Tuesday, April 28, 2009

Ergh.

For those of you who have gone through losing a baby, or raising a kid with special/high needs, or, for that matter, raising a typical kid, have you ever found yourself just putting along, doing great, doing what you need to do to get your kid to school/therapy/doctor/surgery/playdate, secretly just thrilled with yourself for dealing with life so well? It almost gets to the point where you're patting yourself on the back, saying "look how well adjusted I am! I've taken all these lemons and I've made the best darn lemonade I've ever tasted!" There's a goal to work towards, and you're kicking a** and taking names, right?

Well, what happens when you meet that goal?

I found out first hand what happens to me. Since the new year, I've been thinking I was feeling better about Eli, feeling better about Seth and all of his issues. We were heading toward a surgery date and we had met every goal in an amazing way. Eli's birthday came, and I handled it great! We had fun, we thought about him, it was easy peasy. No crying. No freaking out. Seth's surgery came. We survived it. It sucked, blood came out of his ears and mouth and nose, but he got through it and he feels great. His surgery is over. Activation is Monday. We move on from the critical making the implants happen stage to the intensive therapy and mapping maintenance phase. While still critically important, there is not the same sense of urgency there was with getting the actual surgery done. We raised the money we needed and are blessed to have the money to cover Seth's surgery, if the hospital ever sends the freaking bill, which is another story.

All my goals have been met. Seth is poised to experience hearing in less than a week. I should be ebullient.

I am more depressed than I think I have been since Eli died.

It was like I was on autopilot for all of this time...do what we need to do. Seth survived being born, unlike Eli, but then he was very sick. In critical condition. My husband is, how do you say it...not good with stress. Neither are some others in my family. From the moment Seth was taken to the NICU, I found myself spinning everything, trying to find the silver lining. Looking back now, it shocks me to see how sick Seth actually was. He was in persistent pulmonary hypertension. He couldn't breathe on his own. His metabolic levels were all so out of whack they thought his liver was not functioning. He was sick. I never once let myself  own that.

Then, he got better. Except, of course, he was deaf. That one threw everyone for a loop, and so I spun that, too. I threw everything I had into getting his everything sooner, faster, better than the norm. If the standard was aids by 2 months of age, I wanted them at one month. If the standard was speech therapy beginning at 6 months, I wanted it at three. I was advocating for Seth the way I never was able to for Eli, and it worked. He was aided at 6 weeks. Therapy began at 3 months. He thrived. He received implants at 8 months. He was diagnosed with hypotonia (low muscle tone) so we began therapy for that. I never stopped to think about any of it...just did what I needed to do to get Seth what he needed. In many cases, I had to push against the system. Sometimes just being nice didn't work, and I had to be a bitch.

It is only now, when we are coming out of the surgery stage and I am able to finally take a deep breath, that I realize I am falling apart. My life, my marriage, and my house are in shambles because I have been eating, drinking, and sleeping Seth and Seth's care. I miss Eli. Now that I don't feel like I am in emergency mode with Seth, Eli's loss is hitting me harder than ever, and as I talk to my husband, I realize we are speaking two very different languages. Like many people, we are stressed. At the end of our rope financially. He works to jobs, I am with the kids all day every day. It's not ideal, and of course we take it out on one another. We have dealt with Eli's loss so differently from each other that sometimes when he talks I have to shake my head, and try to remember how he was before Eli died. That he wasn't always so angry, so bitter. I understand it...I have lived it too, but I am so sad and feel so defeated that he can't find the joy that was there in Eli, too.

To be honest, my faith, keeping very busy, and Ava and Jace are the only things that kept me alive after Eli's death. Even so, I was not in a good place. I was convinced that I had singlehandedly caused his death. The guilt I felt and truthfully still feel is overwhelming. Now that I am not burning the candle at both ends, trying to get Seth what he needed, that is all crashing back down around me and I am struggling. I love God. I have been faithful. He is my redeemer and I seek to glorify him in everything I do. But can't enough be enough? Isn't losing a baby and having one with high needs enough? Why does my marriage have to be falling apart at my feet as well, in spite of my best efforts to honor it? Why do we have to be within a hairs breadth of losing everything we have every month? I know I am whining. I know I am. But how much does He want from me? I thought I had given it all to Him already, and now I feel like I'm being torn down to nothing.

