Vacation is always a bit of a reality check for me. I guess it probably is for every parent of young
children. You go away from home, hoping
to enjoy each other and get away from daily stresses. When you get there, though, you have to take
care of your family, but do it without all of the familiarity of home (and in our case without the adaptive equipment and the hired helpers). It is truly exhausting.
The difference for our situation in comparison with that of other parents of young children is that with other families, the young children will grow into older children. Their needs will change and while the parenting and responsibility will remain (for a time) the minute to minute needs will cease. Eventually the children will be independent and the parents will have to redefine their lives without children at home.
Our 9 year old still needs us. She needs guidance and direction. She needs us to set an example every day of looking to the Lord for strength and endurance. She needs to know that we are here to listen and she needs us to be ultimately responsible for her time and activities. Truly though, our role in her life is already shrinking. Our 9 year old chooses many of her daily activities. She feeds herself. She drinks when she is thirsty. She reads to herself. She walks and runs where she wants to go. She has relationships with other people (completely separate of us, her parents). She talks and interacts with many other people during her day. She has friends. At times she chooses who she prefers to spend time with and where. She shares her thoughts and opinions very eloquently in written English and verbal English and she shares those same opinions functionally in German. During the school year she is responsible for her own schoolwork.
Our 2 year old is gaining some of her sister’s same independence. She shares her opinions very vocally in English. She can run and walk where she likes. She grows and changes and demands her independence in new ways daily. (I pray every day for God’s guiding wisdom in how to teach obedience to this wee person with such great will).
The difference for our situation in comparison with that of other parents of young children is that with other families, the young children will grow into older children. Their needs will change and while the parenting and responsibility will remain (for a time) the minute to minute needs will cease. Eventually the children will be independent and the parents will have to redefine their lives without children at home.
Our 9 year old still needs us. She needs guidance and direction. She needs us to set an example every day of looking to the Lord for strength and endurance. She needs to know that we are here to listen and she needs us to be ultimately responsible for her time and activities. Truly though, our role in her life is already shrinking. Our 9 year old chooses many of her daily activities. She feeds herself. She drinks when she is thirsty. She reads to herself. She walks and runs where she wants to go. She has relationships with other people (completely separate of us, her parents). She talks and interacts with many other people during her day. She has friends. At times she chooses who she prefers to spend time with and where. She shares her thoughts and opinions very eloquently in written English and verbal English and she shares those same opinions functionally in German. During the school year she is responsible for her own schoolwork.
Our 2 year old is gaining some of her sister’s same independence. She shares her opinions very vocally in English. She can run and walk where she likes. She grows and changes and demands her independence in new ways daily. (I pray every day for God’s guiding wisdom in how to teach obedience to this wee person with such great will).
When I walk into a room and Liam sees me, his eyes and his
entire face light up. I am his favorite person.
He sees me and he is filled with happiness.
For 40 weeks I carried him. Then
for 32 months I nursed him (10-12 times in every 24 hour period for the whole
time). I have held and sung and loved
him through illness after illness- sometimes all night, for days and days. I have put him to bed by holding him or
rubbing his back nearly every night for 7 years. If he wakes in the night, he cannot self-soothe. I am the person who soothes him. I have fed him 4-6 drinks a day, every day
for the 4 years since weaning. I have
fed him the majority of his meals for the past 7 years. Every bite.
I have given him baths. I have
changed about 5 diapers a day for 7 years.
If Liam wants to go somewhere
that he cannot crawl, I have to carry him.
If he wants to get something he cannot reach, I get it for him. All of this he does not ask me to do with
words. I have to know what he wants
because he tells me with his eyes. (And thankfully Juerg has done quite a lot of it too. I sure couldn't have done it without him!) Liam depends on me
and needs me with an intensity that my girls do not. I don’t say this because I want applause or
for someone to say I am a hero. Every
loving mother would do the same for her child if he needed it. I say this to explain why vacation is so sobering.
Even on vacation, Liam must have every single daily need met by Juerg or me (or someone else). We have to be thinking ahead about his needs and how to satisfy them every minute that we are not actually administering drinks, food, etc. Taking Liam with us requires special packing. Liam needs his special toys and books (which are bulky!). He cannot just color or play with the toys that are available. We have to pack with possible illnesses in mind. He needs diapers that cannot be purchased just anywhere.
