Well it's been awhile and here we are again. As I suspect will happen from time to time I have, unlike my cyborg husband, emotions. This last week they definitely got the better of me. Try as I might I couldn't keep those wet balls in my eyes. I was a snotty, teary mess 60% of this past week. And goody for you! Now you get to hear about it ... er rather read ... whatever you know what I'm saying!
So this week we got to meet another specialist. The Physiatrist. I can't explain technically what he does, but he is essentially a pediatric specialist that focuses on movement (like kinesiology). He is a doctor and sees many kids like Hailey. So the good news ... He said "you know with kids with this condition you wonder will they walk? Won't they walk? -- Record scratch ... pause the quotes for a second ... Jay and I hadn't realized not walking was even on the table as a possibility. Last appointment with neurology was Hailey may grow up to be clumsy ... but she didn't need brain damage for that ... she could've just inherited it from me ... Sir Gimps-alot. So ... that's news. Resume quote ... -- But in her case she will walk. Now whether it's with braces? I don't know? Whether it's with a walker? I don't know. But she will walk." Okay, so trying to be grateful, I'm crying to find out my baby may not walk (remember NOTHING is certain with this damage). He also said that most often kids with this condition fall in the lower end of normal range for IQ. He is extremely confident she will fall in the normal range. Praise God for that too. It saddens me to think that the possibility of her being intellectually superior is much less likely and not probable. That's a weird pill to swallow. But we went to OT today and her therapist said "I'm glad you brought that up," as I was filling her in on our appointment, she said "she is VERY aware of what's going on around her and object permanence ..." Everyone we talk to believes that cognitively Hailey is right there. That is definitely hopeful ... but they all also say that cautiously. It's a "good sign." When I asked the Physiatrist what he meant by she may need a walker - is that a short term thing, for life? What? He said it could be for life ... he doesn't know. Youch. Yes she will walk ... I am grateful ... I am sad that it may only come with the help of a walker for the rest of her life. Again ... this is easy for you ... you just read what I tell you and say oh yay!! Good for her ... For me it's my life. My baby. Permanence. I'm happy ... but crying at the same time. Her hamstrings appear to be a little short ... which can happen with "normal babies" so it's not "telling" but he put in an order for leg braces for her too. We don't have them yet, but Hailey now needs 2 wrist/hand braces, 2 leg braces, KT tape, and another wrap for her arm that I can't think of the name of right now - but it helps to "Supinate her arm and hand." (Supinate means to turn it from palm down to palm up.) All for one baby that doesn't even weight 17 pounds yet.
PT was hard last week as her therapist was sketchy on the doctor's opinion of walking. Talk about making your heart sink. She never contradicted him and after a few moments directed her energy into saying "well ... I just get nervous when doctors put a time frame on walking." Which I never said he did. I suspect this change of direction came after wetness appeared in my eyes to help me feel better. Long story short ... I'm now more confused than ever because I keep getting told one thing only to be told another by someone else. CP (which she hasn't officially be diagnosed with, but everyone is treating her as such) is supposed to be "stagnate," which means it won't get any worse ... come to find out that when kids like Hailey try to walk the tone in their legs INCREASES (which means gets worse) and causes walking to be much harder. Which is part of the reason some kids don't walk. UGH!!!
Honestly that is one of the hardest parts about this process ... what is going on ... can anyone say anything with certainty?? NO. The answer is no. If I have questions I pretty much can't answers and if I do they aren't straightforward and are confusing. I am not an intellectually superior person. Yeah go ahead and yell at me like you all do each week that I'm too hard on myself ... that's fine. The grades my entire life would beg to differ with you. I'm not hard on myself when it's the truth. I've only ever been mediocre scholastically which is why I cry for Hailey because I don't want that struggle for her. But one of my biggest pet peeves is being confused. I hate it. So much. And this process is one big confusion after another. One doctor says this, another specialist says that and everyone says lets wait n see. Well ask my husband I'm equal parts impatient and stubborn. I want my answer and I want it now. I don't want to wait 6 months or a year or 2 years.
Now for the good stuff. Still being blessed ... You guys! How can I Thank everyone enough? I'm baffled and stunned and humbled and grateful. Every time I think we are heading into loneliness ally someone comes around and does something that proves 2 things; 1. That God is keeping His promise and 2. I know the best people in the world. Weather it's not 1 but 2 random acts of kindness in Target or a well timed text or the best card I've gotten in a few weeks. I'm not alone. I said it earlier and I get to say it again. There are 2 things I've never felt this whole time; unloved or alone. You won't let me. And for that ... that is pry the greatest gift of all. Because ... this wasn't how it was supposed to be.
