I am feeling so overwhelmed. I am a bit of an emotional wreck - hormones plus so many unknowns for Ellie do not combine to make me a rational person right now!

My room is a disaster area as I pack like a madwoman.

I think I am grieving the loss of normal - again - today. Recently, R & I wrote our "wishes" for Ellie's birth out. I am working on getting it all typed out & printed for our care team. It's not a typical birth plan, by any means. We had to make some decisions on life intervention procedures and quality of life procedures. We determined what order and for how long family members could spend with Ellie should we be told she is terminal. This was not an easy conversation - although we agreed on everything.

This isn't how parents typically "anticipate" the birth of their child.

Frankly, it's not how I've always dreamed my labor and delivery would go. My pregnancies have always been stressful and I have always felt somewhat out of control as far as my birth plan. I've had to let go of what I imagined to be the perfect birth plan in an effort to better care for my child. I've had to deliver both of my babies far away from home to be closer to pediatric medical care. There's always a team waiting immediately to evaluate my baby. Emails, texts, & phone calls that are made and should just be a joyful announcement, detailing size and gender, are somehow full of medical conditions and information. I have to make a conscious effort to inform all staff at labor & delivery & on the post-partum wing that I expect my baby to be treated with respect & to be celebrated - that we are embracing this life- even though there are limb differences or syndromes or medical conditions present. The team did a great job of celebrating Will at his birth & I am confident Ellie will receive the same respect, sensitivity, & celebration. But it's not normal to have to educate your nurses & doctors on a condition and express your desire that their birth be celebrated. I absolutely do not want to hear "I'm sorry" or receive pity looks from anyone who walks into our room - whether they have a medical degree or are taking out the trash. I expect, rather, "Congrats!" and "She's beautiful." We celebrate the births of our babies!

There is a grieving of a loss of normal - because none of this is normal. If you're the parent of a child with special needs or a disability, you probably understand this. You've read Emily Perl Kingsley's Welcome to Holland and you understand the tightrope balancing act that is parenting a child born with differences or special needs or medically fragile. Somehow you manage to celebrate and have great joy - while at the same time have a depth of pain and grieve the change in plans.

Sometimes I get tired of people telling me I'm so strong. I'm not. Somewhere, someone is praying & lifting us up - and that is why we "appear" strong. By the grace of God, He gets me out of bed daily and gives me reasons for laughter and joy. I'm not strong at all. I'm not patient. I can't describe what it did to me as I longed for Will to accomplish certain milestones on time and worked so hard with him. I'm not a patient person. And, I've read that for Ellie, many of the basic milestones will be severely delayed - due to being in casts and bars. Being a mom of children with disabilities and medical conditions does not make me special - as some have told me. Blessed? Absolutely. Thankful? Yes. But we aren't any more special than any other parents - we've simply chosen to embrace the life we've been given. As Corrie ten Boom says, this is our story and so we will tell it. Caring for my kids, fighting for them, working so hard to help them accomplish life, managing medical bills and maintaining a marriage? I do it because it is the story I've been given. I'm a mom in love with my kids... what other option is there? I'm not a "special" kind of mother. Just a mom. A very tired mom.

I think I am feeling extra overwhelmed as I read about the number of therapies and potential surgeries Ellie will need - for the duration of her life. This isn't something that is temporary. While I am confident both of my children will succeed... I also know that they will have life long challenges to overcome. While I know that their character will be the better for it, it doesn't minimize or negate the pain of watching your child struggle to accomplish a task or deal with a bully or simply get frustrated because they are tired of being stared at. Being Will's mom has been the most incredible honor of my life. I wouldn't trade it for the world. I feel the same way about Ellie. But knowing that I am about to triple the number of therapies (she will require double what Will did), and double the number of specialists, and add new care routines to our life and need to monitor and watch for certain critical issues that often become life- threatening for some of her conditions, and deal with more nosy questions and judgemental comments...
it makes me feel very overwhelmed and tired.