I want to believe that He'll build me back up stronger than ever, but it is at this lowest point that it is so easy to let Satan in. I know I am whining. I know that it would be easier to delete all of this and write another post thanking God for testing and strengthening me, but it's important to me that everyone know that I struggle too. Having faith does not make me perfect, and I still question and rail against God in times like these. I  know how blessed I am, but it is hard to feel it right now. I am under attack, in a very real and serious way, and I would really appreciate your prayers.

40 comments:

Girl Child said...

I am SOOO glad you wrote this (to me!) I have 3 kids and my husband is unemployed and not even attempting to look for a job because he wants to enjoy his time, but rarely helps and I know he will be back to work soon, busting his rump, so I try to let him be. BUT HELLO!!! help out with something! I am normally a pretty chipper and thankful person, but the past few days have REALLY hit me hard. I have been crying and yelling at the kids.. i never seem to knock out my ToDo list.. its so overwhelming.. and to boot.. my 10 year old thinks Im a nag! Like GREAT.. now I suck at being a mom too?? UGH!!.. but thanks for letting me know I'm not alone.. and just a little P.S. our families are probably super great and we will be oh so happy soon enough.. its just a temporary time so that we appreciate the good times when He gives them back! Sorry about Eli and that it's fresh in ur mind again.. that is definately the most painful thing anyone can endure.. and I am so sorry that you have to live ur life with ur baby.. loosing the guilt would do wonders for you tho! You don't control anything my dear, He does. he needed another angel.. plain and simple. (((hugs)))

Girl Child said...

.. i meant "so sorry you have to live ur life without ur baby" :(

Anonymous said...

Oh El, I have been there. I have really and truly been there. My marriage to my first husband did not survive a special needs child and some other monumental stresses that came our way because he turned to the bottle and ultimately another woman. I have lost EVERYTHING before-home, cars, pets, everything. Everything but the one who claims to be all I need...and He was. Years later I can look back and see His hand in everything, but at the time I wanted to curl up in a ball and hide. I wanted it to end. But when you have a little one (or little ones) who look to you for every need, you put one foot in front of the other and you go on. I am now blessed with another husband who loves Jesus and another little boy who calls me Mommy, and I still see His hands at work. We are still struggling financially, but my God is the same God now who upheld me in my darkest hours, and He will uphold you too. Sometimes after the shock wears off, we tend to look around and see what was always there (marital problems, etc) and we focus on them. Keep your eyes on Jesus and keep putting one foot in front of the other. Is your husband a believer? Men and women cope with stress and tragedy so differently, but your common ground is always Jesus. I will keep you in prayer and if you ever want to talk, email me again (this is Dylan's mom, the 13 year old with the CI who chatted with you about cued speech). BTW, we are set to go for another implant on the other side in just 2 months! I am praying that Seth will love to hear as much as Dylan has with his implant!

Praying,
Sherri
q2mydylan7@nc.rr.com

Mikki Black said...

I was already praying for you before I got to the end of your post! I am sorry to hear of your many troubles, and although they are many, they are not too many to take to God.

He can help you meet these needs just as you struggled to meet Seth's. He is your caring parent just as you are Seth's.

I'll pray, others will pray, you pray too!

May God bring you and yours peace and strength and healing.

Jen said...

I'm so very sorry. I'll be praying for you.....

Holly said...

I will be much in prayer for you. I can totally understand some of where you are coming from. I am the mommy of two preemies (the second a micropreemie). Hang in there.

Trish said...

Oh honey.. the thing about sorrow is that it's got to be dealt with sooner or later. Being the amazing mom that you are, you put off your own emotional needs to tend to the immediate physical and emoitional needs of your children. And now that you have time to take a breath, you're just feeling what was lurking about the whole time.

HUGE hugs to you..

as for your marriage.. I wish I had some answers. My marriage suffered so mich the last year. Things have been improving the last couple of months.. but it's been hard. I've tried to get him to go to therapy a half dozen times.. it never happens.

