It would probably be most accurate to say that the stress has been building for months now. Ever since we learned of Blondie’s hemophilia. Sometimes I noticed the stress getting to me, other times I could brush it off and think it wasn’t real.
Well, it’s real and it’s getting to me.
Last week I came across a post entitled, ‘a week defeated’ by Hannah at A Quiver Full Blog. It was just what I needed to hear.
This is where I have been finding myself lately. If only it was just a week…
Well, it’s been longer than that.
I have been believing lies, and it’s a joy-less place to find yourself in.
But, I don’t have to stay there. And I’m working at taking back the joy and life that has been stolen from me.
The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly. John 10:10
Buddy. When I think of you, I smile. What a pleasure you are to be around. You are so willing to help and you care so much for people. Sometimes I’m too hard on you because I think you’ve heard me or that you understand what I’ve said. I’m sorry Buddy for not being clear enough and making sure you understand. Lately, we’ve been talking about doing our best, and you’ve been trying your best at school, having self-control, and not giving up. You challenge me to be a better person. You and Blondie play so awesome together and you even let Happy play with you (most of the time). Button loves you. You are so good at making her laugh.
Blondie. Funny moment of the month for you: your dad was reading you guys a story and you suddenly said to him, “I have to go to the bathroom, pause it!” Clearly you need to watch fewer movies… Besides that, I quite simply can’t get over how amazing you have been with getting your infusions. Wow. Your dad and I’ve been practicing a lot because we are planning on being able to give you your infusions at home. You have been very involved in the whole process, helping us clean the site, put on the tourniquet and the band aids. So far, your Dad and I have both had the chance to give you your infusion when we were in the city for training, and it’s been going very well.
Happy. Your dad and I struggle to keep a straight face around you. Your antics are something else…and you know it… You have what we now call your ‘evil laugh’ which is quite nearly impossible to describe, but cracks us up every time (and on some level makes me worry about what is yet to come). You and Button are the only ones who nap anymore, and the three of us lie down together while I try to convince you to go to sleep. What a goof you are, but was a sweet time it is. I love singing “Twinkle, Twinkle Little Star” and “Jesus Loves Me” with you and watching you fall asleep. I hope I never forget those blue eyes slowly closing as you finally stop moving and relax for a while (a very short while). The other funny thing you’ve been doing lately is referring to Button as “my chubby little baby”. Who can tell me what she’s got herself into in the picture?Button. Oh my, this month we are jumping in the jolly jumper, trying different foods, and making me wonder more and more what you are going to be like. You are such a happy child with bright eyes that follow our every move. You love your daddy (not to mention your siblings) and you get so excited whenever he stops to talk to you. I could cuddle you all day…
Seeing as I haven’t gone into much detail regarding hemophilia up until this point, here is a link to find out more. One thing that differs from the information given is that it states that hemophilia is inherited from the mother. While that is true, 1/3 of hemophiliacs result from a new and spontaneous mutation. At this point, we still do not know if I am a carrier or not (we have no family history) and we are awaiting DNA results. So the mutation occurred in either myself or Blondie, but that is still to be determined.
As for Blondie, he is doing great. He is still on twice a week prophylaxis, but he has no qualms about it. It’s become normal and much less of a stress to deal with. What a blessing that is to my heart that he is relaxed about it. We are now learning how to give him his infusions at home. I get quite the responses when my husband and I joke that while we might not get out on dates much, for ‘fun’ we now sit at home and take turns practicing our venipunture techniques (we take what we can get). Blondie thinks it’s great. Not only is he not getting the pokes, mom is poking dad.
Just last week he got a custom brace for his left leg to try to protect from another knee bleed. Next month he is having an MRI of his knee. While we still hope that after his MRI we might not have to continue with prophylaxis, we want to be prepared to do it at home, and so far things are looking good.
As for the rest of us, we have been doing our best not make a huge deal out of Blondie’s situation, but to include everyone as much as possible. This certainly can be a challenge sometimes as we want to avoid extra trips to the hospital, yet don’t want to become overprotective (we’re still working on this). And in the name of our new ‘normal’ (not to mention making things easier by not having to arrange childcare), this month the rest of the kids began coming along to Blondie’s infusions. The kids handled it well, and their responses to seeing their brother get his injection were really neat. They have a new appreciation and respect for what he has to go through, and it certainly feels like we are in this together.
