Most of you know my daughter Hailey was diagnosed with Periventricular Leukomalacia (PVL). Before you Google it ... let me give you the readers digest version: it is damage to the white matter part of the brain. It happened in utero and the cause is unknown, but I did not cause it. I have to keep saying that out loud because I will forever blame myself for this and that's the only way I can handle that guilt right now. Her motor skills will be impaired. For how long or how bad we do not know. We may never know. But she will require extensive Physical and Occupational Therapy (PT and OT respectively) for an indefinite period of time. It also means that she has an increased chance of being diagnosed with Cerebral Palsy (CP).
Honestly, I'm devastated. My child is broken and there is nothing I can do to fix her. She is "special needs" and words can't begin to express how much I hate saying those words. It's like venom to me.
But people want to know how I'm doing after a life altering diagnosis because most people can't imagine. And I want to tell you. But only if you REALLY want to know. Because really I am so many things it's absurd. I'm told that's okay, and it has to be. Because I can't not be.
I'm angry. I am sad. I'm confused. I'm overwhelmed. I am loved. I am supported. I am bitter. I am hurt. But it's not about me. It's about Hailey. But she has no idea right now. No clue, the struggles that lie ahead for her. The pain. And the hard truths that we will have to face. And as her mom who loves her more than anyone could fathom, I feel those for her. I feel the things she can't right now.
I am mad that I can't struggle for her, because you honestly have no idea what I would do to take this. NO IDEA. I would give myself to take that from her. I will pray for the rest of my life to God to have Him lay this on me. It will never happen because that's not His will, but I will ask anyway.
I am sad because when people find out her diagnosis they will say things like " Awww it'll be okay" and "Awww what a sweet baby! She's so beautiful." And "Just let me know if you need anything." These are at their core wonderful things. And it's not that they aren't appreciated. But they are just sentiment. First of all, no it won't be okay. At least not today or tomorrow or next week. MAYBE one day, but that's only a maybe. Second, she IS sweet and beautiful but not because her brain is damaged. And I KNOW people will say that because they feel bad for her and not because she really is. SHE IS SO beautiful. And this makes me die inside. It literally kills me each time I hear it. I'm sobbing just writing it. And lastly, I will maybe try to remember to call you, but I need you to say: here are the days I can watch your kids so you can take Hailey to her 50 billionth appointment. I am coming over on Saturday so that you can leave your house and pretend to be a normal human for 5 seconds, is 2 or 7 better? I am taking Emma to the zoo today, have her ready at 11. What night of the week do you want dinner I'm making extra chilli? THESE are the things I need but can't ask for. Or if I do ask, I NEED SOMEONE to help. Too often I ask and am denied and guess what ... a person who STRUGGLES IMMENSELY to even take the step to ask for help, and time after time after time never gets it ... struggles even more. And then I find myself drowning because I can't do this alone and I usually am. So if you want to help, I will ask, but please follow through. If not, THAT'S OKAY!!!!!!!!!!!!!!!! That does not make you less of a person, or mean, or unhelpful, or uncaring ... I think NONE of those things. It only means you aren't able. And HELLO ... I GET THAT!
I worry that she will be bullied MORE than my other children because she will most likely not be able to do what they can. Or will be slow. I worry that this will affect her intelligence and she will struggle in school like I did. I worry that people will say "But if you're identical aren't you the same? So why are you messed up and she's not?" - I cry about that the most. People assume that since they're identical twins they are the same. And in some ways they are, but they are still two different people. And the fact that Hannah does not have PVL further suggests that it was not my fault, because had I done something to instigate this, Hannah would have most likely been affected as well. (Have to keep saying it, and no it won't help if you tell me)
I feel guilt that it could be worse. I know that. I know this is not inherently life threatening. I understand. It's not cancer, it's not CF but honestly, that doesn't make it okay. Yes those are worse. You're right and shame on me in my boohoo session. But regardless, my child is hurt and can't be fixed. Bottom line. And as each parent is entitled to feel upset that their child has XYZ ... I have to be entitled to hurt for my baby. So saying it could be worse does not make it better. (So far, no one has, and for that friends, I thank you).
