Just when things were going so well….
I naively hoped that finally, Finally, FINAAAAAAAALLLLLLLYYYYYYY, things were going to turn around for us. After a decade of struggles it looked like we were going to have everything we wanted. Great house, great job, great family.
I must have forgotten how my life actually works.
For the past year now, just after we bought the house – of course, Bear’s job has been in jeopardy. Not through anything he did or didn’t do. He is incredibly good at his job. His staff adores him, he breaks all kinds of financial records, he supervises over excellent care for the patients. But shortly after he was hired his company, a huge national corporation, decided to make a number of changes in their business model which included selling their Southern California buildings.
It is standard procedure when a new company comes in to fire the administrator because usually you only sell a building if it’s not making money, and if it’s not making money it’s the administrator’s fault. But our circumstance was different because they had just replaced the long time administrator with Bear, who was turning things around remarkably fast. We really thought we were in a pretty good position.
All year long we’ve been holding our breath as one company after another came through, tried to buy the building, threatened his job, and then fell through. After over a year now, one company finally stuck it out and the sale becomes official sometime next month.
This industry is very small (which is why I’m being so vague) so we had lots of friends and contacts feeding us information and rumors about the new company and their plans. Bear prepared an impressive presentation, met with the new owners, and we were sure we had it in the bag. They even had conversations where they told us that they couldn’t talk out of turn but that we should “read between the lines” about our future with the company. Without handing us a contract, they made it as plain as they could that we were staying on board.
Until Friday when they called Bear out of the blue and told him he was fired.
We turned down so many offers and other opportunities. A couple of months ago when we flew to Tuscon? We had a job offer that was fantastic and the only reason we aren’t in Arizona now is because we felt so sure this one was going to work out. The market is kind of bleak at the moment, so we don’t know what is going to happen.
Obviously, we were pretty distraught over this, so we rushed down to the hospital to spend some time with our baby and put a few things in perspective. We knew we were in trouble when we walked in and the nurse ran to get the doctor who wanted to talk to us.
The biggest risks for preemies are lungs, brain, eyes. In that order. Friday they did his first eye exam and everything looks pretty good. Even if he were to stop progressing at this point he wouldn’t be blind, he’d just need some laser surgery. So that’s good. He’s making great progress on the oxygen and now there’s only one more step down before he’s off of it for good. That leaves the brain.
In a routine scan, they discovered two little “cysts” in the middle of his brain. These are areas of the brain that had at some point been denied oxygen and consequently been damaged, resulting in Cerebral Palsy. They are located in the part of the brain that governs gross motor skills.
We won’t know the extent of the damage until he’s at least two years old. We’ll have to see how he develops to discover how the brain damage will manifest in his abilities. He might be able to resolve his issues with physical and occupational therapy, or he could have lifelong limitations. Based on the size of the injury, he most likely won’t be one of the kids you think of when you hear “Cerebral Palsy.” He probably won’t be in a wheelchair. Hopefully. But he definitely won’t have an easy road. And any hopes Bear held on to about our Rookie still being a super athlete despite his prematurity, pretty much died.
This is a man who has two loves in his life. Me, and sports. Particularly football. He has no other passions, and even few other deep interests. And now the son that he’s longed for for so long most likely will not be able to participate in them. Devastating doesn’t even begin to describe it.
We’ve had a few days to process everything and we’re doing pretty ok. We’re probably doing far better than we should be given everything we’re facing. Luckily we’re both fixers and after a couple days in bed eating our feelings (fancy European chocolates for me, crappy pseudo pastries – Ding Dongs, donuts – for him) and watching sports underdog movies (we own Rudy, Rocky, and Hoosiers and had a marathon this weekend) , we sat up and came up with a battle plan. Bear is so good at his job and he has a specialized skill, he’ll be able to find something. We might just have to revise what we’re looking for a little. He also works with PT’s and OT’s and I know I can take Atticus into the therapy room and have them show me what to do and I’ll turn myself into his personal physical therapist. There are state programs we qualify for that send therapists to our house and I am going to take advantage of them and get educated and throw myself into this.
We’re resolved to get through this and tackle these challenges, but I would be so lying if I didn’t also say that we are terrified and feel angry at God and completely betrayed. We are good people. We help others whenever we can. No one should have to go through what we’ve gone through in the past ten years.
