13 September 2010

Finding Normal

It's hard to know what normal is right now. On the one hand, I'm incredibly excited to meet the little guy we've been anticipating since late January. I want to see his face, kiss his cheeks, and wiggle the little toes that have so frequently found my ribs. I want to touch him and hold him. I want to rock him to sleep and be the one to comfort him when he wakes up in the middle of the night.

Ewan's room as of Sunday morning -- we've gotten a lot more done since then!!

This weekend was a lot about making a push to get more things ready. I had my last baby shower and my Dad came down to paint his room. James made a homemade diaper sprayer and hooked it up to our toilet. Auntie Kaari did a lot: put together the stroller, helped rearrange the room, washed clothes and blankets, and was my shopping buddy for the last few things we needed to help make it feel complete. I ordered the cloth diapers we had decided on, I sat and watched him move through my growing belly.

But amidst all these normal baby preparations is the poignant awareness of what waits for us: a dark and looming unknown about Ewan's heart -- how bad it is, how long will we be in the hospital, and the question of whether or not we will even get to bring him home. The last cardiologist we saw suspects Pulmonary Atresia in addition to the Tetralogy of Fallot, which if it is the case, only complicates things. Ewan's pulmonary artery is just too small to make a positive diagnosis one way or the other. Pulmonary Atresia makes it all dicier, and scarier. We know the medical community tends to present the worst-case scenario, but given the circumstances, we know it could be true, and we know better than to presume upon the better news.

And so I find myself going back and forth, making these standard preparations for having a baby: readying the nursery, picking out colors, washing clothes, setting his things out. And then there are also the things that are hard to get ready for: seeing my baby hooked up to tubes, wires, and machines. Waiting and wondering as they wheel him off for his first surgery. Making sure that in my hospital bag, I'm also packing things that will prepare me for being away from home for a few additional days. When I went shopping today, I made sure I bought a dedicated notebook where we can record doctor's notes and write down our questions, and a bottle in which we could put some holy water so he can be baptized before going off to surgery.

It's hard to know what normal is, or even if such a place exists: I don't want to lose the joy in preparing and anticipating this little someone we've loved and have been waiting for -- but these preparations are, for me, a double-edged sword right now. I know these preparations are more for me than for him. They are an exercise in hope, an exercise in feeling as normal as possible as much as possible before our experience of pregnancy and birth becomes so markedly and dramatically different from that of most people we know. It's my way of saying I don't know what will happen, but my son is alive now and I am going to honor that.

The other side of this is that it is precisely these preparations that are throwing into sharp relief for me just how not normal our situation is. As we sat through baby baptisms at church yesterday, I wept. It was just one more thing on the growing list of things that we wouldn't get to do like normal people. I broke down last night as I sat and folded his clothes. Holding them close to my face and then my chest, I wondered if I would ever get to dress him in them. I couldn't stop sobbing. I looked around the nursery we had readied and wondered if baby Ewan would ever be using it. James even said he's not sure he'd want to stay in this apartment if what we don't want to happen, happened -- Ewan is the whole reason we moved into the bigger space.

The closer we get, the more difficult it is getting emotionally. While his birth is not immediately imminent, it is close enough that the difficult reality in which we are about to be immersed is so very close, and so very much out of our hands. Nobody can tell us how this will turn out, and no one can provide the kind of reassurance that would put us at ease. We are hopeful about the outcome, but cannot presume that we won't have the kind of story no one wants to have.

So we wait and we hope, we prepare and we pray -- hoping we can bring him home and love him like we want to.

22 comments:

tiachristina said...

Praying for you, James and Ewan. I can't imaging the roller coaster that you are on, but I know that your heart and baby's heart are in the Father's hands. May you feel His embrace today.

The Gyrovague said...

We are praying your your strength, James and his strength and that baby Ewan is just being a little turkey and that when he gets out he will say "what's all the fuss?"

Healing and miracles, the mark of Christ in his Christ followers.

We look for both for all 3 of you.

Peace be with you, peace be in you and may peace abound through you.

Tara said...