I feel hopeless. I have been robbed of hope because I had hoped the MRI would be inconclusive. And everywhere I turn when I am optimistic and hopeful that MAYBE it's not so bad, maybe she still can, MAYBE maybe maybe ... so far it's all been no. So you can be hopeful and optimistic FOR ME, but I will not be right now. It's where I am. That's all I have
I am Thankful. I am Thankful for an AMAZING family. For a mom who came out just to watch Emma and Hannah while we had the MRI then volunteered to turn around and drive back when I got the diagnosis. For a dad who wouldn't stop calling until I answered and was dead set on coming out JUST to hug me. (From Toledo to Cleveland) Mind you my parents have commitments but were willing to figure it out on the fly to be with me. A husband who went to work after the MRI and only a few hours later came home after the diagnosis so that I wasn't alone. I am Thankful for a hilarious, spunky 4 year old who keeps telling me I don't have to cry anymore. Who stops eating to run over and give me a big hug. Who makes me laugh. Who when asked will still love her sister no matter what. I'm Thankful I have an aunt who is a PT who is moving mountains to come out for Hai's first PT appointment to go with me. For my friend who dropped everything to bring me coffee today and let me sob my face off on my couch. To give me wisdom and advise. My small group who prayed over me for my family and I last night. Who allowed me to laugh with them (And sometimes at them) because I need humor. I believe it is healing and for 2 hours my soul was not crushed and my heart not shattered. I am Thankful for the people who have already stepped up to watch a 4 year old and a 10 month old so I can care for Hailey and take her where she needs to go. I am thankful for so many people praying. I am Thankful I have never felt alone and I am Thankful I have always felt loved. And that's a lot to be Thankful for.
I put this in God's hands when Hailey was 3 months old and I knew she was special needs. I tried to be hopeful ... again ... and wait and see. But I knew. And I prayed long and hard. And while my heart is not for special needs children ... I'm now in the heart of the ocean swimming with sharks and doing my best not to drown or get eaten. But when you swim with sharks, you're probably gonna get bitten. Guess it's a good thing I'm a Lifeguard. I will fend off as many attacks as I can, swim as far as I can go, and treat the wounds when they come. And pray and pray and pray and pray that if I love her enough that that will be okay. Because honestly ... that is all I have. I am not smart, I am not brave, I am NOT strong, I'm not equipped, I'm not good enough for her. I will fail her more often than I help her, but I will never leave her and I will never stop loving her. PLEASE God let that be enough. I will be the stump in The Giving Tree. And I will give her all of me. And it will probably not be enough, but I'll give it all anyway.
I am an emotional disaster. My house is a wreck, my hair is disgusting, and my mind is in chaos. And that ... is how I'm doing. If you talk to me I will cry. If you see me I will be hideous. If you come to my house it will be disgusting. But we are alive. And we are here. So that's something. And that, is how I'm doing.
Honestly, I'm devastated. My child is broken and there is nothing I can do to fix her. She is "special needs" and words can't begin to express how much I hate saying those words. It's like venom to me.
But people want to know how I'm doing after a life altering diagnosis because most people can't imagine. And I want to tell you. But only if you REALLY want to know. Because really I am so many things it's absurd. I'm told that's okay, and it has to be. Because I can't not be.
I'm angry. I am sad. I'm confused. I'm overwhelmed. I am loved. I am supported. I am bitter. I am hurt. But it's not about me. It's about Hailey. But she has no idea right now. No clue, the struggles that lie ahead for her. The pain. And the hard truths that we will have to face. And as her mom who loves her more than anyone could fathom, I feel those for her. I feel the things she can't right now.
I am mad that I can't struggle for her, because you honestly have no idea what I would do to take this. NO IDEA. I would give myself to take that from her. I will pray for the rest of my life to God to have Him lay this on me. It will never happen because that's not His will, but I will ask anyway.