First of all ... I was supposed to have all boys. I know boys, they're easy and I can do boys. I had all girls. What do you do with a girl?? Second, I was supposed to only have 1 baby this last pregnancy. As most of you know when I was pregnant I went in for my 9 week standard OB appointment and congratulatory doctor visit. The in office ultrasound did it's job and showed 1 lil bean in there. Flash forward to my 18 week gender scan ultrasound and bada-bing TWINS. IDENTICAL GIRL TWINS. Proud of Jay for not passing out or throwing up and my beautiful sister-in-law for "calling it" when I was only 10 weeks. Yes I'm not joking she told me it could be twins ... but I guess a fellow mother of identical twin girls would know!! Holy moly ... well okay that's great! But I was supposed to deliver full term naturally and my girls were taken at 35 weeks via emergency c-section. I was supposed to exclusively breast feed and me being stupid I unknowingly ruined my milk supply and have had to supplement with formula. Everything I had planned has completely gone out the window. Everything. Which only proves to the old adage "If you want to make God laugh tell Him your plans!" Oh boy ... in my case I had God in stitches!! But my pride and my feelings have been wrecked. Despite what you think you also told me I'm entitled to my feelings and I have felt like a massive failure these past 12 months. Just because you think I'm doing a "good job" doesn't necessarily make it so. I'm keeping them alive but that's about it. I'm struggling. Greatly. And I'm doing my best ... but my best doesn't feel good enough. I feel like a failure that Hailey even HAS PVL (My kids were supposed to be normal and healthy you know), I feel guilty we had to buy expensive formula (I hate it, it's disgusting and I'm ashamed I had to give it to them), I feel like crap that my house is filthy, Emma is neglected and I forget everything. Tell me what you want, but you can't take my feelings. And I feel like a failure. Because it wasn't supposed to be like this.
At the end of the day, the very very long days, I look back and say we made it. Each day we make it. And I hope that some day my girls will tell me it was okay. That they knew I loved them. That even when I take my stress out on them (unintentionally) or don't have much time to just sit with them that they know I would give my life for them. That I would give every part of myself for them. I hope they know that I love them more than anything.
Hailey had her best day of therapy ever today. Only one huge tantrum then after that it was good steps and hard work. I've been excited to see her improve, even if it isn't as fast as apparently she is supposed to be improving. I'm thankful her therapist is human and talks to me like a hurt mom. That she thinks about what I say to her AFTER our sessions (Emma told me last week that she loves Hannah better ...) that she came up with ways for Emma to play with Hailey to help her be more involved. I'm thankful that more likely than not Hailey will walk in her life. I'm thankful for friends who haven't forgotten me and people willing to go out of their way to help. I'm thankful for a loving husband who has been more than supportive. Who is willing to do whatever it takes to help our Hailey girl without blinking an eye. Who is willing to sacrifice what he wants for what is best. For helping me when he can and for telling me he understands I'm doing my best. Even when I ruin a totally easy recipe. I'm thankful for prayers and a God who loves me despite my never ending faults. He is good.
Thanks for reading, thanks for helping, thanks for caring. It means the world. And I can't wait to tell Hailey when she's older, just how many people love her.
So this week we got to meet another specialist. The Physiatrist. I can't explain technically what he does, but he is essentially a pediatric specialist that focuses on movement (like kinesiology). He is a doctor and sees many kids like Hailey. So the good news ... He said "you know with kids with this condition you wonder will they walk? Won't they walk? -- Record scratch ... pause the quotes for a second ... Jay and I hadn't realized not walking was even on the table as a possibility. Last appointment with neurology was Hailey may grow up to be clumsy ... but she didn't need brain damage for that ... she could've just inherited it from me ... Sir Gimps-alot. So ... that's news. Resume quote ... -- But in her case she will walk. Now whether it's with braces? I don't know? Whether it's with a walker? I don't know. But she will walk." Okay, so trying to be grateful, I'm crying to find out my baby may not walk (remember NOTHING is certain with this damage). He also said that most often kids with this condition fall in the lower end of normal range for IQ. He is extremely confident she will fall in the normal range. Praise God for that too. It saddens me to think that the possibility of her being intellectually superior is much less likely and not probable. That's a weird pill to swallow. But we went to OT today and her therapist said "I'm glad you brought that up," as I was filling her in on our appointment, she said "she is VERY aware of what's going on around her and object permanence ..." Everyone we talk to believes that cognitively Hailey is right there. That is definitely hopeful ... but they all also say that cautiously. It's a "good sign." When I asked the Physiatrist what he meant by she may need a walker - is that a short term thing, for life? What? He said it could be for life ... he doesn't know. Youch. Yes she will walk ... I am grateful ... I am sad that it may only come with the help of a walker for the rest of her life. Again ... this is easy for you ... you just read what I tell you and say oh yay!! Good for her ... For me it's my life. My baby. Permanence. I'm happy ... but crying at the same time. Her hamstrings appear to be a little short ... which can happen with "normal babies" so it's not "telling" but he put in an order for leg braces for her too. We don't have them yet, but Hailey now needs 2 wrist/hand braces, 2 leg braces, KT tape, and another wrap for her arm that I can't think of the name of right now - but it helps to "Supinate her arm and hand." (Supinate means to turn it from palm down to palm up.) All for one baby that doesn't even weight 17 pounds yet.