Just don't give up.. I'm praying for you..

--Trish.

Mommy Marta said...

I know I have never met you and I cannot even pretend to understand the pain you must feel everyday but God is with you and just ask him to give you peace. He is always faithful and I know from reading your blog you are faithful too. Maybe you and John should talk to your pastor. My husband and I went through a really rough patch...he lost his job (10 days before our wedding) and I was working to support both of us and then found out we were expecting a wonderful surprise a month later. It was really hard and I even dreaded getting the mail because of all the bills which were piling up and I couldn't pay. I just kept praying and talking things through with Russ and we just had to remember to talk and hear each other.
I am sorry I have gone on and on and on....I will keep you and John in my prayers.

Analiza said...

El, I'm going to share something with you so personal. Your post made me cry today, because yesterday, I became very depressed and suicidal. After a weekend of being on auto-mode, taking care of the needs of my family and home, I neglected my husband. Yesterday morning, I opened my email and I saw one from my husband asking for a divorce. He felt neglected, unappreciated, and unloved. I thought to myself how could this be? When all I have done is care for our family and our home, I've taken over Matthew's situation and like you been a great advocate. I gave everything and I too, live with the guilt of not knowing what happened during my pregnancy for my son to be born with Microtia. But now on top of everything else, my husband contemplated divorce???? I cried the entire day, overwhelmed by emotions, afraid of the future... and screamed and cried in a fetal position on my couch. My husband came home in the afternoon and after about an hour of sulking, I decided to go upstairs, I hugged him, kissed him, and I apologized.

It's funny how when we're in automode for our children we sometimes forget that our husbands need the same kind of understanding and validation. We sometimes are overwhelmed and get stuck in a rut - almost cursing the situation. I am guilty of it, I assumed my husband was okay, and if he wasn't okay I assumed he'd figure out how to fix it just like I did with my own "personal" problems. But I was wrong, our husbands just as our children need our love and protection just as much as we need them.

I walked your path yesterday (of course without that incredibly horrifying loss of a child) and I know how draining this situation can be. Please don't lose faith, please know you have many of us praying for you out here in blogland, and know that I am always here to vent to through email or even a phone call.

It's a new day but with a new path. I want to strengthen my relationship with my husband and so I'm learning his language of love (Read it! The 5 languages of love by Gary Chapman) and just to lift your spirits as it did mine in the wee hours of the night, read Dr. Laura's In praise of stay at home moms.

I'm here to lean on and to struggle with you, HE's here to hold you when you can no longer stand...

I'll be praying :D

Analiza

Shanda said...

Counseling is o.k. (Wise words to me from a friend...and now to you from a friend...)

After my husband had one of his horrible health cycles I experienced the same kind of thing as you are describing. You don't deal with it all in the moment. You are just doing what you need to do to live, survive, push through...long story short; I ended up going on an anti-depressant for a short period of time. The Dr. explained it so well to me: I had been in high gear; adrenaline mode for much too long. My body literally could no longer figure out how to shift gears back to a calmer "normal." I had always been somewhat "anti-drugs" so it was a stretch for me to try it; but it truly helped. I was able to breathe. I was able to allow my family members to shift out of high gear and breathe too. (Which, in itself, helped my marriage a tremendous amount.)

I also got on my knees and cried out to God to show me how to begin to build the bridge back to my marriage. Then I had to listen. He revealed a few things to me; I did them. It was baby steps back into our relationship. Just as you wrote of before; it was a "new normal" once again, but it has steadily grown stronger and stronger. DO NOT LOSE HOPE OR BELIEVE THE LIES SATAN IS ACTIVELY TRYING TO DECEIVE YOU WITH. He knows you are breaking through all of the darkness that has been. He doesn't want you to walk away.

I am praying for you girl and I love you!

HUGS!

Shanda

K Mommy said...

I admire you. So many (including myself) are so afraid to voice/share our trials and to admit when we are down. I am not a very profound person so I will just keep this short. I just wanted to let you know that I (and I know others) are praying for you and your family. You are an amazing woman. Remember, God wouldn't put on you more than you can handle.

