Independence Day

A month has slipped by without her. Sometimes my heart hurts so badly I wonder if it’s possible to die of a broken heart. Bins of memories are stacked up in what was supposed to have been her bedroom. Plants and flowers from her funeral fill the void of the toys, chairs, and medical equipment. They’re beautiful and they’re something to occupy my unemployed hands. How horrible it was to take that little red white and blue dress down off of the hanger. I had it waiting for her – for today. Assuming that of course she would be here for her third Fourth of July — assuming there would always be tons of pictures to take.


These are the thoughts that try to stir up my bitterness and rage evoking such sentiments as, “Why me?” “It’s not fair.” “I can’t do this.” My wounded soul, intimately connected with my God hears, “Yes, you! Give thanks!” “It might not seem fair, but someday you’ll see.” “No, you can’t do this. That’s why I’m going to carry you through it.” I lay my head down and breathe it in, so thankful, so blessed.

The days, the months and the years will continue on without her. I will continue to miss her terribly, but death has no power over true and eternal life. Today I not only celebrate our nation’s freedom, but the freedoms that Nora experienced directly because of it.

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain inalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

“All men” includes babies endowed by their Creator with a precious extra chromosome. Nora had a right to her amazing but short little LIFE. She didn’t have to go through any great lengths to pursue her HAPPINESS. As for LIBERTY? She finally has her true liberty. She is liberated from everything that restricted her health and development. It might not say it in the Declaration of Independence but it says in the Bible:

And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.”
(Revelation 21:5 ESV)

“All things new” is the greatest liberating promise of all. I’m in pursuit of THAT kind of happiness and blessed with the FREEDOM to do it.




12 thoughts on “Independence Day

  1. Dear Aleisa,
    I want to say “Thank You”, for choosing to Continue what He began. To have that tiny girl grow and thrive within your very body, well that is Gift! Nora Rose, and You who Carried her, are two of the most inspiring and Beloved Gifts, that I personally have met in this lifetime.
    He has made her Whole and I Rejoice in knowing that Norn is New and Whole.
    Much Love, to all of Nora Rose’s Family.
    Auntie Jo

  2. My prayers are always with you and your husband and your older children. I know you are all suffering as you grieve your sweet Nora. Thank you for continuing to post on your blog. Thank you for shining a light as someone who made a hard decision to carry her to term with the following blessing of 2 years…which was too short but still much longer than many expected for sweet Nora. I am so sorry, so very sorry, that you lost her. I pray for God’s peace and strength.

  3. Can’t believe it has been a whole month since Nora’s passing. I know some of the pain you felt when you looked at her outfit. I had bought a gift for a friend for her baby and 2 weeks later she miscarried the baby. I would look at the gift and wonder what it would have been like if the baby had lived. I ended up keeping the gift and giving it to the same friend’s other baby who was born a year after her sister was miscarried. I was so glad I saved the gift. THANK YOU SO MUCH FOR CONTINUING TO BLOG!! I hugely appreciate it!!!!

  4. My heart aches as I read about the dress you had all picked out for her!! I can only imagine the pain. I think about how I had certain outfits planned for my kids for yesterday. I plan quite a bit in advance if I want to coordinate anything. And I try to think of how you must be feeling. And I picture the pictures of Nora in that dress. I can just see her precious face in my mind. I am sure it is even more clear for you. And I know the Lord is truly carrying you. I listened to a song the other night drifting off to sleep that my husband was playing. I immediately thought of you. It was SO beautiful about the Lord carrying you. I told myself that somehow I must get it to you. I didn’t know the song or the singer, but I will have to go back and see if my husband has it in his phone. You are on my heart, and I am missing sweet Nora even though I have never even met her. I am praying for you Aleisa!!!! Much love today! xoxo

  5. Aleisa::
    It is okay to question God, to be angry and to ask why? Jesus did… He can handle it. Your faith will withstand the grief but it will be a hard walk. Pushing it down and covering it up will not make it go away. You must grieve, you must cry, you must question and you will heal. We are human and frail and it that weakness He carries us, forgives us, cleanses us and heals us. Be gentle to yourself. Yes, He knew Nora’s beginning and her earthly end and He knew how broken you would be. Just remember others have walked your path and have passed through the valley of despair and pain to emerge changed, stronger, wiser and more compassionate and ultimately more like Him.
    Psalm 23
    The LORD is my shepherd; I shall not want. He maketh me to lie down in green pastures: he leadeth me beside the still waters. He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.

