Yes, she has Down syndrome too

imageA fact that I honestly forget. All the time. In the grand scheme of Abigail, Down syndrome is at the bottom of my list of things to think about (when I say “think”, I often mean “worry”). I think about Down syndrome probably even less than I think about how to tame her crazy hair.

This is a good thing. Because October is Down syndrome awareness month, I wanted to share some of Abigail’s story, the Down syndrome part, so over shadowed by the “giant tumor in her head” part. When we had our 18 week ultrasound, they found 5 markers for Ds – VSD, dilated kidneys, ecogenic foci, absent nasal bone, and thicken nucal fold. I almost fell out of my chair as the OB went through one and another and yet another. Until he got to 5. And told me that my “risk” of having a baby with Ds, previously 1 in 700something, was now 1 in 2. A coin flip. I was shocked. Then, I looked at Stephen and just about laughed. See, my close friend, who was a little bit ahead of me in the pregnancy race, had just gotten a positive Ds test for her baby just a month or so before. So I had just walked through this process of shock, sadness, fear, etc with her. What on earth are the odds of that!? So so bizarre. The OB continued on about the options of amniocentesis and a less invasive free cell DNA test. I was half listening, still in disbelief. I opted to do the free cell DNA test and they drew the blood sample and set it off the same day.

Leaving that office, I was totally numb. Literally shell shocked. Not really because I was scared or grieving or whatever. More just disbelief. I mean, I’m only 31. How could my baby have Ds? I just couldn’t believe it. Truly, I knew almost nothing about Ds. Sure I knew of some families who had children with Ds, and I shop at Publix and had some very sweet baggers with Ds. So yeah. That was pretty much my extent of knowledge. It’s funny, awhile ago Stephen and I had some serious conversations about adoption one day, and possibly a child with special needs. Just, you know, one day. When we were ready and could handle it. On our terms. Not right now. And certainly I didn’t think I’d ever give birth to a child with special needs. After all, those children were given to “special parents” and those parents were usually amazingly faithful and had the patience of a saint. I definitely did not fit the bill. Stephen, maybe. Me, definitely not. I could barely parent my spunky 2 yr old. So I went home and promptly googled all our ultrasound markers and scoured forums and blogs and research articles for anyone who had as many markers as we did whose child came out “normal”. I found none. But what I did find was a shocking amount of “I’m going to abort, there’s no way I can have a child with Ds.” Really, really sad. That was never an option for us. But that’s a discussion for another post. Point being that I knew in my heart that she did indeed have Ds but I loved her immensely. When I got the call, days earlier than I expected it, I was not the least bit surprised to hear the nurse say that the test was positive. I cried some, but acceptance came pretty quickly. I had a feeling early on in the pregnancy that Abigail was special, that God was in this for reasons I didn’t know. I think I accepted the news quickly because I thought that this was the thing that I had been feeling. This was the way she was going to impact the world. With Down syndrome. And I became ok with that.

Most of my fear was (and still is) having a teenager or adult with Ds. A child with Ds is cute and adorable, just like all children. I thought an adult with Ds is a different story. I fretted about my child’s future, whether they could get a job, where they would live or if they could ever be independent. Could they make friends or get married, or would they be picked on for being different? Selfishly, I wondered if my husband and I could ever travel again, just the two of us, or retire to the Keys and live on a sailboat. Could I sacrifice my life to take care of a special needs child that grows up to be a special needs adult??