Praying for you in Alabama!

Hall Family in MD said...

I will be praying for you. Please know that you are not alone. ((Hugs))

Danae Jones said...

Hi,
You don't know me but I've been following your blog for a while. I just wanted to let you know how much I appreciate your candid post. It is easy to hide away and say what we think we should, but having the guts to step out and tell it like it is. We Moms don't want to feel alone in the rough times! So thanks for your honest post, I was blessed by it.

Tranquility said...

Hang in there - you've been through so much and you can get through this too!
God will get you there!
I'll be praying for you and your family.

Michele said...

Thank you for sharing your story with us and allowing us to offer our prayers for you. I have not lost a child but I have a special needs child and my marriage has suffered so greatly.
God Bless.

Melani said...

Hi El, it is sad that everything is coming to a halt and you are feeling everything like you are. I will continue to pray for you and your family. I love God and I go to church when I can. I have recently been diagnosed with Chronic Fatigue Syndrome, and some days are better then others and some days I don't feel like even getting out of bed I am so tired! That being said, I know I am blessed for having my family, just as you are also blessed. I think you wrote that post so everyone knows your HUMAN and that you have feelings, I think they are all normal. You and your husband will find a balance, soon. SO much has happened in a short amount of time. Give yourself more time to heal ~ everything.

much Love,
Melani

Heidi in OK said...

Long-time reader, first time commenter here. This was as good of time as any to de-lurk and add to the number publically praying for you today. I pray that you will be comforted in knowing how many people are lifting up you and your family right now.

Daveda said...

Oh sweetie :( I can only imagine what you must be going through. But I do know that God will build you up stronger as you said, and He does not want anything from you except for you to believe Him and trust Him. I am praying that you will be strengthened in your inner man by the power of the Holy Spirit.That you would be rooted deeply and firmly in His love for you and that you would grasp what is the height and depth of that Love. That you would know through experience the Love of Christ and have a heart that truly believes that He is able to do above and beyond what we could ever ask, think or imagine. Please Read Ephesians 3:16-21

Emily said...

Wow. Thanks for being so transparent and honest. I'm really not sure what to say or how to respond, but I will be praying for you.

Anna said...

Thank you for being so honest with all of us. I totally understand, especially on the financial side of things. And the economic times surely don't make it easier on anyone. Also, it is so easy I've found to get "snappy" with my hubby at stressful moments and I ALWAYS regret it later. I am trying to breathe and not snap at him when life seems chaotic bc before too long all will be calm again but he might always remember the harsh words spoken. I am praying for you, your family, and your marriage!

Just'N Angel said...

Wow! Do you know that I have struggled so much with the "happy" talk on blogs. I keep comparing myself to the people who seem to have it all together and are handling things that are so hard and here I am with my little junk and I'm falling apart. I love God. I trust Him. I'm sad and I'm tired. I haven't lost a baby like you have - just a miscarriage - and I haven't had a child with a disability or all the other things I read about. I feel guilty feeling so sad. You, on the other hand, have so much reason to hurt. Cry. Scream. Be angry. It's okay. You CAN'T handle it all no matter how hard you try. I'm so sorry that you are hurting and that you ever had to deal with all these things. I WILL pray for you. I'm so sorry. Thank you for sharing your heart.

M J said...

I will DEFINITELY pray for you, El! My husband and I also went through a difficult season. When we first got married, we had NO idea how to handle money. Our area absolutely exploded in population and caused the property taxes to go through the roof and our house payment went up over $300 a month. We were both working, and I was working 2 jobs. (With 2 kids at home that I felt like I never saw) It was horrible and stressful, and my hubby and I took it out on each other frequently. We DID make it through though, and have a much stronger marriage for it.

Anonymous said...

Sharing your struggle takes nothing away from your faith in God. I feel saying things out lound, honestly, without spin, is what brings you closer to God. Letting him in to all of you, even the parts you think sound bad out loud, opens you up for his light to shine into those spaces. I will keep you and your wonderful family in my prayers.
Summer

Cristi said...