I suppose all mothers worry on the verge of having child number 2 that they won't be able to love enough or give enough attention to either child. We wonder how the easy routine we've become accustomed to will work with a newborn in the house. We wonder if we will get all the laundry done or ever have a clean house again or remember to pay attention to our husbands. I worry about all of this too. I'm a mom. But, I have additional worries - will I be able to keep everybody's therapy and doctor schedules straight? Will I remember to rub Will's aching legs and keep an eye out for sores from Ellie's casts on her legs? Will I be able to communicate to each of them as they need it how very much loved they are? Will I be able to advocate for both of them? How will I travel to medical appointments and board an airplane alone with two children and prosthetics, etc. Will I have time to research treatments and doctors? Will I have time to practice therapy skills and do joint massages? Will I have time to just enjoy them and play? Will I ever sleep? Will I ever shower? Will my husband and I be able to have a thriving marriage - in spite of the extra burdens we both bear? Will we always feel overwhelmed by medical bills that we can't seem to escape from - every single year? Will I always feel guilty for changing the "normal" for the grandparents and aunt and uncles? Will I rest ever? Will I have anything left in me at the end of each day? Will my friends forgive me for being such a taker lately and forgetting important things in their lives (and wondering when I will come up for air to start remembering?) Will I ever relax - and not just from sheer exhaustion?

There is a loss of normal in what I have dreamed of for being a mommy. I long to simply nurse my kids. For Will, nursing involved a contraption device hooked up to me, a 30-45 minutes "nursing" session at each feeding, followed immediately by pumping for about 15 minutes, followed immediately by giving him a bottle of pumped milk for about 45 minutes. I was exhausted all the time. I was so determined to nurse him but I'm not sure it was always the best decision as this whole process really wore me out... and therefore I wasn't always the mom I could have been.
Unlike her big brother, Ellie appears to not have mouth issues. (Remember when she suckled on the ultrasound & licked my belly?!?!) However, I keep reading that it is extremely difficult to nurse a baby who is in casts and later in orthotics with a bar between her legs. I long for a "normal" nursing experience but I feel like that gets taken away from me every time.

I love bathing my babies. I will only be able to bathe Ellie once a week. This seems so silly but it feels like another change in normal.

I fear being judged. Since it seems that the general public has never seen a child missing hands and feet, I'm pretty used to stares and questions and comments regarding Will. I have a series of answers I give that usually satisfies curisosity while also maintaining respect and sensitivity towards Will. I know I shouldn't worry about what others think but I'm about to embark on a life of going out in public with a child with hand differences plus prosthetic legs and a baby with tendon issues in casts and orthotics with bars between her feet. I'm not naive enough to think that combo won't get me double the stares and questions. Will I be able to laugh at my "tales from the aisles" or will they be painful? Will people think I have somehow hurt my baby, causing her to need casts? Will they think I didn't follow the pregnancy rules and somehow caused my children's conditions? Will they accuse me of drugs or alcohol or eating bad cheese? Perhaps those accusations shouldn't hurt - but they do. Implied in the accusation is that I am a bad mother who does not love my children enough to take care of them properly. And in trying to be sensitive and respectful to my children, I often end up giving vague answers. For instance, I was counseled by a child psychologist not to use terms that label Will's syndrome as "spontaneous" or "sporadic" because that doesn't sound very affirming of him. Always, I am far more concerned with how Will hears me explain his differences than I am with the person I am responding to. Telling a random grocery store person that "lightning struck twice" doesn't really convey respect for my kiddos. So, that adds another challenging layer as I try to decipher how best to answer people, dispel curiosity, educate them, maintain respect for my children, be mindful of what Will is hearing and keeping it age appropriate, and grocery shop or board an airplane or catch a kid coming down the slide all at the same time. I'm doing pretty good (I think) in handling questions for my kiddo with hand & feet differences. In fact, Will & I are starting to get some good laughs together. But, how in the world will I answer questions about Ellie - when we don't even have a diagnosis or understanding of what her medical conditions are?
And, for the record, I really like just being with my kids in public and do not care to give a genetic counseling session to every person that feels they are entitled to information on my kids. (Remember the lady once that told me I could tell her all about Will because she was an "audiologist?" It took everything in me to keep a straight face as I explained - in the grocery store aisle, no less- that his ears are fine - just his hands & feet were affected. Are you kidding me?)