PT was hard last week as her therapist was sketchy on the doctor's opinion of walking. Talk about making your heart sink. She never contradicted him and after a few moments directed her energy into saying "well ... I just get nervous when doctors put a time frame on walking." Which I never said he did. I suspect this change of direction came after wetness appeared in my eyes to help me feel better. Long story short ... I'm now more confused than ever because I keep getting told one thing only to be told another by someone else. CP (which she hasn't officially be diagnosed with, but everyone is treating her as such) is supposed to be "stagnate," which means it won't get any worse ... come to find out that when kids like Hailey try to walk the tone in their legs INCREASES (which means gets worse) and causes walking to be much harder. Which is part of the reason some kids don't walk. UGH!!!
Honestly that is one of the hardest parts about this process ... what is going on ... can anyone say anything with certainty?? NO. The answer is no. If I have questions I pretty much can't answers and if I do they aren't straightforward and are confusing. I am not an intellectually superior person. Yeah go ahead and yell at me like you all do each week that I'm too hard on myself ... that's fine. The grades my entire life would beg to differ with you. I'm not hard on myself when it's the truth. I've only ever been mediocre scholastically which is why I cry for Hailey because I don't want that struggle for her. But one of my biggest pet peeves is being confused. I hate it. So much. And this process is one big confusion after another. One doctor says this, another specialist says that and everyone says lets wait n see. Well ask my husband I'm equal parts impatient and stubborn. I want my answer and I want it now. I don't want to wait 6 months or a year or 2 years.
Now for the good stuff. Still being blessed ... You guys! How can I Thank everyone enough? I'm baffled and stunned and humbled and grateful. Every time I think we are heading into loneliness ally someone comes around and does something that proves 2 things; 1. That God is keeping His promise and 2. I know the best people in the world. Weather it's not 1 but 2 random acts of kindness in Target or a well timed text or the best card I've gotten in a few weeks. I'm not alone. I said it earlier and I get to say it again. There are 2 things I've never felt this whole time; unloved or alone. You won't let me. And for that ... that is pry the greatest gift of all. Because ... this wasn't how it was supposed to be.
First of all ... I was supposed to have all boys. I know boys, they're easy and I can do boys. I had all girls. What do you do with a girl?? Second, I was supposed to only have 1 baby this last pregnancy. As most of you know when I was pregnant I went in for my 9 week standard OB appointment and congratulatory doctor visit. The in office ultrasound did it's job and showed 1 lil bean in there. Flash forward to my 18 week gender scan ultrasound and bada-bing TWINS. IDENTICAL GIRL TWINS. Proud of Jay for not passing out or throwing up and my beautiful sister-in-law for "calling it" when I was only 10 weeks. Yes I'm not joking she told me it could be twins ... but I guess a fellow mother of identical twin girls would know!! Holy moly ... well okay that's great! But I was supposed to deliver full term naturally and my girls were taken at 35 weeks via emergency c-section. I was supposed to exclusively breast feed and me being stupid I unknowingly ruined my milk supply and have had to supplement with formula. Everything I had planned has completely gone out the window. Everything. Which only proves to the old adage "If you want to make God laugh tell Him your plans!" Oh boy ... in my case I had God in stitches!! But my pride and my feelings have been wrecked. Despite what you think you also told me I'm entitled to my feelings and I have felt like a massive failure these past 12 months. Just because you think I'm doing a "good job" doesn't necessarily make it so. I'm keeping them alive but that's about it. I'm struggling. Greatly. And I'm doing my best ... but my best doesn't feel good enough. I feel like a failure that Hailey even HAS PVL (My kids were supposed to be normal and healthy you know), I feel guilty we had to buy expensive formula (I hate it, it's disgusting and I'm ashamed I had to give it to them), I feel like crap that my house is filthy, Emma is neglected and I forget everything. Tell me what you want, but you can't take my feelings. And I feel like a failure. Because it wasn't supposed to be like this.
At the end of the day, the very very long days, I look back and say we made it. Each day we make it. And I hope that some day my girls will tell me it was okay. That they knew I loved them. That even when I take my stress out on them (unintentionally) or don't have much time to just sit with them that they know I would give my life for them. That I would give every part of myself for them. I hope they know that I love them more than anything.
Hailey had her best day of therapy ever today. Only one huge tantrum then after that it was good steps and hard work. I've been excited to see her improve, even if it isn't as fast as apparently she is supposed to be improving. I'm thankful her therapist is human and talks to me like a hurt mom. That she thinks about what I say to her AFTER our sessions (Emma told me last week that she loves Hannah better ...) that she came up with ways for Emma to play with Hailey to help her be more involved. I'm thankful that more likely than not Hailey will walk in her life. I'm thankful for friends who haven't forgotten me and people willing to go out of their way to help. I'm thankful for a loving husband who has been more than supportive. Who is willing to do whatever it takes to help our Hailey girl without blinking an eye. Who is willing to sacrifice what he wants for what is best. For helping me when he can and for telling me he understands I'm doing my best. Even when I ruin a totally easy recipe. I'm thankful for prayers and a God who loves me despite my never ending faults. He is good.
Thanks for reading, thanks for helping, thanks for caring. It means the world. And I can't wait to tell Hailey when she's older, just how many people love her.