Though we still have many questions (the biggest of which seems to be to what degree to attempt to bubble wrap the little goofball) and we don’t know what circumstances we will have to deal with in the future; we know we serve a God who will never forsake us, is our strength when we are weak, and gives peace beyond understanding.
Buddy. I still can’t get over how fast my little boy is growing up. I truly enjoy you and being around you. When you set your mind to it, you are a focused determined boy, and other times the slightest thing can distract you. You are an excellent imitator (just like your dad) and you are so animated when you recount things. I love hearing things from your perspective. This month you got your first goal during a hockey tournament. You were so excited! You’ve also almost got a few more goals. Good job little man! I still think you like hockey more because you get to see your buddies than for the game itself, and that’s good with me.
Blondie. One day you asked me if you had to get a needle the next day. I said, “No, not tomorrow, the day after”. You paused, thought for a moment and then said, “In two tomorrows?” I love how kids see things! After one of your last infusions, I was so impressed by how calm you were. When we were walking out to the car, I asked you if you were scared. You said, “No, mom, I wasn’t scared”. Wow. Thank you God, for being our strength and for ministering to Blondie through this whole thing. Blondie you love your baby sister. You still ask to hold her all the time and you take such good care of her. You can easily make her laugh and it’s easy to see that she thinks you are pretty awesome!
Happy. It’s official. I can’t keep up with you. This month we finally managed to move our piano from our rental property to our place and you love it. You’ve watched me play a few times and now mimic me move for move. You sit at the bench, play a bit, sing at the top of your lungs, then proceed to lick your finger and turn the pages while repeating the process. Love. You are also going around singing all the songs from the boys’ music lessons, but sometimes you get the words mixed up a bit. This month, according to you, the song went, “I’m a little monkey, peanut butter sandwich!” We finally managed to teach you to ask for a “Kleenex”, up until now, you would say, “I need a booger.” You’ve watched me put on make up and lip gloss and always want to put a bit on as well. I often find you rummaging in my purse looking for “lips lips” (lip gloss). “Kwiss” means “kiss”. When asking for something you say, “May I you please…” You are way too sweet…
Button. You are rolling!!! Both ways! This is ridiculous! You are pretty impressed with yourself though. Your brothers and sister think it’s your new trick, and they are right. We sit there watching you roll just for fun. You have also discovered your tongue and like sticking it out. What a goof…
Buddy. You’ve been a lot of fun lately… You started “sneaking” around. I keep seeing you out of the corner of my eye trying to hide, sneak up on me or even snatch things right out from under my nose without me seeing you. My favorite part is your complete astonishment that I almost always see you. I told you the other day that I had eyes on the back of my head, and that’s kept you on your toes ever since! I love being a mom…. You also really enjoyed Christmas this year. This is the first year we’ve had those chocolate advent calendars and you surprised me by how well you counted backwards as you counted down to Christmas.
Blondie. You’ve been SO brave! I am so proud of you. You are on twice a week infusions of factor right now and you are doing SO well. Last time you said to me that God is helping you be brave. God is good, little man, He is always there for you, and so far you have seen for yourself how God does answer prayer. You are also a TON of fun. Life isn’t dull when you are around and I have never stopped thanking God for you. Thank you for the joy you bring to our lives!
Happy. Wow, little girl, you’ve brought a whole new level of interesting to our lives. Lately you’ve wanted to be alot more involved in everything from doing the dishes, to laundry, to anything mom is doing. Oh my… Let’s just say you’ve been learning alot lately… The cutest thing that happened this month was one day when I was putting you down for your nap, you said that you wanted to do school (the boys do their school work when you and hopefully your sister nap). So I told you that I’d have a book for your when you woke up. Well you certainly did remember and had a blast starting your first Rod and Staff book (with help from Blondie). In addition, I was asking the boys what a sentence starts with and you were the first one to answer with, “A capital, Mom!”. I didn’t see that coming… Lastly, you got two second molars this month.
Button. Babies are so much fun! This month you started rolling onto your sides a lot. You are able to scootch around in a circle and are pretty impressed with yourself. Your siblings think it’s pretty impressive… You’ve also found your voice. I caught you getting mad at me and “yelling” at me. Silly girl, I’m on to you… You are also mastering grabbing things with your hands, and you found your feet the last time you had a bath. What a joy children are…