I embrace my children exactly as they are. I wouldn't trade anything to have hands and feet for Will. I love his hand & foot prints. I love watching him run or walk or feed himself. I adore him. I adore Ellie already too - just as she is. I want to give each of them independence which is why we use prosthetics and see specialists and seek treatments. That doesn't change how much I adore them. I really struggled with Will's first set of prosthetics. I hated covering up his sweet, soft, hairy legs. He barely wore them at first as I often cried just putting them on. I just hated to cover him up, even though I knew it would offer him independence. I had to sacrifice my desire to touch his soft skin in order to help him more. Right now, we are trying to make a decision about a hand surgery for Will. I dread the idea of altering his body but also want to offer him independence. (And none of our doctors agree on what is best for him.) I am already dreading casts for Ellie. She will likely be casted when she is less than a week old. I know it is best for her and I know I have plans to decorate her casts. But, I HATE the idea of covering up her legs and feet with plaster. I want to snuggle her and bathe her. I really dread covering up her sweet, soft skin. And, like the prosthetics for Will, I dread knowing that people will notice her casts first - rather than her beautiful face or flowing hair. I just wish others could look past their differences to see the precious child inside.

Finally, in my tirade against the loss of normal, I am struggling with guilt. I so desperately want Ellie to live. I know that we can't know if she can live or not until we have some tests done at birth. I also know that even if they say she can live, many babies die with her condition due to complications. If she can live, I struggle with feeling like I am not entitled to struggle or worry about her health issues. I have struggled with the same problem with Will. People have actually said to me that "at least we know he (she) can live. We can deal with anything as long as they are alive."
For some reason they always say "we."
I'd like to know where they are day in and day out when I deal with comments at the grocery store or at the park, or when I am using nap time to research and schedule doctor's appointments, or when I am doing therapy or paying medical bills or fighting with the insurance company or losing sleep at night due to anxiety or spending days away from my husband getting medical care in Dallas.
Yes, I can deal with anything - by the grace of God - though I really hope He doesn't take me that far. I would kind of like some stability for awhile! Yes, I want my child alive. Health conditions for life seem kind of trivial compared to death.
But, comments like this make me feel like I'm not supposed to struggle with the reality of raising a child with a disability and a child who is medically fragile. I feel like I should only be grateful for their lives- so any other challenges don't count.
I don't hold anyone else to this standard. My friends who have "normal" kids, I give the freedom to complain about sleep deprivation or discipline problems. I don't even think twice about it. They are somehow entitled, I suppose, since there was never a chance that their child might not survive. But, in my mind, I feel like I lost that "privilege" to complain or struggle with anything because I should simply be grateful for my child's life. I shouldn't consider anything we deal with a difficulty - "it could be so much worse."
And that makes me feel guilty - because there are days where I just don't think I can do it anymore. There are days when I am overwhelmed or really sad because someone has been cruel to my child. And I feel so guilty - because I shouldn't struggle with their health and physical challenges- I should simply be grateful for their lives, right? At the same time, I am entering a new phase with Will in which we have to allow him to express frustration or anger or grief when he is picked on by someone or stared at. I wouldn't dare tell him that he is not entitled to those feelings simply because he should be thankful to be alive. It's healthy for him to express his feelings. And normal.
Yet, I deny myself that right because I feel guilty.

It's the loss of normal again - & what in the world is normal about our situation? How do I navigate this world when the books don't address it and none of my friends are living in it? In fact, sometimes I feel so lonely. I am sitting on my bed and I can't think of a single person who can completely relate to me in being the mom of a child who is a quad congenital amputee and one who has unknown medical conditions making her medically fragile along with a joint issue causing a disability. I know of people who have adopted children with special needs- and sometimes more than one child with special needs or disabilities. Even though we have some similar issues- we can't completely relate to one another as they are often dealing with challenges brought on by adopting an older child or one from another culture while I am dealing with the unknowns & medical testing phase of newborns. While some of these families are the closest I can get to a mom who understands my world, there are still some significant differences... and none of them live nearby so I can't just stop by for a much needed laugh or cry.
My mom and mother in law get it, mostly. But even they can't fully relate to me as they are grandmothers now. They've had their children and raised them (us.) And they have each other to relate to in the experience of being Will's & Ellie's grandmothers.
Me? I feel very alone. And this is all I know of mothering.

