It took everything in me to not first of all, bawl, and second, reach out and pick up the 8 week old baby boy I saw today at the Post Office. It hit me like a ton of bricks. I didn’t want that lady’s baby, I just longed for a minute for the world to stop so I could have my baby boy with me, doing errands…I wouldn’t have even seen that peaceful bundle had the rest of my day not been totally jacked…
You see, the last two days I’ve been acting like I’m in college, during finals week, the night before the big deadline. I started a non-profit organization called Bevy, Inc with some girlfriends. In a nutshell, it’s like Extreme Home Makeover on a super small scale and we do it for women in need and other non-profits that help women in need. WELL, I had non-profit status, just not my 501(c)(3) status yet. The IRS sent me a letter dated June 10th telling me additional information they wanted by August 2006, like additional Board of Director members, Conflict of Interest Policy regarding salary (we don’t have any money, so no one has a salary-minor detail they overlooked), etc. So, of course, June 10th is the day Noah was born, so, the paper was set aside. Then, on August 15th I got a notice saying that I had until November 15th to get all my paperwork in or they’d close the case. Yeah, because in August I was even thinking about anything other than lungs collapsing and diarrhea killing mice at the CDC. Anyway, all that to say that I waited until this week while Jason’s out of town on business and we’re trying to send out MRI’s to other places for second opinions, to get my act together. I headed over to FedEx to ship off the masterpiece, and, of course they don’t ship to P.O. boxes…you probably ALL knew that, but I most certainly didn’t. Well, I found this out after I had taken the time to print 4 copies for the Board members. I looked at the clock and called Ohio, where the office is, at 4:40pm their time. Of course, the guy who I need to speak to regarding an alternate mailing address is gone for the day…his “tour of duty” is over at 4:45pm (shhhh, don’t tell he skipped out early). Anyway, I decide to send a fax so that at least that copy is on his desk by November 15, my deadline, if I can’t get to the USPS Office in time. The fax takes 10 minutes to transmit. The FedEx guy tells me where there is a PO right by the hospital. I head straight there and they closed at 3pm. What’s up with that? So, I drove over to the PO by our house, thinking that it’s all meaningless…seriously, what the heck am I doing getting worked up about my IRS deadline when in reality, I don’t need anyone’s freaking permission to reach out to women in need…but, thankfully their overnight drop off time wasn’t until 5pm. All that to say, hopefully we’ll get our 501(c)(3) status, and, for the first time in 5 months, I looked longingly at another woman’s baby…don’t get me wrong, I don’t look at every other baby and feel sorry for myself. I honestly am so excited for that little one’s life and the joy their parents feel. I’m just like anybody else in that area. But today, all day, I just felt sad and grieved at the whole situation. The reality is is that no one knows anything. The little guy who has melted my heart started out with a rash, diarrhea, swollen lymph nodes and nystagmus. Today he is laying in a hospital bed in very critical condition on life support and I think that sucks.
I included these pictures because it’s a snapshot into the joy we all had becoming a bigger family. I know I can’t look back and make anything different. I would literally die for my kids, which brings up my current faith crisis…my reality isn’t lining up with my faith…I don’t want to “do” life without Noah in it. I just don’t want to. No one should have to. Jason is the best dad in the whole world! Emily loves being a big sister, even though her experience is skewed.
God made Noah. He called him out of the womb. I am honored to know him and humbled to be his mom. It just doesn’t change the nauseous feeling I have that I haven’t done enough for him. I really am desperate!
Anyway, I know I am a “fixer” and I just want to fix it! Why can’t I just fix it!?!?!
I really don’t know what to say except that I am praying for you and your family and that our God is sovereign. If this was happening to me I could only pray to have half as much courage and faith that you have. You are a loyal and humble servant to God and he will bless you. Keep your head up girl and know that there are so many thinking of you and loving you even though we have never met.
My heart hurts for you. Thank you for being vulnerable and including us in your daily journey through this extremely difficult challenge. It’s certainly within your rights to feel a longing and sadness–grief over the loss of a “normal” family life you expected to have. I remember the Rita Springer song:
I don’t understand your ways,
Oh, but I’ll give you my song,
Give you all of my praise.
You hold onto all my pain,
And with it you are pulling me closer,
Pulling me into Your ways.