It's good that you are going through these emotions...I know it doesn't feel like it right now. You will find your new normal, but know that it does take time to grieve the "normal" you won't have too. That was the hardest part for me by far. I didn't really expect that I would grieve over such a thing...and didn't recognize it as that until later.

Our Liam also has Pulmonary Atresia with his TOF, so if that is what Ewan has, know that we've been there before, and Liam is thriving now =) Praying for peace and joy for you over the next few weeks as you prepare for Ewan's arrival.

Hope's Blog said...

You remain in my thoughts and prayers as you continue through your journey. Enjoy your pregnancy and all of the showers, precious moments, and feelings that you will be going through. Know that God will be there for your family.

Joye said...

Praying for you in the last few days! Pulmonary atresia is scary ... difficult to diagnose, and difficult to correct. However, it CAN be done. Take it from your commenter above about her little guy, and Ethan :)

Sometimes I go back and forth about whether it's better to be diagnosed prenatally or to find out at birth. I, too, would have had a difficult time towards the end of my pregnancy, expecting something so scary. Praying for peace for you, and that you can enjoy these last precious weeks of feeling new life inside of you. I miss those days!!

Please let me know if there's anything I can do from afar! Sending love and prayers from NC...

Danielle said...

It is so important for us heart moms to do all these "normal" things, even when we don't know what normal is...it's an acknowledgement that our precious little one is coming and that we have HOPE and love for them.

I meant to leave this comment on your "advice" blog the other day: if your doctors let you (and they should), make sure you have a chance to hold and cuddle Ewan right after he is born. I didn't with my Aaron and that is the one thing that I regret and wish that I could go back in time and change every single day.

Praying for strength and peace for you and your family over the next couple weeks as you wait to meet your sweet little Ewan.

Katie said...

Hang in there!!! This is the most difficult time by far, the waiting is excruciating. Try not to borrow trouble and just focus on right now. I have kept this quote on a little chalkboard on our wall since coming home with Maddie, "Don't let tomorrow take away from today". It's from the "Last Lecture" and really helps me regain my focus.

Maddie has the heart defects: Pulmonary Atresia, Ebstein's Anomaly, Hypoplastic Right Heart, ASD, PDA...she is thriving as well, and as a single ventricle baby. It's amazing what doctor's can do. Keep the faith and hold steady to His Promises!

Love, Katie

ANewKindOfPerfect said...

I think it's great that you are able to verbalize and seperate all the emotions. They are all so overwhelming! I think it's great that you know ahead of time that Ewan has heart problems, so that he can have everyone ready and waiting for his arrival. I will admit though that I am glad I didn't know about my Emily's issues before birth. I cannot imagine how strong you are to be going through this all! I think I would have just dissolved into a puddle of tears and waited anxiously.

I pray that Ewan's nursery will be soon filled with HIM. I pray for healing!

Sarah said...

So much love and so many prayers from me and mine. I wish I could give you a real hug but a cyber one will have to do.

Nikki said...

What you are going through right now-all the emotions-have to be so draining on you. I wish I knew some magic thing to say to make you feel better. I've never had my heart kids diagnosed until after birth so I have no idea what waiting is like.

I have met some awesome kids who have TOF and are very active toddlers. I pray that Ewan is the same :)

Anonymous said...

Remember that many heart parents suffer from PTSD (I really believe that)

We were diagnosed very very early in our pregnancy. As the months flew by, we were preparing for both her birth and a possible funeral as well. I made the choice not to do anything with her room for that reason (and to this day regret that decision - thanks to my Mom for taking charge while we were still in the hospital and transforming our guest room into a fabulous nursery) Please know that what you are experiencing is completely NORMAL for this situation. No, there are no guarantees and I won't lie to you and tell you this journey will "be a breeze and you will be home in no time" this is a LIFEtime of waiting, wondering, watching.

Remember that miracles happen every single day. Ewan is a miracle. Believe in that. Hold on to that when your faith is faltering and you feel you can not go on. The journey is so worth the ride.

