Reality
I have written this post in my head a dozen times but always stopped short of typing it up. Why? I don’t like being negative. But, I want to be real so here goes.
What is life like, taking care of a child with Tay Sachs? I suppose all of us affected by this disease would answer somewhat differently, somewhat the same. Here’s my response. It is HARD. It is stressful, exhausting, monotonous, heartbreaking and overwhelming. We have good days and bad. Carmen has good days and bad.
It is not so much that Carmen’s care is so hard that we cannot do it. We can take care of Carmen. And I think we do a really good job! But it is constant. If I take a shower after Dave has left for work, I set her up in the bathroom and keep one eye on her to make sure she is breathing and not choking. We pretty much stay on the main floor during the day because that is where we set up Carmen for the day. During the week, I stay at home almost all of the time. My days consist of various medicines and therapies and nurse visits.
For someone who used to go out every single day, this has been a hard adjustment. But, getting Carmen out is not an easy task. To go anywhere, whether that is to the park or a neighborhood walk or to the mall, Carmen needs oxygen tanks, suction machine, feeding pump and bag (if it is time for a feeding), extra clothes, burp clothes, bibs, Chux pads (Carmen’s diarrhea does not wait for an opportune time!), Diastat in case she has a big seizure, and her pediatric Kid Kart stroller. As Carmen gets heavier, carrying her around is more difficult too. She is 33 lbs. but has no muscle tone so that feels more like 50 lbs!
In addition to the daily care, we live with the reality that Carmen is dying. She has given us many scares in the past few months. When you wake up every morning and wonder if today is the day, you start living in a state of constant stress. Perhaps Carmen will remain stable for a long while and this intense stress will ease. We also live with extreme emotions. Part of us wants Carmen to live and live. The thought of Carmen dying is agonizing. But the other part of us hates what this disease has done to her. And Heaven will be so wonderful for her! So, we try to make every decision based on what is most comfortable for Carmen and not worry about how long she will live.
I will be completely honest and say that I have days where I do NOT want to be doing this anymore. I suppose I wouldn’t be human if I didn’t have those days. I know those feelings are selfish. I would love to have my normal life back. But, I have someone who needs me very, very much. Actually two little someones! (OK, three, counting Dave!) I pray every morning for the strength to not only get through the day but to get through it well.
For the past few months, we have dealt with one issue after another. Every couple of months we get Carmen’s seizures under control and then they start up again. By “under control” I mean stopping the grand mal seizures. We have stopped worrying about every other kind because they keep coming despite three different seizure medications. Every other week, Carmen gets a fever and goes back on an antibiotic. She has had chronic diarrhea for 6 weeks now. She is on constant oxygen. If it is not one thing, it is another.
I get a lot of, “I could never do what you are doing.” Well, sure you could. We wouldn’t have said we could have done this either. But you do what you have to do. And you try your best to do it with a good attitude. We are not saints. We are simply parents doing the best we can.
Perhaps the hardest part for me is the reality for Lauren. We’ve started trying to do Family Nights and other fun indoor activities so that Lauren has some fun in her life. I am SO glad she has school, a place to go just for her. I often wonder how Carmen’s illness will affect Lauren in the long run. I hope and pray she develops a compassionate character and not that she is bitter and angry that we spent so much time caring for Carmen.
Last night we decided that something has to change. We have started working on a plan. Two nights per week one of Carmen’s night nurses will be coming from 10:30pm-10:30am so that I can get out of the house in the morning. And, Dave is hoping to spend two afternoons per month working from home so that I can take Lauren out. And, a few friends volunteered to watch Carmen during lunchtime so I can take Lauren out to lunch occasionally. We are super blessed to have friends who are bringing Lauren home from school. This is HUGE. Thank you. Two mornings per week a home health aide comes and sits with Carmen so I can run around and do laundry or clean up or take a shower.