Now around every corner
And up every mountain
I’m not looking for crowns
Or the water from fountains.
I’m desperately seeking,
That the sight of your face
Is all that I’ll need.
It’s gonna be worth it
Gonna be worth it
It’s Gonna be worth it all
I believe this!
You’re gonna be worth it
Gonna be worth it
Gonna be worth it all.
You have such a beautiful family! I hope all works out well with your nonprofit app.
Noah and your family have been in my prayers since I started reading your blog posts back in Sept. You have shown such incredible strength and love, and Noah has touched so many lives around the world.
I picked up the Nov. 13 issue of Time magazine very early this morning and when I got to the article on page 58 “When Cells Stop Working” I immediately thought of Noah. You can access this article on Time.com, then click on Science and Health and from there scroll down to “More Stories”. This mitochondrial disease may be something Noah’s docs have already ruled out, but I felt I had to let you know about the article. Noah and your family will continue to be in my prayers.
It is so totally okay to feel vulnerable and out of control. Because that is EXACTLY what we all are. We aren’t in control, God is and even though God does not cause sickness and pain He does work miracles through them. Noah is a miracle child. Whether he’s here tomorrow or ten years from now. God knew that no one else could love him the way that you do…He choose you for Noah. He’ll continue to be your strength.
Adrienne and Jason-
My heart cries out for you. I don’t truly know how bad you are hurting but as a parent, I understand. We continually pray for you all and Noah. As you know, the abortion ban didn’t pass here in South Dakota and I was furious. I thought to myself here are women who don’t care about there baby and it would probably go on to be healthy and live a wonderful life and they are just throwing them away! I thought of the women who want a baby and can’t have one and I thought of you and tears came down my face. Life isn’t fair that some can just throw their babies away and you can’t even hold yours. I don’t know what to say but I do know this. God loves you all and Noah. We don’t understand why this is happening but its in God’s hands and he has a plan for Noah. I wish there were more I could do for you but just know we are praying and crying along with you!!!
When I was posting yesterday, I had the strong urge to tell you to not forget in the middle of all this that it’s okay to not be so strong some times. Why I didn’t say it – I don’t know. Couldn’t figure out how to put it in there. But I wish I had because today I see why that urge and need was present.
I agree with karenkool – this is all within your rights to feel this way and like her, my heart is hurting for you as well. I wish there was something I could do for you all to make this all right (aside from the obvious: Pray!).
We’re all with you, through the good and the bad. Much love to you and your family.
tearfully…. Father, please be near Adrienne today – show her family your presence again… bring new mercy today we pray.
I have NO idea what to say, but I didn’t want to leave you out there hanging and lonely either. So, know that I’m thinking of you guys and lifting your pain up to Jesus.
Dear Adrienne and Jason,
I’ve been following your blog for a long time, but haven’t written in for several reasons, mostly because I didn’t know what to say. I’m compelled to write today because your posting elicited so much emotion. I don’t know how in the world you and Jason are holding things together but you are, and you’re doing an amazing job of it. I have so much respect for your love, strength and determination.
That said, I wanted to agree with a previous poster and to remind you that it’s ok to be weak, to doubt and to break down. You are doing so much for everyone around you and so much for Noah (how in the world you have the time or thought to start a non profit at the same time is beyond me) while at the same time suffering so greatly and you would not be human if you didn’t lose it sometimes.
I wish there was something I could do to help you fix things as I’m sure everyone who reads your post does. I wish I knew a doctor who could just figure it all out and reverse everything that has happened. From reading about all that you’re doing, I’m convinced that if anyone can find a solution, it’s you. You’re doing an incredible job of exploring every angle and not giving in. Keep it up, keep fighting and searching and then try to find peace knowing that you have done everything you could. You’ve created a beautiful and loving family and touched the lives of everyone who has ever read this blog – that will persist no matter what else happens. If there is ANYTHING we can do, please don’t hesitate to ask. Our thoughts are always with you.
Becky and Steve
You have every right to be sad, frustrated and vulnerable. God wants us to be totally dependent on him and you have shown that total dependence in your honesty. Thank you. My 21 year old son and his roommate are not only strong supporters of banning abortion, but they are campaigners on a secular campus where that stand is not always popular. I have also directed him to your website to read a little about umbilical cord blood stem cells. You will never know how many lives you have touched through the gift of opening up your lives with this blog. You, Jason, Em and Noah continue to be in my prayers.
