As we all know by now, I am not the committed blogger that I once was or hope to be. When Gabe was in the hospital, I updated his Carepage every single day! Now I just don't have the time or mostly the motivation after a long day. I have to admit as I go through the day, several times the thought might pop in my head that Hey, this would be a great thing to blog about, this is what I should say, blah blah blah. Yet it just never happens. Yes, I totally envy MckMama who is such a blog queen! I don't know how she finds the time to blog daily with 4 little ones. After I had Faith and Gabe, I recall my brain being mush for the first 3 months and I couldn't even come up with a coherent sentence, so her wit and creativity is amazing!
Okay, so the point of this entry is not to make more excuses and apologies (which I seem to be doing every time anymore...) nor is it to talk about MckMama (whom I obviously adore).
I just thought I'd be very transparent and honest and let you know how our family is REALLY doing. You know, the things not oft' shared or spoken of.
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I don't know why the mental energy isn't there to discuss really deep matters anymore... seems like all I'm able to spit out is the bare necessities - facts, updates, etc - but when I don't talk about the struggles we have or the meditations of our hearts I feel like I'm cheating you all; you are honestly my friends and I trust you (those whom I know are reading, all you other lurkers, I'm making my suspicious face at you right now) :).
Truth be told, life is a rollercoaster ride. Literally from day to day, I can go from extreme happiness and contentment to extreme dispair and anxiety about the situation. One day, all it takes is a smile from Gabe and the joy of holding him in my lap and witnessing him doing new things to wipe away all my worries. The next day, anxiety can creep in and the reality of the situation slaps me in the face; my son is on life support, he breathes through the use of a machine, it shouldn't be this way, is this his life?, what if things had been different...
Our family is enjoying a wonderful time of 'togetherness,' the girls have completely adjusted to having our family at home together again and are very happy little girls. Gabe has made significant improvements:
~ in his immune system, he hasn't been sick or needing antibiotics since early December!!!
~ in his endocrine system, he's off Hydrocortisone (his steroid!)
~ in his heart / pulmonary hypertension (he is being weaned off the Viagra for his heart. one less medication!)
~ in being able to take him places. While it is still 'no small feat' to take him anywhere (wish I could just throw him in the car like Brooke or Faith), it is nowhere as difficult and we have some very exciting vacations/getaways planned in the next few months!!!!
Yet, the obvious setback that stares us in the faces..... his brain and his neurological state. This is the one area that I repeatedly ask, "Why? Why? Why?" Why can't he breathe on his own?? He suffered some type of brain injury - if it was SO significant that he completely lost the ability to breathe, wouldn't you think the doctors would be able to pinpoint what was the cause? Yet we still don't know; we have no answers to why he went into the coma and what exactly did the damage to his brain.
He has obviously regained some functions - in June '07 he couldn't even move or open his eyes; now he has reflexes, the ability to move his extremities, to open his eyes, turn his head, laugh, smile, coo, cough, sneeze, etc. Yet, why can't he breathe?? You hear about these people who wake up out of comas for days --> years and they do not remain on ventilators. So this question haunts me most days.
Don't get me wrong, some days Shaun and I go about our business, tending to the needs of the kids and work, and we are too busy to sit around and think about why things are the way they are. Sometimes it's busy for weeks on end and we don't have time to stop and reflect. But lately I've been feeling it creeping up, probably because of all the good news in other areas of his body.
Some days this journey can feel so lonely and it is so amazing to know you all are going to be there for me, even if it is just a comment, knowing that there are those who care... it makes a difference (I love hearing from you non-trach/special needs friends just as much as my fellow trach mom friends). I was blessed by a friend coming by tonight to spend time with Gabe. She wants to learn his care (luckily she's already a nurse so she's got a slight medical lead) so she can stay with him while Shaun and I and/or the girls can get out.
This song that I often hear on the radio was fitting for the mood of this entry. When it feels like no one cares or can even comprehend the feelings I'm feeling, and I just keep it in for months (as I've done on the blog), it helps me to remember that there is One who understands perfectly. And that He uses people to be anchors to me, and to each other. Love you all!
The greatest commandments:
“You shall love the Lord your God with your whole heart, with your whole soul, and with all your mind” (Deuteronomy 6:5). “This is the greatest and first commandment. The second is like it: ‘You shall love your neighbor as yourself.’ (Leviticus 19:18).
Shared Struggles The Documentary
2 months ago
6 comments:
Wow Rachel, thank you for opening yourself up that way again. I know it is hard to do, especially after the days (and nights) you have!
I am so glad Gabe is making improvements. Way to go! He sure is a strong fighter!
I also understand your pain of wondering why certain things are the way they are for him. I can relate, if only on a much smaller scale. Marissa now needs the trach only for one reason: her small recessed lower jaw. Funny thing is, this is a family trait. My older brother had major ortho work to correct this problem. I see SO many people in the world with small recessed lower jaws and they never needed a trach. Why Marissa? And, in my opinion, her jaw is not even that recessed any more.
I know your Gabe has much more significant issues, but I can still understand your question of why.
Thank you for that song. It is beautiful.
I hope you get some sleep tonight friend,
Alicia
Rachel, I don't know about you, but I didn't sign up for, nor was I ever lead to believe that the trach and vent were for life. I had hope that this was all temporary and eventually, we'd be able to dump all of the medical equpiment and get on with our lives. I see it day in and day out on the trach board -- progress. Kids getting off the vent and getting their trachs out. It's difficult to give up the hope that this will all go away someday and we'll be a typical family. Without question, we can handle this. We've learned the medical jargon, the medical care and we know the ins and outs of every friggin bureaucracy we encounter in caring for our kids. We need those moments in time where we can just stop and enjoy our child for who he is, at that moment. But having to constantly redefine what we hope for when it comes to our kids is tough and it makes me mad that I have to keep lowering my expectations. Yes, it is what it is, but that doesn't keep us from wanting more, aching for more. The good moments take us to the top of the roller coaster, the big pictures brings us down - and fast. I don't know how to get off the roller coaster, I don't guess we ever can. We just learn to stop and enjoy more of the moments and keep ourselves from thinking too far into the future. It's the only way to survive this ... moment to moment.
Hugs
Ann
Sometimes it feels good to get everything your feeling out in words on a page, or a computer screen, or whatever it is. Your a wonderful mother with each of the sacrifices you make every day for Gabe. We are praying for you every day. Mikan says hi to Gabe.
Jenna
Rachel,
Seriously, If I knew where you lived I would come to your house tomorrow and Give you a box of chocolate and a hug.
We get it!
I know it helps me to open up even if half of my readers don't get it.
Thanks for putting into words how we sometimes all feel. It's freeing to express your struggles and sorrows.
Realize Gabe is thankful that you are his mom. I believe our kids choose their parents. He's better because of you and your husband.
PM me if you want to talk more or heck you could call me without the lond distance rates.
((HUGS))
I didn't know if I should comment or not since I'm not a trach Mom, but I wouldn't feel right if I didn't offer my support and friendship to you. Yes, my heart aches for you. I wish I could hug you, I know you need one.
Let me say that you are an awesome mother. I know you didn't sign up for this, nor do you have a choice but to do what you do. I think you handle it with grace and love. You inspire us with the way you do what you do, your attitude. You have every right to ask "why?"
You're all in my prayers
What supply company do you use? What will you not be able to get? We have some extras that I could give you. Let me know
Dana
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