Whew. I just reread all of this and I don’t feel so good about it. But, I am going to post it anyway. I read somewhere that along with the sorrowful moments of this disease comes a surprising amount of joyful moments. (I think Eric, Rachaeli’s dad, said this!) I try to focus more on the joyful moments, particularly in my journal. Well, you are getting a taste of the sorrowful moments today!
Lana, we are praying for you. You sound so exhausted. I wish we were closer. I would love to give you a day just for yourself. I know you are trusting God to know what your future holds. When we are going through bad times, I try to remember that this life is just a moment in eternity. We don’t always understand why things happen the way they do but there is a reason for it. God is changing your whole family because of this. He has a perfect plan. It will be wonderful to see what God has is store for your family. The family has touched so many lives already. Ones that you know of and ones that you don’t know of. Many people in our church are following your journals. So many are praying for you. I keep hearing Grandma Brain singing her little song, “Cheer up you saints of God, there’s nothing to worry about. Nothing to make you feel afraid, nothing to make you doubt.” When your down, think of her singing that. I am sure she is in heaven waiting to meet her granddaughter and singing that song. What a glorious reuinon, when we are all there together. Remember, this is just a moment. We love you.
Lana, I appreciate your honesty and openness in this post. It is helpful to all of us to see the reality of your days of caring for Carmen and to know better what your needs are. Thanks for sharing and thanks for being such a great mom to my granddaughters. I will always pray for you, Dave, and the girls.
Love, Mom
Lana-
Please know that your blogs like this are a reminder to pray for you and Carmen all the more. Many of us are not in the place you are in, so these reminders drive us to our knees all the more.
thank you for posting this-your real-ness is inspiring to many. I cannot imagine what you experience on a daily basis-especially with another young child-know that you are in my prayers-from one mom to another.
Amy
We love you so much and….I can’t even think of anything else to say right now…..I am so glad that God has brought Carmen into our family and given all of us the sweetest blessing to love….I am sorry that she is struggling with this disease and that it is so hard for you….I wish I was there to walk side by side with you through this rather than just be a voice on the phone from far away…I love you…We love you all…and we are praying as always. Thank you for sharing your heart.
I think for me the indescribable burden is knowing that literally this helpless child’s life is in my hands. What if I miss something? Right now Amelia has a fever, and her breathing is fast and loud. I think she’s fine. It’s a judgement call that I have to make everyday. I don’t have any medical training. I was an accountant in my pre-mom life – pretty much the opposite of all of this. What if I’m wrong? What if she dies when I could have done something to save her? What if she dies because I was asleep or in the shower? I can completely understand why some parents choose little medical intervention and just say “it’s in God’s hands now.” Some days this burden is too much to bear. But I have to say, I wouldn’t give this burden up if it means I get to keep Amelia here with me. It’s worth it. At least you have a partner to share the burden with. It could be worse. You could be all alone standing next to your daughter’s crib at two in the morning watching her chest go up and down wondering if she’s okay, knowing that the responsibility is yours alone.
We are not walking in your moccasins, but you are in our hearts and prayers. You are awesome! Keep sharing!
Love,
Sandi
http://www.jerryandsandirectenwald.com
Lana, writing is a great outlet and sometimes its so much easier to write what we cannot say outloud. You need this outlet and we need to hear you. Carmen is a loving gift from God and you are a very loving and generous mom to her (and Lauren). Thank you for your honesty and the reality of this disease, you have opened so many eyes with your writing. Thank you for allowing us to read it and keeping us informed, prayers for peace and comfort for your family.
Sarah,
You are right. I could be doing this alone.
I totally know how you feel about having so much responsibility. Carmen came down with RSV back in April and I had no idea. I waltzed into the doctor’s office to tell him that I wanted a referral to an ENT because of Carmen’s loud stridor. Instead, he called 911 and sent us straight to the hospital! I felt horrid! I remember later talking to Carmen’s pediatrician and telling him how awful I felt that Carmen was so sick and I didn’t know. He said, “How could you have known????” He’s right. I am so glad to have Hospice involved now because it’s not just Dave and I trying to figure this out.