Oh how God laughs at us. So much of what we consider “life” is so not important. I mean really… Is going to Paris more important than taking care of a human? Easy to say but hard to really live out. I want to go to Paris! Like tomorrow. Please. We all do. We want to do things that please ourselves. Retiring to the beach with self sufficient kids that I never have to worry about? Sign me up! But life doesn’t work like that. Ds or no Ds, kids are all different. Some fly out of their nests, others hang around awhile. Or forever. We can’t predict that. I pray all the time to be less selfish. I hate the self centered thoughts that run through my head sometimes. Because the truth is, relationships are what’s important. That’s what matters at the end of the day. Your family being at the top of the list. I may not see the Eiffel Tower or swim with dolphins in Tahiti but my children will know they are loved. I go through my mundane life of being a mom, making peanut butter sandwiches and wiping boogers off everything, in the hopes that my girls know they are loved. That I’m happy I can’t pick up and run away to Italy because it means that I have them, I’m responsible for them and I can’t just leave. Truthfully, the leaning tower of Pisa pales in comparison to their smiles and sticky hugs. And if Abigail lives with us forever, that would be a great, great thing!

Another fear was that all I’d think when I saw Abigail was Ds. Even feared maybe I wouldn’t love her as much. I prayed repeatedly that when I looked at Abigail, I wouldn’t “see” Down syndrome. I didn’t want to look at her sweet face and focus on her Ds-like facial features. I wanted to see HER. God definitely answered my prayers on that one. I literally forget she has Ds on a daily basis. Maybe because I’m busy thinking about brain tumors but I think it would be like that even if she didn’t have the other issue. We haven’t tested her DNA for a 100% certain diagnosis so sometimes I wonder if she really even has Ds because I don’t see it. I actually asked our hospice nurse if Abigail looked like she had Ds and her prompt response was “oh yes”. So I guess she does “look like” a child with Ds. But to me, she’s just Abigail. She’s totally “normal” to us. Down syndrome, brain tumor, whatever. She’s Abigail. She loves to lay on her back and look around. Her hair is way cray cray. Her tongue has a mind of its own. She is forever pooping or peeing immediately after we remove her dirty diaper and put a clean one down. She makes the sweetest faces. She’s easygoing and the best snuggle partner ever. And she’s a 10lb champion fighter single handedly defying the odds and taking down brain tumors. Abigail has Down syndrome. But she ISN’T Down syndrome.

I think people with Down syndrome see the world differently than us “normal” people do. Probably better and simpler. Abigail will probably see much more of the good in life than I ever will. Sometimes I think we are the ones totally missing out. Maybe it’s our quality of life that is lacking. And not the other way around.

But what if she lives?

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We have been told since I was 30 wks pregnant that our baby was going to die. We’ve been through all the emotions. I’ve envisioned her death a thousand times, watched her die a thousand ways. Lost night after night of sleep afraid to lay her down, to close my eyes, paranoid she’s going to take her last breath without me. I’ve planned her funeral, what we would do with her ashes, what songs we would sing, what pictures I would display to show how perfect she was and how much she was loved. I’ve practiced how to tell the world we lost her, without losing it myself. I refused baby gifts, dreading I’d have to return them without a baby to use them. I’ve left tags on clothes, gifts still in their bags, older baby toys handed down from big sister Audrey still packed up. Abigail has no nursery, no cute, themed room especially designed for her. In fact, I have no idea where she’ll sleep when she has outgrown the bassinet. We haven’t planned that far ahead. In an effort to guard my heart, I’ve made every attempt to prepare for Abigail’s impending death.

But what if she lives?

An idea I haven’t even let cross into my head until recently. I didn’t plan, didn’t dream, didn’t hope past tomorrow. Then a couple weeks ago, as Abigail is thriving and growing, a thought popped into my head – but what if she lives? And after this week, and all the new information, new hope, after her seemingly somewhat improved MRI. What if she lives? We are prepared for her death but are we prepared for her life?

I don’t know. They told me there was no need to do newborn appointments or vaccinations. So I didn’t. I don’t know where she is on the growth chart or if she’s meeting her developmental milestones. I haven’t done anything related to Down syndrome, haven’t checked her heart, thyroid, labs, or even DNA for a 100% diagnosis. I haven’t  looked into physical therapy options, toys that help children with decreased muscle tone, or given her much tummy time. All these normal newborn things weren’t even on my radar. Now I’m wondering if I’ve done her a disservice but treating her like she was going to deteriorate quickly. What if she lives? Will we run into issues bc I didn’t start therapy early enough? Or will she get sick bc she missed a vaccine? Or does she have a heart, thyroid or some other issue we don’t know about bc we didn’t check?