And I feel fearful. I almost can't walk in Ellie's room while I am packing because I am so terrified of not bringing her home.
I don't know how to answer Will's questions about his sister. So much is unknown.
I don't know how to respond to people who ask me questions that I just don't have answers to. I don't know how to respond to people that believe I shouldn't feel overwhelmed or exhausted or even grieve the loss of normal as long as my children can live.
I am tired of being told to just "trust God or expect Him to heal." I am doing my best to trust Him but from what I can tell from scriptures- He has not promised any of us the lives of our children. I am trusting Him with Ellie in that I get up and out of bed every day. I go through life and I find joy daily. I am trusting Him to carry me - regardless of what happens with Ellie. And I am trusting Him that He loves her, He is creating her, & He will provide for her - even if I can't ever understand His methods. I am trusting God. I just don't feel comfortable in claiming that I "expect" Him to behave a certain way - according to my plan. If anything, that is what I have learned it is to trust God - not to trust Him to behave according to my desires, but to maintain a relationship with him... to keep walking... even when I don't get relief or understand the circumstances of my life.

Sometimes, I don't know how to pray for Ellie. Because I so adore Will and I know the joy outweighs the pain, I don't feel comfortable asking that she have no physical differences. I'm okay with limb differences and even joint issues (though it overwhelms me to enter a new world of doctors/treatments/therapies.) I ask for her life and for her health but as far as a physical disability - it feels weird to me not to accept her just as she is... like I do Will. But, does that make me a crazy woman? I don't want to pray that she have extra challenges in this world... I just want to be accepting of her body & however it is formed. Maybe this is why so many of my prayers for her just involve tears and groans. It's better just to let God hear my heart & let the Spirit intercede.

I feel alone and scared and while I long to hold Ellie & get to know her, I really just want to stay pregnant forever so I can always have her close to me. I'll take the unknowns and the braxton-hicks if it means getting to keep her with me always.

I have no idea how to manage two children with some of the challenges coming up. How will I find time for each of them? How will I be able to give to both of them and meet their needs?

I need to go to bed.

I am not a night person. (Or a morning person, for that matter. I'm more of a "day" person - 9am-8pm.) For some reason, however, I have not been able to go to bed prior to midnight since all of this began with Ellie in early April. Maybe that is also why I'm tired!

Sorry, thanks for letting me vent and process my irrational, hormonal, scared thoughts.

7 thoughts:

Julia said...

There are no words. Thanks for sharing. Holding you up before the only one who can understand and ease your aching heart.

Laura said...

I love you so much and am praying, praying, praying!! Wanting so badly to reach through this computer and give you a huge hug. Glad I get to do that in person in two days.

Cyndi said...

Sweetheart, you are in my prayers each day. I know God will supply all your needs in Christ Jesus!

The Stellar Ellers said...

Hi Katie. You don't know me...R and I grew up in youth group together. But I just wanted you to know that I understand how you are feeling. Our third child, Jacob, was in casts for a few months, then had surgery to loosen some tendons, and then wore orthotics with the bar in between until he was 3 years old. I am praying for you as you deal with all the emotions that taking care of a special needs child involves. Blessings as you prepare for the birth of sweet Ellie!!!
Rebecca E.

The Smiths said...

Katie, your support team here in Midland is praying for you! We love you and your family so much. We trust that the Lord is overall all that you are experiencing and will carry you through the next few weeks. All that you shared is completely understandable. I am sorry your heart aches and wish I could heal it for you. But that's the Lord's job. I'm continually praying (mostly from 4-5am!) for God's peace beyond comprehension to wash over you and Reagan and Will. I love you, Christin.

Kara said...
This comment has been removed by the author.
Becky said...

Ray and I are praying for all of you (it doesn't matter that I'm sure you don't remember who we are at this point, but we love you)...I really don't have any words to relieve any of your pain or anxiety, but I just wanted to let you know that I read your blog daily, and love all of your family.
I pray for an easy delivery, and I pray for a miracle for Ellie!!! God bless you all!

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