Sarah, I am praying for you, everday. Please give your girls hugs from us!
Lana, it’s ok to be honest about your feeling. I was while Charles was alive and I still am now that he is gone. The life we live while our children are still here is so difficult in so many ways, yet so rewarding. I miss Charles everyday all day long, but, I can honestly say that he is in such a better place and so am I. Please don’t be to hard on yourself. I think deep down inside most of us understand in some way how you feel. You are a great woman, mother and wife. God bless you!
Thanks for being honest. The last thing you need is to have to put on a happy/saintly face for other people to see. I’m glad you are going to get some time to yourself. I just have one little one with no issues at home and I feel like I’m going to go nuts if I don’t get out of the house every day, so I can only imagine the caged feeling you must have sometimes. Hang in there and we’ll keep praying for all of you. Sarah Meisenhelter
Lana,
I agree with the others, it’s so important for us out here to realize what you LIVE on a day to day basis. It makes my prayers to God that much clearer.
I love your honesty. Thank you for your blog. Your strength is so inspiring.
Lana:
Every time I read your blog I wonder how you feel and how you are dealing with it and how you can keep up with Carmen, your family and yourself. You are only human. I don’t think that post read negatively at all. It is so real and raw and I hope someday that Lauren is able to read it and reflect on this time and really understand the wonderful person that you are. You are a 1000X better mother than I could ever be and I have very few challenges. As always, God bless you and your family and many, many hugs to you. You touch so many lives and influence so many through this blog. Thank you for posting this.
O Lana –
Don’t be afraid to be real – - we need to know the truth so we can make our prayers specific.
BTW – In my book, you are a Super Hero!!! And I love you so!!!! And I can’t think of a single Biblical super hero who didn’t have tough times and times of discouragement and weariness – - so just hang in – - “this too shall pass” – sooner than we think or even want.
And, of course, I love David, too. You are both inspirational and Doug and I are SO VERY PROUD of you both – and I mean that in a very positive way (not that puffed up stuff!!)
And I had better add this comment, since I know the rest of you “kids” read this blog: Your dad and I continually marvel that God has been faithful and each of you has chosen to get your priorities “right” – putting God first, your families second, and seeking to be Godly and honorable people. You are each every parents hope and joy!! We are SO BLESSED!!
When I read your entry I felt like it could have been me writing it. I soooo understand what you are going through. Writing things down for others to read has always been thrapeutic for me…..you should feel good about what you wrote,it came from your heart. People always do say “I could never do all that you do”. What they don’t realize is that if it was their child that, yes, they could do it….that is how deep our love is. Stay strong my friend. (((HUGS)))
Heidi
That’s where God reveals Himself for Who He really is and shows Himself to be real (or maybe it’s just where we can best see that He is because we really need Him to be and we’re honest about that need): in the realities of life in this fallen world.
I’m finding that the depth of joy is at least equal to the depth of sorrow known… and that they are not mutually exclusive.
I’m praying for God to meet each of you at each point of need in this journey… and I am confident that He is and will continue to do so because I am convinced that He is faithful.
I love you. CYH.
Lana, I have been reading your blog for a couple of months now and this is my first comment. You have what looks like an amazing support system, I know how much that is needed. Thank you for posting such true, heartfelt emotions.
Our daughter, we adopted from Guatemala as well, came home with some special needs. I do know that the Lord has entrusted us with these amazing children and we love them and care for them in the eyes of the Lord.
I can’t imagine this journey you are going through, but I praise you for your strength and courage to share it with all of us.
Suzanne
Lana,
Your post was pure and honest. I am praying for all of you. God’s grace is so incredible. He is being glorified through your trial. I also pray that He will draw more people to Himself through your family’s experience. May the love of Jesus continue to sustain you all.
