Skip to main content

Do It Right

Two weeks ago Knox asked me to tell him about when he was a baby. He continues to ask daily and I continue to tell him, each time I can remember a little more that I had somehow forgotten. He wants to know about being in my belly down and when he was born. It fascinates him. I like telling him his story-it makes us both smile.

I would be lying if I said that the past two weeks have been anything but perfect. Maybe that is why I have been so hesitant to post anything. Ivey has turned a corner with drastic changes, for crying out loud, she had a surgery on Friday the 13th and made it home by two o’ clock in the afternoon. It can not get much better than that. (Especially with our track record.) So, how in the world could I find something to worry about?

I’ll explain.

I think it all started with the realization that one year had almost come and gone while I just hovered above watching the person who was supposed to be me live my life. Is that possible? Then I remembered the real reason that I have not attempted Ivey’s baby book. And finally, I watched Eliot’s movie.

When I look back, it feels more like I have medically cared for Ivey more than I have been a mom to her. So much of my time is immersed in preparing formula, preparing a feeding pump, setting up breathing treatments, administering medications, performing some therapy, driving her to a doctor or worse sitting with her in a hospital and Lord knows the suctioning dominates my time with her. Only recently have I been able to carry her around on my hip like she was a baby. I just wonder if she understands how much I love her even though my quality of time with her is much different than with her brothers.

So, I pulled out Ivey’s scrapbook again. I had a lot of great suggestions and ideas that will make a great book for her. However, I keep ramming my head into the same brick wall. I can not remember. I try and try and try, but my mind is blank. I can remember going into labor. I can remember telling Matt, “This is IT”. I can remember going into the hospital. I can remember the delivery room. I can remember our conversations with each other, the nurses and our doctor. I can remember the delivery. It all makes me smile - even laugh.

Three ….. I can remember her birth.
Two …….I can remember my doctor kneeling next to my bed.
One ……..I remember they put her in my arms.


My memories with Ivey pick up about 4 days later. What will I tell Ivey when she asks me to tell her about her birth? How will I ever tell her that out of the miracle of her birth, during those moments, was only devistation? How will I ever tell her that I was uncertain if we would ever celebrate her first birthday? So as for the scrapbook, it will come together, in its own time and way. As for the future, I will someday tell her a great tale of a little girl who triumphed in the face of adversity and tragedy. I am so proud of her.

One of the initial thoughts about Ivey was that she might have Trisomy 18. This is a very grim genetic disorder that results in death soon after birth. We did not know if we would ever bring Ivey home. After genetic screens, it was concluded that her abnormality occurred on her 21st chromosome. Once home, I was introduced to Eliot’s blog. Eliot had Trisomy 18. I felt drawn to Eliot and to his parents. We all knew Eliot’s fate. Eliot lived for 99 days - a miracle. His death ripped me to my soul yet it seemed as if somehow Ivey got a second chance. God gave her more time; he gave us more time.

So this year on April 25th, I get a second chance to do it right. I will be in her room at five thirty in the morning - Laughing, singing, smiling and remembering.

If you would like to see Eliot’s movie click on 99 balloons.


Connie Barris said…
You have done such an incredible job... He gave you what you could handle at the time. And He still does. Although I can only imagine somedays you beg to differ.

When that time comes, God will give you the perfect words to share with her..

He may even give you the memories...

Unique,special and loved are words YOU use all the time... sounds good to me.
Gwen, this is a profound post. Our stories are different, but I feel a little bit the same about Addie's birth--and we didn't even know about the syndrome until she was a few days old. Just having her taken so quickly and then not being able to do the normal mother/baby stuff in the hospital room was so different than what I was used to. I remember looking at her in the NICU and wondering if I'd love her the same as my boys.

Looking back, 11 months later, I realize I love her the same and different all at the same time. After all, she's the only girl. She's the baby of the family. She came in a 4 1/2 pound package with a hole in her heart and too many questions I still can't answer.

But she knows I love her. And Ivey knows you love her. She doesn't know any different, and nobody else can administer those meds, or suction, or do treatments the way you can--God chose YOU to be her mother, and there's nobody else in the world who can do it better.

I can't believe it's almost her birthday--what a celebration this one will be! I'll be rejoicing at home (asleep, that is!) with you. You are BOTH amazing girls.

(And this totally should've been an email. :) )
laglover said…

You could totally just recite what you just wrote...word for word. Beautiful and perfect.

I agree that when the time comes, so will the words.

If you need any help at all with a binder, scrapbook...whatever, I'll help in a heartbeat!