I don’t know. But I have to believe we’ve made the right decisions up until now. I also have to change my thinking and give life a legitimate spot in the “what if” scenario list. Taking it out takes out a huge portion of the equation – God. Life is always an option, healing is always an option. Nothing is 100%. How I have to continuously remind myself of that! We’ve been told Abigail was going to die for months. But God said otherwise. She’s clearly not dead. Or close to dead. She’s actually thriving. Nurses at Wolfson’s for the MRI actually triple checked her identification bc her appearance did not match what they anticipated after looking at her chart and previous images that morning. Her medical records say this should be a very sick baby. But God said otherwise. It is the only explanation. You all believed it, spoke it, prayed it over our Abigail, when I couldn’t do it myself. I fully believe that’s why we are sitting here baffled at her. We been told all these things, I think these things… But… God.

It’s terrifying to put life back on the table. It scares me to hope. But someone said to me, “you won’t regret hope”. So I’m allowing myself to hope, and pretty recklessly right now. Suddenly, I think my baby is going to live. Truly I do. Even though they still say it’s a very long shot. But I’ll take it. Even though I get very overwhelmed thinking about what her life will look like if she lives. Her brain has had so much trauma. She may have significant special needs. Stephen and I have talked about what her “quality of life” might look like and would it be worth it to put her through all of it to be severely disabled. But who are we to say what “quality of life” someone has? God gives us life, it’s all high quality! So we’ll take it one day at a time. She hasn’t given up and we will not give up on her.

Prayer Works

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First image is Abigail’s MRI at birth, 8/6/15. Second image is yesterday’s MRI, 9/16/15. Marked difference!! See more brain less tumor? The power of prayer!

Abigail’s MRI was yesterday and we’ve been anxiously awaiting the results. What we see in her does not match what her last MRI showed. And we’ve had a hunch that her head is actually getting smaller, her sutures are closing, and her soft spot is coming together. So we’ve been wondering what the heck is going on in there.

The answer is…we have no idea. We met with our neurosurgeon here who is completely baffled. Comparing the two MRIs, from birth and yesterday, the images are definitely different. Basically, she cautiously told us things look better. It is still incredibly big, but slightly less enormous. The bleeding is less, the cystic areas are slightly smaller, the pressure in the brain has gone down. She even went as far as to question whether this is even a tumor in the first place. Whattt???!!!

Next, we talked to the pediatric neurosurgeon in Boston. He is the chief of pediatric neurosurgery at Boston’s Children’s Hospital, a professor at Harvard Medical, and one of the best, if not the best, in the nation. He took Abigail’s scans to the rest of his team, the chief of neuro radiology, and the chief of neuro oncology for review this morning in their conference. They also believe the scans are markedly different, things have changed. They all believe that this is definitely a tumor, but may NOT be an aggressive, malignant tumor as originally thought. He thinks it is possible that this could be a low grade tumor that looks like something worse. He believes the next steps are biopsy, determine whether it is the aggressive malignant tumor originally thought, if not then resect as much as they possibly can. If it is a nasty cancer, he probably would not risk the resection.

Oh. My. God. Literally. Oh my God!!!! What is happening?!! This has to be all you! We have done nothing! You and Abigail have your own thing going on. Confusing all our doctors. Baffling the experts. I love it. Keep doing it! “I have no idea what’s going on” is much better than “You need to be prepared that your daughter is going to die”. We are shocked. And joyful. And terrified. All while praising God!! A huge spark of hope has been lit and we are now on the offense, ready to fight this thing.

We realize that she still has a one in a million chance of survival. And if this doesn’t end in her graduating high school, we still praise God. We still know He’s here. Even if we lose her. Even if that tumor is the aggressive, cancerous monster they thought it was originally. Even if we lose her in the worst way possible. God is still God and He is still so good. He has given us a beam of hope. He has given us a clear indication to do something in terms of treatment. Wow, has He ever. I just feel like He yelled at me (in a nice way) through that MRI image, “oh you of little faith! Why did you doubt me!?”

