord is still good, no matter what comes our way; we put our trust in him.
He has not forgotten you! We all have moments of vulnerability. Thank you for being so very real! Love and prayers!!
I’ve never commented here before but have been following your story since someone I know from Crossroads posted Nora’s birth story. Thank you for sharing and for being open and honest. Besides, as Brennan Manning once wrote, “projecting a flawless image keeps us from reaching people who think we wouldn’t understand them.” Thank you for not pretending to have it all together. I’m praying for peace for you tonight and easier breathing for Miss N. Blessings to you all.
Remember that you are saved by grace – you don’t need to do everything perfectly because He is perfect in your place. He has already taken your place, and your imperfections are filled in and smoothed over. He will make you beautiful.
I’m praying for you. As we all are. Thank you for letting us be part of the strength, standing in for you, when you are exhausted and weary. I’m sorry this is so much to bear. I’m so glad that God is God.
Dont be too hard on yourself, Alesia! You are an amazing inspiration to so many followers!! I envy your faith and trust in God and your strength is helping to rebuild my trust in Him. I am praying that tomorrow brings relief, peace, and great news. Thinking of you and your sweet Nora always!
When I get tired and weary from the road God has asked me to walk or sometimes when I think He’s got the wrong girl I listen to this song and allow it to strenghen my spirit. I hope it does the same for you. Peace be with you!