I am sad because when people find out her diagnosis they will say things like " Awww it'll be okay" and "Awww what a sweet baby! She's so beautiful." And "Just let me know if you need anything." These are at their core wonderful things. And it's not that they aren't appreciated. But they are just sentiment. First of all, no it won't be okay. At least not today or tomorrow or next week. MAYBE one day, but that's only a maybe. Second, she IS sweet and beautiful but not because her brain is damaged. And I KNOW people will say that because they feel bad for her and not because she really is. SHE IS SO beautiful. And this makes me die inside. It literally kills me each time I hear it. I'm sobbing just writing it. And lastly, I will maybe try to remember to call you, but I need you to say: here are the days I can watch your kids so you can take Hailey to her 50 billionth appointment. I am coming over on Saturday so that you can leave your house and pretend to be a normal human for 5 seconds, is 2 or 7 better? I am taking Emma to the zoo today, have her ready at 11. What night of the week do you want dinner I'm making extra chilli? THESE are the things I need but can't ask for. Or if I do ask, I NEED SOMEONE to help. Too often I ask and am denied and guess what ... a person who STRUGGLES IMMENSELY to even take the step to ask for help, and time after time after time never gets it ... struggles even more. And then I find myself drowning because I can't do this alone and I usually am. So if you want to help, I will ask, but please follow through. If not, THAT'S OKAY!!!!!!!!!!!!!!!! That does not make you less of a person, or mean, or unhelpful, or uncaring ... I think NONE of those things. It only means you aren't able. And HELLO ... I GET THAT!
I worry that she will be bullied MORE than my other children because she will most likely not be able to do what they can. Or will be slow. I worry that this will affect her intelligence and she will struggle in school like I did. I worry that people will say "But if you're identical aren't you the same? So why are you messed up and she's not?" - I cry about that the most. People assume that since they're identical twins they are the same. And in some ways they are, but they are still two different people. And the fact that Hannah does not have PVL further suggests that it was not my fault, because had I done something to instigate this, Hannah would have most likely been affected as well. (Have to keep saying it, and no it won't help if you tell me)
I feel guilt that it could be worse. I know that. I know this is not inherently life threatening. I understand. It's not cancer, it's not CF but honestly, that doesn't make it okay. Yes those are worse. You're right and shame on me in my boohoo session. But regardless, my child is hurt and can't be fixed. Bottom line. And as each parent is entitled to feel upset that their child has XYZ ... I have to be entitled to hurt for my baby. So saying it could be worse does not make it better. (So far, no one has, and for that friends, I thank you).
I feel hopeless. I have been robbed of hope because I had hoped the MRI would be inconclusive. And everywhere I turn when I am optimistic and hopeful that MAYBE it's not so bad, maybe she still can, MAYBE maybe maybe ... so far it's all been no. So you can be hopeful and optimistic FOR ME, but I will not be right now. It's where I am. That's all I have
I am Thankful. I am Thankful for an AMAZING family. For a mom who came out just to watch Emma and Hannah while we had the MRI then volunteered to turn around and drive back when I got the diagnosis. For a dad who wouldn't stop calling until I answered and was dead set on coming out JUST to hug me. (From Toledo to Cleveland) Mind you my parents have commitments but were willing to figure it out on the fly to be with me. A husband who went to work after the MRI and only a few hours later came home after the diagnosis so that I wasn't alone. I am Thankful for a hilarious, spunky 4 year old who keeps telling me I don't have to cry anymore. Who stops eating to run over and give me a big hug. Who makes me laugh. Who when asked will still love her sister no matter what. I'm Thankful I have an aunt who is a PT who is moving mountains to come out for Hai's first PT appointment to go with me. For my friend who dropped everything to bring me coffee today and let me sob my face off on my couch. To give me wisdom and advise. My small group who prayed over me for my family and I last night. Who allowed me to laugh with them (And sometimes at them) because I need humor. I believe it is healing and for 2 hours my soul was not crushed and my heart not shattered. I am Thankful for the people who have already stepped up to watch a 4 year old and a 10 month old so I can care for Hailey and take her where she needs to go. I am thankful for so many people praying. I am Thankful I have never felt alone and I am Thankful I have always felt loved. And that's a lot to be Thankful for.