You have done everything you can physically do to help Seth while doing everything you can physically do to handle Eli. But seriously, the thing that Seth needs more than to hear is to see his mommy and daddy love one another. Work on your marriage, even if other things go on the back burner. Just as much as you sought God for Seth and in other situations in your life, lift up your man and your marriage up to Him. Seek and ye shall find!

Sonya said...

I will be praying for you and your husband. This has got to be very difficult for both of you. I am glad that you are being honest with the "blogging world" and admitting that there is an issue. Please get some sort of counseling so that the two of you can work through this together. TOGETHER, that is so important. You have to remember that he lost a child as well and he has a special needs child as well. This is not your burden to carry alone. I cannot imagine the feelings that you have about losing Eli and it just breaks my heart to hear you say you feel like it was your fault. I know that I would probably feel the same way in the situation but there is nothing that you could have done to change the situation. God is using Eli's death to do his work and you have to lean and trust in him. That is all you can do. I will be thinking about you and my prayers are with you.

Jill Elaine said...

I will pray for you! Don't give up on your marriage; start working on it like you've worked on everything else!
God can get you through this too.
Blessings,
Jill

Jenn said...

I've never experienced anything near the kind of stress that you have been facing. All I can say is that I am praying for you and that I'm very sorry you feel like this right now. Prayers to you and your family!

rabidbutterfly said...

Wow. To be so open...I can talk about a lot, but never about my marriage the way you just did. Please just know that there are lots and LOTS of people who keep you in their thoughts and prayers every day.
Who keep coming back to make sure your family is okay. We might not know you, personally, but we do love you. And we're thinking of you constantly.

Michele said...

I know exactly how you are feeling. We are going throught the exact same thing. It's one thing after another. I am trying to not question Gods will and that everything has a purpose, but it IS hard to wonder how much a person can take while others have it so so easy. I jsut want you to know that you are so not alone. If you need to yell, scream, cry or anything else, I am just an e-mail (or blog) away. I am in the process of trying to find someone to talk to about everything that has happened...I really feel that with everything that has happened, I could have a little bit of that "post tramatic stress sydrom"...I truly believe it. Losing a baby is hard enough, but having a child with so many problems and needs questions everything. A mommy is supposed to fix things and make things better, with what our kids are going through, we cant...and it's hard. Heck, we couldnt help our dying babies...so what are we supposed to do or feel? Please hang in there, you are doing an awesome job as a mommy and wife. (hugs)

Stephanie said...

Ellyn,

You are such a strong woman, whether you know it or not. You will persevere. I know you will.

I want to recommend a book to you, if you haven't read it already. It's called "The Love Dare". It's the book that the movie Fireproof is based on and it is saving marriages and families all over the world. Please, please, please take the time to pick up this book, read it and DO IT! Do the Love Dare. You can tell your husband you're doing it or like me, you can just do it and he will notice. I promise, he will notice. Please read my blog on my own Love Dare and let it be an inspiration to you.

www.fireproofingthebyerlys.blogspot.com

Hugs and prayers are coming your way.

Stephanie

Lindsey said...

El. I love you and am praying for you. Hang in there, sweetie.

"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand." - Isaiah 41:10

E @ Scottsville said...

Praying for you El. And I wish I had the courage to share my deepest hurts on my blog. There's so much going on in my life right now, that I want to share, yet I know too many IRL (in real life) people read and I don't feel comfortable with them knowing. Yet my Bloggy-friends, I want to share so they can pray and support. I'm glad you shared. Pray for me as well, if you will.

Thanks,

E

Brent, Missy, Aubrey, Eli, & Nathaniel Copes said...

El,
You have been an inspiration to many with your strong faith and the huge love for your children. You are human though and you have to have time to mourn. It is ok to be angry and hurt and show your emotion. I cannot imagine how hard it is to lose a child. I have 2 diabetics who have been through a lot and I have a constant fear of something happening to them. Just remember that God made you and he knew that all of this would happen. He is in control and you have to lean on Him in these hard times. Satan tries to attack us when we feel like everything is under control. Don't let him destroy your family and your marriage. We all need God's guiding hand to make our marriage work! I will be praying for all of you!

christy rose said...