JenMom said…
There is no manual for what you are doing...but if there were, I think you would be consulted as an expert. You are doing an incredible job.
Remember this is the new normal...not the same ballgame as with the boys.
You are incredible. God hand-picked you for Ivey because he believes in you. He knew that this experience would profoundly shape many lives--especially yours.
Borbe Bunch said…
Thank you for sharing your heart. I mimic many of your same thoughts...the way we love our little ones entrusted to us IS indeed unique and special, the feeding tubes, the meds., the doctor appts, the suctioning.....the list is endless with the special ways we love our little ones.
I do believe the Ivey DOES know how much her mommy loves her. I can sense it in the way you write about her. You cherish her and consider her a blessing and a gift.
The scrapbooking is hard for me too, I have done nothing for Ezzy's and Ezra is two....actually I am now finding it hard to write in my youngest son's babybook, cause of how fast his lines of "milestones" are filling up and yet Ezzy's will never fill is a day to day thing, trusting in God to give us the grace to carry on and love our babies...
Thank you again for sharing...
Lovely, Gwen. I hope you are able, for that one day, to soak in every single second. And I believe Ivey would tell you that she feels very loved. Every time you suction her and you make it easier for her to breathe. Every time she's hurting and scared and you are the one softly whispering soothing words to help her through. Every time she hears you hooking every thing up signaling you're about to take her out into the fresh air in the stroller. Every time you do those things, I'm convinced she feels how much you care for her. My MIL works at a center for severly disabled and terminally ill children and you would be shocked at how seldom very many of their parents even visit. It's so sad. Ivey has MUCH to celebrate this birthday - and I believe you are raising her to know that. What better gift could you give her?
Julia said…
I just can't seem to stop blathering on about the way God has just been reaching out to me through others lately. I've made a choice recently to try and find my way back to Him and get back on the path He set me on back in 1999. I've wandered so far and have started to feel so lost in the wilderness. I can relate, in my own way, to your story. My oldest son has Duchenne Muscular Dystrophy. It's the only kind of MD that leads to death. There are so many times that I feel more like his nurse than his mom. He can't dress himself, bathe himself, or even brush his teeth. He can still write and eat though, which is a blessing. Sometime sooner than I would like he will lose the ability to hold his arms up to do either of those things. I try so hard to just realize that the extra things I've got to do for him, are still me mothering him, and not being just his nurse. I do these things for him because I'm his mom and I love him. I do these things for him because God gave me a special child to take care of. God actually gave me four boys to take care of. My oldest has DMD, my youngest was born with a cleft lip and palate. My other two boys, are 'normal' for lack of a better term, even though they are a handful. I feel very outnumbered in my house. It's five to one. LOL! I found your blog by clicking on the random link in the CWO webring doo-hickey on my blog, and I'm so glad I did. I plan on coming back to visit and learn more about Ivey's story. May you always feel honored that God chose you to raise such a special person. We parents of special needs children should always endeavor to stick together. Even if the special needs of our children aren't the same, our need to identify with others who walk in our same basic shoes is the same. May God's blessings be upon you in immeasureable ways. Ta for now dahling!

Please visit my blog when you can.
erin said…
I love this post! What a wonderful mother you are! She is so blessed to have you and you are so blessed to have her!

One year old - may God bless the years to come, sweet girls!!
Look at the beautiful, heartfelt comments! I so loved reading this, your heart just poured out in it. Sarah had told me Ivey's bday was coming up - I hope you celebrate so loud the neighbors consider calling in a complaint! She is someone to be celebrated, brave, brave girl who triumphed through her first year. When we have Addison's shindig we plan to party til the cows go home, or something along that line. All babies should be celebrated, and especially so if the first year was such as yours had. Hugs to you, and kiss her Happy Birthday from Addison's Grammy, who has a very special place in her heart for special baby girls! xoxoxo
Barbie said…
Gwen, your heart is so precious towards sweet little Ivey. Your love towards her is so evident in the daily care you give her. I'm sure you will have words filled with grace to answer her questions someday.

And Oh my tomorrow is the Big Day:) Happy Happy first Birthday sweet little Ivey!!!!!!
Why It's Mom said…
Happy Birthday, Precious Ivey. You are a blessing and a testimony of God's faithfulness.
I just wanted to stop by and tell Ivey HAPPY FIRST BIRTHDAY!!!!! One! Hugs to her and your entire family. xoxoxo
Aunt Boo said…
Happy Birthday Ivey!


Popular posts from this blog

The Price of Good Intentions

Last night I got my girl bathed and dressed for bed.  Our usual nightly routine.  Then we began our other routine in prep for the morning hustle to get out the door for a 6 am arrival time at Day Surgery.  The routine is necessary.  We discuss what will happen to her once her surgery begins.  Who will be with her.  Possible things she might feel and hear.  I explain that they may not know what she is requesting through her attempts to sign or her sounds as she comes out of anesthesia  and that she may not know where she is, but mom and dad will be close by, just waiting to get to her.  I reassure her that even though she will not know the people she is with during surgery, they care for her deeply and have her best interest at heart.  They will be as gentle as possible. And as always, this is the point where I cry.  I apologize to her for making decisions on her behalf, all based on the good intentions of doing what is best for her, permitting only what is deemed 'medically necess…

Does She Talk?

The thing about the term "nonverbal" - it isn't always accurate.  Technically, it's a terrible label.   I always get a little, how should I say this, perturbed when someone calls Ivey 'nonverbal'.  You see, this terminology leads others to assume Ivey can’t communicate.  Oh, she communicates.  Quite well I might add.   My question is it Ivey who is limited because she doesn't speak verbal sentences, or is it the rest of us who are limited because we only pay attention to words spoken verbally?  And, nonverbal always makes me think more along the lines of mute, but if you have hung out with Ivey for any short period of time, she is anything but mute.  Remember there was a time when I could apply the humivent on her trach as an on/off switch.  This came in handy in church.  Well, that was until she figured out how to use her finger to cover the hole... years since  decannulation it's been game on.  Literally.  

The nonverbal box tends to underestimate h…