Uncertainty

So much time has gone by where Nora has been doing exceptionally well. It’s easy to trick myself into believing these days will never end. My blood runs cold to think they could, which is just my stupid thoughts getting too far away from me into the unknown future. She’s been extraordinarily fussy all day today and on into the evening. Her oxygen saturation levels are reading low into the 70s at times, according to the pulse-ox machine — but not sure if they are reading in error. I feel like puking right now as I write this. How could I possibly take another breath without this baby? I just want life to be NORMAL. I hate being tied to the living room with her.We do get out from time to time, special outings, walks, and even a VACATION, which I am so thankful for!! Those are rare occasions though. I want to regularly take her to the zoo. I want to take her to the swim club. I want to take her on picnics. I want to take her up to have lunch at the kids’ school. Hell, I’d be excited to be able to take her to the damn grocery store. The weight of all of this uncertainty is so heavy tonight. I’m tired and overwhelmed, longing for all of the yesterdays that I totally took for granted. And of course I’m sitting here thinking about how “unfair” all of this is when William informs me that there are three birds sitting out in the tree in the back yard. Of course there are. God is
I RIGHT. HERE. WITH. US. I get that, but that doesn’t guarantee smooth sailing from here on out. When life hurts like it does, its all the more likely that I’ll go running to God–His arms already open ready to catch me.

We managed to get a little cake with candles on the table for poor Greta and sang Happy Birthday to her. The dam holding back the tears had already broken by the time bed time rolled around. I hate that my sweet little 7 year old had to see me crying, especially on her birthday. For as young as she is, she is the most compassionate, empathetic, tender-hearted little girl I have ever known. I wish things were “normal” for her and for Gavin too.

Note to self:

We pray that you’ll live well for the Master, making him proud of you as you work hard in his orchard. As you learn more and more how God works, you will learn how to do your work. We pray that you’ll have the strength to stick it out over the long haul—not the grim strength of gritting your teeth but the glory-strength God gives. It is strength that endures the unendurable and spills over into joy, thanking the Father who makes us strong enough to take part in everything bright and beautiful that he has for us.
(Colossians 1:12 MSG)

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26 thoughts on “Uncertainty

  1. I am so sorry that you are experiencing these feelings. However – it is okay to be angry, hurt, and scared. God understands this completely. It would be very difficult not to feel this. I will be keeping you and your whole family in my prayers. I thank God for sening His three little birds to let you know He hears; cares; and loves you all very much. Thank you for opening yourself up and sharing how you feel. It gives each of an opportunity to lift you up to the throne of grace and God’s loving arms holding you all. I pray that you will be able to sleep at peace tonight.

  2. I too will pray for peace that transcends all understanding to envelope you tonight. I am sorry that Satan has captured your thoughts, but give them to Jesus so he can give you rest.
    I also thank you for opening up to us, some of us total strangers. I read your post, most every night the last couple of weeks, and am always amazed at your strength and faith and I can’t help but think,”I know I could never be that positive, loving, full of faith”. But tonight you showed me that you do still battle life as we all do and because of your faith in Jesus Christ, you will persevere.

  3. Prayers for peaceful rest tonight, Aleisa. Glad your sweet one is doing so well! Isn’t that funny that even in those good times, we wait for the other shoe to drop? Our grace giving God understands, though … and then sends those 3 little birds to your window for a big God hug. Lots of love to you!

  4. I have been somewhat behind…in sharing…but thought I might share this with you…my birthday was in the beginning of the month..after spending a few days in the mountains of colorado-it was time for me to return home to arizona…just as i was driving into the airport there were 3 birds…that flew right infront of the car…and just feet behind that another set of 3!! Some may say that there were 6..which is true… But they were so clearly seperated into groups of 3!! I knew right then that I needed to be praying for you and your family! And whenever I see them in 3! I do stop and pray! 🙂
    A verse that has been on my heart and now I know who its for- May the God of hope fill you with joy and peace as you trust Him, so that you may overflow with hope by the power of the holy spirit. – Romans 15:13

  5. I don’t know the specifics of why you’re “tied to the living room” with Nora, but I want to share my perspective. When Kinsey was first born and so very fragile, I was afraid to take her out, but my husband and I decided to continue living life as normally as possible with her. We also wanted to have fun memories with her in case the day came when she wasn’t with us anymore. It was important to us to do the things with her that we would have done had she been born healthy. We did this as best we could and sometimes with some extra equipment or with some concessions, but we did it. I feel like it helped me particularly to enjoy her and feel more positive. We made the most of every day and we continue to do that now.
    I know you have to be careful of germs and have some extra equipment to carry with Nora, but I encourage you to do the things you want to do with her. Maybe you have to do them in a slightly different way, but do them anyway. I think it will be good for you both 🙂
    Hugs!!