As we are vacationing with all of our relatives (each a “typical” family with neurotypical children) I begin to think. I watch Juerg's parents and all of the "freedom" that they live with as two parents whose kids have all grown up and gotten married. They come and go as they please. They work. They vacation. They garden. They go to social things. They only need to worry about each other and themselves. As I give Liam drink after drink… As I worry about heat, cold, bugs, etc… As I try to find foods that will be easily swallowed… As I try to be sure he is happy, exercising, occupied, included… As we are out and about and I try to find appropriate place to diaper such a big boy who cannot stand… I think of how much easier my 2 year old is and how incredibly independent my 9 year old is… And how if Liam were a typical almost 7… We might actually RELAX on vacation. I wonder if we will ever relax again? And then I think that even when all the children are grown, we will be feeding, diapering, and guessing Liam’s needs. We will be managing his equipment. Liam will be bigger, stronger, very likely more medically involved. I feel overwhelmed. Once again, I feel that God has given me too much. And again, I consider Job and how much I would prefer to have a good run. Away. I love Liam. His smile and his tender, sweet ways are a light in my days. I don't want to live without him. It is just that when I look ahead at the years, the future feels very scary. (Oh don’t I sound like a fun vacationer?)
Even on vacation, Liam must have every single daily need met by Juerg or me (or someone else). We have to be thinking ahead about his needs and how to satisfy them every minute that we are not actually administering drinks, food, etc. Taking Liam with us requires special packing. Liam needs his special toys and books (which are bulky!). He cannot just color or play with the toys that are available. We have to pack with possible illnesses in mind. He needs diapers that cannot be purchased just anywhere.
As we are vacationing with all of our relatives (each a “typical” family with neurotypical children) I begin to think. I watch Juerg's parents and all of the "freedom" that they live with as two parents whose kids have all grown up and gotten married. They come and go as they please. They work. They vacation. They garden. They go to social things. They only need to worry about each other and themselves. As I give Liam drink after drink… As I worry about heat, cold, bugs, etc… As I try to find foods that will be easily swallowed… As I try to be sure he is happy, exercising, occupied, included… As we are out and about and I try to find appropriate place to diaper such a big boy who cannot stand… I think of how much easier my 2 year old is and how incredibly independent my 9 year old is… And how if Liam were a typical almost 7… We might actually RELAX on vacation. I wonder if we will ever relax again? And then I think that even when all the children are grown, we will be feeding, diapering, and guessing Liam’s needs. We will be managing his equipment. Liam will be bigger, stronger, very likely more medically involved. I feel overwhelmed. Once again, I feel that God has given me too much. And again, I consider Job and how much I would prefer to have a good run. Away. I love Liam. His smile and his tender, sweet ways are a light in my days. I don't want to live without him. It is just that when I look ahead at the years, the future feels very scary. (Oh don’t I sound like a fun vacationer?)
As I think, I stop feeling sorry for myself about the scary future full of work and lacking relaxation and instead wonder about Liam’s future-
someday when we are no longer here, can we honestly ask anyone to commit to care for him? It is a
completely different question than who would care for our girls. Our
girls could just fit into someone else’s life. They feed
themselves. They drink on their own. They are continent. They
don’t require the kind of medical and educational advocacy that Liam
does. They will grow up and become self-sufficient. Caring
for Liam will be a life-long commitment. It requires that someone is
thinking about him and planning for him every minute of every day. How
much he will drink and when? What he
will eat? How? Where? When and where will he be diapered? What does he want to do? What doesn’t he want
to do? What should he do? On and on.
These are the thoughts that I obsessed and worried about for several days of this trip and I prayed that God would help me to live in the moment. Being the amazing God that he is, his answer was far different than helping me to live in the moment. His answer came in the way that I saw the Heyn family rally to care for Juerg’s Oma.
Oma is this incredible lady who lived through 2 world wars in her very own backyard. She raised 6 kids. She rode her bicycle until she was in her 80s. Her outlook on life is inspiring and amazing.
Oma is in her 90s now, she needs lots of help. Her memory is failing and so is her body. Juerg’s dad and his siblings/spouses all take care of her and do so with love. Oma is at every family event. She is made comfortable. She is well taken care of. And it is obvious that she is so very loved that it isn’t an imposition to anyone. They want to care for her. Watching the family easily accommodate her rest time and her physical needs was such a touching example to me of the Lord’s love. They never stopped at doing just what she needed though. When the day was hot, she had a cool bucket of water to put her feet in and a beer to drink (her favorite). When she asked the same question 15 minutes after she had asked it, the reply was always loving and complete. Oma is confused about things and yet she is never left on the sidelines. At family dinner for 25, her seat was right in the middle. When the kids are swimming, she gets a poolside seat so she can enjoy her great grandkids. The family just naturally goes above and beyond in caring for her because they love her.