A “friend” in Ohio
I stumbled across this blog when I wanted to see what Google came up with searching for simonavey. Simon is my grandson and some of your journey is similar to ours. Somehow, I think it is OK to crawl up in God’s lap, cry, pound on his chest or whatever we need. It’s the “Abba” father relationship (Romans 8. Half of the Psalms in the book of Psalms are laments.) God is good. Good enough to take whatever we dish out as long as we are honest. Everyday we hold Simon, thank God for one more day with him, sometimes cry a little and wonder about the future. We will add you and Noah to our prayer list. And as I’m sure you know, prayer is something we take quite seriously since this all began.
I love you somethin’ fierce. You, my friend, are doing everything that could possibly be done by a mom for her child. YOU cannot heal Noah…I know you really know that. I also know you feel 100% responsible for him and his future. But you’re not. That does seem to suck, but thank God we mere mortals are not in control. What do we know? Our brains just cannot wrap around His wisdom.
This is such an enormous burden…you are one of the few people I know who could handle it with increasing faith and obedience. You have taught me SO much.
Today I went to HillsongWomen, a weekly Women’s Movement meeting at Hillsong Church in Sydney, that is just amazing…a boost of encouragement in the middle of the week. Pastor Bobbie Houston has been teaching the past few weeks on Why Women are Strategic. Wow…so inspired. Anyway, today, Lucinda Dooley spoke, continuing in this thread…that strategic women have Selfless Faith (a phrase that is in one of Hillsong’s newest songs…I’m sure it’ll be on next year’s CD!!)
One of the points she made was that She does not say ‘What is in this for me?’ but ‘What can I pour out of me?’ And that to be able to pour out, you have to be thirsty, keep drinking Christ. That to be able to give out, you must have overflow.
I loved reading about your Bevy, Inc. What a great way to show women you care, and that God does too. It also shows that despite the challenges you and your family face daily, that you are still plugged into the Source. And with that, He is enough for us, and if we keep drinking…He’ll overflow to the others in our lives.
(The other points, for those who care: 2. She does not say ‘Who is noticing me?’ but ‘What am I noticing?’. 3. She does not say ‘What opportunity am I getting?’ but ‘What am I doing with my opportunity?’. 4. She does not say ‘What does this cost?’ but ‘What cost can I pay?’)
Ade, you wrote that your were questioning things…I think you are just right in the middle of living out beautiful selfless faith!
It does suck. A lot.
You’re not a horrible person for grieving the loss of your dreams of what life was ‘supposed’ to be with two healthy kids. It’s something I still struggle with. Not as often as I did before Nicky came home the first time, but still, from time to time.
Have you ever seen the short story entitled ‘Welcome to Holland’? It was written by a mom of a little boy with Down’s Syndrome, but it applies to any child with difficulties.
It DOES suck. I’m wishing that I could make this all go away. It must be so terrible. But I know you are in the hands of the ever-living God who loves you far more than me, some stranger, and I know He will never let you go, even in the valley of the shadow of death. Much love and prayers to you and yours, praying that God would work in a mighty way.
“Like a shepherd He will tend His flock, in His arm He will gather the lambs and carry them in His bosom;
He will gently lead the nursing ewes.Who has measured the waters in the hollow of His hand, and marked off the heavens by the span,and calculated the dust of the earth by the measure, and weighed the mountains in a balance and the hills in a pair of scales? Who has directed the Spirit of the LORD, or as His counselor has informed Him? With whom did He consult and who gave Him understanding? And who taught Him in the path of justice and taught Him knowledge and informed Him of the way of understanding? Behold, the nations are like a drop from a bucket, and are regarded as a speck of dust on the scales;Behold, He lifts up the islands like fine dust.” Is. 40:11-15
“What then shall we say to these things? If God is for us, who can be against us?” Romans 8:31
I can’t imagine the unbearable pain you are in and will continue to ask God to hold you in his comforting arms and wrap you in a warm blanket of His love and protection. Ade and Jason, you are a gift to this world and Noah has been a gift to so many of us around the world. He was sent here to draw us all closer to God. I consider myself blessed to be part of your world and will always be inspired by your courage, honesty, humility and faith. Be well sweet Graves family. Much love, thoughts and prayers from CT.