  6. I understand so much of what you expressed tonight as I felt much the same way a little over four years ago when my dear Mary, who has Trisomy 21 was born. She was so ill, in and out of the hospital, on oxygen, a feeding tube, multiple surgeries and we did not know if she would survive. At the time my other children were under 2, 4, and 7. Your post and remembering what that was like is bringing me to tears. It is so hard. You are doing it with such grace and it is such a gift that you blog about it. I wish I could take away your pain. I often felt as if I was on this crazy amusement park ride and I couldn’t get off even when I really needed a break from it. I know so well that longing for a normal life. I will never fully understand why it has to be so hard but I can see where it draws me closer to God and that there are many lessons and gifts me and my family would not have if it weren’t for this experience. It feels as if one forever has one foot in the regular world and one foot in this whole other strange new world. I just read about a little boy about 18 ms old who had a similiar baackground to Mary and recently died. I really can’t understand why some of our little ones live and others don’t. It is so beyond painful to think about. I am so sorry for your hard day and sad feelings. I will pray extra hard for you and offer up any of my daily sufferings for you, your daughter and family. I look forward to your daily posts.

  7. Remember 2 Timothy, “If we are faithless, He remains faithful.” There is an old saying among the orchardists the the most heavily laden branches always bow the lowest on the tree.” You see its the generosity of Jesus that humbles our heavy hearts. The depth of His compassion, it tends to crumble our self centered characters. His gentle, graciuos spirit displaces our self occupation and leaves US laden with His fruit of lowliness and gentleness. Don’t get discouraged because you are sad, or upset….these are normal reactions that God gave us. Even in the Bible it says God became angry, He was sad, he gave us these emotions when He made us so don’t feel disheartened when they come. Use them to ask God to strengthen you…it is times like these that He wants us to reach for Him more frequently. I love you girl! ((Virtual hug))

  8. Praying for you. I can’t imagine HOW HARD this is. May God pour his blessings of peace and comfort on you in the hard days.

    As for Greta, I think it is wise to be open that you are sad about Nora sometimes. When I was growing up, my parents rarely shared their emotions with me. I didn’t know it WAS Ok to be really sad, and I didn’t know how to express and process grief or other strong emotions. We’ve had 4 miscarriages and I’ve expressed my sorrow over the lost babies, and my children have seen me cry. You don’t want to scare your kids, of course, but our Savior wept when Lazarus died so I think it is totally appropriate to grieve at times. Nora is a precious gift and I pray she has … a full and long life, but there are real fears for her. It seems to me that sorrow is appropriate when a parent is coping with a baby who has serious potential medical issues.

    As for being stuck at home — I have to say you get out with Nora more than I do with our almost 3 month old son :-). I think you are doing great with getting her out on walks and to visit people on occasion. I’m sure you feel a bit stir crazy but it sounds like she is getting some fun experiences (not that she probably cares a lot at this point — she just wants to be with you.) I know it is hardest on you. I’m home a lot because we have 8 children and I don’t feel up to going many places with all the kids including a young baby. 🙂

    God bless you! You are an AMAZING mom.

  9. I pray you and your family find peace and some sense of certainty, even if it is just a faint glimmer. The next time I am in Cincy visiting my parents, I will try to contact you, to set up a time I could watch your older children while you get some time away, time alone, or whatever you need at the moment. I would be happy to watch sweet Nora too, if you want to have time to sleep or have time with your older children. I recall memories of being in Suzanne’s backyard with you chasing their pet bunny and I think how much you could use a mindless bunny chase in the midst of everything you and your family endure on a daily basis. Always in my thoughts….

  10. Oh my goodness, I wish I could give you big HUGS! I am so sorry that yesterday was so rough and IO pray that today is much better. Give yourself, your family, and that sweet lil thang lots of big hugs today 🙂

  11. Sending your family strength and love from Webster, NY. Your little Nora is absolutely precious and is here with a purpose. She is strong and so are you.

  12. you and your family are so loved, aleisha, not only by our Amazing God but also by so many of us that know you only through your blog. may today and the days that follow be full of blessings and the graces you need to handle the blessings. i lift you up in prayer.

  13. Aleisa, my kids start school Thursday. I can come during some days so you can LEAVE the house for awhile without worry. Prayers for Nora’s visit on Thursday and for peace and strength for you and William.