We love you and pray daily for Atticus! I can't imagine even half of what you are going through. I do know, that although it is easy to feel abandoned by GOD, he is the best coach ever. If you're at a sport's practice, and your coach isn't riding your tail, it is probably because he has given up on you. If he is making you work hard and work hard and work hard and riding your tail, it is probably because he recognizes your great potential and wants to help you reach it when even you don't know what your potential holds. I truly believe that our Heavenly Father allows us to go through the most tragic sufferings, because he loves us, he has faith in us, and he sees our great potential. Whatever happens with Atticus, you two have been chosen to be his parents in mortality because you have the strength and fortitude to work for what he needs and give it to him. Atticus is truly the Olympics…he is probably one of the Lord's choicest spirits and the past ten years has been your training to get ready. Remember what really matters, and don't give up just yet on any dreams…the fight isn't over, it's just begun. Heavenly Father must have great faith in you. When I look back at my greatest hero, Jesus Christ, I know that Heavenly Father loved his only begotten more than I can comprehend and he let him suffer and bleed from every pore in the Garden of Gethsemene. I pray that you may be able to recognize His great love for you in letting you suffer so that you can be a Savior for little Atticus! We love you. You will continue to be in our prayers and we are always grateful for the friendship that we began back in old Cali. Miss you!love,Alison & Steven
I'm so sorry to hear your news. I love you both so much. You are good people. You're going to get through this. I can relate to your feelings. I still don't understand why most people seem to be better or luckier at life than me. Having a child with disabilities is beyond devastating especially for the dads. You need to allow yourselves time to mourn and accept but also fight for Atticus to be able reach his highest potential. I’m praying for you.
Keep your faith. You two wouldn't have Atticus today if you hadn't kept the faith. If there are any parents on this earth that can handle this challenge it is you two. God only gives us what we can handle. 'He' knows you can handle this as do I. Blessings are easy to appreciate when they are given freely, it is the ones we have to fight for that make us doubt and question. I'm just saying…
I ran across this years ago, I like the idea of being handpicked by God to be trusted with somebody special. Believe me, the part about cherishing every step and spoken word can be very true. Matthew's birth and early childhood were filled with so much nervous anticipation I learned to not only cherish what he could do, but also to cherish each accomplishment my other children made as they joined our family(they are not disabled). Made me value them all just that much more. Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger. "Armstrong, Beth; son; patron saint, Matthew. "Forrest, Marjorie; daughter; patron saint, Cecelia. "Rudledge, Carrie; twins; patron saint…. give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. "I will permit her to see clearly the things I see — ignorance, cruelty, prejudice — and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." "And what about her patron saint?" asks the angel, his pen poised in midair. God smiles. "A mirror will suffice."this is one I found myself years ago it so perfectly describes the journey ahead of you. When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy… and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.But… if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.Emily Perl Kingsley 1987I can't pretend it isn't a hard trip at times, and the truth is finding out is less like a plane landing and more like being pushed out of the plane with a faulty parachute that opens late… The author did however forget that sometimes there are even more trials ahead so perhaps it should be said "Holland" has a couple detours on bumpy unpaved roads. But you'll see flowers blooming along those roads, little things to remind you of the of your blessings good people when you hit a pothole hard.I wish you well, Bear and Atticus also. Things will work out, just how God plans, in his time. In His Love
Hey Tresa girl ~ remember me? I've been following your journey with your sweet Atticus. First of all ~ Congratulations Momma!! ~ He is absolutely precious.The unknown is the hardest part about parenting. Especially when it comes to parenting a child with special needs (or in Atticus's case, one who might have special needs). I have a lot of experience in this. The one thing that I can guarantee 100% is that having a child with special needs in your life is one of the most REWARDING and LIFE CHANGING experiences. I know this ~ remember my Amanda?Hugs to you Tresa. Gentle blown kisses to Atticus. xoxoxo
What wonderful thoughts from others. I love the analogy about Holland – maybe bring home some tulips from the store to put next to the pump to remind you, as they're in such beautiful season right now. I will just add one from my scripture study this morning about the annointing of King David in 1 Sam 16 – he was young, the prophet initially thought the honor was going to one of the big strapping successful brothers, but it was going to the sheepherder. June Hunt's devotional for this text in the Womens Devotional Bible reminds me: "whatever God chooses for you to do, he will equip you to do." Later David would declare that facing Goliath was not something he did alone, but "the battle is the Lord's."
I am going to pop out of the woodwork and say, Reese, that you have been dealt some crappy hands in your life, and I don't blame you for feeling angry. But I have to say that in spite of it all, you are still one of the most generous, funny, dignified people I have met. And you are such an expressive writer. Little Atticus is so lucky to have you as a mom. And I have no doubt that you will continue to channel your anger and pain into learning about how to give Atticus a fighting chance at overcoming his challanges. You know a lot about overcoming and I have not doubt that you will rise above dispair and find your faith in God again. My prayers are with you.
Hi:I've been reading your blog for a while, and I just wanted to say that you are in my prayers. When I was born via emergency C-section, the doctors told my parents I could have disabilities as I was without oxygen for a while. So they braced themselves. Luckily, the doctors were very wrong. Whatever God has in mind for you, your husband, and your child, He really does have your best interests at heart. It may not seem that way right now, but trust in Him, and you all will be OK.Anna Marie
Reese, add me to the list of well-wishers. I love reading your thoughts here and at Beginnings New, and I feel like you are a friend. I was so sorry to hear about your troubles. I'm sending my prayers and positive energy your way!
GlennaB posted the poem I was thinking of "Holland". As the mother of a special needs child who passed away a dozen years ago, I know of some of the heartache you are talking about. It sounds like you and your DH are strong, and although right now you are angry and bitter, you have to remain strong for your darling son.Hang in there. {{{hugs}}}