In Him,
Matthew
Lana,
I can so relate to what you are saying. It was hard, but for me I’m sad to say, it’s harder now. I do know Blake is in a better place….but it hurts so much.
I remember feeling as you do…each moment throughout the day having panic attacks wondering if he was still breathing. For Blake, that went on for 8 months. It was very stressful. It did get easier tho during that time and I was able to relax with the new ways in which Blake was breathing. I hope you will be able to relax more also. And the “new” problem of the week was also a challenge. I also agree, everyone would do just as we all do with our special kids, we love them and care for them with all of our hearts.
I have been praying for you daily as I know so much of what you are experiencing. And since we are being honest, I admit that when I check your site I feel a bit of stress not knowing what the news might be.
My advice: Get the breaks you need to fill you and love on Carmen every chance you get. Give her a kiss for me!
Denise (mom to Blake)
Hi Lana, Sometimes I feel like I have to apoligize because I really can’t read long writings and understand them so I try to remember a part and write back about it. So this is about you feeling selfish a little for wanting your normal life back. Four and a half years ago I got hurt and my wife has been right here with me every day unless she is at work, which is alot since I can’t work, she is doing it all. Some time ago she told me she needs to live, get out some, and have fun but she felt like she was being selfish. I can’t go out in public places, I am home all day every day and I hate it too but I have no choice so I told her to go, have fun. Since then she has gone to a concert with our son, she is going to a crab feast with her friend and soon on a two day cruise with her friend. She is happy, laughing, and I enjoy hearing her stories. She is not being selfish and neither are you. You love and care for your children best as any mom could and believe me it will do you all some good for you to have a little fun. come home happy, and tell stories. I hope this makes sense. God bless. In Christ, Joe
Everything you said was from your heart which makes it totally fine. I do not know you personally, but from your blog I find you to be an extraordinary woman, mother, wife, and care giver. I will pray for you during these struggles. I pray that Lauren will grow up and learn from you and have a HUGE heart, and be proud of her mom for being such a strong person!
I got a link from a friend to this blog page this morning, I hope it’s okay to post it here. I thought of all of you who commented to Lana’s journal page and especially of those of you who find yourselves struggling with life right now.
I loved the entry for today I hope that it will encourage all of you….
http://anerissara.blogspot.com/2008/08/through-lens.html
Something that my family has been doing lately is trying to see the blessing in ALL things…it’s often hard in the midst of trials of any size, life happens and we all to often see the “negative” side and forget that there is blessing in each moment.
Little ones wet the bed at night and this adds more laundry to the pile that has already been waiting to be done…but she’s here.
The good car breaks down, there is no money to fix it…but we have a run down beater that works enough to get us around.
Husband is laid off of work with little in reserve…but he’s home all day with us.
There is a new little one joining the family, one that will be coming with lots of challenges…but he will be our new son.
It is fall. The breezes and colors that fall brings are works of God’s hand showing us that He is here. He is here in the big things and the little things. He is here and He has NOT forgotten any of us. He is waiting for us…waiting for us to see that He is here…waiting for us not to forget that He is here…waiting for us to call upon His name again, although, some for the first time.
He has promised that when we call upon His name He will be there. He is holding us in His hand, even when we can’t see it…even when we don’t feel it.
Praying for each of you. I hope you have a blessed day.
Lana,
You have presented your situation as you feel it! I hope you don’t feel badly for long for letting them air. You are in extraordinary circumstances and you are being asked to accomplish extraordinary things.
My great aunt Vivian’s husband was permanently disabled at a textile mill when he was relatively young back in the 30′s before there was worker’s compensation. She had to go to work dedicate her life to making him comfortable and finding a way to make a new life. Her attitude was very much like yours–she didn’t choose her life, but she had to move forward. It didn’t solve anything to look backward and ask why (although I’m sure she had her moments), but when I talked to her about it when she was in her ’80′s, she said very simply, “sometimes that’s just the way life is. God hands you things and you do the best you can.” Simple, but true. You’re doing the best you can–better than anyone else could for your girls.