El,

Oh how my heart breaks for you as I read your post today! I can not even come close to imagining what you are going through.

I really believe that letting it all out and not trying to pretend like your so tough is the start of a deeper healing though. You can not depend upon God for something that you are not admitting is a need in your life.

He is you strength! Lean on Him! He wants you to! He is not impressed with those of us who try so hard to make it work out for ourselves. He wants to carry us through all of our trials in life. He wants to be our Daddy! Let Him! He is the best!

I am sure after you wrote this, you immediately began to feel better, because letting out the steam in a boiling kettle is necessary if you don't want it to explode, but if you let it out consistently by leaning on Him, it won't seem to get as overwhelming as it may have felt this time.

I am praying for you to be strengthened by His grace and lead to His lap for a tender Daddy/daughter time.

God Bless you

Christy Rose

Belinda said...

Hi,

I just want to tell you that I understand.

We just went through a year of chemo with our 7 year old son. It was horribly hard, but we did it. God kept us up and gave us the grace and strength we needed. When we were done I fell apart. I could barely function. I realized I did what I needed to do, got it done (not on my own, I give all the glory to God) But I was on auto pilot. Then when given the chance to relax - the Lord spared our son, we were done treatment, we were home as a family...... it all hit so hard.

So, I will pray for you!

belindapennings@hotmail.com

Laura said...

El - this broke my heart to read last night. I am so sorry that in a time of great achievement for Seth, that you cannot just relax and enjoy due to the other stresses. I think it is very common to happen, esp since both you and John will have been changed by both Eli and Seth. My husband and I have not had to walk the extremely hard and heartbreaking road that you and John have, and yet we have difficulties - just from the everyday stresses of life with two small children and working parents.

The important thing is that you are realizing this and want to work to repair the damage - many people don't either see the problem until it is too late, or want to work to fix the problem. The fact that you do is great and hopeful for your future.

Hugs and love!
L

Robin said...

Praying for you guys and lifting you and your family up to him. It's so painful sometimes to be forced to surrender everything to him. Sometimes it feels like he keeps taking and taking...he is good no matter what though. His plans are good and he uses everything for his purpose when we surrender it. You know all that. Sometimes even scripture feels like what I call "bible darts" when we're hurt. We know what the bible says...sometimes it hurts to hear when things are too raw...but it's also our only hope. praying for you to feel the holy spirit in a way that gives you peace. :)

by: Allison said...

I will mail you a copy of the book The Love Dare if you are interested in reading it. I have two copies and would send it your way for FREE!! Praying for you!
Allison
kenty2@earthlink.net
www.jansens-journey.blogspot.com

Melanie said...

Oh El...it is so hard to see you struggle. You know you did not cause Eli's death. It was God's will for him. You know that, and although it is so easy to question why or blame yourself, you just can't. You have to accept God's plan for your life and trust that it will be glorious and true.

You handled Seth's sickness way better than I did with my daughter. The doctor's were saying it was my fault, and even though in my heart I knew it wasn't, those doctors eventually tore me down. I didn't want to touch my baby so they'd see that I was not doing anything wrong, and it would make them stop screwing around and heal my baby. Eventually they finally stopped their crusade and found the real reason, but I found myself on the floor of my closet in a ball, screaming out to God.
How different that would have been if I were as strong as you, and you have taught me just how to be that strong woman. Never again will I fall apart when my family needs me most. I will have the strength of God with me, and I have you to thank for that.

Marriage is tough. My husband and I struggle every week with something so pointless it seems, but at the end of the day, you know he loves you and that it will be okay. For if you are two true children of God, He will get you through it.

I will pray for your strength El. You already know it's in you. Your babies need you, all four of them, and so does your husband. And you need to stop blaming yourself for Eli, because it is untrue to God to think that you killed him, when really his purpose was to be an angel with God, to look over you, to protect you.

I'm praying for you. Just remember that you are strong, caring, faithful, loving and you will get through this.

Love and Prayer,

Melanie
(I am the one that emailed you about the spacing of children's ages.)

Momma Mango said...

Sorry for the late comment, I'm WAY behind in my blog reading lately.

Just wanted to let you know that one more person is praying!

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