  6. Dear Aleisa,
    Many thanks for continuing to write, even through your grief. Nora, our beautiful angel, lives on through these words. Your tremendous faith continues to help, encourage, enlightened and bring readers to God. All your readers, including myself continue to keep you in our prayers and wrap you in a big hug. Thank you dear friend

  7. I have been following your blog for over a year now. By the grace of God, I stumbled across it in google last summer. My sister and I were both expecting (her fourth, my second). She received news that her fourth son would most probably be born with Trisomy 18. She was sent to a specialist. The two weeks waiting for her appointment were agonizing. During this time is when I came across your blog about sweet Nora. I read every post and told everyone about Nora and shared her pictures. The more I read, the more I had hoped I had came across the blog sooner! It was always pure joy to see Nora and to hear of her stories and accomplishments. My sister went to her specialist appointment and was told that her baby was completely fine. Nothing wrong with HER. Yes, we also received news that she was not having her fourth boy, but her first girl! Today she has a precious baby girl named Olivia. But it was through her misdiagnosis that I came to find and love Nora Rose. I would tell my students about her and I also talked about her during a presentation at a religion conference that our diocese recently held. Please continue your postings, even through your heartache and pain. You have no idea how many lives you and Nora have touched. God Bless

  8. I am a male in my mid thirties, have never met you or your family and live in another state (so I guessing that I am probably not your typical audience for the blog). I stumbled upon your blog late and could not stop myself from reading Nora’s story post-by-post. Unfortunately, by the time I found your blog I knew of Nora’s passing. Many have written you to let you know the power of your words, and shared with you that you cannot imagine the impact that Nora had on the world around her and beyond.
    Reading your posts I found myself laughing with her, cheering her on, and crying as if I was right there with your family. One of the earlier photos I remember was your husband holding Nora in his arms at the pediatrician office after she had received shots. Nora was snuggled into his arms and I could not help but notice the love that they have for each other. As a Dad that broke my heart as I cannot imagine having to go through that. You both are UNBELIEVABLE parents!!
    Nora was such a strong little girl, with courage far beyond her years. I truly thank you and your family for being willing to share her life with so many others. God knew what he doing with Nora’s story and your ability to share it with the world. I hope that you find peace in your continued writings. Thank you so much to you and your family for sharing Nora with us and I will be keeping you and your family in prayers. Please continue your writing on this blog, your words have such profound impact on so many.

  9. Aleisa,
    As a photographer, my heart was captivated over two years ago by the beautiful birth photos of Nora. Through studies and exhibits, I’ve not seen such a story told in a small set of photos. Day by day, I have followed your journey and admired the vulnerability displayed in your writing. But most importantly, as a sister in Christ to Nora and your family, the unwavering position on the foundation that these sufferings bring you closer to Him has helped reshape my portrait of Christ, revealing more and more His true character.

    As I was reading last night in Romans (8:22-25), I couldn’t help but think of sweet Nora…
    “For we know that the whole creation has been groaning together in the pains of childbirth until now. And not only the creation, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies. For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience.”

    I’m unable to form more perfect words than those from John Piper explaining the “peculiar glory” He is working in these sufferings. I hope this raw song from Shane & Shane accompanying those words may be an encouragement.

    So it was no surprise as I left for work this morning to see three mourning doves perched on a line, reminding me of your family, your beautiful daughter, and our merciful Savior. Be encouraged that the body of Christ is praying to help bear your burdens and bring the God of peace to more closely to you.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s