And Mr. Jordan has a made a good point in his comment…you being happy will have nothing but a good effect on your girls. So doing something for yourself is nothing to feel guilty over. Hugs from Georgia.
Allison
Lana, God has given you and Dave the gift of being to communicate with others in a remarkable way. We all need to be honest about our feelings, honest with ourselves and honest with others.
I have a Grandaughter that is 21 years old now. Trying not to get into the medical aspect of it too deeply, she was born with several days of meconium aspiration and her lungs were non-functioning. She was airlifted from Albany Medical Hospital to Children’s in Washington D.C. and put on ECKMO therapy. (Extracoporial membrane oxygenation). Not sure I spelled that correctly. It is a like a heart-lung machine but it was just for her lungs.
Because of complications on the machine she is legally blind, has mild Cerebral Palsy and a seizure disorder. She is also a slow learner but does learn; not being able to see well to read has been a problem in her progress. She did graduate from CVCS with an IEP and a special program. Your Mom and Dad know her well. The seizures have been the biggest problem and like Carmen, she is on several medications, usually as many as 3 or 4 at a time. Lamictal Keppra, Dilantin,and Diastat are very familiar words in our family. She also has several different types of seizures and there is not any indication of what type will show up at any given time. They can range from just staring to complete Grand Mal’s. They have never been able to find a combination of meds that would take care of the problem. As she got older they became much worse and much more frequent.
Finally last January they did brain surgery to see what might be accomplished that way. It was a terrifying time. I hesitate to talk about it much in case anyone else is facing it, I don’t wish to frighten them, but I would always regard it as a total “last ditch effort”. She is better from the seizure aspect but they certainly are not gone; she has had 2 Grand Mal’s and appears to still have a lot of the absence ones.. OF course, those are not hard to deal with and come and go quickly. but since the surgery she has lost the use of her right leg. She is in therapy 2 days a week and is making progress but no one knows for sure if she will regain her normal use of that leg. She also has not passed completely out since the surgery. On a comparison basis she is much better off than she was a year ago now, except for the walking.
I guess what I am getting at with this long tale is that my daughter has also occasionally been frustrated. Like you, they cannot leave her alone or go anywhere without her, without having someone there who knows her seizures and knows what to do. They never make firm plans to do anything, it all depends on Deidre’s day, good or bad. They don’t do a lot together unless my other daughter or I can be with her. She is an only child and they love her without reservation and thank God that they have her. They were not able to get pregnant for almost 10 years, but I know that looking forward to things like a wedding and Grandchildren and other special things in life are not there for them. In the long run tho, we have all learned compassion ( not pity), pride in every thing she can accomplish and a closeness to God that we might have not recognized as clearly. I don’t look at my daughter as a Saint, I just see her as a Mommy who loves her child and would go through fire for her, and I see you as that same kind of Mommy. God knows who His special children are and He knows what special adults will take the best care of his little ones. I am praying daily for all of you, and I know that NY Grandma and Grandpa are praying for Deidre as well. Sorry this is so long, I have tried to pare it down but it was hard to explain.
And – I must add to Barb’s comments – Deidre has touched more people than you can imagine – beyond her family. She went through school teaching other children to be more compassionate and kind!! She has always brought cheer and a bright smile wherever she goes. When you consider she was not offered any hope for a future when she was born – and see that she has graduated from high school and is able to participate in community activities, etc – - -well – what can I say!!
Thanks for sharing, Barb!! Deidre is the person she is today because of her family – all of you! and, because God chose to “confound the wise” through a little child!
I echo all the above comments. I appreciate your honesty so much. And blogs such as these truly do help us remember to get on our knees for you much more. I hope it works out for me to come watch Carmen some day so you can take Lauren to lunch. love, Wendy