I put this in God's hands when Hailey was 3 months old and I knew she was special needs. I tried to be hopeful ... again ... and wait and see. But I knew. And I prayed long and hard. And while my heart is not for special needs children ... I'm now in the heart of the ocean swimming with sharks and doing my best not to drown or get eaten. But when you swim with sharks, you're probably gonna get bitten. Guess it's a good thing I'm a Lifeguard. I will fend off as many attacks as I can, swim as far as I can go, and treat the wounds when they come. And pray and pray and pray and pray that if I love her enough that that will be okay. Because honestly ... that is all I have. I am not smart, I am not brave, I am NOT strong, I'm not equipped, I'm not good enough for her. I will fail her more often than I help her, but I will never leave her and I will never stop loving her. PLEASE God let that be enough. I will be the stump in The Giving Tree. And I will give her all of me. And it will probably not be enough, but I'll give it all anyway.
I am an emotional disaster. My house is a wreck, my hair is disgusting, and my mind is in chaos. And that ... is how I'm doing. If you talk to me I will cry. If you see me I will be hideous. If you come to my house it will be disgusting. But we are alive. And we are here. So that's something. And that, is how I'm doing.
Christie,
ReplyDeleteYou don't know me, but my dear sweet friend, Kathy Munk shares your blog with me today.
My son was born with two rare congenital birth defects that will effect him for the rest of his life. He has endured hours of physical, occupational, and speech therapy. He had 13 specialists at one point in his young life and my weeks were good ones when they consisted of only 2 or 3 appointments. Today he is a rambunctious, stubborn, and sweet little 3 1/2 year old.
I tell you this to let you know that I have been where you are. I have silently screamed each of these sentences in my head. Like you we have a phenomenal support system of family and friends and church family, but it still doesn't chnage how lonely and defeated you feel. How angry or disappointed you may become.
My heart cries for you momma. I want to reach through this phone and smother you in a big hug and weep tears of anguish with you for what you have lost and what you have gained.
I remember the first time I said my son has special needs. It just fell off my tongue and I stopped mid sentence as my brain processed what my mouth had said. That was a hard day. It was like I had finally sealed his fate. But I have come to realize that he is absolutely something special.
I want to encourage you that you will have good days. And eventually those days will outweigh the bad. For now, survive on the love and the ended was of those around you. Lean on them and press into the Almighty. He sees the tears you don't even have the energy to shed anymore. He knows the longings for the things lost that you have hidden deep in your heart. He hears your cries. He weeps with you. He is no stranger to pain and loss and although you may never understand the whys of your situation, he does and he wants to comfort you. It is ok to be angry with Him, just take the anger back to Him, give to Him and continue to give it back and invite him into your pain.
I still find myself grieving some days. On days when my son's delays are so noticeable. On days when we are on high alert because he sick. On days when we have to rush him to the ER again and I watch them poke his arm for an IV and tears stream from the corners of his eyes and down his cheeks. I grieve for my son who will never know a normal childhood. I grieve that he knows the smell of an alcohol pad means he will be in pain. I grieve for his olde the other who has seen and understood far more then his tender heart should in the ways of stress, disappointment, and fear. I grieve for his younger sister who will never know anything else, who will grow up with a chronically ill brother.
Oh momma, the grieving is hard. And it comes in waves. And don't beat yourself up or let others chastise you for grieving a year from now, or two years from now, or on your daughters birthday, or the day of diagnosis. It's ok to grieve.
But I also want you to know, from someone who gets it, that there is hope in this world of special needs. There is light and laughter and love. There is beauty and joy and laughter. Someday you will get there. Someday you will say, "today was a good day!" And you will look at that sweet princess of yours and feel blessed beyond imagination. It will come.
But for now, keep fighting. And on the days you are too weak to even stand, cry out to Him that promises to be our strength in all things.
I am praying for you.
In Him, Erin