We are going to need constant reminding over the next weeks, months, and years. We are planning to go to Boston as early as next week to have a craniotomy done to biopsy and possibly resect the tumor. This is not an easy surgery, and especially hard for a tiny baby. We can’t even fathom putting Abigail through this. But we have to, it’s her only shot. And we feel God is entrusting these doctors with her care. So here we go. Please pray for Abigail and our family, especially big sister Audrey. This journey we are about to embark on is going to be incredibly difficult. Our daughter has to have major brain surgery, in a city that’s far away from home. Our family will be separated for awhile. We are scared. But we are hopeful. We have put on the armor of Christ and we are ready to fight. And shine the love of Christ to everyone we meet along the way. Miss Abigail is going to keep making waves. Her story is going to keep touching hearts and pointing people to Jesus.

Suck it “inoperable” tumor!

Go Gold!

September is childhood cancer awareness month. And I guess it’s fitting that Abigail’s infant photo session has “gone viral” and her beautiful face has graced many online articles. And Facebook pages. And apparently even Pinterest. Which I find incredibly powerful and totally directed by God. We did not seek any of this out. All we did was try to freeze time at the talented hands of our new friend Mary. Who graciously donates her time and talents to families with children who have Down syndrome through the Buddy Baskets program. And she put our photos and story up on her photography blog, shared it on Facebook, and a friend of a friend is a writer for abc.com. And has a 2 yr old with Down syndrome so it caught her eye. So that’s how it started. It is His guiding hands that has placed Abby’s face all over the Internet. This attention actually makes me very uncomfortable and I would have not chosen to plaster our family on the World Wide Web if it were up to me. But it’s not. It’s up to God and He is moving. I pray she is touching hearts and souls all over the world. I pray they see the love of our family, the love we have for Abigail, and see a reflection of God’s love for us. Just a tiny glimpse of how much God loves us. Flaws and all.

But Abby’s is just one face. One face of many children out there battling cancer. One face of many children fighting God-knows-what disease trying to stay alive. One face of a child with Down syndrome. Abby is real. We are a real, normal family that never in a million years expected to be all over the Internet because we have a newborn daughter with brain cancer. I hate that we are all over the Internet because we have a newborn daughter with brain cancer. But God is using this for something incredibly amazing and I’m trying to roll with it. I don’t know what it is, but we would love to hear any stories that relate to Abigail. So maybe that if this ends the way our doctors expect it to, I’ll know how much her life mattered and how she made a difference to not only us, but family, friends and complete strangers.

We’ve also been approached many times about financial support. While we are grateful for the thought, as of now, we are stable and not in financial need. However, there is a serious need for funding for research specific to pediatric cancer. As I have recently scoured Google for information on infant/fetal brain tumors and cancers, I know how little research is out there that’s even mildly relevant to what’s going on with Abby. A handful of case studies. In light of going gold this month for childhood cancer, if you feel like you want to help financially, consider donating to a charity that helps children with cancer. Whether it be a non profit funding research, or providing games for kids in the hospital, or providing a free place to stay, or granting that last wish for a terminal child. They are all so important to the children and families involved. So if your heart is led to give, do it. Don’t think too much about it. Just give. There’s a reason why you feel the pull to help, someone out there needs you. Are you listening?

These are just a few charities involved with children and families fighting cancer. And a special charity for local families with children with Down syndrome. Some of these have already made a huge impact on Abigail’s life and supporting our family. We are forever grateful.