Watching this loving care for Oma made me realize that I truly need not worry about Liam ‘s future. Even if I am not here to manage Liam’s healthcare, love him through every illness, organize his days and be his mommy, I have a Lord who loves his sweet child, Liam more than I do. That Lord loves Liam more than all the Heyns love Oma. That Lord was gracious enough to give me a picture of the earthly love that flows from a heart filled with Jesus. I know that Liam is loved by so many would be well loved even in my absence. Of course I will make plans and try to be responsible, but my heart will rest in the Lord. What a blessing we have in our great God!
These are the thoughts that I obsessed and worried about for several days of this trip and I prayed that God would help me to live in the moment. Being the amazing God that he is, his answer was far different than helping me to live in the moment. His answer came in the way that I saw the Heyn family rally to care for Juerg’s Oma.
Oma is this incredible lady who lived through 2 world wars in her very own backyard. She raised 6 kids. She rode her bicycle until she was in her 80s. Her outlook on life is inspiring and amazing.
Oma is in her 90s now, she needs lots of help. Her memory is failing and so is her body. Juerg’s dad and his siblings/spouses all take care of her and do so with love. Oma is at every family event. She is made comfortable. She is well taken care of. And it is obvious that she is so very loved that it isn’t an imposition to anyone. They want to care for her. Watching the family easily accommodate her rest time and her physical needs was such a touching example to me of the Lord’s love. They never stopped at doing just what she needed though. When the day was hot, she had a cool bucket of water to put her feet in and a beer to drink (her favorite). When she asked the same question 15 minutes after she had asked it, the reply was always loving and complete. Oma is confused about things and yet she is never left on the sidelines. At family dinner for 25, her seat was right in the middle. When the kids are swimming, she gets a poolside seat so she can enjoy her great grandkids. The family just naturally goes above and beyond in caring for her because they love her.
Watching this loving care for Oma made me realize that I truly need not worry about Liam ‘s future. Even if I am not here to manage Liam’s healthcare, love him through every illness, organize his days and be his mommy, I have a Lord who loves his sweet child, Liam more than I do. That Lord loves Liam more than all the Heyns love Oma. That Lord was gracious enough to give me a picture of the earthly love that flows from a heart filled with Jesus. I know that Liam is loved by so many would be well loved even in my absence. Of course I will make plans and try to be responsible, but my heart will rest in the Lord. What a blessing we have in our great God!
Psalm 91NIV
1 Whoever dwells in the shelter of
the Most High
will rest in the shadow of the Almighty.[a]
2 I will say of the Lord, “He is my refuge and my fortress,
my God, in whom I trust.”
will rest in the shadow of the Almighty.[a]
2 I will say of the Lord, “He is my refuge and my fortress,
my God, in whom I trust.”
3 Surely he will save you
from the fowler’s snare
and from the deadly pestilence.
4 He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
5 You will not fear the terror of night,
nor the arrow that flies by day,
6 nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
7 A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
8 You will only observe with your eyes
and see the punishment of the wicked.
from the fowler’s snare
and from the deadly pestilence.
4 He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
5 You will not fear the terror of night,
nor the arrow that flies by day,
6 nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
7 A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
8 You will only observe with your eyes
and see the punishment of the wicked.
9 If you say, “The Lord is my
refuge,”
and you make the Most High your dwelling,
10 no harm will overtake you,
no disaster will come near your tent.
11 For he will command his angels concerning you
to guard you in all your ways;
12 they will lift you up in their hands,
so that you will not strike your foot against a stone.
13 You will tread on the lion and the cobra;
you will trample the great lion and the serpent.
and you make the Most High your dwelling,
10 no harm will overtake you,
no disaster will come near your tent.
11 For he will command his angels concerning you
to guard you in all your ways;
12 they will lift you up in their hands,
so that you will not strike your foot against a stone.
13 You will tread on the lion and the cobra;
you will trample the great lion and the serpent.
14 “Because he loves me,” says the Lord, “I will rescue
him;
I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life I will satisfy him
and show him my salvation.”
I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life I will satisfy him
and show him my salvation.”