  14. Ironic, you probably write in your blog to feel sane while so many others read it to stay sane. I personally feel so renewed with your daily reminders that we’re all playing some small part in a grand scheme. After several trials and tribulations of my own I began to question my faith in God, your blog has restored that faith for me. It’s strange being eternally grateful to somebody you’ve never met but feel like you’ve known forever. Thank you for letting is in, sharing such raw emotion and vulnerability. You friend, are never alone. I know I speak for so many when I say your stroller walks with Nora, your nighttime feedings when the silence is so deafening you could just scream so your thoughts don’t consume you, sitting on pins and needles in the dr’s office waiting for answers, biting your nails, holding your breath feeling like the room is going to swallow you whole just as the dr is coming through the door…we are there. In thought and prayer we cheer you on, cry with you, cry until we laugh with you. You are not alone. I read a comment earlier in reference to a crazy roller coaster ride. Next time you’re at your lowest point, close your eyes, turn around and realize the cars are all full. Full of people that love you and your family and were not getting off until the ride stops and were forced off. Thank you on so many levels for letting so many ppl into your family and sharing your experience across the globe. As a labor and delivery nurse I’m sometimes left wondering how or why. With Nora the answer is so blatantly evident. She was born with a mission to restore faith, teach life lessons, bring ppl together (my kids ask almost daily what Nora is doing today). Even at the beach my 5 year old son stopped shoveling the sand and asked if the the sea gulls stalking his pretzels were there for Nora! Gavin and Greta are so blessed to be on this journey with such great parents as yourself and William as is Nora. And all 3 will express that someday in there own ways. Nobody knows how long Nora has on earth. Nobody knows how long any of us have. You may not be going to the zoo or swim club but you are definitely living life to the fullest in so many other ways that I think you’ll appreciate more later. No more longing for a “normal yesterday”. What is normal anyway? Yesterday didn’t include that warm, pink, little bundle of flesh that looks deep into your soul with her beautiful blue eyes and says “Thank you mommy…and not just for the milkies.” Forever grateful ~Julie

  15. I’m so glad I have found your blog and wish I found it in January. Praying that a new day brought new hope. We learned our baby likely had Trisomy 18 in January 2012 as well. We were told given the devastating heart and kidney defects visible at that time, that they baby would not make it past 25 weeks. What turned out to be our son Anthony died at 14 weeks. I know you konw the depths of pain and emotion we experienced. I miss him and the life I had hoped for him. We tried again and lost that baby at 8 weeks. That was our third loss, so I think my daughter is all God intended for us. Nora is gorgeous and your strength and love make my broken heart smile today.

  16. I hope and pray that today is a better day for you! When I get to emotional about things going on in my life that I really have no control over I just have to remember to offer it up. A lot of times if I just stop and say the rosary, by the time I am done I have a total feeling of peace. Just remember to stop and breathe. You have no idea how big of an impact you all have made in so many peoples lives. The efforts that you are putting into your family will not go un-noticed. When Gavin and Greta are older they will look back on this time and see how much you loved them and Nora. When they have children of their own you will see them doing what you did so many years prior. You are being such a great role model for them. I will continue to pray for you to have peace in your heart and mind. Some day I would really like to meet you! Take care and have a blessed day!

  17. I read your post every morning. I think of you are your family often. I pray for you. I feel your pain. I have had a pretty bad year but i have been encouraged by many including yourself and your sweet family. I listened to a song today and it immediately made me think of you. Had to share it with you. It’s called, “From this one place” by Sara Groves.

    Take care

  18. John 14:27-31 “PEACE I LEAVE WITH YOU; MY PEACE I GIVE YOU. I DO NOT GIVE TO YOU AS THE WORLD GIVES. DO NOT LET YOUR HEART BE TROUBLED AND DO NOT BE AFRAID.”

  19. Sending prayers your way tonight. You are such an AMAZING mother and you, little Nora and your entire family are an inspiration to everyone around you. Praying tomorrow is a better day for you. Oh, and a very Happy Birthday to Greta!

  20. Every day I am driving to work, I see different birds on the road, flying around or eating and inevitably, every single day, I see separate from the rest, a group of 3. I always think of you, your family and mostly, sweet baby Nora. This is the first time I’ve posted here, but I follow your blog constantly and I am always praying for a miracle. God bless!

  21. WHEN I MISS READING YOUR BLOG, AND THEN I GO BACK TO THE FIRST ONE I MISSED AND CONTINUE THROUGH TO THE LAST ONE. I JUST WANT YOU TO KNOW THAT I MIGHT NOT HAVE READ YOUR BLOG, OR LEFT A MESSAGE, BUT YOU ALL WERE IN MY HEART, AND MIND, AND I PRAYED FOR ALL OF YOU EACH AND EVERY DAY. I AM SO SORRY THINGS ARE HARD FOR YOU, BUT AFTER THURSDAY, HOPEFULLY IT WILL EASE YOUR MIND A LITTLE. I AM GOING TO THE NEXT BLOG, BECAUSE I REALLY WANT TO JUMP TO THURSDAY, BUT I READ DAY BY DAY. I LOVE YOU AND YOUR WHOLE FAMILY. LITTLE NORA LOOKS SO SWEET. GOD BLESS.

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