Pediatric Cancer Foundation: http://fastercure.org
Community PedsCare: https://communityhospice.com/our-services/childrens-services.aspx
Buddy Baskets: http://www.tesorifamilyfoundation.org/buddy-baskets.html
Dreams Come True: http://www.dreamscometrue.org
Childrens Miracle Network: http://give.childrensmiraclenetworkhospitals.org
Ronald McDonald House: http://www.rmhc.org

5 Week Anniversary!

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Abby update – She continues to thrive and defy our expectations. Last week, we sent her scans and records off to Dana Farber in Boston, the best of the best for pediatric cancer, for a second opinion and are anxiously waiting for them to review our case. Unfortunately it may not be until next week or the week after until they get to us bc there are other cases in front of us. Terrible that there are so many other families in our shoes with kids battling cancer that we have to wait in line. In the meantime, we are setting up another MRI and an appt with the oncologist here. We’ll see what this thing is doing.

Thank you for the prayers and support they are making a difference!

The Will of God

This is something that a lot of people have talked with us about lately. First off, God did not give this tumor to Abigail. We live in a fallen sinful world because of the original sin of Adam. Let’s make that clear. God did not give this tumor to Abigail. (If you want to discuss that further please message me)

“It is God’s will for Abigail to be healed. His will on earth as it is in Heaven…”

That could or couldn’t be true. Many people associate God with healing, especially of a defenseless child. They put their belief in the outcome rather than the Creator. When we correlate the sovereignty of God with the outcomes we want, God is now our vending machine. We want Him to do this and that in our lives. Weather that is to fix your marriage, get a promotion or heal a brain tumor in a child. In God’s eyes all of those things are the same. We make them different. He is able to fix every one of those situation in a breath, a whisper or a moment. He is able to do all of them without issue. When we pray just for healing we are limiting who we believe God to be and once again you are tying your belief in God to the selfish outcomes that you want. God doesn’t work that way and if you want God to work that way, go find another God. Contrary to the modern American Christian belief God will not always make your life easy or happy. He will not bless your because you’re a good and happy person that goes to church every week and has perfect hair, smile and family. If that is what you believe, I don’t know what God you are following but it’s not the God of the Bible. God’s will for you is not to have a 4/2 in suburbia with three kids a dog, suv and a smooth easy life. Once again, not the God of the Bible or Christianity.

God’s will is for all humanity to be connected to Him. When you truly confess that He is your Lord and Savior, you are His. You have given up your right to have whatever life you wanted. Many people don’t realize this when they first come into relationship with Christ within modern American Christianity. God purchased you with His son. Let that sink in…your soul was owned the devil. God purchased you with the life of His son. Plain and simple. When you truly open your heart to Him, you are now His property. Now some people might not like that terminology. I could water it down for you to make you feel better about yourself, but I won’t. Why? Because being property of God is better that all the “freedom” and riches in the world, combined. He loves is a never ending ocean of peace, joy and mercy. His path is straight and true. His thoughts for you are more than could ever been numbered. All He ever wants for you is the best.

“Wait, how can you say that God wants to best for you when you daughter has a brain tumor?”

Easily. I understand that my life or Abigail’s is not limited to this world. She is not here just for my enjoyment. She is God’s child first, mine second. The game of life doesn’t last for 80 years. The game of life is an eternity, that’s what God has us playing for. His will is for all souls to be in relationship with Him. As His child, Abigail is helping that cause. Because God’s will is to have everyone come into relationship with Him, and He is omniscient, which allows for Him to use us the best way He sees fit to bring all into relationship with Him. We have to have faith in His plan and if Abigail saves on soul from Hell, her life is worth it. I believe that to be true for all believers in Christ. His life was the greatest expression of love, peace and joy in human history. Yet is was riddled pain, suffering, and sacrifice to the point of death. Are you greater than Christ?

We pray for Abigail to be healed each and every day. That is the easy prayer. God can heal. Plain and simple. The more difficult prayer is that we ask for grace and understanding in the midst of this difficult situation, trusting that God has a plan. We will not twist God’s arm into healing her, if it isn’t a part of His eternal plan. I want my daughter to live. I couldn’t imagine her not being with us, but I know God has a plan that is greater than what I see and the pain we will walk through. His ocean of love is big enough to cover our pain…