Shannon Egan

Anonymous said...

hi mama (=
I was reading and feeling the pain of experiencing motherhood so differently then we ever expected. I guess I am better now, but it isnt easy accepting your own new normal which is anything but typical, and feeling left out because of it. Ive thought at times how helpful it would have been to know about Emily before she was born. You already have a huge support system, probably larger then I have even now after 7 years. You have been able to contact other families to learn from and seek comfort from. We still have found no one like Emily. Either way our dreams and heart are crushed, but you have had many blessings despite this unchosen road. I do pray that knowing these last few months has given you both strength for whatever God chooses for Ewan's life. He will continue to uphold you.
just know that there are others of us who may not have children with heart concerns (though I do think the 2 biggest concerns a child can have are brain adn heart defects - we kind of really need those to work correctly!), but we have still walked this uncertain path of faith, love and heartache too. We eagerly await his pictrorial debute! (=
love, Evan, Carrie, Emily and Tucker

christianne said...

This post broke my heart over and over again to read it. That these preparations right now are more for you than for him, that your son is alive now and you're going to honor that, that you sat and sobbed as you folded his tiny clothes, that no one knows how this will go or provide any reassurance at the moment.

Everything is so out of your hands. It must be one of the most helpless place to be in the world.

And yet you're doing things that allow you to be un-helpless. I see hope in that. But I know it must be such a roller coaster and not at all easy or full of hope much of the time.

God, please bless and nurture baby Ewan and his broken heart. Allow your life and the lifeblood he need to course through his heart in full and needed measure. Amen.

KLaw said...

No amount of planning emotionally can prepare you for what is to come, be it positive or something less than that. Relish in the time you have with him now, inside the womb, and stay positive. He can feel everything you feel. You have tons of prayres going up for you and baby Ewan. Hugs pretty lady.

Veronica said...

Just so amazing to me that someone else out in this world feels so much like I do... I could have written almost every bit of that.. we will be having our baby next week, and he has HRHS. The two things God has me working on is trusting, and being thankful. Over and over He has pointed me to focus on those two and let everything else be up to Him. I'm praying for your family, and sending knowing hugs. We're going to make it through this.

In this wonderful life... said...

you are doing great lady! hang in there. Everything you are doing is normal to you..for now. That's what count. Just focus on the current day!

xoxo

Shay said...

I am hoping and praying with you as you prepare and pray -- hoping you can bring him home and love him like you want to. (I thought that was So beautiful that I had to copy and reword it and pray it for you.) I loved reading your post as you shared your heart. I can't fathom what you are going through. know I am praying for you and for James and for Ewan. Our God is big and has you all lovingly wrapped in His arms. praying for you and I love you!

Lisa said...

praying, praying, praying...

Wendy, Rhonda and Jordan said...

I know exactly the way your feeling...I've been following your blog for several weeks now. We will be having our babies around the same time. I went to the doctor yesterday and they will induce on Oct 4th. My little boy has Hypoplastic Left Heart Syndrom. I am so excited about meeting my little guy but its also the scariest time of my life. I can remember getting his nursery ready a couple of weeks ago and thinking the same thoughts...what if he never gets to come home to his room. But I've had to keep faith that God has a purpose for him and I have to be ready for any challenges. Its not easy and some days are better than others. So your not alone...check out my blog http://jordankleckley.blogspot.com
God is with both of us and he is holding our little boys hands through all the challenges we face! Many prayers with you and your family!

Stefenie said...

The anticipation for what you are about to go through is probably the worst feeling in the world to have. While we didn't know about Logan's diagnosis until weeks after his birth I can tell you from my own anticipation of events like surgeries, procedures and check ups it is excruciatingly painful. We do put ourselves through hell with the worrying and it is to be expected. It is normal to feel worried, anxious, stressed, upset and even angry. This is your child. Allow yourself to process and vent those feelings out. It helps.

I can tell you this, there is HOPE. Don't give up on that even with the possible new diagnosis thrown in there. There is so much hope and possibility for these kiddos. I know it is hard not knowing how things are going to turn out but have faith. Know that our Heavenly Father has heard your cries for mercy and that He is holing all of you now.

deb said...

holding you today...

Angie said...

Sending big prayers your way... hoping for only the best for you all!